1 00:00:05,520 --> 00:00:20,520 >>WELCOME 2 00:00:20,520 --> 00:00:23,640 -- IN PERSON AND VIRTUAL 3 00:00:23,640 --> 00:00:28,080 ATTENDEES AND JOINING US FOR THE 4 00:00:28,080 --> 00:00:28,320 WORKSHOP. 5 00:00:28,320 --> 00:00:31,840 I'M SASKIA HENDRIKS AND FACULTY 6 00:00:31,840 --> 00:00:33,520 MEMBER IN THE DEPARTMENT OF 7 00:00:33,520 --> 00:00:35,760 BIOETHICS AT NIH. 8 00:00:35,760 --> 00:00:37,920 AS MANY MAY KNOW THE NEUROETHICS 9 00:00:37,920 --> 00:00:39,400 WORKING GROUP IS NOT A FORMAL 10 00:00:39,400 --> 00:00:40,200 ADVISORY GROUP. 11 00:00:40,200 --> 00:00:42,920 IT'S A WORKING GROUP OF OUR 12 00:00:42,920 --> 00:00:44,280 ADVISORY COUNCIL SO THE NIH 13 00:00:44,280 --> 00:00:45,720 INSTITUTES AND CENTERS THAT 14 00:00:45,720 --> 00:00:46,280 PARTICIPATE IN THE BRAIN 15 00:00:46,280 --> 00:00:49,400 INITIATIVE AND WAS ESTABLISHED 16 00:00:49,400 --> 00:00:51,840 BECAUSE OF THE NEED FOR ETHICS 17 00:00:51,840 --> 00:00:52,840 CONSIDERATION SUPPORTED THROUGH 18 00:00:52,840 --> 00:00:57,320 THE BRAIN INITIATIVE. 19 00:00:57,320 --> 00:01:01,240 THE NEW DOCKETS AND DELIBERATE 20 00:01:01,240 --> 00:01:06,560 ON ETHICAL QUESTIONS THAT COME 21 00:01:06,560 --> 00:01:08,160 UP IN BRAIN RESEARCH AND SERVE 22 00:01:08,160 --> 00:01:10,000 AS THE FOUNDATION FOR TODAY. 23 00:01:10,000 --> 00:01:10,880 A FEW HOUSEKEEPING THINGS BEFORE 24 00:01:10,880 --> 00:01:11,600 WE GET STARTED. 25 00:01:11,600 --> 00:01:16,440 AS A REMINDER, THIS WORKSHOP IS 26 00:01:16,440 --> 00:01:19,480 BEING VIDEOCAST LIVE IN A PUBLIC 27 00:01:19,480 --> 00:01:21,800 DOMAIN AND RECORDING ARCHIVED 28 00:01:21,800 --> 00:01:23,280 LATER IN THE NIH AND BRAIN 29 00:01:23,280 --> 00:01:23,680 WEBSITE. 30 00:01:23,680 --> 00:01:26,000 DURING THE PRESENTATIONS WE ASK 31 00:01:26,000 --> 00:01:27,720 VIRTUAL ATTENDEES MUTE YOUR LINE 32 00:01:27,720 --> 00:01:29,960 AND TURN OF OUR VIDEO WHEN NOT 33 00:01:29,960 --> 00:01:30,240 SPEAKING. 34 00:01:30,240 --> 00:01:31,960 THIS IS HELPFUL FOR THE 35 00:01:31,960 --> 00:01:32,240 VIDEOCAST. 36 00:01:32,240 --> 00:01:33,920 WE ASK OUR SPEAKER TO KEEP TRACK 37 00:01:33,920 --> 00:01:38,280 OF THEIR OWN TIME SO WE HAVE 38 00:01:38,280 --> 00:01:38,840 ENOUGH TIME FOR DISCUSSIONS. 39 00:01:38,840 --> 00:01:42,560 DURING THE DISCUSSIONS, TO ASK 40 00:01:42,560 --> 00:01:53,080 QUESTIONS, THE IN COMPLIANCE IN 41 00:02:06,640 --> 00:02:15,200 PERSON AND IF THERE'S TECHNOLOGY 42 00:02:15,200 --> 00:02:17,160 PROBLEMS CONTACT DEREK SMITH. 43 00:02:17,160 --> 00:02:18,600 WE'LL INCLUDE HIS CONTACT 44 00:02:18,600 --> 00:02:20,760 INFORMATION IN THE CHAT. 45 00:02:20,760 --> 00:02:22,600 I KNOW EVERYONE IS VERY BUSY AND 46 00:02:22,600 --> 00:02:23,760 WE APPRECIATE YOUR TIME AND 47 00:02:23,760 --> 00:02:24,480 INPUT TODAY. 48 00:02:24,480 --> 00:02:26,280 NONE OF THIS WOULD HAVE BEEN 49 00:02:26,280 --> 00:02:27,600 POSSIBLE WITHOUT THE FABULOUS 50 00:02:27,600 --> 00:02:33,600 TEAM WE HAVE AT NIH AND I 51 00:02:33,600 --> 00:02:40,200 ESPECIALLY WANT TO THANK OUR 52 00:02:40,200 --> 00:02:42,600 LOGISTICS TEAM AND LAST BUT NOT 53 00:02:42,600 --> 00:02:47,000 LEAST OUR BRAIN DEPUTY DIRECTOR 54 00:02:47,000 --> 00:02:50,280 AND DR. NGAI FOR THEIR SUPPORT 55 00:02:50,280 --> 00:02:52,160 OF NEUROETHICS. 56 00:02:52,160 --> 00:02:53,440 I'M TURNING IT OVER TO LEAD US 57 00:02:53,440 --> 00:02:54,600 INTO TODAY. 58 00:02:54,600 --> 00:02:58,400 THANK YOU FOR JOINING. 59 00:02:58,400 --> 00:03:01,400 >>THANK YOU, SASKIA AND THANK 60 00:03:01,400 --> 00:03:02,560 YOU EVERYBODY FOR JOINING IN TO 61 00:03:02,560 --> 00:03:03,920 DAY TWO OF THE WORKSHOP. 62 00:03:03,920 --> 00:03:10,160 WE WANT TO GIVE A RECAP AND 63 00:03:10,160 --> 00:03:14,280 FRAMING FOR DAY TWO. 64 00:03:14,280 --> 00:03:16,360 I'LL DO A RECAP FOR THOSE NEW 65 00:03:16,360 --> 00:03:17,920 AND JOINING US TODAY AND THEN 66 00:03:17,920 --> 00:03:21,160 I'LL HAND IT OVER TO MY CO-CHAIR 67 00:03:21,160 --> 00:03:22,000 CHRISTINE WHO WILL TALK ABOUT 68 00:03:22,000 --> 00:03:22,720 FRAMING OR OUR CONVERSATIONS FOR 69 00:03:22,720 --> 00:03:28,160 DAY TWO. 70 00:03:28,160 --> 00:03:30,600 THE DESCRIBE AND HOPE OF THE 71 00:03:30,600 --> 00:03:33,840 WORKSHOP IS TO HAVE A BETTER 72 00:03:33,840 --> 00:03:34,440 FACTUAL AND EVIDENCE-BASED 73 00:03:34,440 --> 00:03:35,800 GROUNDING FOR THE RISK AND 74 00:03:35,800 --> 00:03:42,200 UNIQUE RISK THAT MAY RISE FROM 75 00:03:42,200 --> 00:03:45,520 SHARING OF BRAIN DATA TO HAVE 76 00:03:45,520 --> 00:03:46,160 APPROPRIATE DEFINITION OF BRAIN 77 00:03:46,160 --> 00:03:49,080 DATA FOR PURPOSES OF SHARING AND 78 00:03:49,080 --> 00:03:52,320 TWO, BE ABLE TO THINK WHAT 79 00:03:52,320 --> 00:03:57,280 CONCRETE RECOMMENDATIONS WE CAN 80 00:03:57,280 --> 00:04:07,800 DEVELOP OR WHAT AND BENEFITS 81 00:04:14,400 --> 00:04:17,400 ARISE FROM DATA SHARING. 82 00:04:17,400 --> 00:04:23,280 WE HAVE TECHNOLOGIES PART OF THE 83 00:04:23,280 --> 00:04:26,520 PURVIEW OF THE CONVERSATION. 84 00:04:26,520 --> 00:04:29,280 PANELISTS GAVE US INTO FMRI, 85 00:04:29,280 --> 00:04:31,880 DEEP BRAIN STIMULATION AND BRAIN 86 00:04:31,880 --> 00:04:32,160 INTERFACE. 87 00:04:32,160 --> 00:04:34,240 THE KINDS OF DATA COLLECTED IN 88 00:04:34,240 --> 00:04:36,440 EACH OF THOSE MODALITIES AND THE 89 00:04:36,440 --> 00:04:39,560 KINDS OF INFERENCES THAT CAN BE 90 00:04:39,560 --> 00:04:40,000 DRAWN. 91 00:04:40,000 --> 00:04:45,440 THE PURPOSE WAS TO HAVE A COMMON 92 00:04:45,440 --> 00:04:53,320 SET OF LANGUAGE AN WHAT ARE THE 93 00:04:53,320 --> 00:04:55,080 KINDS OF INFERENCE COULD BE 94 00:04:55,080 --> 00:04:57,920 DRAWN THAT COULD BE USED FOR 95 00:04:57,920 --> 00:04:58,760 POTENTIALLY MISUSED AGAINST 96 00:04:58,760 --> 00:05:00,400 INDIVIDUALS FOR PURPOSES OF 97 00:05:00,400 --> 00:05:00,920 UNDERSTANDING WHAT 98 00:05:00,920 --> 00:05:02,560 RECOMMENDATIONS WOULD ARISE FROM 99 00:05:02,560 --> 00:05:03,640 THE SHARING OF IT. 100 00:05:03,640 --> 00:05:10,600 WE'LL THEN TURN TO LOOKING AT 101 00:05:10,600 --> 00:05:14,080 INFERENCES EMERGING FROM 102 00:05:14,080 --> 00:05:16,480 TECHNOLOGY AND ALSO RECOGNIZING 103 00:05:16,480 --> 00:05:19,280 THERE'S MULTI-MODALITY OF 104 00:05:19,280 --> 00:05:21,440 SENSORS BEING DEVELOPED AND 105 00:05:21,440 --> 00:05:23,640 DEPLOYED AND TOGETHER PROVIDE 106 00:05:23,640 --> 00:05:25,720 INFERENCES THAT MAY GO BEYOND 107 00:05:25,720 --> 00:05:27,600 WHAT IS BOTH CURRENTLY POSSIBLE 108 00:05:27,600 --> 00:05:30,080 AND GIVE A MORE ACCURATE OR 109 00:05:30,080 --> 00:05:31,320 PRECISE PICTURE OF WHAT A PERSON 110 00:05:31,320 --> 00:05:34,560 MAY BE FEELING OR THINKING OR 111 00:05:34,560 --> 00:05:36,600 INTENDING WITH RESPECT TO 112 00:05:36,600 --> 00:05:37,800 ACTIONS AND MOVEMENT. 113 00:05:37,800 --> 00:05:39,120 ALL THIS WITH THE UNDERSTANDING 114 00:05:39,120 --> 00:05:40,320 THAT WHAT WE'RE GETTING AT WHEN 115 00:05:40,320 --> 00:05:42,960 WE GET TO BRAIN DATA OR WHAT MAY 116 00:05:42,960 --> 00:05:45,240 BE INFERRED FROM BRAIN DATA MAY 117 00:05:45,240 --> 00:05:46,840 BE DIFFERENT IN KIND THAN OTHER 118 00:05:46,840 --> 00:05:48,880 KINDS OF HEALTH DATA CAPTURED IN 119 00:05:48,880 --> 00:05:49,280 THE PAST. 120 00:05:49,280 --> 00:05:51,320 NOT DIFFERENT IN KINDS FROM OUR 121 00:05:51,320 --> 00:05:53,080 KINDS OF DATA GIVEN MANY KINDS 122 00:05:53,080 --> 00:05:56,280 OF DATA FROM DIGITAL TRACES TO 123 00:05:56,280 --> 00:05:59,840 THE KINDS OF INFERENCES BEING 124 00:05:59,840 --> 00:06:03,400 DRAWN ABOUT INDIVIDUALS, THE 125 00:06:03,400 --> 00:06:05,400 PSYCHO GENIC PROFILES BASED ON 126 00:06:05,400 --> 00:06:07,520 PEOPLE'S ONLINE ACTIVITIES 127 00:06:07,520 --> 00:06:08,760 DESIGN TO BETTER UNDERSTAND 128 00:06:08,760 --> 00:06:11,520 PEOPLE'S BRAINS AND MENTAL 129 00:06:11,520 --> 00:06:19,640 EXPERIENCES BUT USING SENSORS, 130 00:06:19,640 --> 00:06:22,560 METRICS, FMRI AND IMPLANT 131 00:06:22,560 --> 00:06:26,280 TECHNOLOGY MAY GET TO GET TO THE 132 00:06:26,280 --> 00:06:28,640 PSYCHO GENIC PROFILES FROM 133 00:06:28,640 --> 00:06:30,520 INDIVIDUALS AT WHAT THEY'RE 134 00:06:30,520 --> 00:06:32,960 THINKING AND FEELING AND 135 00:06:32,960 --> 00:06:36,240 UNEXPRESSED EMOTIONS AN THOUGHTS 136 00:06:36,240 --> 00:06:38,560 KEPT DEEPLY INWARD BUT COULD BE 137 00:06:38,560 --> 00:06:40,160 REVEALED BY THIS TECHNOLOGY. 138 00:06:40,160 --> 00:06:43,360 WE THEN TURN TO LOOKING AT THE 139 00:06:43,360 --> 00:06:44,760 FIRST PANEL DIVING INTO 140 00:06:44,760 --> 00:06:46,600 POTENTIAL RISK THAT MAY ARISE IN 141 00:06:46,600 --> 00:06:50,280 PARTICULAR AT RISK TO 142 00:06:50,280 --> 00:06:55,560 COMMUNITIES AND ABOUT THE 143 00:06:55,560 --> 00:06:58,560 INCLUSIVITY OR LACK OF 144 00:06:58,560 --> 00:07:01,160 INCLUSIVITY AND THE LACK OF 145 00:07:01,160 --> 00:07:02,560 BRAIN DATA FOR THE EXCLUSION AND 146 00:07:02,560 --> 00:07:05,320 IMPACT IT HAS ON INDIVIDUALS WHO 147 00:07:05,320 --> 00:07:06,960 ARE NOT INVITED TO PARTICIPATE 148 00:07:06,960 --> 00:07:09,800 OR FACE HURDLES IN PARTICIPATION 149 00:07:09,800 --> 00:07:10,560 OF RESEARCH. 150 00:07:10,560 --> 00:07:13,760 THE IMPLICATIONS IT MAY HAVE FOR 151 00:07:13,760 --> 00:07:17,600 THE VALIDITY OF THE BIAS OF DATA 152 00:07:17,600 --> 00:07:19,680 AND THE RISK OF THE APPLICATIONS 153 00:07:19,680 --> 00:07:24,240 WITHOUT THE FULL SPECTRUM AND 154 00:07:24,240 --> 00:07:24,960 LOOKING AT INDIGENOUS 155 00:07:24,960 --> 00:07:28,280 COMMUNITIES AND WHAT COMES FROM 156 00:07:28,280 --> 00:07:29,840 THE COLLECTION OF SENSITIVE DATA 157 00:07:29,840 --> 00:07:31,360 AND CONCERNS OF THE ONGOING USE 158 00:07:31,360 --> 00:07:33,000 OF THAT DATA AND POTENTIAL 159 00:07:33,000 --> 00:07:36,960 QUESTIONS ABOUT THE ABILITY TO 160 00:07:36,960 --> 00:07:43,640 REPATRIATE THAT DATA AND THE 161 00:07:43,640 --> 00:07:44,600 RECOGNITION EACH CREATES 162 00:07:44,600 --> 00:07:45,360 STAKEHOLDERS THAT NEED TO BE AT 163 00:07:45,360 --> 00:07:47,560 THE TABLE IN THINKING ABOUT 164 00:07:47,560 --> 00:07:48,960 RECOMMENDATIONS THEY MAY DEVELOP 165 00:07:48,960 --> 00:07:50,800 OR ARISE AS A RESULT. 166 00:07:50,800 --> 00:07:51,920 THAT'S WHERE WE LEFT THINGS 167 00:07:51,920 --> 00:07:52,200 YESTERDAY. 168 00:07:52,200 --> 00:07:55,440 I'LL HAND IT OVER TO CHRISTINE 169 00:07:55,440 --> 00:07:58,800 TO TALK HOW WE BUILD TOWARDS 170 00:07:58,800 --> 00:08:02,320 THAT AND OUR FRAMING FOR 171 00:08:02,320 --> 00:08:08,320 CONVERSATIONS TODAY. 172 00:08:08,320 --> 00:08:10,480 >>I WANT TO THANK SASKIA 173 00:08:10,480 --> 00:08:10,720 HERSELF. 174 00:08:10,720 --> 00:08:12,760 MY JOB IS TO FRAME WHAT WE'LL DO 175 00:08:12,760 --> 00:08:16,160 TODAY AND BUILDING ON WHAT WAS 176 00:08:16,160 --> 00:08:18,160 SUMMARIZED WE HAVE NOW LEARNED 177 00:08:18,160 --> 00:08:20,240 ABOUT A NUMBER OF RISKS AND 178 00:08:20,240 --> 00:08:22,200 INFERENCES OR INFERENCES THAT 179 00:08:22,200 --> 00:08:25,760 CAN BE MADE FROM DATA COLLECTED 180 00:08:25,760 --> 00:08:26,800 IN BRAIN RESEARCH. 181 00:08:26,800 --> 00:08:28,040 SOME OF WHICH PRESENT RISKS TO 182 00:08:28,040 --> 00:08:30,840 INDIVIDUALS AND TO GROUNZ. 183 00:08:30,840 --> 00:08:31,680 -- GROUPS. 184 00:08:31,680 --> 00:08:36,880 OUR TASK IS TO GO FROM THAT SORT 185 00:08:36,880 --> 00:08:38,400 OF UNDERSTANDING TO FIGURING OUT 186 00:08:38,400 --> 00:08:40,960 WHETHER OR NOT THE RISKS SHOULD 187 00:08:40,960 --> 00:08:42,560 BE TREATED DIFFERENTLY WHETHER 188 00:08:42,560 --> 00:08:44,120 THEY'RE DIFFERENT ENOUGH IN 189 00:08:44,120 --> 00:08:45,840 PROBABILITY OR MAGNITUDE WE 190 00:08:45,840 --> 00:08:46,840 SHOULD TREAT THEM DIFFERENTLY 191 00:08:46,840 --> 00:08:49,320 AND IF SO, HOW TO TREAT THEM 192 00:08:49,320 --> 00:08:49,640 DIFFERENTLY. 193 00:08:49,640 --> 00:08:50,560 THAT'S REALLY THE TASK FOR 194 00:08:50,560 --> 00:08:50,760 TODAY. 195 00:08:50,760 --> 00:08:54,600 BEFORE WE GET TO THAT, WE'RE 196 00:08:54,600 --> 00:08:56,320 GOING DIVE A LITTLE BIT MORE 197 00:08:56,320 --> 00:08:57,560 DEEPLY INTO SOME INDIVIDUAL RISK 198 00:08:57,560 --> 00:08:59,800 AND SO THE FIRST PANEL WE HAVE 199 00:08:59,800 --> 00:09:03,040 THIS MORNING IS GOING TO HELP US 200 00:09:03,040 --> 00:09:05,040 CONTINUE TO TALK ABOUT THE RISKS 201 00:09:05,040 --> 00:09:06,160 TO INDIVIDUALS WHO ARE 202 00:09:06,160 --> 00:09:08,320 PARTICIPANTS IN RESEARCH. 203 00:09:08,320 --> 00:09:10,240 WE TALKED ABOUT THAT QUITE A BIT 204 00:09:10,240 --> 00:09:10,960 YESTERDAY BUT THIS WILL BUILD 205 00:09:10,960 --> 00:09:13,880 WHAT WE LEARNED AND DISCUSSED 206 00:09:13,880 --> 00:09:14,200 YESTERDAY. 207 00:09:14,200 --> 00:09:15,520 THEN WE'RE GOING TO HAVE ANOTHER 208 00:09:15,520 --> 00:09:18,120 PANEL WHICH IS GOING TO BE 209 00:09:18,120 --> 00:09:19,680 ACTUAL PARTICIPANTS THEMSELVES 210 00:09:19,680 --> 00:09:21,720 AND DATA THAT'S COLLECTED FROM 211 00:09:21,720 --> 00:09:22,560 PARTICIPANTS TO TRY TO 212 00:09:22,560 --> 00:09:24,400 UNDERSTAND THE PERSPECTIVE THAT 213 00:09:24,400 --> 00:09:28,760 THEY BRING TO THE TABLE IN 214 00:09:28,760 --> 00:09:29,640 UNDERSTANDING WHAT THE RISKS ARE 215 00:09:29,640 --> 00:09:31,400 AND WHAT WE DO ABOUT THE RISKS 216 00:09:31,400 --> 00:09:36,000 AND HOW DO WE DEAL WITH THEM. 217 00:09:36,000 --> 00:09:37,640 LATER WE'LL BREAK INTO SMALL 218 00:09:37,640 --> 00:09:39,560 GROUPS AND TRY IN THE SMALL 219 00:09:39,560 --> 00:09:42,520 GROUPS TO DECIDE TWO THINGS 220 00:09:42,520 --> 00:09:45,040 BASICALLY, IS THERE A SORT OF 221 00:09:45,040 --> 00:09:49,880 CLASSIFICATION OR SPECTRUM OF 222 00:09:49,880 --> 00:09:51,320 RISK WE WANT TO SORT OF START 223 00:09:51,320 --> 00:09:53,440 WITH AND IF THERE IS, OR EVEN IF 224 00:09:53,440 --> 00:09:56,080 THERE ISN'T, WHAT ARE THE KINDS 225 00:09:56,080 --> 00:10:00,840 OF SAFEGUARDS WE SHOULD BE 226 00:10:00,840 --> 00:10:01,600 TALKING ABOUT TO PROTECT 227 00:10:01,600 --> 00:10:02,320 INDIVIDUAL AND COMMUNITIES FROM 228 00:10:02,320 --> 00:10:03,560 THE RISKS WE'VE BEEN TALKING 229 00:10:03,560 --> 00:10:06,280 ABOUT THE LAST FEW DAYS. 230 00:10:06,280 --> 00:10:08,280 THAT'S THE GOAL OF TODAY. 231 00:10:08,280 --> 00:10:09,760 I'M HOPING BY END OF TODAY WE'LL 232 00:10:09,760 --> 00:10:10,600 HAVE GREAT IDEAS FOR WHERE TO 233 00:10:10,600 --> 00:10:18,240 PROCEED. 234 00:10:18,240 --> 00:10:19,120 >>THANK YOU. 235 00:10:19,120 --> 00:10:20,360 SO WITH THAT LET ME INTRODUCE 236 00:10:20,360 --> 00:10:23,520 OUR FIRST PANEL FOR TODAY. 237 00:10:23,520 --> 00:10:26,120 SASKIA SAID THE PANEL WILL BE 238 00:10:26,120 --> 00:10:28,840 FOCUSSED ON INDIVIDUAL RISKS. 239 00:10:28,840 --> 00:10:31,280 WE'RE FORTUNATE TO BE JOINED BY 240 00:10:31,280 --> 00:10:33,080 TWO EXCELLENT SPEAKERS. 241 00:10:33,080 --> 00:10:35,000 THE FIRST WILL FOCUS ON THE RISK 242 00:10:35,000 --> 00:10:37,720 OF RE-IDENTIFICATION AS 243 00:10:37,720 --> 00:10:38,560 DISCUSSED YESTERDAY IDENTIFYING 244 00:10:38,560 --> 00:10:42,560 INDIVIDUALS FACILITATES AND MAY 245 00:10:42,560 --> 00:10:44,840 BE NECESSARY FOR SEVERAL OF THE 246 00:10:44,840 --> 00:10:46,400 INDIVIDUAL RISK WE MIGHT CARE 247 00:10:46,400 --> 00:10:46,600 ABOUT. 248 00:10:46,600 --> 00:10:57,120 JOIN ME IN WELCOMING DR. RUSSELL 249 00:10:58,200 --> 00:11:01,960 POLDRACK FROM THE UNIVERSITY OF 250 00:11:01,960 --> 00:11:05,440 HARVARD AND RESEARCH FOCUSES ON 251 00:11:05,440 --> 00:11:06,320 UNDERSTANDING HOW THE BRAIN 252 00:11:06,320 --> 00:11:09,720 GIVES RISE TO ADAPTIVE HUMAN 253 00:11:09,720 --> 00:11:12,800 BEHAVIORS USING A COMBINATION OF 254 00:11:12,800 --> 00:11:15,400 COGNITIVE PSYCHOLOGY AND 255 00:11:15,400 --> 00:11:16,280 COMPUTATIONAL TECHNIQUES. 256 00:11:16,280 --> 00:11:18,000 HIS LAB ALSO DEVELOPED TOOLS AND 257 00:11:18,000 --> 00:11:19,560 INFRASTRUCTURE TO MAKE 258 00:11:19,560 --> 00:11:20,360 NEUROSCIENCE MORE TRANSPARENT 259 00:11:20,360 --> 00:11:23,120 AND REPRODUCIBLE. 260 00:11:23,120 --> 00:11:30,560 WE LOOK FORWARD TO YOUR TALK. 261 00:11:30,560 --> 00:11:40,920 >>THANKS VERY MUCH. 262 00:11:52,720 --> 00:11:58,560 IS ARE YOU SEEING MY SLIDES. 263 00:11:58,560 --> 00:12:00,680 >>WE ARE BUT IT'S NOT WORKING 264 00:12:00,680 --> 00:12:01,440 WELL IN FULL LOCATION. 265 00:12:01,440 --> 00:12:06,560 >>I DON'T KNOW WHAT THAT MEANS. 266 00:12:06,560 --> 00:12:16,840 >>IT'S TOO BIG. 267 00:12:39,760 --> 00:12:42,880 >>DO YOU HAVE THE GOOGLE 268 00:12:42,880 --> 00:12:49,160 SLIDES? 269 00:12:49,160 --> 00:12:53,200 >>WE HAVE THE PDF DECK 270 00:12:53,200 --> 00:12:54,760 >>IT'S CHANGED SINCE THEN. 271 00:12:54,760 --> 00:12:57,320 >>LAUNCH FULL SCREEN AND WE CAN 272 00:12:57,320 --> 00:13:07,800 SEE THE CENTER OF THE DECK. 273 00:13:19,920 --> 00:13:20,960 >>THANKS. 274 00:13:20,960 --> 00:13:23,040 SORRY I MISSED YESTERDAY AND 275 00:13:23,040 --> 00:13:25,600 HOPEFULLY WHAT I'M SAYING ISN'T 276 00:13:25,600 --> 00:13:27,440 GOING TO RETREAD TOO MUCH BUT 277 00:13:27,440 --> 00:13:34,080 FOCUS IN ON THE RISK OF 278 00:13:34,080 --> 00:13:35,320 RE-IDENTIFICATION IN NEURO 279 00:13:35,320 --> 00:13:38,080 RESEARCH AND WE RUN A PROJECT 280 00:13:38,080 --> 00:13:40,840 CALLED OPEN NEURO ONE OF THE 281 00:13:40,840 --> 00:13:42,120 DATA INITIATIVE DATA ARCHIVES 282 00:13:42,120 --> 00:13:44,160 FOCUSSED ON SHARING A BROAD 283 00:13:44,160 --> 00:13:50,560 RANGE OF DATA MOSTLY HUMAN NEURO 284 00:13:50,560 --> 00:13:51,720 IMAGING DATA IN AN OPEN WAY WITH 285 00:13:51,720 --> 00:13:54,560 NO RESTRICTIONS ON ACCESS. 286 00:13:54,560 --> 00:13:55,800 OBVIOUSLY THE QUESTIONS TO BE 287 00:13:55,800 --> 00:13:56,600 RAISED IN THIS MEETING ARE 288 00:13:56,600 --> 00:13:58,160 RELEVANT TO US IN THINKING HOW 289 00:13:58,160 --> 00:14:01,600 WE GO FORWARD WITH THE SHARING 290 00:14:01,600 --> 00:14:01,880 OF DATA. 291 00:14:01,880 --> 00:14:04,440 I WANT TO MENTION THE WORK I'LL 292 00:14:04,440 --> 00:14:08,720 TALK ABOUT TODAY IS DRIVEN BY 293 00:14:08,720 --> 00:14:10,560 ANNIE SCHAUB AND IN 294 00:14:10,560 --> 00:14:15,720 COLLABORATION WITH THE COMPUTER 295 00:14:15,720 --> 00:14:19,440 SCIENCE DEPARTMENT AT STANFORD. 296 00:14:19,440 --> 00:14:21,680 WHEN I THINK OF RISK 297 00:14:21,680 --> 00:14:22,560 RE-IDENTIFICATION FROM THE 298 00:14:22,560 --> 00:14:27,360 STANDPOINT OF SOMETHING LIKE 299 00:14:27,360 --> 00:14:35,760 EXPECTED UTILITY THEORY WHEN WE 300 00:14:35,760 --> 00:14:37,680 THINK OF THE VALUE OF 301 00:14:37,680 --> 00:14:41,120 RE-IDENTIFICATION WE HAVE TO 302 00:14:41,120 --> 00:14:42,480 THINK ABOUT THE PROBABILITY AND 303 00:14:42,480 --> 00:14:44,160 MAGNITUDE OF OUTCOME. 304 00:14:44,160 --> 00:14:47,720 THAT SHOULD DRIVE OUR DECISION. 305 00:14:47,720 --> 00:14:51,960 I'LL FOCUS ON THE LIKELIHOOD AND 306 00:14:51,960 --> 00:14:54,000 MAGNITUDE OF POTENTIAL HARM DUE 307 00:14:54,000 --> 00:14:56,040 TO RE-IDENTIFICATION AND HOW WE 308 00:14:56,040 --> 00:14:57,280 DEAL WITH THAT. 309 00:14:57,280 --> 00:14:58,560 AS YOU MAY HAVE ALREADY 310 00:14:58,560 --> 00:14:59,760 DISCUSSED, IF WE'RE THINKING HOW 311 00:14:59,760 --> 00:15:04,480 DO YOU TAKE A BRAIN IMAGING DATA 312 00:15:04,480 --> 00:15:07,800 SET AND RE-IDENTIFY THE 313 00:15:07,800 --> 00:15:11,960 INDIVIDUAL THE DATA HAS BEEN 314 00:15:11,960 --> 00:15:14,320 STRIPPED OF THE USUAL IDENT 315 00:15:14,320 --> 00:15:18,000 IDENTIFIERS AND OWN THE 316 00:15:18,000 --> 00:15:20,200 STRUCTURAL MRI YOU SEE IS THE 317 00:15:20,200 --> 00:15:21,920 STRUCTURE IN THE FACE THAT WOULD 318 00:15:21,920 --> 00:15:23,840 ALLOW ONE TO RENDER A 3-D IMAGE 319 00:15:23,840 --> 00:15:27,520 OF THE HEAD AND FACE. 320 00:15:27,520 --> 00:15:30,160 FUNCTIONAL MRI ON ITS OWN 321 00:15:30,160 --> 00:15:32,160 DOESN'T CONTAIN MUCH FACIAL 322 00:15:32,160 --> 00:15:34,000 STRUCTURE AT ALL BUT STRUCTURAL 323 00:15:34,000 --> 00:15:34,520 MRI DEFINITELY DOES. 324 00:15:34,520 --> 00:15:38,480 HERE'S A RENDERING OF MY FACE 325 00:15:38,480 --> 00:15:40,800 FROM MY OWN MRI DATA AND YOU'LL 326 00:15:40,800 --> 00:15:42,560 NOTICE IT'S NOT GREAT. 327 00:15:42,560 --> 00:15:44,840 IN THIS CASE MY NOSE IS SORT OF 328 00:15:44,840 --> 00:15:50,040 CUT OFF AND WE ONLY DO GOWN TO 329 00:15:50,040 --> 00:15:51,880 MY BOTTOM LIP AND HIGHLIGHTS THE 330 00:15:51,880 --> 00:15:53,800 LIMITS OF FACE RECONSTRUCTION 331 00:15:53,800 --> 00:15:57,280 FOR USUAL BRAIN IMAGING DATA AND 332 00:15:57,280 --> 00:16:06,560 MANY RESEARCH STUDIES DON'T 333 00:16:06,560 --> 00:16:09,000 OBTAIN AN IMAGE OF A FACE AND TO 334 00:16:09,000 --> 00:16:10,520 HIGHLIGHT THE FACT THERE'S 335 00:16:10,520 --> 00:16:12,920 LIMITS ON THE AVAILABILITY OF 336 00:16:12,920 --> 00:16:18,040 THE STRUCTURE THAT ONE MIGHT 337 00:16:18,040 --> 00:16:19,440 NEED. 338 00:16:19,440 --> 00:16:30,000 NONETHELESS, WE REMOVE THIS FROM 339 00:16:32,600 --> 00:16:36,160 THE STRUCTURAL IMAGES AND ON THE 340 00:16:36,160 --> 00:16:38,160 LEFT IS FACIAL RECONSTRUCTION 341 00:16:38,160 --> 00:16:39,760 FROM INPUT MRI. 342 00:16:39,760 --> 00:16:42,600 IN THIS PARTICULAR DATA SET THIS 343 00:16:42,600 --> 00:16:44,600 IS USING A TYPE OF DATA VERY 344 00:16:44,600 --> 00:16:47,800 GOOD AT RECONSTRUCTING DATA 345 00:16:47,800 --> 00:16:49,160 STRUCTURE YOU CAN GET A 346 00:16:49,160 --> 00:16:51,960 REALISTIC IMAGE OF A FACE AND 347 00:16:51,960 --> 00:16:58,560 THERE'S TOOLS, MY LAB DEVELOPED 348 00:16:58,560 --> 00:17:03,400 ONE THAT BASICALLY ERODE PART OF 349 00:17:03,400 --> 00:17:05,280 THE FACIAL STRUCTURE SO AS TO 350 00:17:05,280 --> 00:17:08,360 TRY TO DEFEAT ABILITY TO 351 00:17:08,360 --> 00:17:15,040 RECONSTRUCT THE FACE. 352 00:17:15,040 --> 00:17:17,240 NONETHELESS, THE TECHNIQUES ARE 353 00:17:17,240 --> 00:17:20,360 NOT FULLY EFFECTIVE AT 354 00:17:20,360 --> 00:17:21,720 COMPLETELY DEFEATING THE 355 00:17:21,720 --> 00:17:26,360 POTENTIAL FOR RE-IDENTIFICATION. 356 00:17:26,360 --> 00:17:28,120 THEY LOOKED AT WHAT HAPPENED IF 357 00:17:28,120 --> 00:17:30,880 YOU TAKE DATA DEFACED AND 358 00:17:30,880 --> 00:17:33,320 RECONSTRUCTED OR BUILT A TOOL 359 00:17:33,320 --> 00:17:38,720 CALLED MRI DEFACE THAT BASICALLY 360 00:17:38,720 --> 00:17:42,200 IMPUTES AND REFACES THE IMAGE 361 00:17:42,200 --> 00:17:47,720 AND TAKES AN AVERAGE AND FILLS 362 00:17:47,720 --> 00:17:54,600 IN THIS AREA AND SUBMITS THOSE 363 00:17:54,600 --> 00:17:57,800 USING DEEP LEARNING AND WITH 364 00:17:57,800 --> 00:18:04,280 WITH NON-ZERO ACCURACY YOU CAN 365 00:18:04,280 --> 00:18:05,680 MATCH THE RECONSTRUCTION WITH 366 00:18:05,680 --> 00:18:08,360 THE FACIAL PHOTO WHEN IT HASN'T 367 00:18:08,360 --> 00:18:09,000 BEEN DEFACED. 368 00:18:09,000 --> 00:18:14,360 WHEN IT HAS, YOU CAN GET ABOVE 369 00:18:14,360 --> 00:18:17,440 ZERO ACCURACY AND THAT'S 370 00:18:17,440 --> 00:18:18,360 PROBABLY RELYING ON INFORMATION 371 00:18:18,360 --> 00:18:20,960 ABOUT THE BROW, THE EYES, MAYBE 372 00:18:20,960 --> 00:18:22,320 THE SHAPE OF THE HEAD. 373 00:18:22,320 --> 00:18:26,360 THERE'S STILL A DECENT AMOUNT OF 374 00:18:26,360 --> 00:18:33,800 INFORMATION REMAINING THERE. 375 00:18:33,800 --> 00:18:35,680 TO DO RESEARCH YOU NEED MRI 376 00:18:35,680 --> 00:18:38,200 IMAGES AND FACIAL PHOTOS AND WE 377 00:18:38,200 --> 00:18:40,680 DON'T USUALLY TAKE FACIAL 378 00:18:40,680 --> 00:18:41,080 PHOTOS. 379 00:18:41,080 --> 00:18:44,920 THEY TOOK THE DATA AND SET UP 380 00:18:44,920 --> 00:18:47,200 157 PEOPLE WITH MRI AND FACIAL 381 00:18:47,200 --> 00:18:48,800 PHOTOS AND THAT RAISED THE 382 00:18:48,800 --> 00:18:50,800 QUESTION HOW IT WAS SCALED TO 383 00:18:50,800 --> 00:18:54,000 REAL WORLD PROBLEMS. 384 00:18:54,000 --> 00:18:56,040 RE-IDENTIFICATION IS A 385 00:18:56,040 --> 00:18:56,600 MULTI-CLASS CLASSIFICATION 386 00:18:56,600 --> 00:18:58,320 PROBLEM WE WANT TO LOOK AT WHERE 387 00:18:58,320 --> 00:19:06,040 EACH INDIVIDUAL IS A CLASS. 388 00:19:06,040 --> 00:19:08,360 THE ACCURACY IS TIED TO THE 389 00:19:08,360 --> 00:19:10,400 NUMBER OF CLASSES AND KNOWN AT 390 00:19:10,400 --> 00:19:12,080 LEAST FOR LINEAR CLASSIFIERS IS 391 00:19:12,080 --> 00:19:13,400 KNOWN TO DECLINE AS A POWER 392 00:19:13,400 --> 00:19:13,920 FUNCTION OF THE NUMBER OF 393 00:19:13,920 --> 00:19:24,200 CLASSES. 394 00:19:24,200 --> 00:19:25,680 IT'S NOT CLEAR WHETHER THE 395 00:19:25,680 --> 00:19:30,800 INDIVIDUALS WHO WORK ON THIS WHO 396 00:19:30,800 --> 00:19:34,560 I TALKED TO AREN'T CLEAR HOW IT 397 00:19:34,560 --> 00:19:37,480 WILL SCALE AND TRYING TO GAIN 398 00:19:37,480 --> 00:19:39,800 LEATHER DATA SETS TO TEST WITH 399 00:19:39,800 --> 00:19:45,080 ARTIFICIAL NEURAL NETWORKS THE 400 00:19:45,080 --> 00:19:47,480 SIZE OF THE REAL WORLD 401 00:19:47,480 --> 00:19:49,840 POPULATIONS FOR SHARED DATA SETS 402 00:19:49,840 --> 00:19:55,160 IS LARGER THAN THE 157 403 00:19:55,160 --> 00:19:57,200 INDIVIDUALS IN THE SCHWARTS ET 404 00:19:57,200 --> 00:19:59,680 AL. AND YOU WANT TO KNOW THE 405 00:19:59,680 --> 00:20:02,360 POPULATION OF LIKELY INDIVIDUAL 406 00:20:02,360 --> 00:20:07,680 WHO'S COULD HAVE PARTICIPATED IF 407 00:20:07,680 --> 00:20:11,880 IT'S HEALTHY YOUNG ADULTS A SOME 408 00:20:11,880 --> 00:20:13,680 COULD BE IN THE POPULATION. 409 00:20:13,680 --> 00:20:17,720 WE PUT TOGETHER A SIMULATION TO 410 00:20:17,720 --> 00:20:20,560 LOOK AT GIVEN THE REPORTED 411 00:20:20,560 --> 00:20:25,320 ACCURACIES IN THE SMALL STUDY BY 412 00:20:25,320 --> 00:20:27,320 SCHWARTZ ET AL. HOW WOULD IT 413 00:20:27,320 --> 00:20:29,360 SCALE TO BE REALISTIC. 414 00:20:29,360 --> 00:20:31,960 WE TOOK UP TO 500,000 AND THE 415 00:20:31,960 --> 00:20:34,560 GUESSTIMATE WAS IF YOU GO TO A 416 00:20:34,560 --> 00:20:43,120 CITY WITH A MILLION PEOPLE YOU 417 00:20:43,120 --> 00:20:44,240 MIGHT HAVE 500,000. 418 00:20:44,240 --> 00:20:46,560 THAT MAY SCALE WITH THE SIZE OF 419 00:20:46,560 --> 00:20:49,280 THE LOCATION. 420 00:20:49,280 --> 00:20:52,640 IN THIS SIMULATION IF YOU TAKE 421 00:20:52,640 --> 00:20:54,200 THE HIGHER SIGNAL SIMULATION 422 00:20:54,200 --> 00:20:57,320 WHERE YOU REFACED THE IMAGES 423 00:20:57,320 --> 00:20:59,920 ACCURACY DROPS FROM 38.2% TO 424 00:20:59,920 --> 00:21:02,560 BELOW 1% ACCURACY AT A 425 00:21:02,560 --> 00:21:06,360 POPULATION SIZE OF 500,000 AND 426 00:21:06,360 --> 00:21:07,720 WITH THE LOWER SIGNAL NOISE 427 00:21:07,720 --> 00:21:14,600 SIMULATION IT GOES FROM 10.8% TO 428 00:21:14,600 --> 00:21:15,040 .04%. 429 00:21:15,040 --> 00:21:21,040 THESE ARE LOGGED COORDINATES ON 430 00:21:21,040 --> 00:21:22,560 BOTH AXES. 431 00:21:22,560 --> 00:21:31,720 IT DECREASES LINEAR IN SPACE. 432 00:21:31,720 --> 00:21:32,520 SO THERE'S A LOT OF CONCERN 433 00:21:32,520 --> 00:21:35,680 AMONG PEOPLE SHARING DATA ABOUT 434 00:21:35,680 --> 00:21:37,360 THE POTENTIAL USE OF A.I. USE 435 00:21:37,360 --> 00:21:39,320 RECOGNITION SYSTEM TO 436 00:21:39,320 --> 00:21:41,120 RE-IDENTIFIED PEOPLE BASED ON 437 00:21:41,120 --> 00:21:42,600 RECONSTRUCTION OF AN MRI IMAGE. 438 00:21:42,600 --> 00:21:44,280 WE'VE DONE DE FACING BUT IT'S 439 00:21:44,280 --> 00:21:46,520 CLEAR IT DOESN'T ELIMINATE THE 440 00:21:46,520 --> 00:21:51,040 POTENTIAL FOR RE-IDENTIFICATION. 441 00:21:51,040 --> 00:21:52,840 AT PRESENT WE DON'T KNOW THE 442 00:21:52,840 --> 00:21:55,240 LIKELIHOOD OF RE-IDENTIFICATION 443 00:21:55,240 --> 00:21:57,520 FOR LARGE COMMUNITY SAMPLES 444 00:21:57,520 --> 00:21:58,880 GIVEN THE LACK OF LARGE DATA 445 00:21:58,880 --> 00:22:00,880 SETS THAT CONTAIN FACE PHOTOS 446 00:22:00,880 --> 00:22:01,920 AND MRI IMAGES. 447 00:22:01,920 --> 00:22:04,520 WE'RE WORKING NOW TO BUILD SUCH 448 00:22:04,520 --> 00:22:06,120 A DATA SET. 449 00:22:06,120 --> 00:22:07,920 IN DISCUSSIONS WITH OUR PRIVACY 450 00:22:07,920 --> 00:22:14,280 OFFICE AND OTHERS THE DECISION 451 00:22:14,280 --> 00:22:16,880 HAS BEEN MADE AT PRESENT THE 452 00:22:16,880 --> 00:22:18,200 LIKELIHOOD OF IDENTIFICATION IS 453 00:22:18,200 --> 00:22:20,360 LOW ENOUGH TO STILL CONSIDER THE 454 00:22:20,360 --> 00:22:22,600 DATA TO BE NON-IDENTIFIABLE 455 00:22:22,600 --> 00:22:24,560 ACCORDING TO THE READILY 456 00:22:24,560 --> 00:22:25,160 ASCERTAINABLE STANDARD IN THE 457 00:22:25,160 --> 00:22:29,880 COMMON RULE. 458 00:22:29,880 --> 00:22:31,360 LET'S TALK ABOUT THE POTENTIAL 459 00:22:31,360 --> 00:22:31,960 HARMS. 460 00:22:31,960 --> 00:22:38,080 MOST THE DATA SETS IN THE OPEN 461 00:22:38,080 --> 00:22:45,920 NEURO DATABASE COME FROM 462 00:22:45,920 --> 00:22:48,200 COGNITIVE TASK AND A LITTLE 463 00:22:48,200 --> 00:22:50,360 METADATA. 464 00:22:50,360 --> 00:22:53,200 THEY MAY HAVE METADATA ON 465 00:22:53,200 --> 00:22:54,840 GENDER, AGE, MAYBE COGNITIVE 466 00:22:54,840 --> 00:22:55,200 TEST SCORES. 467 00:22:55,200 --> 00:22:58,560 THAT LEADS US TO THINK THE 468 00:22:58,560 --> 00:23:00,080 POTENTIAL HARM -- IF THE DATA 469 00:23:00,080 --> 00:23:06,080 WAS RE-IDENTIFIED THE POTENTIAL 470 00:23:06,080 --> 00:23:06,480 HAS 471 00:23:06,480 --> 00:23:11,400 HARM SO THE INDIVIDUAL IS FAIRLY 472 00:23:11,400 --> 00:23:11,720 LOW. 473 00:23:11,720 --> 00:23:20,160 THE HARM REQUIRES AN ATTACKER 474 00:23:20,160 --> 00:23:23,360 COULD POSE EYE RISK TO THE 475 00:23:23,360 --> 00:23:23,880 PERSON. 476 00:23:23,880 --> 00:23:30,560 DISEASE RISK AND COGNITIVE 477 00:23:30,560 --> 00:23:32,240 ABILITY. 478 00:23:32,240 --> 00:23:33,560 MOST THE CLAIMS IN THE 479 00:23:33,560 --> 00:23:35,880 LITERATURE REGARDING DECODING 480 00:23:35,880 --> 00:23:37,560 FUTURE DISEASE RISK AND 481 00:23:37,560 --> 00:23:42,240 COGNITIVE ABILITY ARE 482 00:23:42,240 --> 00:23:45,520 SIGNIFICANTLY INFLATED BY 483 00:23:45,520 --> 00:23:46,160 PROBLEMATIC RESEARCH PRACTICES 484 00:23:46,160 --> 00:23:47,440 MY COLLEAGUES AND I HAVE BEEN 485 00:23:47,440 --> 00:23:50,640 TALKING ABOUT THE LAST DECADE OR 486 00:23:50,640 --> 00:23:53,560 SO. 487 00:23:53,560 --> 00:23:55,720 I THINK THE GREATEST POTENTIAL 488 00:23:55,720 --> 00:23:57,880 HARM IS THE EMOTIONAL HARM THAT 489 00:23:57,880 --> 00:23:59,840 COULD ARISE IF SOMEONE COULD 490 00:23:59,840 --> 00:24:04,240 IDENTIFY AND TRY TO BLACK MAIL 491 00:24:04,240 --> 00:24:06,000 THEM BASED ON MRI DECODING. 492 00:24:06,000 --> 00:24:10,960 SAYING WE REIDENTIFIED YOUR DATA 493 00:24:10,960 --> 00:24:11,880 FROM A DATABASE AND WE'VE USED 494 00:24:11,880 --> 00:24:15,480 IT TO SHOW YOU HAVE A HIGH 495 00:24:15,480 --> 00:24:17,680 LIKELIHOOD OF GETTING 496 00:24:17,680 --> 00:24:19,320 ALZHEIMER'S DISEASE AND WE'LL 497 00:24:19,320 --> 00:24:22,160 TELL YOUR INSURER UNLESS YOU PAY 498 00:24:22,160 --> 00:24:28,440 US AND SEND BITCOIN TO THIS 499 00:24:28,440 --> 00:24:28,680 ADDRESS. 500 00:24:28,680 --> 00:24:31,240 THE TARGETS OF A BLACK MAIL 501 00:24:31,240 --> 00:24:32,960 ATTEMPT WON'T KNOW THAT. 502 00:24:32,960 --> 00:24:37,280 THAT'S SOMETHING TO BE WORRIED 503 00:24:37,280 --> 00:24:37,600 ABOUT. 504 00:24:37,600 --> 00:24:40,360 EVEN IF IT'S NOT A REALISTIC 505 00:24:40,360 --> 00:24:45,040 DANGER OF TRUE DECODING THE HYPE 506 00:24:45,040 --> 00:24:48,360 COULD BE THAT HAVING SEEN A 507 00:24:48,360 --> 00:24:52,320 STORY ON "60 MINUTES" EVERYTHING 508 00:24:52,320 --> 00:24:54,440 CAN BE DECODED FROM THE SMALL 509 00:24:54,440 --> 00:24:58,560 AMOUNT OF BRAIN DATA. 510 00:24:58,560 --> 00:25:01,640 IF THERE'S OTHER DATA THAT COULD 511 00:25:01,640 --> 00:25:07,000 BE USED, PSYCHIATRIC DISEASE, 512 00:25:07,000 --> 00:25:13,080 DIAGNOSES, DRUG USE, THINGS LIKE 513 00:25:13,080 --> 00:25:18,000 THAT, THERE'S GREATER HARM 514 00:25:18,000 --> 00:25:18,880 EMPLOYMENT OR DISCRIMINATION. 515 00:25:18,880 --> 00:25:21,240 WHAT DO YOU DO ABOUT THIS? 516 00:25:21,240 --> 00:25:26,360 THE COMMON IMPULSE IS TO CLAMP 517 00:25:26,360 --> 00:25:31,160 DOWN ON DATA SHARING. 518 00:25:31,160 --> 00:25:33,360 WE'VE LONG BEEN PROPONENTS OF 519 00:25:33,360 --> 00:25:36,040 SHARING DATA TO PROTECT PEOPLE 520 00:25:36,040 --> 00:25:42,120 BUT WE TAKE SERIOUSLY BOTH THE 521 00:25:42,120 --> 00:25:44,640 REQUIREMENT FROM THE BELMONT 522 00:25:44,640 --> 00:25:46,880 PRINCIPLES TO PROTECT SUBJECTS 523 00:25:46,880 --> 00:25:50,400 AND MAXIMIZE THEIR 524 00:25:50,400 --> 00:25:58,080 PARTICIPATION. 525 00:25:58,080 --> 00:26:03,280 WE NEED TO ADDRESS THE 526 00:26:03,280 --> 00:26:06,560 REGULATORY MEANS TO PROTECT THE 527 00:26:06,560 --> 00:26:08,360 RESEARCH PARTICIPANTS FROM THE 528 00:26:08,360 --> 00:26:14,080 MISUSE OF NEUROSCIENCE DETE. 529 00:26:14,080 --> 00:26:23,560 THANKS VERY MUCH. 530 00:26:23,560 --> 00:26:26,360 >>LIKE YESTERDAY WE'LL HAVE 531 00:26:26,360 --> 00:26:28,280 TIME FOR A COUPLE QUICK Q&A 532 00:26:28,280 --> 00:26:30,280 QUESTIONS I SEE TWO IN THE ROOM. 533 00:26:30,280 --> 00:26:37,160 DR. YOUNG, PLEASE GO AHEAD. 534 00:26:37,160 --> 00:26:41,200 >>HOW DO YOU THINK ABOUT 535 00:26:41,200 --> 00:26:44,400 WHETHER DEFACING CAN AFFECT DOWN 536 00:26:44,400 --> 00:26:49,280 STREAM ANALYSIS LIKE BETWEEN EEG 537 00:26:49,280 --> 00:26:55,480 DATA OR VOLUMETRIC ANALYSIS AND 538 00:26:55,480 --> 00:26:56,240 MAY BE NECESSARY BEFORE DEFACE 539 00:26:56,240 --> 00:26:58,600 DATA SETS TO MAKE SURE IT 540 00:26:58,600 --> 00:27:03,000 DOESN'T UNDERMINE THE QUALITY OF 541 00:27:03,000 --> 00:27:05,200 THE DATA WHILE RERESPECTING THE 542 00:27:05,200 --> 00:27:06,120 IMPERATIVE TO SHARE THE DATA AND 543 00:27:06,120 --> 00:27:08,200 MAKE IT OPEN IN A WAY THAT 544 00:27:08,200 --> 00:27:13,840 PROTECT THE PRIVACY OF 545 00:27:13,840 --> 00:27:14,360 PARTICIPANTS? 546 00:27:14,360 --> 00:27:21,680 >>GREAT QUESTION. 547 00:27:21,680 --> 00:27:24,440 AN EARLIER ANALYSIS SUGGESTS 548 00:27:24,440 --> 00:27:26,600 THERE MAY BE RELATIVELY SMALL 549 00:27:26,600 --> 00:27:32,360 EFFECTS ON THINGS LIKE DOWN 550 00:27:32,360 --> 00:27:36,520 STREAM ANALYSIS AND CORTICAL 551 00:27:36,520 --> 00:27:38,920 THICKNESS ESTIMATION. 552 00:27:38,920 --> 00:27:44,400 THE LATEST PAPER DOESN'T REALLY 553 00:27:44,400 --> 00:27:46,520 SHOW SIGNIFICANT IMPACTS ON THE 554 00:27:46,520 --> 00:27:47,400 DOWN STREAM PROCESSES. 555 00:27:47,400 --> 00:27:49,600 THE JURY'S STILL OUT BUT THERE'S 556 00:27:49,600 --> 00:27:54,320 NOT BIG EFFECTS. 557 00:27:54,320 --> 00:27:58,240 THE ONE PLACE WHERE DEFACING CAN 558 00:27:58,240 --> 00:27:59,440 HAVE EFFECT IS ON THE GENERATION 559 00:27:59,440 --> 00:28:01,280 OF HEAD MODELS FOR EEG AND 560 00:28:01,280 --> 00:28:03,640 PEOPLE IN THAT FIELD HAVE BEEN 561 00:28:03,640 --> 00:28:05,040 THINKING ABOUT THIS A LOT AND 562 00:28:05,040 --> 00:28:06,480 MAY END UP NEEDING TO SHARE DATA 563 00:28:06,480 --> 00:28:12,720 IN A MORE CONTROLLED WAY OR 564 00:28:12,720 --> 00:28:15,320 SHARE HEAD MODELS PREGENERATED. 565 00:28:15,320 --> 00:28:17,600 THEY'LL BE BADLY IMPACTED BY 566 00:28:17,600 --> 00:28:28,080 REMOVAL OF FACIAL STRUCTURE. 567 00:28:28,360 --> 00:28:30,720 >>THANK YOU. 568 00:28:30,720 --> 00:28:32,360 IT'S USEFUL TO HAVE EVIDENCE 569 00:28:32,360 --> 00:28:34,600 BASED GROUNDING OF THE MAGNITUDE 570 00:28:34,600 --> 00:28:40,240 AND RISK AND CONSIDERING IT. 571 00:28:40,240 --> 00:28:43,520 I WONDER IF YOU LOOKED AT OTHER 572 00:28:43,520 --> 00:28:48,360 WAYS BESIDES FACE ANALYSIS 573 00:28:48,360 --> 00:28:53,440 IDENTIFICATION OF THE DATA. 574 00:28:53,440 --> 00:28:56,600 IF THERE'S BEHAVIORAL DATA THAT 575 00:28:56,600 --> 00:29:00,600 ENABLES THE POTENTIAL FOR 576 00:29:00,600 --> 00:29:03,520 RE-IDENTIFICATION OR THE 577 00:29:03,520 --> 00:29:04,440 CONNECTOME OR NEURAL SIGNATURES 578 00:29:04,440 --> 00:29:06,560 MAY ENABLE FROM THE FUNCTIONAL 579 00:29:06,560 --> 00:29:08,320 ACTIVITY OF BRAIN ACTIVITY 580 00:29:08,320 --> 00:29:12,080 ITSELF TO BE USED AS A WAY OF 581 00:29:12,080 --> 00:29:13,000 AUTHENTICATING AND POTENTIAL 582 00:29:13,000 --> 00:29:13,600 IDENTIFICATION AS WELL. 583 00:29:13,600 --> 00:29:17,520 HAVE YOU LOOKED AT OTHER 584 00:29:17,520 --> 00:29:18,560 MODALITIES OF REIDENTIFICATION 585 00:29:18,560 --> 00:29:25,160 OF THE DATA AND RISK FROM A DATA 586 00:29:25,160 --> 00:29:26,400 NOT MAGNITUDE PERSPECTIVE? 587 00:29:26,400 --> 00:29:35,040 >>WE HAVE NOT. 588 00:29:35,040 --> 00:29:37,080 THERE'S NONE IMAGING REGARDING 589 00:29:37,080 --> 00:29:38,320 DEMOGRAPHICS AND THINGS LIKE 590 00:29:38,320 --> 00:29:40,760 THAT ESPECIALLY FOR DATA SETS 591 00:29:40,760 --> 00:29:42,560 THAT COME FROM RELATIVELY SMALL 592 00:29:42,560 --> 00:29:45,920 AREAS FOR RECRUITMENT. 593 00:29:45,920 --> 00:29:47,560 THAT CERTAINLY BECOMES A 594 00:29:47,560 --> 00:29:47,800 CONCERN. 595 00:29:47,800 --> 00:29:52,440 WHY THE HUMAN CONNECTOME PROJECT 596 00:29:52,440 --> 00:29:54,040 DOESN'T SHARE THE DATA BECAUSE 597 00:29:54,040 --> 00:29:55,760 IT CAME FROM A GEOGRAPHIC AREA 598 00:29:55,760 --> 00:29:56,600 AND COMPOSED FROM LARGE 599 00:29:56,600 --> 00:29:59,400 FAMILIES. 600 00:29:59,400 --> 00:30:03,920 FOR THE DATA THAT ARE SHARED IN 601 00:30:03,920 --> 00:30:06,560 OPEN NEURO IN GENERAL YOU KNOW 602 00:30:06,560 --> 00:30:08,360 THERE'S RELATIVELY LITTLE OF 603 00:30:08,360 --> 00:30:13,440 THAT SIDE OF TYPE INFORMATION. 604 00:30:13,440 --> 00:30:15,480 SOME ARE BUT IT'S MINIMAL BUT 605 00:30:15,480 --> 00:30:18,560 THAT STUFF IS LESS OF A CONCERN. 606 00:30:18,560 --> 00:30:24,000 THE ISSUE OF RE-IDENTIFICATION 607 00:30:24,000 --> 00:30:24,720 NOT RELATED TO FACE 608 00:30:24,720 --> 00:30:25,320 RECONSTRUCTION IS INTERESTING. 609 00:30:25,320 --> 00:30:27,200 ONE THING TO POINT OUT IS THIS 610 00:30:27,200 --> 00:30:32,280 IS IS FUNDAMENTALLY DIFFERENT 611 00:30:32,280 --> 00:30:34,560 FROM SAY GENETIC DATA OR 612 00:30:34,560 --> 00:30:35,280 FINGERPRINT AT PRESENT AND I 613 00:30:35,280 --> 00:30:36,840 DON'T HE SEE IT HAPPENING FOR A 614 00:30:36,840 --> 00:30:41,320 LONG TIME IT'S IMPOSSIBLE TO GET 615 00:30:41,320 --> 00:30:43,520 A LATENT SURREPTITIOUS BRAIN 616 00:30:43,520 --> 00:30:44,160 IMAGE. 617 00:30:44,160 --> 00:30:45,640 THE ONLY WAY TO GET BRAIN 618 00:30:45,640 --> 00:30:49,040 IMAGING DATA FROM PEOPLE IS 619 00:30:49,040 --> 00:30:49,480 IMAGING THEM. 620 00:30:49,480 --> 00:30:55,320 SAY SOMEBODY HAS A CONNECT HOME 621 00:30:55,320 --> 00:31:01,000 OF AN INDIVIDUAL THE ONLY WAY TO 622 00:31:01,000 --> 00:31:02,800 REIDENTIFY THAT INDIVIDUAL IS BY 623 00:31:02,800 --> 00:31:04,320 HAVING ANOTHER CONNECTOME FOR 624 00:31:04,320 --> 00:31:06,360 THAT INDIVIDUAL AND THE ONLY 625 00:31:06,360 --> 00:31:08,240 TIME CONNECTOMES ARE REALLY 626 00:31:08,240 --> 00:31:09,680 GENERATED ARE IN RESEARCH 627 00:31:09,680 --> 00:31:12,960 STUDIES AND SEEMS UNLIKELY 628 00:31:12,960 --> 00:31:18,560 THAT'S AN EFFECTER WE NEED TO 629 00:31:18,560 --> 00:31:24,880 WORRY A LOT ABOUT IF YOU HAVE A 630 00:31:24,880 --> 00:31:27,160 STRUCTURAL IMAGE OF A PERSON YOU 631 00:31:27,160 --> 00:31:30,560 CAN MATCH THAT TO ANOTHER 632 00:31:30,560 --> 00:31:37,000 STRUCTURAL IMAGE. 633 00:31:37,000 --> 00:31:40,160 IT REQUIRES US TO ALREADY HAVE 634 00:31:40,160 --> 00:31:46,560 AN MRI IMAGE OF THE PERSON AND 635 00:31:46,560 --> 00:31:48,880 SOMETHING FOR EXAMPLE SOMEBODY 636 00:31:48,880 --> 00:31:50,320 WHO ALREADY HAS A BUNCH OF 637 00:31:50,320 --> 00:31:51,920 IMAGING DATA AND WANTS TO MATCH 638 00:31:51,920 --> 00:31:54,320 UP COULD DO THAT AND THAT'S 639 00:31:54,320 --> 00:31:57,400 WHERE WE HAVE TO THINK OF THE 640 00:31:57,400 --> 00:31:58,720 MAGNITUDE OF WHAT THEY CAN LEARN 641 00:31:58,720 --> 00:32:04,360 FROM IT. 642 00:32:04,360 --> 00:32:06,560 >>HI, RUSS. 643 00:32:06,560 --> 00:32:08,680 ROBERT BERRY FROM NGH. 644 00:32:08,680 --> 00:32:11,000 I HAVE A QUESTION ABOUT 645 00:32:11,000 --> 00:32:11,280 DEFACING. 646 00:32:11,280 --> 00:32:14,120 IF YOU WERE TO SHARE DEFACED 647 00:32:14,120 --> 00:32:17,440 IMAGES WITH COLLEAGUES AND MAYBE 648 00:32:17,440 --> 00:32:19,800 SOME PIXELS ARE SCRAMBLE AND 649 00:32:19,800 --> 00:32:21,760 SOMEONE COULD POTENTIALLY 650 00:32:21,760 --> 00:32:23,160 RE-IDENTIFY AND THE FIRST THING 651 00:32:23,160 --> 00:32:25,560 IS TO PUT THEM THROUGH A SKULL 652 00:32:25,560 --> 00:32:27,360 STRIPPING ALGORITHM WHICH 653 00:32:27,360 --> 00:32:28,040 REMOVES EVERYTHING EXCEPT FOR 654 00:32:28,040 --> 00:32:30,480 THE BRAIN IF IT'S NOT TOO 655 00:32:30,480 --> 00:32:30,760 AGGRESSIVE. 656 00:32:30,760 --> 00:32:34,040 MY QUESTION IS WHY EVEN DO 657 00:32:34,040 --> 00:32:34,760 DEFACING AT ALL? 658 00:32:34,760 --> 00:32:37,200 WHY DON'T WE JUST DO SKULL 659 00:32:37,200 --> 00:32:38,600 STRIPPING AN REMOVE EVERYTHING 660 00:32:38,600 --> 00:32:40,800 AND ONLY SHARE THE BRAIN. 661 00:32:40,800 --> 00:32:42,520 THAT SEEMS TO SKIP THE PROBLEM 662 00:32:42,520 --> 00:32:45,240 ENTIRELY. 663 00:32:45,240 --> 00:32:48,120 WE THINK OF THAT AS A NUCLEAR 664 00:32:48,120 --> 00:32:50,400 OPTION BECAUSE SOME REGISTRATION 665 00:32:50,400 --> 00:32:54,560 METHODS USE THE SKULL 666 00:32:54,560 --> 00:32:55,800 INFORMATION AND SO WE'VE BEEN 667 00:32:55,800 --> 00:32:57,720 RETICENT TO DO THAT BUT I THINK 668 00:32:57,720 --> 00:33:03,080 YOU'RE RIGHT, IF WE HAD TO MOVE 669 00:33:03,080 --> 00:33:05,680 TO A WORLD WHERE WE WERE 670 00:33:05,680 --> 00:33:06,480 SIGNIFICANTLY WORRIED -- WHERE 671 00:33:06,480 --> 00:33:10,320 WE THOUGHT THE REMAINING FACIAL 672 00:33:10,320 --> 00:33:12,720 STRUCTURE AFTER DE FACING WAS 673 00:33:12,720 --> 00:33:16,280 STILL PROBLEMATIC WOULD BE OUR 674 00:33:16,280 --> 00:33:17,920 NEXT OPTION TO SHARE DE SKULLED 675 00:33:17,920 --> 00:33:20,400 DATA AND SOME WORK FLOWS WILL NO 676 00:33:20,400 --> 00:33:26,640 LONGER WORK WITH THOSE DATA. 677 00:33:26,640 --> 00:33:28,240 >>THANK YOU VERY MUCH. 678 00:33:28,240 --> 00:33:30,440 I THINK WE HAVE TO MOVE ON TO 679 00:33:30,440 --> 00:33:32,400 OUR NEXT SPEAKER BUT WILL HAVE 680 00:33:32,400 --> 00:33:34,560 TIME FOR MORE Q&A AND GENERAL 681 00:33:34,560 --> 00:33:38,000 DISCUSSION. 682 00:33:38,000 --> 00:33:43,400 OUR NEXT SPEAKER IS DR. SARA 683 00:33:43,400 --> 00:33:45,040 BERGER IN RESPONSIBLE AND 684 00:33:45,040 --> 00:33:46,920 INCLUSIVE TECHNOLOGY AT IBM. 685 00:33:46,920 --> 00:33:49,960 SHE RECEIVED HER Ph.D. FROM 686 00:33:49,960 --> 00:33:51,360 NORTHWESTERN UNIVERSITY 687 00:33:51,360 --> 00:33:53,040 SPECIALIZES IN SYSTEMS AND 688 00:33:53,040 --> 00:33:54,880 COGNITIVE NEUROSCIENCE WITH A 689 00:33:54,880 --> 00:33:56,360 SUBSPECIALTY IN MEDICAL 690 00:33:56,360 --> 00:33:57,720 HUMANITIES AND BIOETHICS. 691 00:33:57,720 --> 00:34:01,600 AS PART OF IBMs RESPONSIBLE AND 692 00:34:01,600 --> 00:34:04,240 INCLUSIVE TECHNOLOGY RESEARCH 693 00:34:04,240 --> 00:34:08,760 TEAM, DR. BERGER DESIGNS 694 00:34:08,760 --> 00:34:11,280 MULTI-MODAL FRAMEWORKS TO BE 695 00:34:11,280 --> 00:34:13,760 MORE PROACTIVELY RESPONSIBLE IN 696 00:34:13,760 --> 00:34:14,560 THEIR PROJECTS AND PROJECTS 697 00:34:14,560 --> 00:34:16,280 ACROSS TECHNOLOGIES AND 698 00:34:16,280 --> 00:34:19,720 APPLICATIONS INCLUDING BUT NOT 699 00:34:19,720 --> 00:34:29,080 LIMITED TO A.I. AND MACHINE 700 00:34:29,080 --> 00:34:32,120 LEARNING AND LOOKS AT 701 00:34:32,120 --> 00:34:37,600 POTENTIALLY HARMFUL NARRATIVES 702 00:34:37,600 --> 00:34:40,240 AND PRACTICE AND RELATIONAL, 703 00:34:40,240 --> 00:34:48,120 PARTICIPATORY AND COMMUNITY-GRIF 704 00:34:48,120 --> 00:34:53,920 DRIVEN ETHICS. 705 00:34:53,920 --> 00:34:54,120 WELCOME. 706 00:34:54,120 --> 00:34:56,120 >>CAN YOU SEE MY SLIDES? 707 00:34:56,120 --> 00:34:57,560 THANK YOU FOR THE KIND 708 00:34:57,560 --> 00:34:58,400 INTRODUCTION AND THANKS FOR 709 00:34:58,400 --> 00:34:59,480 HAVING ME. 710 00:34:59,480 --> 00:35:01,800 I'M PLANNING ON BUILDING UPON 711 00:35:01,800 --> 00:35:02,440 SOME OF THE EXCELLENT POINTS 712 00:35:02,440 --> 00:35:04,760 MADE BY MANY OF THE SPEAKERS 713 00:35:04,760 --> 00:35:10,040 YESTERDAY BUT I ALSO HOPEFULLY 714 00:35:10,040 --> 00:35:11,560 WILL COMPLICATE OR CHALLENGE 715 00:35:11,560 --> 00:35:14,440 IDEAS AROUND INDIVIDUAL DATA AND 716 00:35:14,440 --> 00:35:15,560 SHARING IN THE PROCESS. 717 00:35:15,560 --> 00:35:17,040 BEFORE I BEGIN I WILL SAY THE 718 00:35:17,040 --> 00:35:20,440 VIEWS IN MISS TALK ARE MY OWN. 719 00:35:20,440 --> 00:35:23,520 THEY DON'T REPRESENT THOSE OF 720 00:35:23,520 --> 00:35:25,920 THE COMPANY I WORK FOR. 721 00:35:25,920 --> 00:35:28,520 I WANT TO BEGIN WITH 722 00:35:28,520 --> 00:35:29,440 POSITIONALITY STATEMENT. 723 00:35:29,440 --> 00:35:32,840 I KNOW IT'S NOT COMMON IN BIO 724 00:35:32,840 --> 00:35:38,120 MEDICAL RESEARCH BUT MY WAY OF 725 00:35:38,120 --> 00:35:39,120 CHALLENGING PRACTICE IS 726 00:35:39,120 --> 00:35:40,200 SUBJECTIVE AND WANT TO 727 00:35:40,200 --> 00:35:42,560 ACKNOWLEDGE MY QUESTIONS, MY 728 00:35:42,560 --> 00:35:46,400 METHODS, MY INTERPRETATIONS 729 00:35:46,400 --> 00:35:49,920 THEY'RE ALWAYS INFLUENCED BY MY 730 00:35:49,920 --> 00:35:51,800 LIVED EXPERIENCES MINE OR THAT 731 00:35:51,800 --> 00:35:54,720 OF MY FAMILY WITH CHRONIC PAIN 732 00:35:54,720 --> 00:35:56,920 AND TRAINING IN NEUROSCIENCE 733 00:35:56,920 --> 00:36:02,120 BIOETHICS AND GENDER STUDIES AND 734 00:36:02,120 --> 00:36:04,520 BY INTERACTIONS WITH HUNDREDS OF 735 00:36:04,520 --> 00:36:08,120 PATIENTS AND WITH THE BRILLIANT 736 00:36:08,120 --> 00:36:10,400 PEOPLE I HAVE THE PRIVILEGE OF 737 00:36:10,400 --> 00:36:10,800 CALLING COLLEAGUES. 738 00:36:10,800 --> 00:36:13,040 FOR THOSE WHO DON'T KNOW ME, A 739 00:36:13,040 --> 00:36:16,480 QUICK BIT ABOUT MY RESEARCH, 740 00:36:16,480 --> 00:36:18,440 I'VE SPENT OVER 13 YEARS 741 00:36:18,440 --> 00:36:20,920 INVESTIGATING HOW TO QUANTIFY, 742 00:36:20,920 --> 00:36:23,000 PREDICT, TRACK, TREAT ACUTE AND 743 00:36:23,000 --> 00:36:24,120 CHRONIC PAIN USING MANY KINDS OF 744 00:36:24,120 --> 00:36:25,680 DATA. 745 00:36:25,680 --> 00:36:29,280 SO STRUCTURAL AND FUNCTIONAL 746 00:36:29,280 --> 00:36:34,560 FMRI, SELF-REPORTS, SMARTPHONE 747 00:36:34,560 --> 00:36:37,840 ASSESSMENTS, WEARABLE SENSORS 748 00:36:37,840 --> 00:36:38,920 AND TECHNIQUES. 749 00:36:38,920 --> 00:36:39,960 THIS RESEARCH HAS AT TIMES 750 00:36:39,960 --> 00:36:44,200 EXPOSED MOW TO A VARIETY OF 751 00:36:44,200 --> 00:36:46,320 ETHICAL ISSUES AT THE 752 00:36:46,320 --> 00:36:47,440 INTERSECTION OF A.I. AND DRIVEN 753 00:36:47,440 --> 00:36:51,080 ME AND MY TEAM TO TRY TO DEVELOP 754 00:36:51,080 --> 00:36:53,440 VARIOUS RESOURCES FOR 755 00:36:53,440 --> 00:36:54,920 RESEARCHERS TO REFLECT AND 756 00:36:54,920 --> 00:36:55,680 REFLEX ON THE BROADER 757 00:36:55,680 --> 00:37:00,080 IMPLICATIONS OF THEIR WORK. 758 00:37:00,080 --> 00:37:02,280 IN PREPARING NOR PANEL, WE'RE 759 00:37:02,280 --> 00:37:04,120 GIVING METHODS TO ORIENT AND 760 00:37:04,120 --> 00:37:04,760 GUIDE THE DISCUSSION. 761 00:37:04,760 --> 00:37:07,520 ONE WAS THIS ONE WHICH IS WHAT 762 00:37:07,520 --> 00:37:08,400 ARE POSSIBLE HARMS TO 763 00:37:08,400 --> 00:37:11,000 INDIVIDUALS FROM DATA SHARING. 764 00:37:11,000 --> 00:37:12,560 BASED ON THIS QUESTION WITHOUT 765 00:37:12,560 --> 00:37:14,560 SEEING ANYBODY ELSE'S SLIDES, I 766 00:37:14,560 --> 00:37:15,920 FIGURED PEOPLE WOULD EXPECT ME 767 00:37:15,920 --> 00:37:18,560 TO TALK ABOUT THE RISKS IN A 768 00:37:18,560 --> 00:37:20,240 PARTICULAR KIND OF WAY. 769 00:37:20,240 --> 00:37:22,840 SO ONE RISK TO INDIVIDUALS WOULD 770 00:37:22,840 --> 00:37:26,360 BE BROUGHT UP IS THIS ISSUE OF 771 00:37:26,360 --> 00:37:28,920 RE-IDENTIFICATION AND WE TALKED 772 00:37:28,920 --> 00:37:33,240 AT LENGTH ABOUT THIS AND 773 00:37:33,240 --> 00:37:40,280 DR. POLDRACK THIS TOO AND I 774 00:37:40,280 --> 00:37:41,760 IMAGINE SOMEONE EXPECTS ME TO 775 00:37:41,760 --> 00:37:44,080 SAY THIS KIND OF DATA LIKE MRI 776 00:37:44,080 --> 00:37:46,680 ARE LESS RISKIER. 777 00:37:46,680 --> 00:37:48,320 MAYBE NAME DOWN STREAM LEGAL OR 778 00:37:48,320 --> 00:37:50,080 SECURITY IMPLICATIONS AND TALK 779 00:37:50,080 --> 00:37:53,520 ABOUT THEIR LIKELIHOOD OR 780 00:37:53,520 --> 00:37:55,480 CONCERNS AND MAYBE PROVIDE 781 00:37:55,480 --> 00:37:56,200 TECHNOLOGY MITIGATION 782 00:37:56,200 --> 00:37:56,520 SUGGESTIONS. 783 00:37:56,520 --> 00:37:57,840 I'M NOT GOING TO DO THAT TODAY. 784 00:37:57,840 --> 00:38:02,440 INSTEAD I'M GOING TO TAKE A 785 00:38:02,440 --> 00:38:12,240 DIFFERENT APPROACH I'LL TALK 786 00:38:12,240 --> 00:38:13,560 ABOUT INDIVIDUALS, NEURODATA AND 787 00:38:13,560 --> 00:38:15,000 DATA SHARING AND THE QUESTION IN 788 00:38:15,000 --> 00:38:18,080 SOME OF OUR DISCUSSIONS 789 00:38:18,080 --> 00:38:20,400 YESTERDAY IT APPEARS THAT 790 00:38:20,400 --> 00:38:23,840 INDIVIDUALS CAN BE NEATLY 791 00:38:23,840 --> 00:38:24,760 SEPARATED FROM GROUPS AND NEURO 792 00:38:24,760 --> 00:38:28,000 DATA CAN STAND ALONE AND THE ACT 793 00:38:28,000 --> 00:38:34,000 OF DATA SHARING CAN BE DISTILLED 794 00:38:34,000 --> 00:38:35,960 FROM THE LARGER PROCESSES AND I 795 00:38:35,960 --> 00:38:40,960 WANT TO COME BACK TO THREE 796 00:38:40,960 --> 00:38:41,200 THINGS. 797 00:38:41,200 --> 00:38:43,520 THE FIRST IS THAT INDIVIDUALS 798 00:38:43,520 --> 00:38:46,560 ARE ALWAYS SIMULTANEOUSLY 799 00:38:46,560 --> 00:38:47,800 SITUATED WITH VARIOUS 800 00:38:47,800 --> 00:38:49,040 COMMUNITIES AND ASSIGNED GROUPS. 801 00:38:49,040 --> 00:38:51,120 WHEN YOU FILL OUT FORMS YOU MAY 802 00:38:51,120 --> 00:38:51,840 SHARE SOMETHING ABOUT 803 00:38:51,840 --> 00:38:54,280 COMMUNITIES WITH WHICH YOU 804 00:38:54,280 --> 00:38:56,440 IDENTIFY OR SOCIAL GROUPS YOU 805 00:38:56,440 --> 00:38:58,000 DON'T, GENDER, RACE INCOME 806 00:38:58,000 --> 00:38:58,600 BRACKETS. 807 00:38:58,600 --> 00:39:03,280 THEY'RE ALL USED TO FORM GROUPS 808 00:39:03,280 --> 00:39:04,160 OF INDIVIDUALS. 809 00:39:04,160 --> 00:39:05,920 PARTICIPANTS CAN BE ASSIGNED TO 810 00:39:05,920 --> 00:39:09,200 PATIENT VERSUS CONTROL GROUPS, 811 00:39:09,200 --> 00:39:10,600 ACTIVE ARMS VERSUS PLACEBO ARMS 812 00:39:10,600 --> 00:39:14,080 AND ANALYTICS ARE OFTEN USED TO 813 00:39:14,080 --> 00:39:16,120 CLASSIFY PEOPLE TO FIND 814 00:39:16,120 --> 00:39:17,320 SUBCOHORTS TO COMPARE WITH 815 00:39:17,320 --> 00:39:17,920 REFERENCE DATA SETS. 816 00:39:17,920 --> 00:39:21,400 SO INDIVIDUALS IN THESE CONTEXTS 817 00:39:21,400 --> 00:39:23,440 ARE ALWAYS IN CONSTANT 818 00:39:23,440 --> 00:39:24,480 RELATIONSHIP TO PEOPLE AND 819 00:39:24,480 --> 00:39:26,680 VARIOUS GROUPS AND COMMUNITIES 820 00:39:26,680 --> 00:39:29,560 THROUGHOUT THE RESEARCH. 821 00:39:29,560 --> 00:39:34,440 SECOND, YESTERDAY IT WAS BROUGHT 822 00:39:34,440 --> 00:39:35,800 UP NEURODATA DOESN'T OCCUR IN 823 00:39:35,800 --> 00:39:36,760 ISOLATION AND I'LL RETURN TO 824 00:39:36,760 --> 00:39:39,280 THAT BUT I WANT TO GO A STEP 825 00:39:39,280 --> 00:39:40,640 FURTHER SAYING IT DOESN'T EXIST 826 00:39:40,640 --> 00:39:41,040 ON ITS OWN. 827 00:39:41,040 --> 00:39:43,000 WE DON'T HAVE A BUNCH OF DATA 828 00:39:43,000 --> 00:39:47,400 FLOATING IN OUR HEADS WAITING TO 829 00:39:47,400 --> 00:39:49,000 BE COUNTED OR PRESSURED OR 830 00:39:49,000 --> 00:39:49,280 ABSTRACTED 831 00:39:49,280 --> 00:39:52,800 HE INSTEAD THE PROCESS OF 832 00:39:52,800 --> 00:39:54,080 TURNING PHYSIOLOGY INTO BEHAVIOR 833 00:39:54,080 --> 00:39:55,800 IS A CREATIVE ACT. 834 00:39:55,800 --> 00:39:59,560 DATA ARE THEMSELVES CREATED AND 835 00:39:59,560 --> 00:40:00,160 SITUATED WITHIN VARIOUS 836 00:40:00,160 --> 00:40:01,960 POLITICAL AND HISTORICAL, 837 00:40:01,960 --> 00:40:03,000 SOCIAL, ECONOMIC PROCESSES THAT 838 00:40:03,000 --> 00:40:06,600 DICTATE WHAT IS VALUABLE TO BE 839 00:40:06,600 --> 00:40:08,840 CREATED IN THE FIRST PLACE. 840 00:40:08,840 --> 00:40:10,160 BECAUSE OF THIS IT'S DIFFICULT 841 00:40:10,160 --> 00:40:12,440 TO TALK ABOUT DATA SHARING AS 842 00:40:12,440 --> 00:40:15,360 SOME SORT OF DIGITAL SPACE OR A 843 00:40:15,360 --> 00:40:17,080 MOMENT IN TIME WITHOUT THEREFORE 844 00:40:17,080 --> 00:40:17,680 TALKING ABOUT DATA COLLECTION 845 00:40:17,680 --> 00:40:18,280 AND DATA USE. 846 00:40:18,280 --> 00:40:20,480 I'LL START AT THE LATTER POINT 847 00:40:20,480 --> 00:40:30,560 FIRST. 848 00:40:30,560 --> 00:40:36,560 I HEAR TALKING ABOUT THIS TO A 849 00:40:36,560 --> 00:40:37,840 REPOSITORY OR ANOTHER SERVER AND 850 00:40:37,840 --> 00:40:39,640 THIS IS PART OF IT. 851 00:40:39,640 --> 00:40:40,360 AN IMPORTANT PART. 852 00:40:40,360 --> 00:40:45,600 THE QUALITY OF THE DATA AND 853 00:40:45,600 --> 00:40:51,080 AMOUNT COMES FROM THE COLLECTION 854 00:40:51,080 --> 00:40:57,280 OF THE DATA AND LIKEWISE DATA IS 855 00:40:57,280 --> 00:40:58,600 TRANSFORMED AND THUS DATA 856 00:40:58,600 --> 00:40:59,560 SHARING IS TIED TO DATA CREATION 857 00:40:59,560 --> 00:41:04,440 AND USE FROM THE GET GO. 858 00:41:04,440 --> 00:41:06,560 I THINK THIS ALSO INCLUDES THE 859 00:41:06,560 --> 00:41:09,760 ACTION IN PARALLEL WHEN DATA IS 860 00:41:09,760 --> 00:41:12,680 ANALYZED, CLONED OR AGGREGATED 861 00:41:12,680 --> 00:41:14,360 AND IT CAN COME TOGETHER FULL 862 00:41:14,360 --> 00:41:14,600 CIRCLE. 863 00:41:14,600 --> 00:41:17,160 WHEN I THINK OF DETE SHARING I'M 864 00:41:17,160 --> 00:41:19,560 VIEWING THE ENTIRE DATA PROCESS 865 00:41:19,560 --> 00:41:21,520 AS A SOCIO TECHNOLOGY STUCK OF 866 00:41:21,520 --> 00:41:22,120 SHARING OPPOSED TO A SITE OF 867 00:41:22,120 --> 00:41:26,120 SHARING. 868 00:41:26,120 --> 00:41:27,760 THIS IN PARTICULAR IS IMPORTANT 869 00:41:27,760 --> 00:41:33,120 BECAUSE IT OPENS UP THE REALM 870 00:41:33,120 --> 00:41:35,080 BEING OF POSSIBILITY TO PREVENT 871 00:41:35,080 --> 00:41:38,560 HARM AND MAY ALSO HELP US EXPAND 872 00:41:38,560 --> 00:41:41,560 OUR NOTIONS OF HARM TO PEOPLE AS 873 00:41:41,560 --> 00:41:41,760 WELL. 874 00:41:41,760 --> 00:41:43,040 IF WE BEGIN OUR DATA COLLECTION 875 00:41:43,040 --> 00:41:45,360 I THINK WE CAN START TO SEE THE 876 00:41:45,360 --> 00:41:48,960 WAYS IN WHICH SHARING IS SO MUCH 877 00:41:48,960 --> 00:41:49,960 BROADER. 878 00:41:49,960 --> 00:41:51,120 INFORMED CONSENT IS WHEN 879 00:41:51,120 --> 00:41:51,840 PARTICIPANTS AGREE TO SHARE 880 00:41:51,840 --> 00:41:53,560 THEIR THOUGHTS, BODIES, TIME 881 00:41:53,560 --> 00:41:57,520 WITH US AND WE TURN THIS INTO 882 00:41:57,520 --> 00:41:59,080 DATA FOR THE PURPOSES OF 883 00:41:59,080 --> 00:41:59,400 RESEARCH. 884 00:41:59,400 --> 00:42:01,920 SAY SOMEONE CAN SENSE THEY PASS 885 00:42:01,920 --> 00:42:03,960 ALL SAFETY CHECKS AND 886 00:42:03,960 --> 00:42:04,720 ELIGIBILITY, CRITERIA, 887 00:42:04,720 --> 00:42:06,120 EVERYTHING CHECKS OUT AND THEY 888 00:42:06,120 --> 00:42:10,560 ENTER THE SCANNER AND GET COMFY, 889 00:42:10,560 --> 00:42:12,920 RESEARCHERS GO TO THE CONTROL 890 00:42:12,920 --> 00:42:14,160 ROOM TO START SCANNING. 891 00:42:14,160 --> 00:42:15,120 WHAT HAPPENS WHEN THE RESEARCHER 892 00:42:15,120 --> 00:42:16,240 STARTS AT THE SCANNER AND YOU 893 00:42:16,240 --> 00:42:18,440 LET IT TAKE THE FIRST IMAGES 894 00:42:18,440 --> 00:42:20,440 OVER A FEW SECONDS AND SEE 895 00:42:20,440 --> 00:42:26,120 SOMETHING LIKE THIS? 896 00:42:26,120 --> 00:42:28,240 MASSIVE ARTIFACTS, 897 00:42:28,240 --> 00:42:29,520 DISCOLORATION, WHAT DO YOU DO? 898 00:42:29,520 --> 00:42:34,600 FOR ME THIS WAS NOT IN UNCOMMON 899 00:42:34,600 --> 00:42:36,040 OCCURRENCE. 900 00:42:36,040 --> 00:42:38,240 I'VE SEEN STROKES, ACTIVE BRAIN 901 00:42:38,240 --> 00:42:41,600 WAVES, EVIDENCE OF PAST 902 00:42:41,600 --> 00:42:44,360 SURGERIES AND EVEN BULLET 903 00:42:44,360 --> 00:42:44,640 SHRAPNEL. 904 00:42:44,640 --> 00:42:46,560 WE HAVE A SYSTEM IN PLACE TO DO 905 00:42:46,560 --> 00:42:46,880 THIS. 906 00:42:46,880 --> 00:42:49,720 WE WERE PREPARED IN OUR TRAINING 907 00:42:49,720 --> 00:42:52,200 BUT CAN YOU TAKE A MOTION TO 908 00:42:52,200 --> 00:42:56,480 IMAGINE WHAT THAT'S LIKE FOR A 909 00:42:56,480 --> 00:42:59,040 PARTICIPANT WHO WAS TOTALLY FINE 910 00:42:59,040 --> 00:43:00,640 AND WAS IN A SCANNER FOR HOURS 911 00:43:00,640 --> 00:43:03,080 AND TO BE ESCORTED OUT TO A ROOM 912 00:43:03,080 --> 00:43:04,400 TO MEET SOMEONE THEY HAVEN'T MET 913 00:43:04,400 --> 00:43:06,080 BEFORE TO EXPLAIN WHAT WE MAY BE 914 00:43:06,080 --> 00:43:10,480 SEEING IN THEIR HEADS. 915 00:43:10,480 --> 00:43:14,960 ONE OF THE RISKS IN HAVING 916 00:43:14,960 --> 00:43:16,960 PARTICIPANTS AGREE TO SHARE 917 00:43:16,960 --> 00:43:18,560 THEIR DETE IS THERE'S THE RISK 918 00:43:18,560 --> 00:43:19,880 OF BEING EXPOSED TO INFORMATION 919 00:43:19,880 --> 00:43:21,560 UNKNOWN OR UNEXPECTED OR 920 00:43:21,560 --> 00:43:23,520 DISCLOSING INFORMATION THAT THEY 921 00:43:23,520 --> 00:43:24,960 DIDN'T NECESSARILY WANT OTHERS 922 00:43:24,960 --> 00:43:27,160 TO KNOW. 923 00:43:27,160 --> 00:43:29,120 THERE ARE MANY CONSEQUENCE TO 924 00:43:29,120 --> 00:43:30,280 THIS I'M SURE I'M NOT NAMING ALL 925 00:43:30,280 --> 00:43:32,200 OF THEM HERE. 926 00:43:32,200 --> 00:43:38,360 IT COULD BE RE-STRESSING OR 927 00:43:38,360 --> 00:43:40,480 CAUSE DISTRUST IF PEOPLE DIDN'T 928 00:43:40,480 --> 00:43:42,320 UNDERSTAND THIS COULD HAPPEN OR 929 00:43:42,320 --> 00:43:45,880 DOESN'T WANT TO BE NOTIFIED. 930 00:43:45,880 --> 00:43:48,080 IT COULD BE WITHIN MOMENTS MUCH 931 00:43:48,080 --> 00:43:49,240 OUT OF THE SCANNER OR SOMETIMES 932 00:43:49,240 --> 00:43:50,440 DELAYED. 933 00:43:50,440 --> 00:43:52,440 SOMETIMES WE DON'T LOOK AT DATA 934 00:43:52,440 --> 00:43:54,720 FOR MONTHS AND IT'S PERSON TO BE 935 00:43:54,720 --> 00:43:56,440 ABLE TO REIDENTIFY SOMEONE 936 00:43:56,440 --> 00:43:57,880 QUICKLY. 937 00:43:57,880 --> 00:44:02,200 AND YOU CAN SEE IF THERE'S A 938 00:44:02,200 --> 00:44:05,160 MAJOR HEALTH ISSUE, IT'S LIKELY 939 00:44:05,160 --> 00:44:08,240 GOING TO IMPACT THEIR FAMILIES 940 00:44:08,240 --> 00:44:10,600 AND LOVED ONES OR IN CULTURES 941 00:44:10,600 --> 00:44:17,440 COMMUNITIES TOO. 942 00:44:17,440 --> 00:44:22,200 DATA IS GENERATED IN PART BY 943 00:44:22,200 --> 00:44:24,760 PARTICIPANTS DOING SOMETHING, 944 00:44:24,760 --> 00:44:25,720 COMPLETING TASKS, LETTING YOUR 945 00:44:25,720 --> 00:44:27,920 MIND WANDER IN RESTING STATE. 946 00:44:27,920 --> 00:44:34,160 LISTENING TO PODCASTS FOR HOURS. 947 00:44:34,160 --> 00:44:36,280 THE PREVIOUS WORK REPRESENTS THE 948 00:44:36,280 --> 00:44:38,440 THINGS THE RESEARCH TEAMS WOULD 949 00:44:38,440 --> 00:44:42,240 ASK THEM TO DO. 950 00:44:42,240 --> 00:44:45,640 MAYBE GOING IN THE MRI SCANNER 951 00:44:45,640 --> 00:44:47,480 FOR HOURS UP TO THREE YEARS. 952 00:44:47,480 --> 00:44:51,600 THEY MAY HAVE QUESTIONNAIRES ON 953 00:44:51,600 --> 00:44:55,920 COMPUTERS, PHONES, INTERVIEWS, 954 00:44:55,920 --> 00:44:58,400 PROVIDE VOICE RESPONSES 955 00:44:58,400 --> 00:45:00,280 WEARABLES, SENSORS UNDER THEIR 956 00:45:00,280 --> 00:45:01,600 MATTRESSES. 957 00:45:01,600 --> 00:45:03,200 I'M SURE I'M MISSING SOME. 958 00:45:03,200 --> 00:45:06,800 I'M SURE YOU CAN ALL APPRECIATE 959 00:45:06,800 --> 00:45:10,600 HOW MUCH WORK THIS IS. 960 00:45:10,600 --> 00:45:16,160 ANOTHER RISK I SEE IS POTENTIAL 961 00:45:16,160 --> 00:45:16,560 EXPLOITATION. 962 00:45:16,560 --> 00:45:24,680 I FEEL LIKE IT'S GETTING WORSE 963 00:45:24,680 --> 00:45:28,360 WITH THE MOVE TOWARDS BIG DATA. 964 00:45:28,360 --> 00:45:29,480 ON THE ONE HAND PARTICIPANT 965 00:45:29,480 --> 00:45:31,480 BURDEN IS A REAL CONCERN AND I 966 00:45:31,480 --> 00:45:36,640 KNOW MANY WERE TOLD TO AVOID 967 00:45:36,640 --> 00:45:40,240 COERCION BUT I WORRY ABOUT THE 968 00:45:40,240 --> 00:45:41,760 LIMITED BUDGET PEOPLE HAVE TO 969 00:45:41,760 --> 00:45:42,480 PAY PARTICIPANTS FOR THEIR WORK 970 00:45:42,480 --> 00:45:44,440 AND IT'S WORK THEY DO FOR 971 00:45:44,440 --> 00:45:45,960 RESEARCH FOR THE TIME THEY SPEND 972 00:45:45,960 --> 00:45:47,560 TRAVELLING TO OR MISSING THEIR 973 00:45:47,560 --> 00:45:50,080 WORK OR GETTING CHILDCARE AND 974 00:45:50,080 --> 00:45:51,440 FOR THE RESOURCES NEEDED TO 975 00:45:51,440 --> 00:45:53,360 COMPLETE THE TASKS BECAUSE YOU 976 00:45:53,360 --> 00:45:58,040 CAN'T ASSUME EVERYONE HAS A 977 00:45:58,040 --> 00:46:00,480 SMARTPHONE, DATA PLAN OR 978 00:46:00,480 --> 00:46:02,920 INTERNET OR THERAPEUTIC 979 00:46:02,920 --> 00:46:06,560 MISCONCEPTION THAT MAIN RELIEF 980 00:46:06,560 --> 00:46:08,080 MAY NOT HAPPEN AND THE 981 00:46:08,080 --> 00:46:09,600 CONTRIBUTION TO WHAT I'M CALLING 982 00:46:09,600 --> 00:46:14,400 THE GIG ECONOMY AND IN THE CASE 983 00:46:14,400 --> 00:46:17,560 OF DIRECT TO CONSUMER WE'RE 984 00:46:17,560 --> 00:46:20,720 STARTING TO SEE TASKS AND UPLOAD 985 00:46:20,720 --> 00:46:22,600 DATA FOR PAYMENT AND THAT 986 00:46:22,600 --> 00:46:24,560 REMINDS ME OF AMAZON'S 987 00:46:24,560 --> 00:46:31,800 MECHANICAL TUR. 988 00:46:31,800 --> 00:46:32,640 WHAT ARE CONSEQUENCES? 989 00:46:32,640 --> 00:46:37,080 YOU CAN HAVE BURNOUT THAT CAN 990 00:46:37,080 --> 00:46:41,000 IMPACT DATA REPRESENTATIVENESS 991 00:46:41,000 --> 00:46:45,440 AND QUALITY AND CAN IMPACT 992 00:46:45,440 --> 00:46:45,760 RESEARCHERS. 993 00:46:45,760 --> 00:46:46,360 OTHER USE OF THE DATA. 994 00:46:46,360 --> 00:46:48,560 IT'S ALL CONNECTED. 995 00:46:48,560 --> 00:46:53,960 YOU HAVE CONTINUATION OF 996 00:46:53,960 --> 00:46:55,880 INEQUITABLE RESEARCH BENEFITS 997 00:46:55,880 --> 00:46:57,000 THEY GET GRANT FUNDING AND 998 00:46:57,000 --> 00:46:59,680 OPPORTUNITIES TO TALK AT PANELS 999 00:46:59,680 --> 00:47:02,480 AND PARTICIPANTS WHAT DO THEY 1000 00:47:02,480 --> 00:47:05,320 GET? 1001 00:47:05,320 --> 00:47:10,560 THIS DEALS WITH LABOR AND 1002 00:47:10,560 --> 00:47:14,280 CLINICAL SUPPORT STAFF AND I 1003 00:47:14,280 --> 00:47:16,760 WONDER DO THESE GO TO UNFAIR 1004 00:47:16,760 --> 00:47:17,160 LABOR PRACTICES. 1005 00:47:17,160 --> 00:47:23,880 MOVING ON TO TRANSFER AND 1006 00:47:23,880 --> 00:47:24,520 STORAGE. 1007 00:47:24,520 --> 00:47:25,560 NEUROSCIENCE IS ISN'T USUALLY 1008 00:47:25,560 --> 00:47:31,200 SHARED IN ISOLATION AND YOU 1009 00:47:31,200 --> 00:47:34,600 CAN'T REALLY DO TOO MUCH WITH A 1010 00:47:34,600 --> 00:47:38,320 FEW SLICES OF THE BRAIN. 1011 00:47:38,320 --> 00:47:41,920 WHEN WE SHARE NEURO DATA WE 1012 00:47:41,920 --> 00:47:44,440 SHARE TONS OF OTHER INFORMATION 1013 00:47:44,440 --> 00:47:47,640 TO PROVIDE CONTEXT AND MAKE THE 1014 00:47:47,640 --> 00:47:50,480 DATA USABLE WE MAY HAVE TIME 1015 00:47:50,480 --> 00:47:54,200 SERIES AND METADATA AND LIKELY 1016 00:47:54,200 --> 00:47:56,920 SHARE OUR SCANNING PARAMETERS 1017 00:47:56,920 --> 00:48:01,000 AND STIMULI AND MAYBE IMAGE MAPS 1018 00:48:01,000 --> 00:48:04,560 OR DATA THAT CO-OCCURRED WITH 1019 00:48:04,560 --> 00:48:06,280 THE NEURO DATA SHARED WITH THE 1020 00:48:06,280 --> 00:48:09,400 VISIT OR PART OF A LARGER STUDY 1021 00:48:09,400 --> 00:48:11,320 AND MAY SHARE CLEAN VERSIONS OR 1022 00:48:11,320 --> 00:48:13,120 DOWN VERSIONS OF THE DATA AND 1023 00:48:13,120 --> 00:48:16,040 MAYBE THINGS WE ANALYZED AND MAY 1024 00:48:16,040 --> 00:48:18,560 PROVIDE OPEN SOURCE CODE OR 1025 00:48:18,560 --> 00:48:24,200 PAPERS WITH RESULTS. 1026 00:48:24,200 --> 00:48:26,320 MAYBE WE DON'T INCLUDE DATA FROM 1027 00:48:26,320 --> 00:48:28,640 PEOPLE WHO DIDN'T PASS ALL 1028 00:48:28,640 --> 00:48:29,400 ELIGIBILITY CRITERIA OR COMPLETE 1029 00:48:29,400 --> 00:48:31,520 THE FULL STUDY OR WHO IS BRAIN 1030 00:48:31,520 --> 00:48:34,600 WAS LABELLED AS AN OUTLIER DUE 1031 00:48:34,600 --> 00:48:40,560 TO NOISE THAT WAS SEEN. 1032 00:48:40,560 --> 00:48:48,320 IT BRINGS UP RISK NOT 1033 00:48:48,320 --> 00:48:49,320 NECESSARILY AROUND NEURO DATA 1034 00:48:49,320 --> 00:48:54,560 WITH THE TRANSFER OR IN A 1035 00:48:54,560 --> 00:48:54,960 REPOSITORY. 1036 00:48:54,960 --> 00:48:56,360 YOU HAVE NOT JUST MORE 1037 00:48:56,360 --> 00:48:58,600 INFORMATION BUT DIFFERENT KINDS 1038 00:48:58,600 --> 00:48:59,960 OF INFORMATION AND THAT WILL 1039 00:48:59,960 --> 00:49:06,600 MAKE YOU MORE LIKELY TO R 1040 00:49:06,600 --> 00:49:08,680 RE-IDENTIFY SOMEBODY AND I WORRY 1041 00:49:08,680 --> 00:49:13,480 ABOUT UNCONSENTS DATA FOR 1042 00:49:13,480 --> 00:49:16,280 INDIVIDUALS OR COMMUNITIES. 1043 00:49:16,280 --> 00:49:19,280 FMRI ARE NOT SUPER SCALABLE AND 1044 00:49:19,280 --> 00:49:21,160 EEG IS PRONE TO MOVING ARTIFACTS 1045 00:49:21,160 --> 00:49:22,920 BUT WHEN YOU PAIR THIS WITH 1046 00:49:22,920 --> 00:49:24,680 OTHER KINDS OF DATA EASILY 1047 00:49:24,680 --> 00:49:27,160 COLLECTED LIKE VOICE, SMARTPHONE 1048 00:49:27,160 --> 00:49:36,000 OR ACCELEROMETERS CAN BE USED 1049 00:49:36,000 --> 00:49:38,440 FOR THAT WERE CONSENTED TO AND 1050 00:49:38,440 --> 00:49:39,040 FIND SO-CALLED PATTERNS IN 1051 00:49:39,040 --> 00:49:45,440 GROUPS OF INDIVIDUALS. 1052 00:49:45,440 --> 00:49:49,080 MOVING ON TO DATA USE, SAY I'M A 1053 00:49:49,080 --> 00:49:51,360 RESEARCHER AND DISCOVERED A PAIN 1054 00:49:51,360 --> 00:49:56,800 BIO MARKER FOR FUTURE RESPONSE 1055 00:49:56,800 --> 00:50:00,160 TO TREATMENT AND MAYBE THAT 1056 00:50:00,160 --> 00:50:04,840 HELPS PHYSICIANS TRIAGE 1057 00:50:04,840 --> 00:50:06,600 TREATMENT BETTER AND SAY 1058 00:50:06,600 --> 00:50:12,280 PATIENTS CONSENTED AND SAY I 1059 00:50:12,280 --> 00:50:15,120 UPLOAD THIS TO OPEN REPOSITORY. 1060 00:50:15,120 --> 00:50:20,480 SAY SOMEONE COMES ALONG ANOTHER 1061 00:50:20,480 --> 00:50:23,440 RESEARCHER AND THEY WANT TO 1062 00:50:23,440 --> 00:50:26,440 REPRODUCE THIS BIOMARKER AND 1063 00:50:26,440 --> 00:50:29,200 THIS IS A BENEFIT OF DATA 1064 00:50:29,200 --> 00:50:30,960 SHARING FOR ROBUSTNESS OR 1065 00:50:30,960 --> 00:50:34,240 VALIDITY OF A PREVIOUS FINDING. 1066 00:50:34,240 --> 00:50:36,560 WHAT IF THEY ADVOCATE FOR A 1067 00:50:36,560 --> 00:50:38,200 PRE-EXISTING CONDITION THAT MAY 1068 00:50:38,200 --> 00:50:41,760 BE USED TO DENY PATIENT'S 1069 00:50:41,760 --> 00:50:42,000 INSURANCE? 1070 00:50:42,000 --> 00:50:45,480 OR APPLY THIS TO A WORKMAN'S 1071 00:50:45,480 --> 00:50:47,440 COMPENSATION USE CASE TO DENY 1072 00:50:47,440 --> 00:50:50,440 SOMEONE FOR COMPENSATION OF ON 1073 00:50:50,440 --> 00:50:54,240 THE JOB INJURIES? 1074 00:50:54,240 --> 00:50:59,520 IT COULD IMPACT HEALTH AND 1075 00:50:59,520 --> 00:51:03,400 LIVELIHOOD AND COULD BE ANTI 1076 00:51:03,400 --> 00:51:04,720 THETICAL TO WHAT THE PATIENT 1077 00:51:04,720 --> 00:51:05,400 SIGNED UP FOR. 1078 00:51:05,400 --> 00:51:07,560 SAY I UPLOAD THE DATA SET AND 1079 00:51:07,560 --> 00:51:09,920 MORE DATA WITH IT AND ANOTHER 1080 00:51:09,920 --> 00:51:12,800 RESEARCHER UPLOADS A DIFFERENT 1081 00:51:12,800 --> 00:51:16,240 DATA SET FOR ANOTHER BIOMARKER 1082 00:51:16,240 --> 00:51:19,440 BUT HAS ENOUGH DATA WITH IT AND 1083 00:51:19,440 --> 00:51:21,960 MAYBE THE SCANNING PARAMETERS 1084 00:51:21,960 --> 00:51:22,600 ARE SIMILAR. 1085 00:51:22,600 --> 00:51:27,880 THEY BOTH PUT THIS ON THE 1086 00:51:27,880 --> 00:51:29,920 REPOSITORY AND SAY ANOTHER 1087 00:51:29,920 --> 00:51:30,880 RESEARCH GROUP WAS ABLE TO 1088 00:51:30,880 --> 00:51:32,520 AGGREGATE THE DATA AND ABLE TO 1089 00:51:32,520 --> 00:51:34,400 FIND EVIDENCE FOR A LINK BETWEEN 1090 00:51:34,400 --> 00:51:35,120 THE TWO CONDITIONS. 1091 00:51:35,120 --> 00:51:37,840 THIS COULD BE A GOOD THING. 1092 00:51:37,840 --> 00:51:41,600 ONE OF THE REASONS WE SHARED 1093 00:51:41,600 --> 00:51:43,920 DATA IS TO HELP GENERATION THIS 1094 00:51:43,920 --> 00:51:49,320 TO HELP OTHERS AND ALSO OPENS 1095 00:51:49,320 --> 00:51:53,480 THE DOOR TO CREATING INFERENCES 1096 00:51:53,480 --> 00:51:56,440 THEY MAY NOT HAVE CONSENTED TO 1097 00:51:56,440 --> 00:52:00,480 OR WANTED BY THEM. 1098 00:52:00,480 --> 00:52:02,280 THE RISK OF SHARING DATA IN THIS 1099 00:52:02,280 --> 00:52:08,560 WAY THERE'S A RISK OF UNWANTED, 1100 00:52:09,520 --> 00:52:13,600 UNCONSENTED USE OF DATA AND 1101 00:52:13,600 --> 00:52:17,000 IMPLICATIONS FOR HARM BECAUSE 1102 00:52:17,000 --> 00:52:19,760 IT'S POSSIBLE IN THE LONG TERM 1103 00:52:19,760 --> 00:52:21,000 THIS DATA COULD BE USED AGAINST 1104 00:52:21,000 --> 00:52:24,800 PEOPLE WHO VOLUNTEER TO HELP 1105 00:52:24,800 --> 00:52:25,000 FOLKS. 1106 00:52:25,000 --> 00:52:33,440 AND DATA SHARING CAN CAUSE DATA 1107 00:52:33,440 --> 00:52:37,480 AGGREGATION LEADING TO 1108 00:52:37,480 --> 00:52:39,720 STIGMATISM AND MANY OPEN 1109 00:52:39,720 --> 00:52:40,320 REPOSITORIES IT'S EASY AND 1110 00:52:40,320 --> 00:52:42,400 SOMETIMES ENCOURAGED TO USE DATA 1111 00:52:42,400 --> 00:52:43,560 OUT OF CONTEXT. 1112 00:52:43,560 --> 00:52:47,200 FOR EXAMPLE, TAKING A DATA SET 1113 00:52:47,200 --> 00:52:48,760 THAT WAS MEANT TO COMPARE 1114 00:52:48,760 --> 00:52:49,920 COGNITIVE REWARD DIFFERENCES 1115 00:52:49,920 --> 00:52:52,080 BETWEEN PATIENTS AND USE IT TO 1116 00:52:52,080 --> 00:52:53,160 COMPARE COGNITIVE REWARD 1117 00:52:53,160 --> 00:52:54,080 DIFFERENCES BETWEEN MEN AND 1118 00:52:54,080 --> 00:52:55,000 WOMEN OR PEOPLE OF DIFFERENT 1119 00:52:55,000 --> 00:53:02,680 AGES. 1120 00:53:02,680 --> 00:53:04,680 AND I KNOW WE'RE ALMOST OUT OF 1121 00:53:04,680 --> 00:53:06,080 TIME SO FOR THE SAKE OF TIME 1122 00:53:06,080 --> 00:53:08,600 GOING TO RUN THIS QUICKLY TO GET 1123 00:53:08,600 --> 00:53:16,320 TO THE DISCUSSION. 1124 00:53:16,320 --> 00:53:18,240 THERE'S IN WAYS TO IMPROVE 1125 00:53:18,240 --> 00:53:20,760 CONSENT FORMS AND METHODS AND 1126 00:53:20,760 --> 00:53:22,560 PROCESSES AND RESEARCHERS CAN 1127 00:53:22,560 --> 00:53:23,960 RECEIVE ADDITIONAL TRAINING AND 1128 00:53:23,960 --> 00:53:24,720 CAN HELP PARTICIPANTS UNDERSTAND 1129 00:53:24,720 --> 00:53:29,840 THE NUANCES OF DATA AS WELL WE 1130 00:53:29,840 --> 00:53:31,960 COULD CONTINUE TO EMPLOY STATE 1131 00:53:31,960 --> 00:53:33,520 OF THE ART TECHNOLOGY TO SECURE 1132 00:53:33,520 --> 00:53:36,760 DATA AND UPHOLD EXISTING 1133 00:53:36,760 --> 00:53:39,480 STANDARDS FOR DEIDENTIFICATION 1134 00:53:39,480 --> 00:53:40,880 AND MAY WANT TO CREATE NEW 1135 00:53:40,880 --> 00:53:42,040 STANDARDS IN THE PROCESS AND 1136 00:53:42,040 --> 00:53:43,480 THOUGH THIS WAS MENTIONED 1137 00:53:43,480 --> 00:53:45,880 YESTERDAY I WANT TO ECHO IT 1138 00:53:45,880 --> 00:53:49,640 HERE, WE CAN BE MORE TRANSPARENT 1139 00:53:49,640 --> 00:53:54,040 ABOUT DATA STORAGE WITH 1140 00:53:54,040 --> 00:53:55,960 PARTICIPANTS AND IN TERMS OF 1141 00:53:55,960 --> 00:53:58,360 USE, I WOULD RECOMMEND DOING A 1142 00:53:58,360 --> 00:54:00,000 FORMAL REQUEST OR APPROVAL 1143 00:54:00,000 --> 00:54:01,480 PROCESS WHICH MAY INCLUDE 1144 00:54:01,480 --> 00:54:04,840 SPECIFIC TERMS OF USE, DATA 1145 00:54:04,840 --> 00:54:07,240 LICENSES, DURATION, MAYBE 1146 00:54:07,240 --> 00:54:10,600 ENFORCING PREREGISTRATION TO 1147 00:54:10,600 --> 00:54:12,520 PREVENT FISHING EXPEDITIONS AND 1148 00:54:12,520 --> 00:54:13,640 THERE NEEDS TO BE WAYS OF 1149 00:54:13,640 --> 00:54:15,920 TRACKING AND AUDITING THE USE OF 1150 00:54:15,920 --> 00:54:18,560 DATA AND CONSEQUENCES TO SOL 1151 00:54:18,560 --> 00:54:20,320 VIOLATING THE TERMS AND I THINK 1152 00:54:20,320 --> 00:54:22,560 THERE NEEDS TO BE OPEN FEEDBACK 1153 00:54:22,560 --> 00:54:23,880 MECHANISMS FOR RESEARCHERS, 1154 00:54:23,880 --> 00:54:24,760 PARTICIPANTS OR ANYONE FOR THAT 1155 00:54:24,760 --> 00:54:29,960 MATTER TO BE ABLE TO REPORT 1156 00:54:29,960 --> 00:54:33,840 CONCERNS WHEN IT COMES SOME DATA 1157 00:54:33,840 --> 00:54:35,800 AND I HAVE OPEN QUESTIONS OR 1158 00:54:35,800 --> 00:54:36,880 CONCERNS TO CLOSE WITH. 1159 00:54:36,880 --> 00:54:42,520 PEOPLE WHO HEARD ME TALK BEFORE 1160 00:54:42,520 --> 00:54:48,480 KNOW I THINK SPINAL CORD SIGNALS 1161 00:54:48,480 --> 00:54:50,280 WE KNOW THEY'RE ALSO USED TO 1162 00:54:50,280 --> 00:54:53,200 QUIN FER PERCEPTIONS IN SOME 1163 00:54:53,200 --> 00:54:54,440 CASES THE ACTION MAY BE EASIER 1164 00:54:54,440 --> 00:54:57,160 TO COLLECT AND MAY RESULT IN 1165 00:54:57,160 --> 00:55:02,480 SIMILAR INDIVIDUAL AND OTHER 1166 00:55:02,480 --> 00:55:04,920 HARMS AND OTHER DATA FOR 1167 00:55:04,920 --> 00:55:06,600 ADDITIONAL INFORMATION OR TO 1168 00:55:06,600 --> 00:55:12,080 CREATE PROXIES OR COIL OF NEURO 1169 00:55:12,080 --> 00:55:14,440 DATA OR USE TO INFER THINGS 1170 00:55:14,440 --> 00:55:18,000 ABOUT PEOPLE. 1171 00:55:18,000 --> 00:55:21,880 ARE WE TRYING TO PROTECT DATA OR 1172 00:55:21,880 --> 00:55:22,480 PEOPLE? 1173 00:55:22,480 --> 00:55:24,640 AND IS IT THE DATA HARMFUL AND 1174 00:55:24,640 --> 00:55:27,480 RISKY OR HOW ARE THE DATA ARE 1175 00:55:27,480 --> 00:55:28,880 CREATE AND USED BY PEOPLE THAT 1176 00:55:28,880 --> 00:55:30,440 CREATES THE RISK FOR HARM? 1177 00:55:30,440 --> 00:55:32,440 THE FRAMING OF THE QUESTIONS 1178 00:55:32,440 --> 00:55:33,560 DETERMINES THE ANSWERS THAT ARE 1179 00:55:33,560 --> 00:55:33,840 POSSIBLE. 1180 00:55:33,840 --> 00:55:44,240 THANK YOU FOR LISTENING. 1181 00:55:46,480 --> 00:55:48,560 >>THANK YOU, DR. BERGER DO WE 1182 00:55:48,560 --> 00:55:56,160 HAVE QUESTIONS INSIDE THE ROOM? 1183 00:55:56,160 --> 00:55:58,480 >>THANK YOU, THAT WAS A 1184 00:55:58,480 --> 00:55:59,000 WONDERFUL PRESENTATION. 1185 00:55:59,000 --> 00:56:00,720 MY QUESTION IS ON THE LAST POINT 1186 00:56:00,720 --> 00:56:06,280 WHICH I WHOLEHEARTEDLY AGREE 1187 00:56:06,280 --> 00:56:10,560 WITH IN THINKING ABOUT BRAIN 1188 00:56:10,560 --> 00:56:13,960 DATA AND SO MANY TECHNOLOGIES 1189 00:56:13,960 --> 00:56:15,320 AND DATA INFERENCES ABOUT BRAINS 1190 00:56:15,320 --> 00:56:16,760 AND MENTAL EXPERIENCES. 1191 00:56:16,760 --> 00:56:20,440 GIVEN THAT AS YOU PUT UP THAT 1192 00:56:20,440 --> 00:56:21,840 SECOND TO LAST SLIDE HOW TO 1193 00:56:21,840 --> 00:56:23,960 THINK ABOUT THE DIFFERENT 1194 00:56:23,960 --> 00:56:25,280 ASPECTS OF PROTECTION FROM 1195 00:56:25,280 --> 00:56:30,560 COLLECTION, TRANSFER AND 1196 00:56:30,560 --> 00:56:33,720 STORAGE, WHAT CHANGES IN HOW YOU 1197 00:56:33,720 --> 00:56:35,360 THINK ABOUT THE SPECTRUM OF 1198 00:56:35,360 --> 00:56:38,480 PROTECTIONS YOU SUGGESTED MEAN 1199 00:56:38,480 --> 00:56:44,200 IT SHOULD BE INCLUSIVE ACROSS 1200 00:56:44,200 --> 00:56:45,480 THE DATA. 1201 00:56:45,480 --> 00:56:47,680 IT'S DIFFERENT IN THE COLLECTION 1202 00:56:47,680 --> 00:56:49,800 PROCESS IF YOU'RE TALKING ABOUT 1203 00:56:49,800 --> 00:56:52,320 A RESEARCH STUDY OR CONSUMER 1204 00:56:52,320 --> 00:56:53,800 APPLICATION YOU'RE TALKING ABOUT 1205 00:56:53,800 --> 00:56:56,320 SOCIAL MEDIA, DIGITAL TRACES, 1206 00:56:56,320 --> 00:56:58,480 EVERY DAY ACTIVITIES USED TO 1207 00:56:58,480 --> 00:57:02,480 CREATE PROFILES TO MAKE 1208 00:57:02,480 --> 00:57:07,800 INFERENCES OF EXPERIENCES. 1209 00:57:07,800 --> 00:57:08,880 WHERE'S FIT INTO THE PREVIOUS 1210 00:57:08,880 --> 00:57:10,960 SLIDE AS YOU THINK ABOUT THE 1211 00:57:10,960 --> 00:57:12,160 PROTECTIONS WE SHOULD PUT INTO 1212 00:57:12,160 --> 00:57:12,360 PLACE. 1213 00:57:12,360 --> 00:57:14,280 >>I WISH I HAD AN ANSWER FOR 1214 00:57:14,280 --> 00:57:15,560 THIS AND WE WOULDN'T HAVE TO 1215 00:57:15,560 --> 00:57:16,640 HAVE THIS TALK TODAY. 1216 00:57:16,640 --> 00:57:19,680 I THINK THAT'S WHY I FOCUS NOT 1217 00:57:19,680 --> 00:57:21,960 NECESSARILY ON THE KIND OF DATA 1218 00:57:21,960 --> 00:57:23,400 BUT AGAIN WHAT IT'S USED FOR AND 1219 00:57:23,400 --> 00:57:24,680 HOW IT'S COLLECTED. 1220 00:57:24,680 --> 00:57:29,360 THEN YOU HAVE DIFFERENT WAYS OF 1221 00:57:29,360 --> 00:57:32,200 THINKING ABOUT RISK THAT ISN'T 1222 00:57:32,200 --> 00:57:33,040 NECESSARILY FORMED ON SOCIAL 1223 00:57:33,040 --> 00:57:37,360 MEDIA DATA SO IT'S NOT AS RISKY 1224 00:57:37,360 --> 00:57:42,880 OR NEURO DATA OR WHATEVER IT IS. 1225 00:57:42,880 --> 00:57:48,280 I THINK FOR ME THESE THINGS ARE 1226 00:57:48,280 --> 00:57:49,360 SO CONTEXTUALLY DEPENDENT NOT 1227 00:57:49,360 --> 00:57:52,120 SAYING WE CAN'T HAVE RULES BUT A 1228 00:57:52,120 --> 00:57:57,560 LOT OF TIMES WE HAVE TO BE ABLE 1229 00:57:57,560 --> 00:58:00,040 TO TALK TO THE COMMUNITIES THE 1230 00:58:00,040 --> 00:58:01,360 SOCIAL GROUPS TO UNDERSTAND WHAT 1231 00:58:01,360 --> 00:58:02,480 THEY'RE COMFORTABLE WITH WHEN IT 1232 00:58:02,480 --> 00:58:05,880 COMES TO SHARING THESE TYPES OF 1233 00:58:05,880 --> 00:58:06,120 THINGS. 1234 00:58:06,120 --> 00:58:07,240 A LOT OF TIMES EVEN WITH SOCIAL 1235 00:58:07,240 --> 00:58:08,760 MEDIA DATA WA YOU'RE STARTING TO 1236 00:58:08,760 --> 00:58:14,480 SEE IS THEY'RE ALSO STARTING TO 1237 00:58:14,480 --> 00:58:17,120 BE AGGREGATED WITH NEURO DATA. 1238 00:58:17,120 --> 00:58:20,480 YOU MIGHT HAVE A BRAIN SCAN, YOU 1239 00:58:20,480 --> 00:58:31,000 MAY HAVE A COUPLE FEATURES, H 1240 00:58:31,760 --> 00:58:33,400 HYPOCAMPAL VOLUME AND CORRELATE 1241 00:58:33,400 --> 00:58:35,680 IT TO THEIR POSTS OVER THE LAST 1242 00:58:35,680 --> 00:58:36,880 YEAR AND SAY SOMETHING ABOUT 1243 00:58:36,880 --> 00:58:37,080 THEM. 1244 00:58:37,080 --> 00:58:46,080 HOW DO WE START THINKING ABOUT 1245 00:58:46,080 --> 00:58:47,680 THE WAYS WE'RE PUTTING DATA 1246 00:58:47,680 --> 00:58:49,320 TOGETHER AND USING THEM OPPOSED 1247 00:58:49,320 --> 00:58:50,480 TO THE DATA THEMSELVES? 1248 00:58:50,480 --> 00:58:54,560 I KNOW IT'S KIND OF A NON-ANSWER 1249 00:58:54,560 --> 00:58:56,400 BUT I KEEP COMING BACK TO THE 1250 00:58:56,400 --> 00:58:57,440 FRAMING OF THE QUESTION BEYOND 1251 00:58:57,440 --> 00:59:07,680 ANYTHING ELSE. 1252 00:59:11,800 --> 00:59:15,360 >>AFTER THE TIME YOU SPENT IN 1253 00:59:15,360 --> 00:59:18,560 ACADEMIA AND INDUSTRY AND FOR A 1254 00:59:18,560 --> 00:59:20,320 LOT OF US AROUND THE TABLE NOT 1255 00:59:20,320 --> 00:59:21,400 SURE WHAT'S GOING ON IN THE 1256 00:59:21,400 --> 00:59:23,120 INDUSTRY DO YOU HAVE A SENSE 1257 00:59:23,120 --> 00:59:24,600 WHERE THE BIGGEST RISKS ARE AND 1258 00:59:24,600 --> 00:59:26,000 WE'RE NOT AWARE OF? 1259 00:59:26,000 --> 00:59:27,800 >>I DON'T KNOW HOW MUCH I CAN 1260 00:59:27,800 --> 00:59:30,560 ANSWER THAT QUESTION GIVEN MY 1261 00:59:30,560 --> 00:59:37,160 POSITION. 1262 00:59:37,160 --> 00:59:38,480 THERE'S INTERSECTIONS AND I CAN 1263 00:59:38,480 --> 00:59:42,600 TALK ABOUT THE NOTION OF BIG 1264 00:59:42,600 --> 00:59:43,640 DATA. 1265 00:59:43,640 --> 00:59:46,600 NEUROSCIENCE ESPECIALLY IF MRI 1266 00:59:46,600 --> 00:59:50,480 STUDIES ARE NOTORIOUSLY UNDER 1267 00:59:50,480 --> 00:59:53,320 SAMPLED AND PEOPLE MAKE WILD 1268 00:59:53,320 --> 00:59:55,920 CLAIMS OVER A SAMPLE OF 5 OR 10 1269 00:59:55,920 --> 00:59:56,240 PEOPLE. 1270 00:59:56,240 --> 00:59:58,360 THE DEGREES OF FREEDOM IN THEIR 1271 00:59:58,360 --> 00:59:59,440 STATISTICAL ANALYSIS DO NOT 1272 00:59:59,440 --> 01:00:00,960 SUPPORT THE SAMPLE SIZE THEY 1273 01:00:00,960 --> 01:00:04,920 HAVE. 1274 01:00:04,920 --> 01:00:06,600 WE DO NEED MORE DATA WE NEED TO 1275 01:00:06,600 --> 01:00:08,320 LEVERAGE THIS AND ANALYTICS. 1276 01:00:08,320 --> 01:00:13,600 THE MORE DATA YOU HAVE THE MORE 1277 01:00:13,600 --> 01:00:16,080 COMPLEX THE DATA AND ALGORITHMS 1278 01:00:16,080 --> 01:00:17,840 USED TO ANALYZE THIS DATA. 1279 01:00:17,840 --> 01:00:20,480 IT GETS HARDER AND HARDER TO BE 1280 01:00:20,480 --> 01:00:22,600 TRANSPARENT AND TO FIX THINGS 1281 01:00:22,600 --> 01:00:25,040 AND FIX THINGS AT SCALE. 1282 01:00:25,040 --> 01:00:28,120 FOR ME GENERALLY SPEAKING I'M 1283 01:00:28,120 --> 01:00:30,560 WORRIED ABOUT TRANSPARENCY AND 1284 01:00:30,560 --> 01:00:36,000 SCALABILITY OF HARMS NOT JUST 1285 01:00:36,000 --> 01:00:46,320 BENEFITS AND WHILE WE'RE 1286 01:00:46,320 --> 01:00:49,040 FOCUSSED ON A LOT OF THE THINGS 1287 01:00:49,040 --> 01:00:51,480 THAT GET ATTENTION IN THE MEDIA 1288 01:00:51,480 --> 01:00:54,560 LIKE CHAT GPT THEY'RE ALSO 1289 01:00:54,560 --> 01:00:55,080 CONNECTED TO THINGS WE'RE 1290 01:00:55,080 --> 01:00:56,440 WORKING ON. 1291 01:00:56,440 --> 01:01:03,720 WILL ALEX PRESENTED AWESOME WORK 1292 01:01:03,720 --> 01:01:06,520 WITH GPT AND WE HAVE 1293 01:01:06,520 --> 01:01:08,760 INTERSECTION OF LARGE LANGUAGE 1294 01:01:08,760 --> 01:01:10,160 MODELS AND NEURO DATA. 1295 01:01:10,160 --> 01:01:13,400 WE NEED TO THINK OF THIS IN 1296 01:01:13,400 --> 01:01:14,480 COMBINATION WITH EACH OTHER. 1297 01:01:14,480 --> 01:01:16,240 I'M SORRY I CAN'T BE MORE 1298 01:01:16,240 --> 01:01:21,640 SPECIFIC BUT I HOPE IT WAS 1299 01:01:21,640 --> 01:01:21,880 HELPFUL. 1300 01:01:21,880 --> 01:01:24,000 >>LET ME OPEN UP THE PANEL AND 1301 01:01:24,000 --> 01:01:26,680 WE HAVE TWO OR THREE QUESTIONS 1302 01:01:26,680 --> 01:01:32,480 IN THE ROOM. 1303 01:01:32,480 --> 01:01:38,480 >>WONDERFUL TALK. 1304 01:01:38,480 --> 01:01:42,160 YOU GAVE SOME SOLUTIONS AND THE 1305 01:01:42,160 --> 01:01:47,720 IDEAS YOU HAD IN TERMS OF DATA 1306 01:01:47,720 --> 01:01:50,480 COLLECTION AND STORAGE AND 1307 01:01:50,480 --> 01:01:52,600 TRANSFER ARE THINGS WE TALKED 1308 01:01:52,600 --> 01:01:54,040 ABOUT BUT WHAT WE TALKED LESS 1309 01:01:54,040 --> 01:01:58,680 ABOUT IS PUTTING CONTROLS ON USE 1310 01:01:58,680 --> 01:02:02,920 YOU MENTIONED TWO I CAN 1311 01:02:02,920 --> 01:02:03,480 REMEMBER. 1312 01:02:03,480 --> 01:02:04,920 UP WITH WAS A MORE FORMAL 1313 01:02:04,920 --> 01:02:05,760 REQUEST AND APPROVAL PROCESS AND 1314 01:02:05,760 --> 01:02:07,840 THE OTHER WAS INCENTIVE FOR 1315 01:02:07,840 --> 01:02:08,520 TRACKING AND MONITORING USE OF 1316 01:02:08,520 --> 01:02:15,360 DATA. 1317 01:02:15,360 --> 01:02:16,560 DO YOU THINK THEY WOULD WORK, 1318 01:02:16,560 --> 01:02:17,920 NUMBER ONE AND DO YOU THINK 1319 01:02:17,920 --> 01:02:23,000 THERE'S A POLITICAL WILL TO DO 1320 01:02:23,000 --> 01:02:33,480 THAT BECAUSE EMPHASIS ON MORE 1321 01:02:33,480 --> 01:02:34,200 OPEN DATA. 1322 01:02:34,200 --> 01:02:36,360 >>I DON'T UNDERSTAND WHY 1323 01:02:36,360 --> 01:02:39,920 OPENNESS MEANS YOU CAN'T HAVE 1324 01:02:39,920 --> 01:02:41,760 FORMAL REQUESTS AND APPROVAL 1325 01:02:41,760 --> 01:02:42,160 PROCESSES. 1326 01:02:42,160 --> 01:02:43,560 YOU CAN SHARE THIS OPENLY BUT 1327 01:02:43,560 --> 01:02:44,520 PEOPLE SHOULD BE OPEN ABOUT WHAT 1328 01:02:44,520 --> 01:02:53,560 THEY'RE DOING WITH IT. 1329 01:02:53,560 --> 01:02:56,200 WHAT DO WE MEAN BY OPEN AND DATA 1330 01:02:56,200 --> 01:02:57,640 REQUEST AND APPROVAL PROCESSES 1331 01:02:57,640 --> 01:02:59,040 DON'T ALWAYS MEAN RESTRICTIONS. 1332 01:02:59,040 --> 01:03:01,960 IT'S ABOUT A SYSTEM IN PLACE 1333 01:03:01,960 --> 01:03:03,640 THAT ALLOWS PEOPLE TO UNDERSTAND 1334 01:03:03,640 --> 01:03:05,520 WHAT'S HAPPENING WITH THEIR 1335 01:03:05,520 --> 01:03:06,080 DATA. 1336 01:03:06,080 --> 01:03:07,120 NOW, GETTING TO THE POLITICAL 1337 01:03:07,120 --> 01:03:08,160 POINT AND EVEN THE TRAINING 1338 01:03:08,160 --> 01:03:09,600 POINT, THIS IS SOMETHING I 1339 01:03:09,600 --> 01:03:10,880 STRUGGLE WITH EVERY DAY AS MY 1340 01:03:10,880 --> 01:03:14,520 DAY TO DAY JOB TRYING TO WORK 1341 01:03:14,520 --> 01:03:19,920 WITH FELLOW RESEARCHERS. 1342 01:03:19,920 --> 01:03:22,320 WE'RE USED TO HAVING FREEDOMS 1343 01:03:22,320 --> 01:03:28,160 AND EVEN WITH CONSENT FORMS AND 1344 01:03:28,160 --> 01:03:33,040 WE HAVE BOILER PLATE CONSENT 1345 01:03:33,040 --> 01:03:34,320 FORMS THAT LIKE YOUR DATA MAY BE 1346 01:03:34,320 --> 01:03:38,760 USED FOR THIS OR THIS AND IT'S 1347 01:03:38,760 --> 01:03:44,120 NOT SPECIFIC. 1348 01:03:44,120 --> 01:03:44,680 THERE'S WAYS WE'VE GROWN 1349 01:03:44,680 --> 01:03:50,520 ACCUSTOMED TO DOING FISHING 1350 01:03:50,520 --> 01:04:01,040 EXPEDITION AND I THINK THERE CAN 1351 01:04:01,920 --> 01:04:02,480 BE A COMPROMISE HERE MANY MAY 1352 01:04:02,480 --> 01:04:06,400 FIND IT BURDENSOME OR UNWANTED. 1353 01:04:06,400 --> 01:04:08,480 THERE'S TRADE-OFFS WITH 1354 01:04:08,480 --> 01:04:08,760 ANYTHING. 1355 01:04:08,760 --> 01:04:09,840 >>DO YOU THINK IT WILL WORK? 1356 01:04:09,840 --> 01:04:10,600 >>I DON'T KNOW. 1357 01:04:10,600 --> 01:04:19,400 I HOPE IT DOES. 1358 01:04:19,400 --> 01:04:22,560 FOR THIS TO WORK WE HAVE TO 1359 01:04:22,560 --> 01:04:28,800 CHANGE INCENTIVES. 1360 01:04:28,800 --> 01:04:35,000 WE HAVE TO INCENTIVIZE THEM TO 1361 01:04:35,000 --> 01:04:45,520 DO THIS IN THIS WAY REPORTING 1362 01:04:47,480 --> 01:04:57,520 HAS TO CHANGE AND PEOPLE MAY 1363 01:04:57,520 --> 01:04:58,560 LIMIT ACCESS TO FULL DATA SETS. 1364 01:04:58,560 --> 01:05:04,600 ON ONE HAND THEY'RE TRYING TO 1365 01:05:04,600 --> 01:05:12,720 PREVENT IDENTIFICATION OR 1366 01:05:12,720 --> 01:05:20,320 STIGMATIZATION AND YOU MAY HAVE 1367 01:05:20,320 --> 01:05:22,560 AND NOT ALL RESEARCHERS ARE PART 1368 01:05:22,560 --> 01:05:23,240 OF THE LARGER PROCESS. 1369 01:05:23,240 --> 01:05:30,600 THERE ARE WAYS TO IMPROVE THIS 1370 01:05:30,600 --> 01:05:31,120 TOWARDS SOMETHING THAT IS 1371 01:05:31,120 --> 01:05:35,280 BETTER. 1372 01:05:35,280 --> 01:05:36,480 >>BEFORE WE MOVE ON TO THE NEXT 1373 01:05:36,480 --> 01:05:39,760 QUESTION I WANTED TO GIVE AN 1374 01:05:39,760 --> 01:05:41,360 OPPORTUNITY FOR OUR RESEARCH 1375 01:05:41,360 --> 01:05:45,720 PARTICIPANT REPRESENTS, NATHAN 1376 01:05:45,720 --> 01:05:47,200 COPELAND AND OTHERS TO SEE IF 1377 01:05:47,200 --> 01:05:49,120 THERE'S QUESTIONS OR COMMENTS AT 1378 01:05:49,120 --> 01:05:59,640 THIS POINT IN THE DISCUSSION. 1379 01:06:00,520 --> 01:06:02,760 >>I DO NOT. 1380 01:06:02,760 --> 01:06:04,880 I'M THANKFULLY FOLLOWING YOU 1381 01:06:04,880 --> 01:06:07,880 BECAUSE THE THING I VIB MY 1382 01:06:07,880 --> 01:06:08,200 PRESENTATION. 1383 01:06:08,200 --> 01:06:10,560 GOOD TO SEE OTHER PEOPLE THINK 1384 01:06:10,560 --> 01:06:14,480 THE SAME WAY. 1385 01:06:14,480 --> 01:06:20,480 >>GREAT, THANK YOU. 1386 01:06:20,480 --> 01:06:22,360 >>EN JOYED THE TALK THIS 1387 01:06:22,360 --> 01:06:22,600 MORNING. 1388 01:06:22,600 --> 01:06:26,960 THAT WAS FUN. 1389 01:06:26,960 --> 01:06:34,560 BOTH SHARED SKEPTICISM ABOUT 1390 01:06:34,560 --> 01:06:42,560 THINGS AND WE'VE SEEN BACKLATCH 1391 01:06:42,560 --> 01:06:45,000 -- BACKLASH AND ARE THERE 1392 01:06:45,000 --> 01:06:47,720 ASPECT US THINK ARE MOST WORRY 1393 01:06:47,720 --> 01:06:52,000 LIKE THE HYPE BE MORE THAN THE 1394 01:06:52,000 --> 01:06:52,280 REALITY. 1395 01:06:52,280 --> 01:06:55,560 ARE THERE THINGS IN YOU THINK 1396 01:06:55,560 --> 01:07:00,280 ARE MOST CONCERNING HERE COULD 1397 01:07:00,280 --> 01:07:10,520 BE DERIVED? 1398 01:07:11,560 --> 01:07:17,160 I'M NOT SURE BECAUSE WITHOUT THE 1399 01:07:17,160 --> 01:07:20,320 ANALYSIS THAT GIVE US CONFIDENCE 1400 01:07:20,320 --> 01:07:23,400 IN THE NUMBERS. 1401 01:07:23,400 --> 01:07:26,240 FOR EXAMPLE, PREREGISTERED 1402 01:07:26,240 --> 01:07:28,120 ANALYSES OF DATA SETS AND 1403 01:07:28,120 --> 01:07:33,280 VALIDATION SAMPLES AND THE SORT 1404 01:07:33,280 --> 01:07:37,640 OF STUFF AND NEED FAITH IN THE 1405 01:07:37,640 --> 01:07:37,880 NUMBERS. 1406 01:07:37,880 --> 01:07:38,800 I DON'T KNOW. 1407 01:07:38,800 --> 01:07:42,280 IF I HAD TO GUESS I WOULD THINK 1408 01:07:42,280 --> 01:07:43,120 FOR EXAMPLE ALZHEIMER'S RISK 1409 01:07:43,120 --> 01:07:48,960 BASED ON STRUCTURAL IMAGING DATA 1410 01:07:48,960 --> 01:07:53,120 MIGHT BE ONE OF THE EASIER 1411 01:07:53,120 --> 01:07:56,480 THINGS TO GET BUT WHETHER IT'S 1412 01:07:56,480 --> 01:07:58,600 GOING TO BE PREDICTION WITH 1413 01:07:58,600 --> 01:07:59,920 CONFIDENCE INTERVALS THIS BIG OR 1414 01:07:59,920 --> 01:08:08,480 THIS BIG WE KNOW RIGHT NOW. 1415 01:08:08,480 --> 01:08:10,720 I LIKED WHAT YOU SAID BECAUSE 1416 01:08:10,720 --> 01:08:12,520 ABOUT HYPING ALMOST MORE 1417 01:08:12,520 --> 01:08:13,840 DANGEROUS. 1418 01:08:13,840 --> 01:08:18,560 TOO, TO YOUR POINT ALEX ABOUT 1419 01:08:18,560 --> 01:08:22,000 WHAT IS SOMETHING FEASIBLY -- 1420 01:08:22,000 --> 01:08:28,640 WHAT CAN BE FEASIBLY INFERENCED. 1421 01:08:28,640 --> 01:08:30,840 EVEN IF IT CAN'T BE THE DOESN'T 1422 01:08:30,840 --> 01:08:33,640 STOP PEOPLE FROM DOING SO AND I 1423 01:08:33,640 --> 01:08:35,240 THINK OF PAIN BIOMARKERS. 1424 01:08:35,240 --> 01:08:37,000 IT'S BEEN A WHILE SINCE I LOOKED 1425 01:08:37,000 --> 01:08:42,080 AT THE LITERATURE BUT AT SOME 1426 01:08:42,080 --> 01:08:44,360 POINT IF SOMEONE WAS IN ACUTE 1427 01:08:44,360 --> 01:08:46,440 THERMAL PAIN, FOR EXAMPLE, THEY 1428 01:08:46,440 --> 01:08:48,000 WERE GETTING BURNED OR IF 1429 01:08:48,000 --> 01:08:54,080 SOMEONE WAS EXPERIENCED ACUTE 1430 01:08:54,080 --> 01:08:56,480 PRESSURE PAIN THAT'S NOT THE 1431 01:08:56,480 --> 01:08:58,600 SAME AS CHRONIC PAIN BIOMARKERS 1432 01:08:58,600 --> 01:09:02,200 AND THERE'S A BUNCH OF DEBATE AS 1433 01:09:02,200 --> 01:09:03,680 TO WHETHER OR NOT THESE ARE 1434 01:09:03,680 --> 01:09:06,760 ACCURATE OR HOW ROBUST THEY ARE 1435 01:09:06,760 --> 01:09:10,600 AND STUCH OR THAT YOU CAN EVEN 1436 01:09:10,600 --> 01:09:12,080 MEASURE CHRONIC PAIN IN THE 1437 01:09:12,080 --> 01:09:12,480 FIRST PLACE. 1438 01:09:12,480 --> 01:09:18,560 PEOPLE ARE NOT JUST TALKING THEM 1439 01:09:18,560 --> 01:09:26,480 BUT THEY WANT TO USE THEM THEY 1440 01:09:26,480 --> 01:09:31,160 WANT TO USE THEM IN PROGRAMS. 1441 01:09:31,160 --> 01:09:33,240 EVEN IF THE INFERENCES AND 1442 01:09:33,240 --> 01:09:35,400 TECHNOLOGY AREN'T THERE YET IT'S 1443 01:09:35,400 --> 01:09:36,280 NOT NECESSARILY STOPPING PEOPLE 1444 01:09:36,280 --> 01:09:39,120 FROM USING THEM IN THAT WAY. 1445 01:09:39,120 --> 01:09:40,840 THAT'S KIND OF MY MAJOR CONCERN 1446 01:09:40,840 --> 01:09:41,800 MORE SO THAN HOW ACCURATE THEY 1447 01:09:41,800 --> 01:09:48,040 ARE. 1448 01:09:48,040 --> 01:09:50,080 >>THANK YOU BOTH FOR YOUR 1449 01:09:50,080 --> 01:09:51,400 PRESENTATIONS THIS MORNING. 1450 01:09:51,400 --> 01:09:54,200 THEY WERE ENLIGHTENING. 1451 01:09:54,200 --> 01:09:57,080 I HAVE A QUESTION FOR SARA. 1452 01:09:57,080 --> 01:10:03,760 TALK ABOUT IMPROVING INFORMED 1453 01:10:03,760 --> 01:10:10,600 CONSENT AND DO YOU HAVE OTHER 1454 01:10:10,600 --> 01:10:16,640 INSIGHTS FOR DATA USAGE? 1455 01:10:16,640 --> 01:10:22,480 >>PEOPLE TALK ABOUT GRANULAR 1456 01:10:22,480 --> 01:10:23,880 CONTROLS AND HAVING PLACES WHERE 1457 01:10:23,880 --> 01:10:27,840 PEOPLE CAN OPT IN AND OPT OUT TO 1458 01:10:27,840 --> 01:10:30,560 SHARING THEIR RESEARCH FOR 1459 01:10:30,560 --> 01:10:33,040 DIFFERENT PURPOSES OR FOR 1460 01:10:33,040 --> 01:10:35,080 DIFFERENT REPOSITORIES. 1461 01:10:35,080 --> 01:10:36,080 SOMEONE YESTERDAY TALKED ABOUT 1462 01:10:36,080 --> 01:10:38,480 HAVING DYNAMIC CONSENT AND I 1463 01:10:38,480 --> 01:10:41,800 ADMIT THAT IS HARD TO CURRENTLY 1464 01:10:41,800 --> 01:10:43,800 DO AT LEAST IN THE U.S. 1465 01:10:43,800 --> 01:10:46,600 AT THE VERY LEAST HAVING PEOPLE 1466 01:10:46,600 --> 01:10:50,480 TO EASILY CHANGE THEIR MINDS 1467 01:10:50,480 --> 01:10:53,400 ABOUT THEY'RE DATA AND HAVING IT 1468 01:10:53,400 --> 01:10:53,680 FEASIBLE. 1469 01:10:53,680 --> 01:10:56,480 WHEN I WAS IN GRAD SCHOOL IT WAS 1470 01:10:56,480 --> 01:10:57,000 AN ARDUOUS PROCESS. 1471 01:10:57,000 --> 01:10:58,560 SOMEONE WOULD HAVE TO GO BACK TO 1472 01:10:58,560 --> 01:11:00,680 THEIR CONSENT FORM, FIGURE OUT 1473 01:11:00,680 --> 01:11:03,440 WHO TO CONTACT EVEN SEND AN 1474 01:11:03,440 --> 01:11:05,640 E-MAIL, WAIT FOR THEIR RESPONSE. 1475 01:11:05,640 --> 01:11:06,280 IT'S NOT FEASIBLE. 1476 01:11:06,280 --> 01:11:08,000 I THINK THERE'S MORE WE CAN DO 1477 01:11:08,000 --> 01:11:10,040 TO MAKE SURE THERE'S AT LEAST 1478 01:11:10,040 --> 01:11:19,600 SOME DYNAMICS OR SOME ABILITY TO 1479 01:11:19,600 --> 01:11:22,320 CHANGE SOMEBODY'S MIND AND MORE 1480 01:11:22,320 --> 01:11:27,200 RIGOROUS METHODS OR 1481 01:11:27,200 --> 01:11:27,520 REQUIREMENTS. 1482 01:11:27,520 --> 01:11:34,520 I THINK PEOPLE GIVE THEM THE 1483 01:11:34,520 --> 01:11:39,600 CONSENT FORM READ AND WALKING 1484 01:11:39,600 --> 01:11:42,080 THROUGH THAT WITH THEM PROVIDES 1485 01:11:42,080 --> 01:11:43,800 A MOMENT TO RESPOND TO QUESTIONS 1486 01:11:43,800 --> 01:11:45,280 AND I THINK IT SHOULD BE A 1487 01:11:45,280 --> 01:11:51,520 STANDARD. 1488 01:11:51,520 --> 01:11:55,320 I DON'T THINK WE SHOULD HAVE 1489 01:11:55,320 --> 01:11:57,240 BOILER PLATE MULTI-STUDY CONSENT 1490 01:11:57,240 --> 01:11:57,560 FORMS. 1491 01:11:57,560 --> 01:12:02,440 I THINK THEY SHOULD BE SPECIFIC 1492 01:12:02,440 --> 01:12:05,000 TO RESEARCH THAT IS BEING DONE 1493 01:12:05,000 --> 01:12:07,080 AND I THINK THERE'S MORE THAT WE 1494 01:12:07,080 --> 01:12:10,560 CAN DO THERE MAKING EXPLICIT AS 1495 01:12:10,560 --> 01:12:15,600 WELL AS WHERE THE DATA IS GOING, 1496 01:12:15,600 --> 01:12:17,320 WHAT OPEN REPOSITORIES MIGHT IT 1497 01:12:17,320 --> 01:12:18,560 GO TO. 1498 01:12:18,560 --> 01:12:25,560 THIS TYPE OF THING. 1499 01:12:25,560 --> 01:12:26,840 >>THE DATA IS COLLECTED IN 1500 01:12:26,840 --> 01:12:28,160 RESPONSE TO A STUDY. 1501 01:12:28,160 --> 01:12:29,800 AT SOME POINT IT WON'T BE FUNDED 1502 01:12:29,800 --> 01:12:32,560 AND IT'S LIKELY WILL BE IN THE 1503 01:12:32,560 --> 01:12:34,880 REPOSITORY. 1504 01:12:34,880 --> 01:12:36,080 IS THERE WAY WE SHOULD DEAL WITH 1505 01:12:36,080 --> 01:12:40,600 THAT TYPE OF ISSUE? 1506 01:12:40,600 --> 01:12:43,320 >>I'M NOT SURE BUT I WONDER 1507 01:12:43,320 --> 01:12:45,480 LIKE IN THE E.U. THE RIGHT TO BE 1508 01:12:45,480 --> 01:12:45,800 FORGOTTEN. 1509 01:12:45,800 --> 01:12:47,640 I DON'T KNOW IF THERE'S A WAY WE 1510 01:12:47,640 --> 01:12:52,400 CAN SET UP SYSTEMS THAT MIGHT 1511 01:12:52,400 --> 01:12:54,240 HELP TO DO SOMETHING WITH 1512 01:12:54,240 --> 01:12:56,640 RESEARCH STUDIES BUT AS I SAY 1513 01:12:56,640 --> 01:12:59,640 THAT I ADMIT YOU MAY HAVE DATA 1514 01:12:59,640 --> 01:13:00,800 THAT GETS DESTROYED AFTER A 1515 01:13:00,800 --> 01:13:03,320 CERTAIN AMOUNT OF TIME AND THE 1516 01:13:03,320 --> 01:13:04,000 INFERENCES MOVE ON AMONGST THE 1517 01:13:04,000 --> 01:13:08,480 DATA BEYOND THE DATA. 1518 01:13:08,480 --> 01:13:11,120 EVEN THAT IT'S HARD TO TAKE AWAY 1519 01:13:11,120 --> 01:13:11,880 AN INFERENCE. 1520 01:13:11,880 --> 01:13:14,800 IT'S EASIER TO TAKE AWAY A DATA 1521 01:13:14,800 --> 01:13:22,960 SET. 1522 01:13:22,960 --> 01:13:24,960 >>THANK YOU. 1523 01:13:24,960 --> 01:13:28,000 I WAS STRUCK BY UNCONSENTED 1524 01:13:28,000 --> 01:13:28,400 INFERENCES. 1525 01:13:28,400 --> 01:13:32,080 IF WE TAKE A STARTING POINT IN 1526 01:13:32,080 --> 01:13:33,920 SMALL TRIALS WHERE INTENDED 1527 01:13:33,920 --> 01:13:37,240 COMMUNICATION IS DECODED, THE 1528 01:13:37,240 --> 01:13:38,520 NEURAL DATA ARE PARTICIPANTS' 1529 01:13:38,520 --> 01:13:39,880 DATA FIRST AND CAN'T HAVE TO 1530 01:13:39,880 --> 01:13:42,280 SHARE ALL OF THEM TO 1531 01:13:42,280 --> 01:13:43,080 PARTICIPATE. 1532 01:13:43,080 --> 01:13:49,520 HOW SHOULD WE THINK OF TRAIN 1533 01:13:49,520 --> 01:13:51,000 RESEARCHERS TO DISENTANGLE 1534 01:13:51,000 --> 01:13:56,360 CONSENT FROM THE TRIAL TO THE 1535 01:13:56,360 --> 01:13:58,560 CONSISTENT TO NEURAL DATA WITH 1536 01:13:58,560 --> 01:14:00,320 MORE OPEN ACCESSIBLE DATA 1537 01:14:00,320 --> 01:14:03,600 SHARING AND HOW CAN WE AS 1538 01:14:03,600 --> 01:14:08,600 RESEARCHERS BE LEARNING FROM 1539 01:14:08,600 --> 01:14:13,800 EACH OTHER HOW DIFFERENT GROUPS 1540 01:14:13,800 --> 01:14:15,560 ARE APPROACHING CONSENT AND ARE 1541 01:14:15,560 --> 01:14:18,560 THERE OPPORTUNITIES TO SHARE 1542 01:14:18,560 --> 01:14:26,360 CONSENT FOR NEURAL DATA SHARING? 1543 01:14:26,360 --> 01:14:28,160 >>I WOULD LOVE FOR US TO TALK 1544 01:14:28,160 --> 01:14:30,320 ABOUT IT IN A BREAKOUT ROOM IF 1545 01:14:30,320 --> 01:14:33,880 THAT'S PART OF WHAT WE'RE GOING 1546 01:14:33,880 --> 01:14:37,840 TO DO TODAY BECAUSE EVEN THE 1547 01:14:37,840 --> 01:14:38,800 QUESTION IS PORN. 1548 01:14:38,800 --> 01:14:39,680 I THINK MORE THAN ME SHOULD BE 1549 01:14:39,680 --> 01:14:48,200 ANSWERING THE QUESTION. 1550 01:14:48,200 --> 01:14:58,320 >>JOHN NGAI FOR THIS AND THANK 1551 01:14:58,320 --> 01:15:01,920 YOU FOR THE PRESENTATION. 1552 01:15:01,920 --> 01:15:03,360 IT'S IMPORTANT WITH INFORMED 1553 01:15:03,360 --> 01:15:05,880 CONSENT HOW CAN IT BE TRULY 1554 01:15:05,880 --> 01:15:07,920 INFORMED TO THE EXTENT IT IS 1555 01:15:07,920 --> 01:15:08,160 FUTURE? 1556 01:15:08,160 --> 01:15:12,720 IS IT EVER POSSIBLE TO MAKE IT 1557 01:15:12,720 --> 01:15:14,240 FUTURE-PROOF GIVEN WHAT WE ARE 1558 01:15:14,240 --> 01:15:19,720 SEEING IN MINING THE DATA AND 1559 01:15:19,720 --> 01:15:21,400 IT'S A FUNCTION OF PROBABILITY 1560 01:15:21,400 --> 01:15:24,080 AND IMPACT. 1561 01:15:24,080 --> 01:15:29,200 HOW DO WE FIND THE RIGHT 1562 01:15:29,200 --> 01:15:31,560 BALANCE? 1563 01:15:31,560 --> 01:15:32,680 YOU CAN NEVER FUTURE PROOF WITH 1564 01:15:32,680 --> 01:15:34,160 INFORMED CONSENT AND HOW CAN WE 1565 01:15:34,160 --> 01:15:35,160 FIND THE RIGHT BALANCE AND 1566 01:15:35,160 --> 01:15:44,960 ADJUST AS WE GO ALONG? 1567 01:15:44,960 --> 01:15:47,440 WE DON'T KNOW WHAT'S GOING TO 1568 01:15:47,440 --> 01:15:48,720 HAPPEN IN THE FUTURE. 1569 01:15:48,720 --> 01:15:51,280 THERE'S A GROUP SOME OF MY FOLKS 1570 01:15:51,280 --> 01:15:52,640 HAVE BEEN INVOLVED WITH CALLED 1571 01:15:52,640 --> 01:15:55,280 THE OPEN BRAIN CONSENT. 1572 01:15:55,280 --> 01:15:58,560 IT'S SUGGESTED CONSENT LANGUAGE 1573 01:15:58,560 --> 01:16:05,600 FOR DATA MEANT TO BE SHARED IN 1574 01:16:05,600 --> 01:16:07,320 THEM IN OPEN NEURO AND THE DATA 1575 01:16:07,320 --> 01:16:10,760 WILL BE SHARED BROADLY AND NO 1576 01:16:10,760 --> 01:16:11,960 RESTRICTION ON WHAT PEOPLE CAN 1577 01:16:11,960 --> 01:16:14,520 DO AND WHAT QUESTIONS THEY CAN 1578 01:16:14,520 --> 01:16:17,600 ASK. 1579 01:16:17,600 --> 01:16:23,000 WE'LL DO OUR BEST TO DE-IDENTIFY 1580 01:16:23,000 --> 01:16:26,520 THEM AND PREVENT IT BUT WE CAN'T 1581 01:16:26,520 --> 01:16:30,680 GUARANTEE IT WILL HAPPEN. 1582 01:16:30,680 --> 01:16:35,440 WE TRY TO TAKE THE TACK OF 1583 01:16:35,440 --> 01:16:36,760 MAKING CLEAR THAT THESE DATA 1584 01:16:36,760 --> 01:16:40,880 WILL BE SHARED BROADLY, COULD BE 1585 01:16:40,880 --> 01:16:41,920 USED BROADLY AND YOU CAN SIGN 1586 01:16:41,920 --> 01:16:43,360 THE CONSENT FORM OR NOT 1587 01:16:43,360 --> 01:16:44,840 DEPENDING ON HOW YOU FEEL ABOUT 1588 01:16:44,840 --> 01:16:52,040 THAT. 1589 01:16:52,040 --> 01:16:53,400 FOR ME BELIEVING SCIENTIFIC 1590 01:16:53,400 --> 01:16:54,560 RESEARCH REQUIRES WE HAVE 1591 01:16:54,560 --> 01:16:55,960 RELATIVELY TRANSPARENT ACCESS TO 1592 01:16:55,960 --> 01:16:56,160 DATA. 1593 01:16:56,160 --> 01:17:01,880 I WORRY THIS IDEA OF FORMAL 1594 01:17:01,880 --> 01:17:03,080 APPROVAL PROCESS, YOU MIGHT 1595 01:17:03,080 --> 01:17:04,840 IMAGINE IT WORKING WELL. 1596 01:17:04,840 --> 01:17:07,560 YOU MIGHT ALSO IMAGINE IT 1597 01:17:07,560 --> 01:17:14,040 BECOMING LIKE THE DATA AVAILABLE 1598 01:17:14,040 --> 01:17:15,840 PON REASONABLE REQUEST SORT OF 1599 01:17:15,840 --> 01:17:17,000 THING PEOPLE MAKE FUN OF BECAUSE 1600 01:17:17,000 --> 01:17:21,120 IT MEANS YOU CAN'T HAVE MY DATA. 1601 01:17:21,120 --> 01:17:26,240 ONE IS TO MAXIMIZE THE POTENTIAL 1602 01:17:26,240 --> 01:17:26,640 IMPACT OF THE DATA. 1603 01:17:26,640 --> 01:17:29,760 ANY FRICTION WILL IMPACT THE 1604 01:17:29,760 --> 01:17:37,360 UTILITY OF THE DATA. 1605 01:17:37,360 --> 01:17:38,360 I STILL THINK THAT WE CERTAINLY 1606 01:17:38,360 --> 01:17:42,560 NEED TO MAKE SURE PEOPLE ARE 1607 01:17:42,560 --> 01:17:47,760 BEING CONSENTED IN WAYS THAT 1608 01:17:47,760 --> 01:17:49,360 ADDRESS THE QUESTIONS SARA 1609 01:17:49,360 --> 01:17:50,600 BROUGHT UP BECAUSE IT'S A PRO 1610 01:17:50,600 --> 01:18:00,840 FORMA PROCESS. 1611 01:18:02,600 --> 01:18:04,120 AND SOMETHING WE THINK WILL 1612 01:18:04,120 --> 01:18:09,120 MAXIMIZE SCIENTIFIC UTILITY. 1613 01:18:09,120 --> 01:18:19,600 IF YOU TALK TO AND MANY ARE 1614 01:18:26,400 --> 01:18:31,600 FRUSTRATED MAKING DATA SHARING A 1615 01:18:31,600 --> 01:18:37,680 NIGHTMARE FOR RESEARCHERS. 1616 01:18:37,680 --> 01:18:39,680 TIES IMPAIRING OUR ABILITY TO 1617 01:18:39,680 --> 01:18:40,440 KNOW WHETHER WE CAN TRUST THE 1618 01:18:40,440 --> 01:18:50,800 RESEARCH AND REUSE IT. 1619 01:18:52,880 --> 01:19:03,280 THIS IS A COMPLICATED THING. 1620 01:19:08,680 --> 01:19:11,840 THERE ARE TRADE-OFFS AND ON THE 1621 01:19:11,840 --> 01:19:17,280 ONE HAND IF YOU RESTRICT A LOT 1622 01:19:17,280 --> 01:19:22,560 YOU COULD BE HONORING 1623 01:19:22,560 --> 01:19:23,720 INDIVIDUAL'S REQUESTS AND MAKE 1624 01:19:23,720 --> 01:19:26,360 SURE EVERYTHING IS TO WHAT THEY 1625 01:19:26,360 --> 01:19:28,360 CONSENTED FOR AND TRADE-OFF 1626 01:19:28,360 --> 01:19:29,160 POTENTIALLY IN SOME CASES 1627 01:19:29,160 --> 01:19:29,640 SCIENTIFIC PROGRESS. 1628 01:19:29,640 --> 01:19:38,600 IN OTHER CASES YOU MIGHT HAVE 1629 01:19:38,600 --> 01:19:40,000 WANT TO MAXIMIZE SECURITY WHICH 1630 01:19:40,000 --> 01:19:43,080 MAY MEAN YOU HAVE TO DECREASE 1631 01:19:43,080 --> 01:19:44,200 HOW YOU THINK ABOUT PRIVACY 1632 01:19:44,200 --> 01:19:50,200 BECAUSE YOU MIGHT NEED TO HAVE 1633 01:19:50,200 --> 01:19:56,280 AXIS TO SOMEBODY'S INFORMATION 1634 01:19:56,280 --> 01:19:57,840 AND AS WE DEVELOP THESE THINGS 1635 01:19:57,840 --> 01:19:58,840 WE AS RESEARCHERS DOCUMENT THE 1636 01:19:58,840 --> 01:20:08,840 TRADE-OFF. 1637 01:20:08,840 --> 01:20:11,440 WE CAN DOCUMENT WHY WE DID THIS 1638 01:20:11,440 --> 01:20:13,640 AND WHAT WERE THE TRADE-OFFS WE 1639 01:20:13,640 --> 01:20:15,240 ACKNOWLEDGED WE MADE IN THE 1640 01:20:15,240 --> 01:20:16,920 PROCESS AS PART OF THE 1641 01:20:16,920 --> 01:20:18,480 TRANSPARENCY IN DOING RESEARCH. 1642 01:20:18,480 --> 01:20:25,680 I KNOW AGAIN THIS IS HARD BUT I 1643 01:20:25,680 --> 01:20:26,600 APPRECIATE PUSHING BACK AGAINST 1644 01:20:26,600 --> 01:20:28,960 SOME OF MY RECOMMENDATIONS BUT I 1645 01:20:28,960 --> 01:20:30,560 WONDER IF THIS DISCUSSION IS 1646 01:20:30,560 --> 01:20:33,160 EXACTLY WHAT NEEDS TO BE 1647 01:20:33,160 --> 01:20:36,040 DOCUMENTED WITHIN THE SYSTEMS SO 1648 01:20:36,040 --> 01:20:37,360 PEOPLE UNDERSTAND HOW DO WE 1649 01:20:37,360 --> 01:20:38,520 CREATE THE RULES AND SYSTEMS IN 1650 01:20:38,520 --> 01:20:40,800 THE FIRST PLACE. 1651 01:20:40,800 --> 01:20:43,760 >>YEAH, I LIKE THAT. 1652 01:20:43,760 --> 01:20:48,080 >>ONE QUICK THING I THOUGHT OF, 1653 01:20:48,080 --> 01:20:49,040 I'VE BEEN ON. 1654 01:20:49,040 --> 01:20:50,400 BRAIN BEFORE AND THINKING OF 1655 01:20:50,400 --> 01:20:52,680 WHAT TO DO WITH DATA I UPLOADED 1656 01:20:52,680 --> 01:20:58,120 OR COLLEAGUES UPLOAD BEFORE AND 1657 01:20:58,120 --> 01:21:02,920 STRUCK TOO BY WANTING TO KNOW 1658 01:21:02,920 --> 01:21:06,560 WHAT THEY CONSENTED AND MAY BE 1659 01:21:06,560 --> 01:21:10,320 COMMON TO HAVE A DESCRIPTION OF 1660 01:21:10,320 --> 01:21:14,040 THE TASK BUT WHAT DO 1661 01:21:14,040 --> 01:21:17,680 PARTICIPANTS SEE AND I DON'T 1662 01:21:17,680 --> 01:21:19,160 KNOW IF THAT'S ANOTHER WAY TO 1663 01:21:19,160 --> 01:21:20,680 STOP AND PAUSE AND DO I WANT TO 1664 01:21:20,680 --> 01:21:21,640 DO THIS. 1665 01:21:21,640 --> 01:21:24,160 DOES IT CONFLICT WITH THE 1666 01:21:24,160 --> 01:21:25,640 INTENTION OF THE STUDY OR NOT 1667 01:21:25,640 --> 01:21:26,720 AND ANOTHER THING I'M THROWING 1668 01:21:26,720 --> 01:21:32,160 OUT THERE. 1669 01:21:32,160 --> 01:21:34,560 >>IT SEEMS LIKE IN ORDER TO 1670 01:21:34,560 --> 01:21:39,960 MAKE TRADEOFFS AND INFORM OUR 1671 01:21:39,960 --> 01:21:42,200 PARTICIPANTS IT WOULD BE HELPFUL 1672 01:21:42,200 --> 01:21:48,800 TO CLARIFY THE MAGNITUDE OF THE 1673 01:21:48,800 --> 01:21:49,000 RISKS. 1674 01:21:49,000 --> 01:21:54,960 AND WITH RESEARCH IN 1675 01:21:54,960 --> 01:21:56,040 RE-IDENTIFICATION DATA WHAT 1676 01:21:56,040 --> 01:22:01,240 WOULD HELP INFORM THE TRADE-OFFS 1677 01:22:01,240 --> 01:22:03,960 AND INFORMED CONSENT DOCUMENTS? 1678 01:22:03,960 --> 01:22:07,520 >>I WOULD LIKE TO KNOW HOW 1679 01:22:07,520 --> 01:22:08,120 PARTICIPANTS FEEL ABOUT THESE 1680 01:22:08,120 --> 01:22:18,280 ISSUES. 1681 01:22:20,600 --> 01:22:22,600 THERE'S NOT ONE OPINION PEOPLE 1682 01:22:22,600 --> 01:22:26,520 HAVE AND WILL RELATE TO THE 1683 01:22:26,520 --> 01:22:37,000 COMMUNITIES THEY'RE PART OF. 1684 01:22:38,680 --> 01:22:42,240 WHAT DO PEOPLE THINK ABOUT THIS? 1685 01:22:42,240 --> 01:22:44,240 MY COLLEAGUE MICHELLE MELON DID 1686 01:22:44,240 --> 01:22:49,720 WORK ON THIS IN CLINICAL TRIALS 1687 01:22:49,720 --> 01:22:50,840 THAT SUGGESTED TO ME PEOPLE ARE 1688 01:22:50,840 --> 01:22:53,280 MORE INTERESTED AND OPEN TO THE 1689 01:22:53,280 --> 01:22:54,600 SHARING OF CLINICAL TRIAL DATA 1690 01:22:54,600 --> 01:23:01,040 THAN ONE MIGHT HAVE THOUGHT. 1691 01:23:01,040 --> 01:23:03,720 I'D LIKE TO SEE BETTER RESEARCH 1692 01:23:03,720 --> 01:23:06,560 ON HOW PEOPLE FEEL AND WHAT ARE 1693 01:23:06,560 --> 01:23:08,480 THE VARIABLES THAT AFFECT THEIR 1694 01:23:08,480 --> 01:23:14,520 SHARING OF THE DATA. 1695 01:23:14,520 --> 01:23:19,960 >>I WOULD LIKE TO SEE WHAT 1696 01:23:19,960 --> 01:23:22,080 HAPPENS TO THE DATA. 1697 01:23:22,080 --> 01:23:23,800 IF THERE'S A WAY TO SEE WHO USES 1698 01:23:23,800 --> 01:23:25,640 THIS AND THE DIFFERENT THINGS 1699 01:23:25,640 --> 01:23:29,880 THAT CAP HAPPEN TO DATA SET 1700 01:23:29,880 --> 01:23:31,600 AFTER IT'S SHARED TO PEOPLE EVEN 1701 01:23:31,600 --> 01:23:33,920 IF PEOPLE THINK IT'S OKAY. 1702 01:23:33,920 --> 01:23:35,520 THEY'RE OPEN TO SHARING DATA 1703 01:23:35,520 --> 01:23:39,680 GOING BACK TO SOMEBODY WHO SAID 1704 01:23:39,680 --> 01:23:41,880 WAS IT INFORMED? 1705 01:23:41,880 --> 01:23:43,760 DO PEOPLE KNOW WHAT THEY'RE DATA 1706 01:23:43,760 --> 01:23:46,560 COULD BE USED FOR AND WHAT IT IS 1707 01:23:46,560 --> 01:23:57,040 USED FOR AFTER IT IS SHARED. 1708 01:24:01,880 --> 01:24:07,040 >>PAZ A -- AS A PARTICIPANT I 1709 01:24:07,040 --> 01:24:08,560 DON'T MIND SHARING MY DATA BUT I 1710 01:24:08,560 --> 01:24:10,840 DO WANT TO KNOW WHERE MY DATA IS 1711 01:24:10,840 --> 01:24:13,400 GOING AFTERWARDS. 1712 01:24:13,400 --> 01:24:14,600 I'VE SEEN OUR COMMUNITIES 1713 01:24:14,600 --> 01:24:17,080 HELPING BUILD NEW DRUGS AND 1714 01:24:17,080 --> 01:24:18,160 THERAPIES AND PRODUCTS THAT THEN 1715 01:24:18,160 --> 01:24:21,760 CAN'T AFFORD OR GET DENIED THE 1716 01:24:21,760 --> 01:24:23,520 TREATMENT THEY HELPED BUILD. 1717 01:24:23,520 --> 01:24:27,320 LOOKING AT THE COMMUNITIES 1718 01:24:27,320 --> 01:24:28,640 GIVING THE DATA AND MAKING SURE 1719 01:24:28,640 --> 01:24:33,160 THERE'S A BENEFIT COMING BACK TO 1720 01:24:33,160 --> 01:24:34,960 THEM BESIDES MAYBE IT WILL HELP 1721 01:24:34,960 --> 01:24:37,280 YOUR SYMPTOMS ESPECIALLY WHEN WE 1722 01:24:37,280 --> 01:24:43,040 SEE THE PROCESSES BEING MADE IN 1723 01:24:43,040 --> 01:24:47,400 ALL OF THIS AND KNOWING WE 1724 01:24:47,400 --> 01:24:49,160 DIDN'T CONSENT TO ALL OF THIS. 1725 01:24:49,160 --> 01:24:53,560 >>THERE'S A WONDERFUL BRIDGE TO 1726 01:24:53,560 --> 01:24:56,520 CLOSE THIS PANEL AND NEXT PANEL 1727 01:24:56,520 --> 01:24:57,520 WILL BE ABOUT RESEARCH 1728 01:24:57,520 --> 01:24:58,120 PARTICIPANTS PERSPECTIVE AND 1729 01:24:58,120 --> 01:25:01,120 WE'LL HAVE A SHORT BREAK AND 1730 01:25:01,120 --> 01:25:02,280 RECONVENE AT 11:45 EASTERN 1731 01:25:02,280 --> 01:25:03,920 STANDARD TIME. 1732 01:25:03,920 --> 01:25:04,480 THANK YOU FOR THE EXCELLENT 1733 01:25:04,480 --> 01:25:11,880 DISCUSSION. 1734 01:25:11,880 --> 01:25:14,360 >>WE'RE GOING TO GET 1735 01:25:14,360 --> 01:25:16,080 START AND WE'LL HEAR 1736 01:25:16,080 --> 01:25:17,480 PERSPECTIVES ON SHARING HUMAN 1737 01:25:17,480 --> 01:25:20,800 BRAIN DATA AND HEAR FROM WHO 1738 01:25:20,800 --> 01:25:24,920 PERSPECTIVES WHO HAVE BEEN 1739 01:25:24,920 --> 01:25:27,800 WEIGHING IN OVER AND RESEARCH 1740 01:25:27,800 --> 01:25:29,320 FOR PARTICIPANT USE ON DATA 1741 01:25:29,320 --> 01:25:30,600 SHARING. 1742 01:25:30,600 --> 01:25:37,600 THE FIRST SPEAKER IS MR. NATHAN 1743 01:25:37,600 --> 01:25:48,920 COPELAND. 1744 01:25:48,920 --> 01:25:52,960 HIS JOURNEY WAS SPARK BY A 2004 1745 01:25:52,960 --> 01:25:58,240 CAR INCIDENT WHICH RESULTED HIM 1746 01:25:58,240 --> 01:26:05,400 LIVING WITH QUADRAPLAGIA AND HIS 1747 01:26:05,400 --> 01:26:07,840 BRAIN HAS TWO ELECTRODES AND HE 1748 01:26:07,840 --> 01:26:10,000 CAN CONTROL A ROBOTIC ARM AND 1749 01:26:10,000 --> 01:26:12,840 RECEIVE SENSORY FEEDBACK A 1750 01:26:12,840 --> 01:26:13,760 GROUNDBREAKING ACHIEVEMENT AND 1751 01:26:13,760 --> 01:26:15,080 THE HIGHLIGHT OF HIS JOURNEY 1752 01:26:15,080 --> 01:26:17,120 INCLUDES A HANDSHAKE WITH THE 1753 01:26:17,120 --> 01:26:18,280 U.S. PRESIDENT, ACHIEVING HIS 1754 01:26:18,280 --> 01:26:20,720 DREAM OF VISITING JAPAN AND 1755 01:26:20,720 --> 01:26:22,520 MAKING VALUABLE CONTRIBUTIONS TO 1756 01:26:22,520 --> 01:26:23,120 COMPANIES, PUBLICATION AND 1757 01:26:23,120 --> 01:26:27,520 THROUGH HIS EXPERIENCES AND 1758 01:26:27,520 --> 01:26:27,800 INSIGHTS. 1759 01:26:27,800 --> 01:26:33,200 IN ADDITION HE'S HARNESSED HIS 1760 01:26:33,200 --> 01:26:36,920 DEVICE TO DRAW AND PLAY VIDEO 1761 01:26:36,920 --> 01:26:37,920 GAMES. 1762 01:26:37,920 --> 01:26:39,120 HIS JOURNEY REPRESENTS 1763 01:26:39,120 --> 01:26:41,240 RESILIENCE AND EMBODIES THE 1764 01:26:41,240 --> 01:26:45,040 POTENTIAL AND PROGRESS IN BCI 1765 01:26:45,040 --> 01:26:45,320 RESEARCH. 1766 01:26:45,320 --> 01:26:50,240 MR. COPELAND. 1767 01:26:50,240 --> 01:26:51,080 HELLO, EVERYBODY. 1768 01:26:51,080 --> 01:26:55,120 THANK YOU FOR HAVING ME. 1769 01:26:55,120 --> 01:26:57,680 LIKE MENTIONED MY NAME IS NATHAN 1770 01:26:57,680 --> 01:26:57,920 COPELAND. 1771 01:26:57,920 --> 01:27:04,000 IN 2004 I WAS IN A CAR ACCIDENT 1772 01:27:04,000 --> 01:27:14,560 AND IN 2014 I GAME A PARTICIPANT 1773 01:27:19,880 --> 01:27:24,560 IN RESEARCH THROUGH THE 1774 01:27:24,560 --> 01:27:27,080 UNIVERSITY AND I HAVE FOUR UTAH 1775 01:27:27,080 --> 01:27:33,360 RAYS TWO SENSORY AND FOUR MOTOR 1776 01:27:33,360 --> 01:27:36,000 AND FIRST HUMAN TO ONE IN THE 1777 01:27:36,000 --> 01:27:39,840 CORTEX AND HOLD THE RECORD FOR 1778 01:27:39,840 --> 01:27:44,600 LONGEST CHRONIC IMPLANT. 1779 01:27:44,600 --> 01:27:50,240 SO WHAT I THINK DATA IN MY BRAIN 1780 01:27:50,240 --> 01:28:00,760 IT'S THESE SQUIGGLES AND HISS. 1781 01:28:21,720 --> 01:28:32,200 AND THERE'S 256 DATA REPORTED BY 1782 01:28:33,760 --> 01:28:34,120 IMPLANT. 1783 01:28:34,120 --> 01:28:35,920 USING THE RECORDINGS IN THE 1784 01:28:35,920 --> 01:28:41,960 MOTOR CORTEX I WAS ABLE TO GET 1785 01:28:41,960 --> 01:28:43,520 REALLY GOOD CONTROL A ROBOTIC 1786 01:28:43,520 --> 01:28:50,800 ARM AND USED THREE OR FOUR 1787 01:28:50,800 --> 01:28:51,240 DIFFERENT ARMS TO NOW. 1788 01:28:51,240 --> 01:28:54,520 SO I GUESS THIS IS SOMETHING 1789 01:28:54,520 --> 01:28:58,560 THAT SOMEONE COULD FIGURE OUT 1790 01:28:58,560 --> 01:29:03,000 FROM MY DATA WHAT I WAS THINKING 1791 01:29:03,000 --> 01:29:05,280 WHEN I WAS MOVING IN DIRECTION 1792 01:29:05,280 --> 01:29:09,680 AT THAT MOMENT. 1793 01:29:09,680 --> 01:29:13,840 THAT'S ANOTHER THING THAT REALLY 1794 01:29:13,840 --> 01:29:17,360 DOESN'T GENERALIZE SUPER WELL 1795 01:29:17,360 --> 01:29:18,360 OVER LONG PERIOD OF TIME BECAUSE 1796 01:29:18,360 --> 01:29:24,440 A DECODER HAS TO GET TRAINED 1797 01:29:24,440 --> 01:29:28,400 EVERY DAY AND EVEN BACK TO BACK 1798 01:29:28,400 --> 01:29:34,040 DAYS A DECODER MAY WORK A LITTLE 1799 01:29:34,040 --> 01:29:36,480 AND MAY WORK NONE AND I ALWAYS 1800 01:29:36,480 --> 01:29:41,840 SAID BRAINS ARE WEIRD BUT ALSO 1801 01:29:41,840 --> 01:29:43,120 COMPUTERS ARE KIND OF DUMB AT AT 1802 01:29:43,120 --> 01:29:45,120 WHAT BRAINS ARE INTENDING TO DO 1803 01:29:45,120 --> 01:29:52,560 SOMETIMES. 1804 01:29:52,560 --> 01:29:54,000 FROM MY POINT OF VIEW THERE'S 1805 01:29:54,000 --> 01:29:57,040 NOT MUCH I'D BE WORRIED ABOUT 1806 01:29:57,040 --> 01:30:06,720 WITH SOMEONE GETTING HOLD OF 1807 01:30:06,720 --> 01:30:13,400 THAT KIND OF DATA IN ANY WAY. 1808 01:30:13,400 --> 01:30:17,920 ON THE SENSORY SIDE EACH IS 1809 01:30:17,920 --> 01:30:20,880 CAPABLE OF MICROSTIMULATION. 1810 01:30:20,880 --> 01:30:23,120 A BURST OF ELECTRIC INTO MY 1811 01:30:23,120 --> 01:30:25,120 BRAIN WILL ELICIT A SENSATION 1812 01:30:25,120 --> 01:30:31,080 THAT FEELS LIKE IT'S COMING FROM 1813 01:30:31,080 --> 01:30:41,640 MY OWN HAND THIS DIAGRAM SHOWS 1814 01:30:42,280 --> 01:30:45,040 THE ARRAY ON THE RIGHT SIDE AND 1815 01:30:45,040 --> 01:30:49,680 THE CORRESPONDING PLACE I RECORD 1816 01:30:49,680 --> 01:30:55,120 SENSATION ON THE LEFT SIDE AND 1817 01:30:55,120 --> 01:30:56,760 THERE'S HUNDREDS OF TIMES WHERE 1818 01:30:56,760 --> 01:31:04,360 I SAID WHAT THAT FEELS LIKE THAT 1819 01:31:04,360 --> 01:31:06,840 CAN RANGE FROM PRESSURE, TINGLE, 1820 01:31:06,840 --> 01:31:09,640 TAPPING, WARMTH AND THE 1821 01:31:09,640 --> 01:31:13,280 SENSATIONS ARE ALL 1822 01:31:13,280 --> 01:31:17,640 ELECTRODEPENDENT AND CAN CHANGE 1823 01:31:17,640 --> 01:31:22,960 BASED ON THE STIMULATION 1824 01:31:22,960 --> 01:31:26,280 PARAMETERS AND FREQUENCY AND 1825 01:31:26,280 --> 01:31:29,480 THAT KIND OF THING CAN ALTER HOW 1826 01:31:29,480 --> 01:31:32,160 I PERCEIVE THE SENSATIONS WHICH 1827 01:31:32,160 --> 01:31:37,920 IS ALSO NOT SOMETHING I WOULD BE 1828 01:31:37,920 --> 01:31:47,360 WORRIED ABOUT SHARING. 1829 01:31:47,360 --> 01:31:50,920 >>LET ME KNOW WHEN AND WHERE 1830 01:31:50,920 --> 01:31:51,960 YOU FEEL IT. 1831 01:31:51,960 --> 01:31:55,320 AFTER I'VE DONE ALL THE MOTOR 1832 01:31:55,320 --> 01:31:57,000 TASKS, I'VE DONE SENSORY TASKS 1833 01:31:57,000 --> 01:32:02,440 WHERE WE MAPPED THE SENSATIONS. 1834 01:32:02,440 --> 01:32:06,560 THE CONFIGURED THE SENSORS ON 1835 01:32:06,560 --> 01:32:09,600 THE ROBOTIC ARM TO AN ELECTRODE 1836 01:32:09,600 --> 01:32:11,360 THAT WAS ALREADY FIGURED OUT TO 1837 01:32:11,360 --> 01:32:11,920 FEEL LIKE THE CORRESPONDING 1838 01:32:11,920 --> 01:32:19,840 FINGER. 1839 01:32:19,840 --> 01:32:22,760 THAT WAS THE FIRST TIME THEY 1840 01:32:22,760 --> 01:32:24,240 TRIED THAT TASK WITH A BLINDFOLD 1841 01:32:24,240 --> 01:32:25,520 AND IT WORKED WELL. 1842 01:32:25,520 --> 01:32:31,120 THIS IS BASICALLY A COMBINATION 1843 01:32:31,120 --> 01:32:36,160 OF ALL THE OTHER TASKS DATA WISE 1844 01:32:36,160 --> 01:32:37,760 ALSO A LOT OF THESE ARE GOING TO 1845 01:32:37,760 --> 01:32:39,160 BE SUPER SIMPLE BECAUSE I'M NOT 1846 01:32:39,160 --> 01:32:40,840 A RESEARCHER AND I GO WITH THE 1847 01:32:40,840 --> 01:32:51,160 FLOW SO I'M NOT WORRIED ABOUT 1848 01:32:51,160 --> 01:32:53,560 MANY STUFF ON MY OWN AND 1849 01:32:53,560 --> 01:32:55,080 COMBINING MOTOR CONTROL AND 1850 01:32:55,080 --> 01:32:57,920 SENSORY CONTROL YOU END UP WITH 1851 01:32:57,920 --> 01:33:05,240 BI-DIRECTIONAL CONTROL. 1852 01:33:05,240 --> 01:33:08,000 THIS WOULD BE MY BRAIN SENDING 1853 01:33:08,000 --> 01:33:09,960 SIGNALS TO THE ROBOT AND ROBOT 1854 01:33:09,960 --> 01:33:15,040 SENDING SIGNALS BACK TO MY BRAIN 1855 01:33:15,040 --> 01:33:22,400 AND YOU END UP BEING ABLE TO DO 1856 01:33:22,400 --> 01:33:25,200 TASKS LIKE THIS THIS IS A 1857 01:33:25,200 --> 01:33:25,800 COMPARISON WITH AND WITHOUT 1858 01:33:25,800 --> 01:33:29,520 SENSORY FEEDBACK. 1859 01:33:29,520 --> 01:33:40,040 WITH SENSORY FEEDBACK I WAS A 1860 01:33:44,800 --> 01:33:48,040 GOOD BIT FASTER AND WITH THE 1861 01:33:48,040 --> 01:33:49,080 EXTRA FEEDBACK BEYOND MY VISION 1862 01:33:49,080 --> 01:33:51,680 I WAS ABLE TO TELL WHEN THE 1863 01:33:51,680 --> 01:33:57,000 ROBOTIC ARM WAS MAKING GOOD 1864 01:33:57,000 --> 01:34:00,280 CONTACT WITH THE OBJECT AND 1865 01:34:00,280 --> 01:34:02,960 WOULD PICK IT UP AND MOVE IT AND 1866 01:34:02,960 --> 01:34:04,040 WITHOUT FEEDBACK SOMETIMES I 1867 01:34:04,040 --> 01:34:06,160 WOULD THINK IT'S IN THERE GOOD 1868 01:34:06,160 --> 01:34:08,040 AND GO TO LIFT IT AND IT WOULD 1869 01:34:08,040 --> 01:34:18,560 FALL OUT AND THAT SORT OF THING. 1870 01:34:20,440 --> 01:34:23,120 HERE'S SOME OF THE COOLEST 1871 01:34:23,120 --> 01:34:30,040 THINGS I'VE BEEN ABLE TO DO 1872 01:34:30,040 --> 01:34:32,600 2016, HANDSHAKE AND FIST BUMP 1873 01:34:32,600 --> 01:34:33,040 WITH OBAMA. 1874 01:34:33,040 --> 01:34:36,280 THAT WAS THE COOLEST THING I 1875 01:34:36,280 --> 01:34:38,080 EVER DID BECAUSE OF THE STUDY 1876 01:34:38,080 --> 01:34:39,320 AND THAT LEADS US TO THE NEXT 1877 01:34:39,320 --> 01:34:43,160 SLIDE. 1878 01:34:43,160 --> 01:34:47,120 I WENT TO JAPAN TO DO A COUPLE 1879 01:34:47,120 --> 01:34:51,080 PRESENTATIONS AT A CONFERENCE 1880 01:34:51,080 --> 01:35:00,240 AND A FEW UNIVERSITIES. 1881 01:35:00,240 --> 01:35:02,640 MY BIO MENTIONED LIKING TO DRAW 1882 01:35:02,640 --> 01:35:04,000 AND PLAY GAMES. 1883 01:35:04,000 --> 01:35:10,280 I HAVE ARTWORK AT A VCR ART 1884 01:35:10,280 --> 01:35:10,840 EXHIBIT AT THE AMERICAN 1885 01:35:10,840 --> 01:35:13,840 ASSOCIATION FOR THE ADVANCEMENT 1886 01:35:13,840 --> 01:35:14,600 OF SCIENCE MUSEUM IN WASHINGTON, 1887 01:35:14,600 --> 01:35:19,120 D.C. 1888 01:35:19,120 --> 01:35:26,000 IT'S THERE THROUGH NOVEMBER. 1889 01:35:26,000 --> 01:35:30,240 I'VE SOLD SOME ART AS NFTs. 1890 01:35:30,240 --> 01:35:31,840 I PLAN TO EVENTUALLY PUT 1891 01:35:31,840 --> 01:35:33,160 TOGETHER A WEBSITE AND MAYBE 1892 01:35:33,160 --> 01:35:43,640 SELL SOME PRINTS AND STUFF. 1893 01:35:45,640 --> 01:35:50,120 STAR WAYS DAY IS MY IMPLANT 1894 01:35:50,120 --> 01:36:00,680 ANNIVERSARY SO WE DO DUMB STUFF. 1895 01:36:01,560 --> 01:36:05,280 THESE ARE OTHER THINGS I'VE 1896 01:36:05,280 --> 01:36:09,280 CONTROLLED WITH MY BCI AND 1897 01:36:09,280 --> 01:36:11,080 EXOSKELE 1898 01:36:11,080 --> 01:36:20,120 EXOSKELETON GLOVE AND THIS IS 1899 01:36:20,120 --> 01:36:25,400 ROUGHLY WHAT THE SYSTEM AT THE 1900 01:36:25,400 --> 01:36:31,120 LAB LOOKS LIKE. 1901 01:36:31,120 --> 01:36:41,640 AND A FEW YEARS AGO I WAS GIVEN 1902 01:36:42,240 --> 01:36:43,360 THIS PORTABLE SYSTEM TO USE AT 1903 01:36:43,360 --> 01:36:43,560 HOME. 1904 01:36:43,560 --> 01:36:51,880 I CAN USE IT BY MYSELF THERE'S A 1905 01:36:51,880 --> 01:36:53,000 NEWER VERSION THAT'S MORE 1906 01:36:53,000 --> 01:36:54,920 POWERFUL I CAN USE AND DIDN'T 1907 01:36:54,920 --> 01:36:57,080 LET ME CONTROL ROBOTIC ARMS OR 1908 01:36:57,080 --> 01:37:02,400 STIMULATION BUT CAN DO ALL THE 1909 01:37:02,400 --> 01:37:03,080 CUR 1910 01:37:03,080 --> 01:37:08,400 CURSER BASED THINGS I LIKE DOING 1911 01:37:08,400 --> 01:37:18,960 AND THIS IS WHAT I DO AND WRITE 1912 01:37:31,280 --> 01:37:33,960 E-MAILS BUT THEORETICALLY THE 1913 01:37:33,960 --> 01:37:37,400 EASIEST WAY COULD BE TO TAP YOUR 1914 01:37:37,400 --> 01:37:39,080 COMPUTER BUT IF SOMEONE SHARING 1915 01:37:39,080 --> 01:37:41,000 BRAIN DATA CONTAINS THINGS LIKE 1916 01:37:41,000 --> 01:37:46,440 WHAT PROGRAM I WAS RUNNING THE 1917 01:37:46,440 --> 01:37:48,280 POSITION ON THE SCREEN AND THE 1918 01:37:48,280 --> 01:37:55,080 CURSER WAS AND THAT SORT OF 1919 01:37:55,080 --> 01:38:05,600 THING AND IS THE ONE THING I 1920 01:38:11,520 --> 01:38:21,880 THOUGHT ABOUT HERE'S MORE 1921 01:38:25,200 --> 01:38:28,200 DRAWINGS LIKE THE HEDGEHOG AND I 1922 01:38:28,200 --> 01:38:29,200 HAVE A YOUTUBE CHANNEL CALLED 1923 01:38:29,200 --> 01:38:35,000 BCI CAN DO BETTER. 1924 01:38:35,000 --> 01:38:40,240 WIRE CONNECTIONS AND BCI AND THE 1925 01:38:40,240 --> 01:38:41,880 EQUIPMENT AND NEEDING PEOPLE TO 1926 01:38:41,880 --> 01:38:43,040 HELP YOU RUN IT AND PEOPLE TO 1927 01:38:43,040 --> 01:38:53,480 SET IT UP FOR ME AND THEN RUN IT 1928 01:38:53,480 --> 01:38:59,240 FROM THERE AND DECODER 1929 01:38:59,240 --> 01:39:07,240 RETRAINING AND THIS COULD KEEP 1930 01:39:07,240 --> 01:39:12,840 SHARING THE DATA NOT HAVING MUCH 1931 01:39:12,840 --> 01:39:16,880 USE BEYOND WHAT IT WAS INTENDED 1932 01:39:16,880 --> 01:39:19,120 FOR AND ONLY AT THAT EXACT 1933 01:39:19,120 --> 01:39:24,800 MOMENT IN TIME WHEN I WAS DOING 1934 01:39:24,800 --> 01:39:25,120 IT. 1935 01:39:25,120 --> 01:39:27,120 I THINK THAT'S ALL FOR SLIDES IF 1936 01:39:27,120 --> 01:39:37,440 THAT MAKES SENSE. 1937 01:39:42,000 --> 01:39:46,760 AND LOOK AT THE DECODERS AND 1938 01:39:46,760 --> 01:39:50,440 FIGURE OUT A WAY TO USE THE 1939 01:39:50,440 --> 01:39:51,960 DECODER AND WORK AND NOT 1940 01:39:51,960 --> 01:39:54,320 INTEREST TO TRAIN IT ALL THE -- 1941 01:39:54,320 --> 01:39:57,280 HAVE TO TRAIN IT ALL THE TIME. 1942 01:39:57,280 --> 01:40:03,040 THINGS LIKE MY POSTURE AT THE 1943 01:40:03,040 --> 01:40:13,560 TIME AND THERE'S A VARIETY OF 1944 01:40:25,320 --> 01:40:30,400 THINGS I THOUGHT TO GET STUFF 1945 01:40:30,400 --> 01:40:40,960 WORKED THIS IS MY FAVORITE ROBOT 1946 01:40:48,520 --> 01:40:50,080 ARM AND NOW IT'S BACK IN THE LAB 1947 01:40:50,080 --> 01:40:52,640 AND HOPEFULLY I CAN USE IT 1948 01:40:52,640 --> 01:40:52,840 AGAIN. 1949 01:40:52,840 --> 01:40:55,760 IT'S MY FAVORITE BECAUSE IT'S 1950 01:40:55,760 --> 01:40:57,920 ACTUALLY NOT ANATOMICAL WHICH 1951 01:40:57,920 --> 01:41:03,080 LETS IT MOVE WITHIN THE WORK 1952 01:41:03,080 --> 01:41:12,080 SPACE A LOT FREER. 1953 01:41:12,080 --> 01:41:16,840 ASK ME SOME QUESTIONS BECAUSE 1954 01:41:16,840 --> 01:41:19,440 I'M NOT WELL VERSED IN DOING THE 1955 01:41:19,440 --> 01:41:29,840 WHOLE ETHICS THING YET. 1956 01:41:30,160 --> 01:41:31,120 >>THANK YOU SO MUCH 1957 01:41:31,120 --> 01:41:33,560 MR. COPELAND FOR TELLING US 1958 01:41:33,560 --> 01:41:35,240 ABOUT YOUR JOURNEY AND SHARING 1959 01:41:35,240 --> 01:41:35,560 HIGHLIGHTS. 1960 01:41:35,560 --> 01:41:46,040 WE HAVE TIME FOR QUESTIONS. 1961 01:41:51,400 --> 01:41:53,880 THANKING TIME TO SHARE YOUR 1962 01:41:53,880 --> 01:41:57,080 INSIGHT. 1963 01:41:57,080 --> 01:41:58,080 IT'S INCREDIBLE TO THINK ABOUT 1964 01:41:58,080 --> 01:42:02,120 THE RISKSES AND BENEFITS OF 1965 01:42:02,120 --> 01:42:04,960 SHARING AND PERCEIVED RISK FROM 1966 01:42:04,960 --> 01:42:10,440 A PERSON HAVING BRAIN DATA 1967 01:42:10,440 --> 01:42:10,720 RECORDED. 1968 01:42:10,720 --> 01:42:15,040 YOU DESCRIBE THE CLASPING COULD 1969 01:42:15,040 --> 01:42:25,400 BE DECODED OVERTIME. 1970 01:42:27,680 --> 01:42:28,720 THINKING IN A WORLD WHERE THAT 1971 01:42:28,720 --> 01:42:30,600 COULD BE DECODED AND WE TALKED 1972 01:42:30,600 --> 01:42:35,120 ABOUT THE POSSIBILITIES OF 1973 01:42:35,120 --> 01:42:39,800 INCIDENTAL FINDINGS, MAYBE 1974 01:42:39,800 --> 01:42:40,880 THERE'S A DISEASE PROCESS OR 1975 01:42:40,880 --> 01:42:45,920 SOMETHING DIFFERENT ABOUT YOUR 1976 01:42:45,920 --> 01:42:51,000 BRAIN ACTIVITY OR IMAGINE 1977 01:42:51,000 --> 01:42:54,320 SLOWING OF ABILITIES TO GRASP OR 1978 01:42:54,320 --> 01:42:55,520 MOVE THINGS QUICKLY OR 1979 01:42:55,520 --> 01:42:56,280 INFERENCES THAT CAN BE MADE FROM 1980 01:42:56,280 --> 01:42:57,640 THE DATA. 1981 01:42:57,640 --> 01:42:59,360 THINKING OF THE ENABLING ASPECTS 1982 01:42:59,360 --> 01:43:00,640 OF THE TECHNOLOGY FOR YOU AND 1983 01:43:00,640 --> 01:43:02,440 ALSO FOR YOU INDIVIDUALLY HOW 1984 01:43:02,440 --> 01:43:06,240 YOU WOULD WANT THAT DATA USED OR 1985 01:43:06,240 --> 01:43:08,200 WITH WHOM YOU WOULD WANT IT 1986 01:43:08,200 --> 01:43:10,960 SHARED WITH THE RESEARCHERS. 1987 01:43:10,960 --> 01:43:13,480 DO YOU HAVE PREFERENCES, DESIRES 1988 01:43:13,480 --> 01:43:21,400 WITH WHOM YOU WOULD SHARE OR HOW 1989 01:43:21,400 --> 01:43:22,680 BROADLY THOSE KINDS OF 1990 01:43:22,680 --> 01:43:24,360 INFORMATION MAY BE USED, MEANING 1991 01:43:24,360 --> 01:43:26,440 IF THERE WERE ADDITIONAL 1992 01:43:26,440 --> 01:43:28,840 INFERENCES THAT COULD BE GLEANED 1993 01:43:28,840 --> 01:43:30,040 FROM YOUR DATA HOW DO YOU THINK 1994 01:43:30,040 --> 01:43:31,680 ABOUT THAT IN WHO YOU WANT TO 1995 01:43:31,680 --> 01:43:33,080 SHARE IT WITH AND WHAT OTHER 1996 01:43:33,080 --> 01:43:41,880 PEOPLE MAY HAVE ACCESS TO THAT 1997 01:43:41,880 --> 01:43:43,800 DATA, ETCETERA. 1998 01:43:43,800 --> 01:43:48,600 >>I'LL START WITH ONE THING I 1999 01:43:48,600 --> 01:43:52,520 KIND OF SKIPPED OVER IN MY STORY 2000 01:43:52,520 --> 01:43:59,920 OF MY EIGHT YEAR JOURNEY, MY 2001 01:43:59,920 --> 01:44:01,520 MOTIVATION TO START THIS WAS 2002 01:44:01,520 --> 01:44:06,960 KNOWING HOW SMALL THE INCLUSION 2003 01:44:06,960 --> 01:44:12,200 CRITERIA WAS YOU HAVE TO BE IN 2004 01:44:12,200 --> 01:44:14,400 THE RIGHT AREA WHERE THEY'RE 2005 01:44:14,400 --> 01:44:16,000 DOING THE RESEARCH AND SOMEHOW 2006 01:44:16,000 --> 01:44:21,080 KNOW ABOUT THE RESEARCH BEING 2007 01:44:21,080 --> 01:44:31,640 DONE AT THAT POINT OR IT LED ME 2008 01:44:35,800 --> 01:44:36,680 TO A HOSPITAL SYSTEM AND 2009 01:44:36,680 --> 01:44:38,240 RESEARCH AND THE FIRST THING 2010 01:44:38,240 --> 01:44:39,240 THEY ASKED ME ONE OF THE FIRST 2011 01:44:39,240 --> 01:44:41,160 THINGS WAS IF I WANTED TO BE PUT 2012 01:44:41,160 --> 01:44:46,760 ON A RESEARCH REGISTRY. 2013 01:44:46,760 --> 01:44:49,120 SO IN THE FUTURE I WOULD -- MY 2014 01:44:49,120 --> 01:44:52,320 INFORMATION WOULD POP UP TO ANY 2015 01:44:52,320 --> 01:44:54,080 RESEARCHER LOOKING FOR THE 2016 01:44:54,080 --> 01:45:00,480 CONDITIONS I WOULD QUALIFY FOR. 2017 01:45:00,480 --> 01:45:04,840 I DID A SCREENING FOR THE SAME 2018 01:45:04,840 --> 01:45:09,880 BCI STUDY WITH THE SAME GROUP A 2019 01:45:09,880 --> 01:45:12,440 FEW YEARS BEFORE I ACTUALLY 2020 01:45:12,440 --> 01:45:14,640 JOINED BUT THAT WAS A PART OF 2021 01:45:14,640 --> 01:45:16,880 STUDY THAT DIDN'T INCLUDE THE 2022 01:45:16,880 --> 01:45:25,960 SENSORY CORTEX STIMULATION. 2023 01:45:25,960 --> 01:45:30,320 I DIDN'T QUALIFY BECAUSE I HAVE 2024 01:45:30,320 --> 01:45:33,040 RISK EXTENSION BUT NOT FLEXION 2025 01:45:33,040 --> 01:45:41,720 AND EXTENSION WAS LIST EDED AS 2026 01:45:41,720 --> 01:45:43,600 SIGNIFICANT HAND FUNCTION WHICH 2027 01:45:43,600 --> 01:45:44,800 DISQUALIFIED ME. 2028 01:45:44,800 --> 01:45:48,280 FAST FORWARD I GET ASKED AGAIN, 2029 01:45:48,280 --> 01:45:51,160 I WAS DOING AN FMRI, MEG STUDY 2030 01:45:51,160 --> 01:45:57,080 WITH PEOPLE FROM THE SAME LAB 2031 01:45:57,080 --> 01:46:07,440 AND THAT THE POINT IT 2032 01:46:08,560 --> 01:46:10,800 IMMEDIATELY PUT ME INTO HOW I 2033 01:46:10,800 --> 01:46:15,920 KNOW PEOPLE CAN SO HOW CAIN NOT? 2034 01:46:15,920 --> 01:46:17,920 I WANTED TO BE ABLE TO HELP PUSH 2035 01:46:17,920 --> 01:46:22,320 THE SCIENCE FORWARD BECAUSE 2036 01:46:22,320 --> 01:46:25,440 THERE'S THIS DESPAIR PERIOD 2037 01:46:25,440 --> 01:46:30,520 AFTER CATASTROPHIC INJURIES OR 2038 01:46:30,520 --> 01:46:35,320 EVEN ONES THAT TAKE THEIR TIME 2039 01:46:35,320 --> 01:46:37,600 TO GET WORSE LIKE ALS AND STUFF. 2040 01:46:37,600 --> 01:46:39,400 ARE TOLD YOU CAN'T DO THE THINGS 2041 01:46:39,400 --> 01:46:44,080 YOU LOVED ANYMORE AND KIND OF 2042 01:46:44,080 --> 01:46:46,280 HAVE THIS PERIOD OF DESPAIR AND 2043 01:46:46,280 --> 01:46:47,640 SOME PEOPLE FIND THINGS TO TAKE 2044 01:46:47,640 --> 01:46:49,480 THEM OUT OF IT AND SOME DON'T. 2045 01:46:49,480 --> 01:46:52,760 I WANTED TO PUSH THINGS FORWARD 2046 01:46:52,760 --> 01:46:54,520 TO WHERE INSTEAD OF BEING TOLD 2047 01:46:54,520 --> 01:46:56,320 YOU CAN'T DO THESE THINGS YOU 2048 01:46:56,320 --> 01:46:58,120 SAY YOU GET TOLD YOU CAN'T DO 2049 01:46:58,120 --> 01:47:00,280 THESE THINGS THE WAY YOU DID BUT 2050 01:47:00,280 --> 01:47:05,560 I HEAR SOME TECHNOLOGIES THAT 2051 01:47:05,560 --> 01:47:07,960 CAN HELP YOU DO THEM ANYWAY. 2052 01:47:07,960 --> 01:47:08,800 MY MOTIVATION HAS ALWAYS BEEN TO 2053 01:47:08,800 --> 01:47:17,040 PUSH THE SCIENCE FORWARD. 2054 01:47:17,040 --> 01:47:19,080 WITH THAT AS MY MAIN MOTIVATION 2055 01:47:19,080 --> 01:47:24,720 I'M FINE WITH ALL MY DATA BEING 2056 01:47:24,720 --> 01:47:29,120 SHARED WITH ANYONE THOUGH THOUGH 2057 01:47:29,120 --> 01:47:30,440 IT'S NEURONS BEING RECORDED IN A 2058 01:47:30,440 --> 01:47:40,840 SMALL AREA OF MY BRAIN. 2059 01:47:47,360 --> 01:47:51,040 AND MBCIs ARE DIFFERENT BECAUSE 2060 01:47:51,040 --> 01:47:53,720 OVER TIME THERE'S A SIGNAL 2061 01:47:53,720 --> 01:47:56,120 QUALITY DEGRADATION NO ONE KNOWS 2062 01:47:56,120 --> 01:48:02,520 WHERE IT WILL CAP OFF AT. 2063 01:48:02,520 --> 01:48:05,320 MY PERSONALLY I'M STILL FINE IF 2064 01:48:05,320 --> 01:48:07,760 SOMEONE THINKS THEY HAVE A USE 2065 01:48:07,760 --> 01:48:10,680 FOR SOME OF MY DATA THOUGH SOME 2066 01:48:10,680 --> 01:48:14,680 MAY NOT BE SUPER USEFUL JUST 2067 01:48:14,680 --> 01:48:16,960 KNOWING WHEN A PART OF MY BRAIN 2068 01:48:16,960 --> 01:48:21,640 WAS STIMULATED AT A CERTAIN 2069 01:48:21,640 --> 01:48:24,600 PARAMETERS I FELT A SPECIFIC 2070 01:48:24,600 --> 01:48:25,960 SENSATION THAT'S BEEN DOCUMENTED 2071 01:48:25,960 --> 01:48:31,520 AND THAT CAN BE COMPARED TO 2072 01:48:31,520 --> 01:48:36,400 OTHER PEOPLE SIMILAR SITUATIONS, 2073 01:48:36,400 --> 01:48:42,400 SIMILAR STIMULATIONS AND 2074 01:48:42,400 --> 01:48:44,080 EVENTUALLY DOWN THE LINE THEY 2075 01:48:44,080 --> 01:48:49,960 CAN ELICIT SENSATIONS THAT FEEL 2076 01:48:49,960 --> 01:48:54,360 MORE NATURAL OR IT TAKES LESS 2077 01:48:54,360 --> 01:48:55,080 TIME 2078 01:48:55,080 --> 01:48:56,600 >>THAT'S INCREDIBLY HELPFUL. 2079 01:48:56,600 --> 01:48:57,600 THANK YOU. 2080 01:48:57,600 --> 01:49:01,080 IF THERE'S A MOMENT TO FOLLOW-UP 2081 01:49:01,080 --> 01:49:05,000 ON THAT -- REAL QUICK, JUST, 2082 01:49:05,000 --> 01:49:12,320 THAT DESIRE TO SHARE YOU 2083 01:49:12,320 --> 01:49:15,240 DESCRIBE IT AS DRIVING PART OF 2084 01:49:15,240 --> 01:49:17,960 YOUR DECISION TO BE PART OF THE 2085 01:49:17,960 --> 01:49:18,360 RESEARCH STUDY. 2086 01:49:18,360 --> 01:49:23,120 IS IT ADEQUATE FOR YOU ONCE TO 2087 01:49:23,120 --> 01:49:27,400 GIVE THAT BLANKET CONSENT OF THE 2088 01:49:27,400 --> 01:49:29,120 SHARING OF THE DATA WOULD YOU 2089 01:49:29,120 --> 01:49:30,960 WANT TO BE ASKED AGAIN AND AGAIN 2090 01:49:30,960 --> 01:49:34,680 AS RESEARCH STUDIES CAME IN OR A 2091 01:49:34,680 --> 01:49:37,280 BLANKET, YES, I WANT TO BE 2092 01:49:37,280 --> 01:49:39,120 INFORMED NO MATTER WHAT CAN BE 2093 01:49:39,120 --> 01:49:46,080 DISCOVERED OVER TIME? 2094 01:49:46,080 --> 01:49:49,000 >>I HAVE TWO ANSWERS FOR THAT. 2095 01:49:49,000 --> 01:49:49,640 FOR ME PERSONALLY ONCE IS 2096 01:49:49,640 --> 01:49:52,920 ENOUGH. 2097 01:49:52,920 --> 01:49:58,520 I ALSO THINK IT WOULD BE 2098 01:49:58,520 --> 01:49:59,920 INTERESTING TO KNOW WHO ELSE GOT 2099 01:49:59,920 --> 01:50:02,880 IT OR WHAT THEY WERE DOING WITH 2100 01:50:02,880 --> 01:50:07,280 IT OR IF SOMETHING CAME ABOUT 2101 01:50:07,280 --> 01:50:12,120 FROM IT. 2102 01:50:12,120 --> 01:50:14,120 FOR WHAT IT IS NOW FOR ME, ONCE 2103 01:50:14,120 --> 01:50:14,600 IS ENOUGH. 2104 01:50:14,600 --> 01:50:18,720 IF IT'S A DIFFERENT STUDY AND 2105 01:50:18,720 --> 01:50:19,760 THINGS ARE SLIGHTLY DIFFERENT 2106 01:50:19,760 --> 01:50:22,720 WHICH IS THE CASE FOR ALMOST 2107 01:50:22,720 --> 01:50:24,160 EVERYONE, IT MIGHT BE MORE 2108 01:50:24,160 --> 01:50:31,080 APPROPRIATE FOR THEM TO SAY I 2109 01:50:31,080 --> 01:50:33,160 WANT TO BE ASKED EVERY TIME. 2110 01:50:33,160 --> 01:50:38,600 THEY WANT THIS KIND OF DATA OR 2111 01:50:38,600 --> 01:50:45,160 THIS VERY SPECIFIC ONE OR 2112 01:50:45,160 --> 01:50:47,080 BROADER NOTIFICATIONS BUT DON'T 2113 01:50:47,080 --> 01:50:48,960 NECESSARILY HAVE TO RESPOND IN 2114 01:50:48,960 --> 01:50:56,160 ANY WAY IF THAT MAKES SENSE. 2115 01:50:56,160 --> 01:50:57,960 >>IT DOES AND THANK YOU VERY 2116 01:50:57,960 --> 01:50:58,160 MUCH. 2117 01:50:58,160 --> 01:51:03,440 >>THANK YOU AGAIN MR. COPELAND. 2118 01:51:03,440 --> 01:51:08,320 OUR SECOND SPEAKER IS CHRISTINE 2119 01:51:08,320 --> 01:51:08,840 VON RAESFELD. 2120 01:51:08,840 --> 01:51:10,240 SHE IS FOUNDER AND CEO OF PEOPLE 2121 01:51:10,240 --> 01:51:11,840 WITH EMPATHY. 2122 01:51:11,840 --> 01:51:17,440 A PILLAR OF PATIENT ADVOCACY AND 2123 01:51:17,440 --> 01:51:19,320 ALLIESHIP IN RARE AND CHRONIC 2124 01:51:19,320 --> 01:51:22,720 DISEASE COMMUNITY AND THROUGH 2125 01:51:22,720 --> 01:51:24,720 HER LIVED EXPERIENCE SHE'S 2126 01:51:24,720 --> 01:51:27,680 BECOME A CHAMPION FOR PATIENT 2127 01:51:27,680 --> 01:51:31,240 VOICES AND DIVERSITY IN CLINICAL 2128 01:51:31,240 --> 01:51:34,160 RESEARCH AND MS. VON RAESFELD 2129 01:51:34,160 --> 01:51:35,120 BROUGHT HER PERSPECTIVE AND 2130 01:51:35,120 --> 01:51:39,040 EXPERTISE AS A FEATURED SPEAK 2131 01:51:39,040 --> 01:51:41,440 FOR NUMEROUS TOPICS FROM DATA 2132 01:51:41,440 --> 01:51:43,120 AND DIGITAL RIGHTS AND 2133 01:51:43,120 --> 01:51:44,520 RECRUITMENT FROM THE PATIENT 2134 01:51:44,520 --> 01:51:44,840 PERSPECTIVE. 2135 01:51:44,840 --> 01:51:47,960 SHE SERVED AS AN E-PATIENT 2136 01:51:47,960 --> 01:51:51,480 SCHOLAR WITH NIH "ALL OF US" 2137 01:51:51,480 --> 01:51:53,800 RESEARCH AND TECHNOLOGY EXPERT 2138 01:51:53,800 --> 01:51:55,480 PANELIST FOR CENTER FOR MEDICAID 2139 01:51:55,480 --> 01:52:02,120 AND MEDICARE SERVICE. 2140 01:52:02,120 --> 01:52:03,480 AND SHE HAS OTHER ROLES. 2141 01:52:03,480 --> 01:52:05,560 >>CAN YOU HEAR ME NOT ONLY ON 2142 01:52:05,560 --> 01:52:07,520 BEHALF OF MY OWN NONPROFIT BUT 2143 01:52:07,520 --> 01:52:08,520 ALSO WITH ONE OF THE OTHER 2144 01:52:08,520 --> 01:52:17,000 NONPROFITS THAT I WORK WITH AND 2145 01:52:17,000 --> 01:52:19,680 YOU'LL SEE A THE LIGHT 2146 01:52:19,680 --> 01:52:20,040 COLLECTIVE. 2147 01:52:20,040 --> 01:52:22,520 WE'RE EXPERIENCED PATIENTS 2148 01:52:22,520 --> 01:52:24,320 BUILDING TECH AND DIGITAL RIGHTS 2149 01:52:24,320 --> 01:52:26,680 FOR OTHER PATIENT COMMUNITIES TO 2150 01:52:26,680 --> 01:52:28,400 REPRESENT THE COLLECTIVE RIGHTS 2151 01:52:28,400 --> 01:52:31,120 AND INTEREST AND VOICES OF 2152 01:52:31,120 --> 01:52:32,160 PATIENT COMMUNITIES IN HEALTH 2153 01:52:32,160 --> 01:52:32,600 TECH. 2154 01:52:32,600 --> 01:52:39,080 RIGHT HERE YOU'LL SEE A PICTURE 2155 01:52:39,080 --> 01:52:44,480 OF US AT DEF CON IT'S A HACKER 2156 01:52:44,480 --> 01:52:44,800 CONVENTION. 2157 01:52:44,800 --> 01:52:48,440 TWO YEARS BEFORE I HAD GOTTEN AN 2158 01:52:48,440 --> 01:52:51,400 IMPLANTABLE CARDIAC DEVICE PUT 2159 01:52:51,400 --> 01:52:53,680 IN. 2160 01:52:53,680 --> 01:52:55,080 WHEN I WENT TO THE CONFERENCE I 2161 01:52:55,080 --> 01:52:58,200 WAS BANNED FROM THE BIO HACKING 2162 01:52:58,200 --> 01:52:59,960 BECAUSE THERE WAS A THREAT 2163 01:52:59,960 --> 01:53:01,960 AGAINST MY BLUE TOOTH ENABLED 2164 01:53:01,960 --> 01:53:02,440 DEVICE. 2165 01:53:02,440 --> 01:53:07,800 THAT WAS ONE OF THE FIRST 2166 01:53:07,800 --> 01:53:09,760 EXPERIENCES OR MANY EXPERIENCES 2167 01:53:09,760 --> 01:53:11,360 WHEN IT COMES TO MY SECURITY AND 2168 01:53:11,360 --> 01:53:16,120 TECHNOLOGY. 2169 01:53:16,120 --> 01:53:19,280 YOU'LL SEE WHERE IT STARTED FOR 2170 01:53:19,280 --> 01:53:19,440 ME. 2171 01:53:19,440 --> 01:53:22,440 I GREW UP IN THE SILICON VALLEY 2172 01:53:22,440 --> 01:53:24,040 AND WHEN THEY SAY YOUR ZIP CODE 2173 01:53:24,040 --> 01:53:26,320 DETERMINES YOUR CARE, IT DOES. 2174 01:53:26,320 --> 01:53:28,400 IF I HAD GROWN UP IN ANY OTHER 2175 01:53:28,400 --> 01:53:29,880 AREA I WOULD NOT BE HERE 2176 01:53:29,880 --> 01:53:34,880 SPEAKING TO YOU TODAY. 2177 01:53:34,880 --> 01:53:38,640 I PARTICIPATED INSEVER STUDY AND 2178 01:53:38,640 --> 01:53:40,320 RESEARCH OPPORTUNITY I COULD 2179 01:53:40,320 --> 01:53:40,520 GET. 2180 01:53:40,520 --> 01:53:42,720 BY THE WAY, I'M 48 YEARS OLD AND 2181 01:53:42,720 --> 01:53:45,960 STILL UNDIAGNOSED BUT HAVE OVER 2182 01:53:45,960 --> 01:53:48,320 30 CONDITIONS IN MY CHARTS AND 2183 01:53:48,320 --> 01:53:51,080 OVER 40 PHYSICIANS I WORK WITH 2184 01:53:51,080 --> 01:54:00,960 TO KEEP MY CARE GOING. 2185 01:54:00,960 --> 01:54:04,720 TWO STORIES I PARTICIPATED IN 2186 01:54:04,720 --> 01:54:06,680 WHERE THE INFORMATION COULD HAVE 2187 01:54:06,680 --> 01:54:11,800 HELPED ME AND I PARTICIPATE TO 2188 01:54:11,800 --> 01:54:14,640 SHARE THIS AND I FIND I DON'T 2189 01:54:14,640 --> 01:54:15,320 GET A LOT OF THIS INFORMATION 2190 01:54:15,320 --> 01:54:17,600 BACK FOR ME OR MY CARE TEAM. 2191 01:54:17,600 --> 01:54:20,920 ONE STUDY STARTED IN 2017 WHAT 2192 01:54:20,920 --> 01:54:22,920 YOU ALL KNOW NOW AS 23 AND ME. 2193 01:54:22,920 --> 01:54:25,240 BACK THEN IT WAS A LUPUS STUDY 2194 01:54:25,240 --> 01:54:26,560 AND AS A COMMUNITY WE WERE ASKED 2195 01:54:26,560 --> 01:54:30,000 TO FILL OUT SURVEYS AND HELP 2196 01:54:30,000 --> 01:54:31,080 THEM WITH THEIR RESEARCH AND 2197 01:54:31,080 --> 01:54:32,960 WHAT WE WOULD GET BACK WAS RAW 2198 01:54:32,960 --> 01:54:33,400 DATA. 2199 01:54:33,400 --> 01:54:36,880 SO WE ALL DID IT. 2200 01:54:36,880 --> 01:54:42,440 I GOT BACK A FORM OF MY RAW DATA 2201 01:54:42,440 --> 01:54:45,080 OR A DISK AND BROUGHT IT TO MY 2202 01:54:45,080 --> 01:54:53,760 DOCTORS AND THEY LOOKED AT ONEs 2203 01:54:53,760 --> 01:54:57,480 AND ZEROs AND TOLD ME TO KEEP IT 2204 01:54:57,480 --> 01:54:58,680 BECAUSE LATER DOWN THE LINE IT 2205 01:54:58,680 --> 01:55:00,320 WOULD COME IN HANDY. 2206 01:55:00,320 --> 01:55:03,040 I MET A WOMAN WHO WAS ABLE TO 2207 01:55:03,040 --> 01:55:05,320 INTERPRET IT AND HER RESPONSE 2208 01:55:05,320 --> 01:55:06,480 WAS SHOCKED. 2209 01:55:06,480 --> 01:55:07,760 SHE SAID WHAT DID THEY DO AFTER 2210 01:55:07,760 --> 01:55:10,520 THEY SAW THE RESULTS, I SAID 2211 01:55:10,520 --> 01:55:13,680 WHAT DO YOU MEAN, WHAT DID THEY 2212 01:55:13,680 --> 01:55:13,920 DO? 2213 01:55:13,920 --> 01:55:15,720 SHE SAID YOU HAVE DENSITY 2214 01:55:15,720 --> 01:55:18,120 MUTATIONS IN YOUR MITOCHONDRIAL 2215 01:55:18,120 --> 01:55:18,880 I'VE NEVER SEEN BEFORE AND 2216 01:55:18,880 --> 01:55:20,800 DELETIONS AND ADDITIONS AND I'M 2217 01:55:20,800 --> 01:55:21,400 SURPRISED AND SHOCKED NO ONE 2218 01:55:21,400 --> 01:55:26,040 TOLD YOU THIS. 2219 01:55:26,040 --> 01:55:29,960 SO RECENTLY I'M IN A 2220 01:55:29,960 --> 01:55:31,520 LONGITUDINAL COVID STUDY WHERE I 2221 01:55:31,520 --> 01:55:32,240 WAS DIAGNOSED WITH COVID. 2222 01:55:32,240 --> 01:55:34,160 MY P.I. CALLED ME I WAS 2223 01:55:34,160 --> 01:55:35,320 CURRENTLY IN THE HOSPITAL AT THE 2224 01:55:35,320 --> 01:55:37,280 TIME AND TOLD MY PHYSICIANS I 2225 01:55:37,280 --> 01:55:41,200 HAD TESTED POSITIVE AND THEY RAN 2226 01:55:41,200 --> 01:55:43,920 THEIR OWN TEST I HAD SURGERY 2227 01:55:43,920 --> 01:55:45,080 SCHEDULED FOR TWO DAYS LATER 2228 01:55:45,080 --> 01:55:45,880 THEN CANCELED BECAUSE THE 2229 01:55:45,880 --> 01:55:48,520 INFORMATION FROM MY STUDY WAS 2230 01:55:48,520 --> 01:55:50,280 NOT ABLE TO BE SHARED WITH MY 2231 01:55:50,280 --> 01:55:50,520 PROVIDERS. 2232 01:55:50,520 --> 01:55:52,640 SO THOSE ARE TWO EXAMPLES, 2233 01:55:52,640 --> 01:55:53,320 MYSELF WHERE I'VE HAD 2234 01:55:53,320 --> 01:55:56,920 INFORMATION THAT COULD HAVE BEEN 2235 01:55:56,920 --> 01:56:02,720 HELPFUL BUT REALLY WASN'T. 2236 01:56:02,720 --> 01:56:09,760 SO HERE'S MY -- AND BY THE WAY, 2237 01:56:09,760 --> 01:56:11,160 THAT'S DAMAGE FROM MY BRAIN AND 2238 01:56:11,160 --> 01:56:15,120 I'M HALF ASIAN AND I METABOLIZE 2239 01:56:15,120 --> 01:56:16,400 SOME COMPOUNDS DIFFERENTLY 2240 01:56:16,400 --> 01:56:17,320 CAUSING MORE DAMAGE THAN MAYBE 2241 01:56:17,320 --> 01:56:18,560 THEY SHOULD HAVE. 2242 01:56:18,560 --> 01:56:21,080 I WAS A REPRESENT FOR PATIENTS 2243 01:56:21,080 --> 01:56:23,760 LIKE ME WAY BACK WHEN WHICH GOT 2244 01:56:23,760 --> 01:56:26,000 ME INVOLVED WITH MY DIGITAL TWIN 2245 01:56:26,000 --> 01:56:27,600 AND WHAT COULD WE DO WITH 2246 01:56:27,600 --> 01:56:27,920 TECHNOLOGY. 2247 01:56:27,920 --> 01:56:30,640 I SHOWED UP ON THE DARK WEB 2248 01:56:30,640 --> 01:56:32,560 RECENTLY AND I'VE HAD PEOPLE 2249 01:56:32,560 --> 01:56:34,760 HACK MY PROFILES AND STEAL MY 2250 01:56:34,760 --> 01:56:36,520 PICTURES AND PRETEND TO BE ME. 2251 01:56:36,520 --> 01:56:38,920 THEN THE LAST PICTURE RIGHT 2252 01:56:38,920 --> 01:56:41,600 THERE OF THE FLOWERS IS TARGETED 2253 01:56:41,600 --> 01:56:43,080 AT MARKETING. 2254 01:56:43,080 --> 01:56:44,920 MY ADS THAT SHOW UP ON FACEBOOK 2255 01:56:44,920 --> 01:56:48,280 BECAUSE OF THINGS I SEARCH ARE 2256 01:56:48,280 --> 01:56:49,360 FLOWERS FOR FUNERALS. 2257 01:56:49,360 --> 01:56:50,800 WHAT DO YOU THINK THAT DOES TO 2258 01:56:50,800 --> 01:56:57,520 THE MENTAL HEALTH OF A PATIENT. 2259 01:56:57,520 --> 01:56:59,120 HERE WE TALK ABOUT CONTENT AND 2260 01:56:59,120 --> 01:56:59,920 IT'S BROKEN. 2261 01:56:59,920 --> 01:57:04,200 I LIKE TO TELL PEOPLE CONSENT IS 2262 01:57:04,200 --> 01:57:08,080 A COVER YOUR ASS FORM OF 2263 01:57:08,080 --> 01:57:08,400 RESISTANCE. 2264 01:57:08,400 --> 01:57:13,120 IT'S A PATIENT GOING THROUGH 2265 01:57:13,120 --> 01:57:18,280 TRAUMA VERSUS TEAMS OF LAWYERS 2266 01:57:18,280 --> 01:57:20,000 AND CONTRACTS AND DIGITAL DARK 2267 01:57:20,000 --> 01:57:21,640 PATTERNS WE'LL GO INTO IN A 2268 01:57:21,640 --> 01:57:23,440 MINUTE AND YOU CAN ADD BACK ROOM 2269 01:57:23,440 --> 01:57:25,960 DEALS ON THE SECONDARY USE OF 2270 01:57:25,960 --> 01:57:27,480 OUR DATA AND TECH FORM PLATFORMS 2271 01:57:27,480 --> 01:57:28,160 WHO ARE ALSO TAKING ADVANTAGE OF 2272 01:57:28,160 --> 01:57:32,560 THAT DATA. 2273 01:57:32,560 --> 01:57:35,120 SO WHAT WE DON'T CONSENT TO IS 2274 01:57:35,120 --> 01:57:37,360 SIGNING AWAY OUR HUMAN RIGHTS 2275 01:57:37,360 --> 01:57:39,760 BUT IN ORDER TO GET OUR CARE, WE 2276 01:57:39,760 --> 01:57:43,120 HAVE TO CONSENT TO THESE THINGS. 2277 01:57:43,120 --> 01:57:45,080 SO REALLY TAKING A LOOK AT THAT 2278 01:57:45,080 --> 01:57:47,960 CONSENT PROCESS AND WHAT IT 2279 01:57:47,960 --> 01:57:49,640 MEANS BUT THIS IS WHAT IT IS 2280 01:57:49,640 --> 01:57:51,960 WHEN WE CONSENT TO A TREATMENT. 2281 01:57:51,960 --> 01:57:54,640 WHEN I GOT THIS BLUE TOOTH 2282 01:57:54,640 --> 01:57:56,680 ENABLED PACEMAKER PUT IN WE PUT 2283 01:57:56,680 --> 01:57:58,280 IT IN WITHIN FIVE DAYS BECAUSE 2284 01:57:58,280 --> 01:58:00,480 WE HAD DATA THAT I NEEDED IT BUT 2285 01:58:00,480 --> 01:58:02,040 WITHIN THE FIVE DAYS THERE WAS 2286 01:58:02,040 --> 01:58:07,000 NO WARNING. 2287 01:58:07,000 --> 01:58:08,760 MY CONSENT WAS YOU NEED THIS OR 2288 01:58:08,760 --> 01:58:10,080 YOU'LL DIE AND SIGNED AWAY NOT 2289 01:58:10,080 --> 01:58:16,320 KNOWING THERE WAS A RISK WITH A 2290 01:58:16,320 --> 01:58:17,640 BLUE TOOTH ENABLED DEVICE AND 2291 01:58:17,640 --> 01:58:18,480 THINGS WE NEED TO THINK ABOUT 2292 01:58:18,480 --> 01:58:21,880 WHEN WE LOOK AT THESE. 2293 01:58:21,880 --> 01:58:24,800 ANDREA IS THE FOUNDER OF THE 2294 01:58:24,800 --> 01:58:27,040 LIGHT COLLECTIVE AND SECURITY 2295 01:58:27,040 --> 01:58:28,160 RESEARCHER WHO DISCOVERED A FLAW 2296 01:58:28,160 --> 01:58:31,080 IN FACEBOOK'S ALGORITHM THAT 2297 01:58:31,080 --> 01:58:33,280 EXPOSED USER'S PRIVATE 2298 01:58:33,280 --> 01:58:35,120 INFORMATION TO UNAUTHORIZED 2299 01:58:35,120 --> 01:58:38,920 THIRD PARTIES AND IDENTIFIED A 2300 01:58:38,920 --> 01:58:42,960 VULNERABILITY IN THE DATA 2301 01:58:42,960 --> 01:58:44,760 ENCRYPTION ACCESS ALLOWING MER 2302 01:58:44,760 --> 01:58:46,400 TO ACCESS DATA WITHOUT DETECTION 2303 01:58:46,400 --> 01:58:48,640 AND PROMPTED FACEBOOK TO SWIFTLY 2304 01:58:48,640 --> 01:58:51,960 ADDRESS AND PATCH THE FLAW, 2305 01:58:51,960 --> 01:58:53,160 REINFORCING THEIR COMMITMENT TO 2306 01:58:53,160 --> 01:58:55,120 USER PRIVACY AND SECURITY BUT 2307 01:58:55,120 --> 01:58:57,760 NOT OUR HEALTH INFORMATION. 2308 01:58:57,760 --> 01:59:00,440 YOU'LL SEE LATELY I DON'T KNOW 2309 01:59:00,440 --> 01:59:04,800 IF YOU SAW YESTERDAY BUT THE FTC 2310 01:59:04,800 --> 01:59:07,600 FILED SUIT BLOCKING THE 2311 01:59:07,600 --> 01:59:09,400 ACQUISITION OF THE MEDIA WE'RE 2312 01:59:09,400 --> 01:59:12,200 SEEING EIGHT OF IN THIS SPACE 2313 01:59:12,200 --> 01:59:22,360 FROM THE WORK WE'RE DOING HERE. 2314 01:59:22,360 --> 01:59:23,720 SO FACEBOOK AND OTHER SOCIAL 2315 01:59:23,720 --> 01:59:25,800 MEDIA PLATFORMS MAY COLLECT 2316 01:59:25,800 --> 01:59:28,240 OTHER TYPES OF DATA INCLUDING 2317 01:59:28,240 --> 01:59:29,120 DEMOGRAPHIC INFORMATION AND 2318 01:59:29,120 --> 01:59:30,520 INTEREST, BEHAVIORS AND 2319 01:59:30,520 --> 01:59:34,440 INTERACTIONS AND OFTEN EMPLOY 2320 01:59:34,440 --> 01:59:36,000 SOPHISTICATED ALGORITHMS TO 2321 01:59:36,000 --> 01:59:37,680 ANALYZE THE DATA AND HAVE 2322 01:59:37,680 --> 01:59:39,720 PERSONALIZED CON BUT THE 2323 01:59:39,720 --> 01:59:40,760 INFORMATION MAY NOT DIRECTLY 2324 01:59:40,760 --> 01:59:41,960 COME FROM HOSPITALS. 2325 01:59:41,960 --> 01:59:44,160 IT CAN STILL CONTRIBUTE TO 2326 01:59:44,160 --> 01:59:45,520 BUILDING DETAILED PROFILES OF 2327 01:59:45,520 --> 01:59:48,680 USERS WHICH COULD INDIRECTLY 2328 01:59:48,680 --> 01:59:49,880 REVEAL HEALTH RELATED 2329 01:59:49,880 --> 01:59:51,080 PREFERENCES. 2330 01:59:51,080 --> 01:59:55,960 AND YOU'LL SEE AND I THINK I'M 2331 01:59:55,960 --> 01:59:59,400 SURE SOME KNOW HHS ISSUED THAT 2332 01:59:59,400 --> 02:00:02,920 ALL HOSPITALS HAVE TO WATCH THE 2333 02:00:02,920 --> 02:00:03,280 PIXEL TRACKING. 2334 02:00:03,280 --> 02:00:06,960 AS WE GO ON YOU CAN SEE SOCIAL 2335 02:00:06,960 --> 02:00:09,440 MEDIA BEING USED IN OTHER WAYS. 2336 02:00:09,440 --> 02:00:11,960 THERE WAS A REVELATION A WHILE 2337 02:00:11,960 --> 02:00:14,080 BACK THAT EMERGED WHEN IT WAS 2338 02:00:14,080 --> 02:00:18,320 DISCOVERED A SUICIDE CHAT LINE 2339 02:00:18,320 --> 02:00:19,920 NON-PROFIT HAD UNETHICALLY 2340 02:00:19,920 --> 02:00:22,040 UTILIZED THE DATA FOR A 2341 02:00:22,040 --> 02:00:22,600 FOR-PROFIT DRIVEN PURPOSE. 2342 02:00:22,600 --> 02:00:26,560 THEY WERE TAKING THE INFORMATION 2343 02:00:26,560 --> 02:00:28,400 FROM THE CHAT BOX AT THE TEXT 2344 02:00:28,400 --> 02:00:30,240 LINE AND USING THEM TO TRY TO 2345 02:00:30,240 --> 02:00:33,000 BUILD A WAY OF COMMUNICATING FOR 2346 02:00:33,000 --> 02:00:34,640 OUTSIDE OF HEALTH CARE WHICH WAS 2347 02:00:34,640 --> 02:00:38,000 EXTREMELY CONCERNING TO THOSE 2348 02:00:38,000 --> 02:00:40,760 WHO WERE USING THAT CHATBOT AND 2349 02:00:40,760 --> 02:00:43,080 I'M SURE WOULD BE TO YOU AS 2350 02:00:43,080 --> 02:00:51,600 WELL. 2351 02:00:51,600 --> 02:00:53,600 THE NON-PROFIT BETRAYED THE 2352 02:00:53,600 --> 02:00:56,560 PRINCIPLES THEY WERE FOUNDED ON. 2353 02:00:56,560 --> 02:00:59,080 THIS PROMPTED A DEMAND FOR 2354 02:00:59,080 --> 02:01:00,120 STRICTER REGULATIONS TO 2355 02:01:00,120 --> 02:01:01,160 SAFEGUARD THE PRIVACY AND WELL 2356 02:01:01,160 --> 02:01:03,080 BEING OF THOSE SEEKING MENTAL 2357 02:01:03,080 --> 02:01:09,160 HEALTH SUPPORT. 2358 02:01:09,160 --> 02:01:11,080 SO HERE IS WE'RE SHOWING WOMEN 2359 02:01:11,080 --> 02:01:13,160 AND MINORITIES ARE OFTEN HACKED 2360 02:01:13,160 --> 02:01:15,040 MORE THAN OTHERS AND IF YOU LOOK 2361 02:01:15,040 --> 02:01:17,440 AT THE STATISTICS DOWN AT THE 2362 02:01:17,440 --> 02:01:18,760 BOTTOM I WON'T READ THEM ALL TO 2363 02:01:18,760 --> 02:01:22,480 YOU BUT IT SAYS USERS THAT HAVE 2364 02:01:22,480 --> 02:01:27,960 A HIGHER LEVEL OF EDUCATION FEEL 2365 02:01:27,960 --> 02:01:36,600 MORE SECURE. 2366 02:01:36,600 --> 02:01:39,080 WHILE WE THINK WE'RE PREPARED WE 2367 02:01:39,080 --> 02:01:40,440 REALLY AREN'T. 2368 02:01:40,440 --> 02:01:44,120 SO CLINICIANS NOW ARE DEVELOPING 2369 02:01:44,120 --> 02:01:45,240 PREDICTIVE ALGORITHMS AND SO AS 2370 02:01:45,240 --> 02:01:47,400 WE LOOK AT THAT AND LOOK AT 2371 02:01:47,400 --> 02:01:50,280 DIGITAL DARK PATTERNS, WHICH WE 2372 02:01:50,280 --> 02:01:51,920 JUST DISCUSSED, AND THOSE IN 2373 02:01:51,920 --> 02:01:55,000 CASE YOU DON'T KNOW ARE 2374 02:01:55,000 --> 02:01:57,160 DECEPTIVE OR MANIPULATIVE DESIGN 2375 02:01:57,160 --> 02:02:01,040 TECHNIQUES THAT ARE USER 2376 02:02:01,040 --> 02:02:03,640 INTERFACES USED TO TRICK OR 2377 02:02:03,640 --> 02:02:05,000 MISLEAD PATIENTS OR PEOPLE BY 2378 02:02:05,000 --> 02:02:07,560 CLICKING ON THE LINKS OR USING 2379 02:02:07,560 --> 02:02:08,040 THE APPS. 2380 02:02:08,040 --> 02:02:10,640 REALLY COLLECTING INFORMATION. 2381 02:02:10,640 --> 02:02:16,240 SOME EXAMPLES OF DIGITAL DARK 2382 02:02:16,240 --> 02:02:19,080 PATTERNS INCLUDE 2383 02:02:19,080 --> 02:02:24,560 [AUDIO DIGITIZING] 2384 02:02:24,560 --> 02:02:25,880 CONTRACTS AROUND THEN FORWARD 2385 02:02:25,880 --> 02:02:27,080 AND NOT BEING ABLE TO GET OUT OF 2386 02:02:27,080 --> 02:02:34,480 THOSE CONTRACTS. 2387 02:02:34,480 --> 02:02:36,080 I JUST LOST MY TIMER. 2388 02:02:36,080 --> 02:02:37,320 HOW MUCH DO I HAVE LEFT? 2389 02:02:37,320 --> 02:02:39,320 I'LL SPEED THROUGH THE REST OF 2390 02:02:39,320 --> 02:02:46,040 THIS. 2391 02:02:46,040 --> 02:02:49,440 THESE DARK PATTERNS EXPLOIT 2392 02:02:49,440 --> 02:02:51,480 COGNITIVE BIAS THAT MAY NOT 2393 02:02:51,480 --> 02:02:53,520 ALIGN WITH TRUE INTENTIONS OR 2394 02:02:53,520 --> 02:02:54,360 INTERESTS. 2395 02:02:54,360 --> 02:02:56,440 THEY'RE UNETHICAL AND ERODE USER 2396 02:02:56,440 --> 02:02:57,680 TRUST AS THEY PRIORITIZE THE 2397 02:02:57,680 --> 02:02:59,880 GOALS OF BUSINESS OVER THE NEEDS 2398 02:02:59,880 --> 02:03:02,880 AND RIGHTS. 2399 02:03:02,880 --> 02:03:05,360 REGULATORY BODIES AND CONSUMER 2400 02:03:05,360 --> 02:03:07,320 ADVOCACY GROUPS ARE INCREASINGLY 2401 02:03:07,320 --> 02:03:09,080 FOCUSSED ON IDENTIFYING AND 2402 02:03:09,080 --> 02:03:11,320 DISCOURAGING THE USE OF DARK 2403 02:03:11,320 --> 02:03:20,240 PATTERNS. 2404 02:03:20,240 --> 02:03:26,520 IT'S IMPORTANT TO LOOK AT 2405 02:03:26,520 --> 02:03:32,680 PSYCHIATRIC DATA AND NOW ADD 2406 02:03:32,680 --> 02:03:36,320 REPRODUCTIVE HEALTH DATA TO THE 2407 02:03:36,320 --> 02:03:36,480 MIX. 2408 02:03:36,480 --> 02:03:40,440 IMAGINE A WOMAN WITH POSTPARTUM 2409 02:03:40,440 --> 02:03:41,840 DEPRESSION AND RESEARCHERS MUST 2410 02:03:41,840 --> 02:03:43,080 BE THOUGHTFUL OF THE STATES IN 2411 02:03:43,080 --> 02:03:44,080 WHICH THEY CONDUCT CERTAIN 2412 02:03:44,080 --> 02:03:45,480 RESEARCH 2413 02:03:45,480 --> 02:04:02,360 >>ANY QUESTIONS FOR CHRISTINE? 2414 02:04:02,360 --> 02:04:03,560 TO CLOSE OUT MY LAST THOUGHTS I 2415 02:04:03,560 --> 02:04:05,960 SEE THIS GOING TO MORE OF A 2416 02:04:05,960 --> 02:04:08,280 MARKETPLACE WHERE AS A PATIENT I 2417 02:04:08,280 --> 02:04:14,200 HAVE AGENCY OVER MY DATA AND I 2418 02:04:14,200 --> 02:04:17,640 CAN TAKE MY DATA AND INVEST IT. 2419 02:04:17,640 --> 02:04:20,040 I DON'T WANT TO GO THROUGH A 2420 02:04:20,040 --> 02:04:21,440 MILLION CONSENTS ALL THE TIME 2421 02:04:21,440 --> 02:04:23,240 BUT I WANT IT OUT TO RESEARCH 2422 02:04:23,240 --> 02:04:25,080 BUT WANT IT AS EASY AS POSSIBLE 2423 02:04:25,080 --> 02:04:26,840 FOR ME BUT I DON'T WANT ONE 2424 02:04:26,840 --> 02:04:27,840 BLANKET CONSENT THAT HAS ME SIGN 2425 02:04:27,840 --> 02:04:30,400 OFF EVERYTHING. 2426 02:04:30,400 --> 02:04:32,080 I DO WANT TO KNOW WHERE ANY DATA 2427 02:04:32,080 --> 02:04:34,680 IS GOING, WHAT'S IT BEING USED 2428 02:04:34,680 --> 02:04:36,520 FOR AND HOW ARE PEOPLE 2429 02:04:36,520 --> 02:04:37,080 PROFITING. 2430 02:04:37,080 --> 02:04:38,800 I'M NOT AGAINST PROFITS AS A 2431 02:04:38,800 --> 02:04:39,520 PATIENT AT ALL. 2432 02:04:39,520 --> 02:04:46,200 I THINK WE NEED PROFITS IN ORDER 2433 02:04:46,200 --> 02:04:48,200 TO STIR INNOVATION BUT HOW DO WE 2434 02:04:48,200 --> 02:04:49,760 DO THIS IN A FAIR WAY WITH 2435 02:04:49,760 --> 02:04:53,080 PEOPLE GENERATING THE DATA AND 2436 02:04:53,080 --> 02:04:53,720 NOT GETTING ANYTHING BACK FROM 2437 02:04:53,720 --> 02:05:03,800 IT? 2438 02:05:04,280 --> 02:05:13,080 NONE THEY CAN BENEFIT FROM AND 2439 02:05:13,080 --> 02:05:16,760 WE WANT TO OPEN UP MY DATA TO 2440 02:05:16,760 --> 02:05:17,400 INTERNATIONAL RESEARCHERS AND 2441 02:05:17,400 --> 02:05:19,280 WHEN WE DON'T HAVE IT TO FIX MY 2442 02:05:19,280 --> 02:05:21,080 OWN PROBLEM WHAT I ASK IS IF WE 2443 02:05:21,080 --> 02:05:25,080 HAVE ALL THESE PEOPLE 2444 02:05:25,080 --> 02:05:27,840 CONTRIBUTING EVERYTHING THEY 2445 02:05:27,840 --> 02:05:31,000 HAVE FOR YOU I'VE BEEN FORCED TO 2446 02:05:31,000 --> 02:05:32,480 LIVE IN CERTAIN FINANCIAL 2447 02:05:32,480 --> 02:05:33,600 GUIDELINES THE LAST 20 YEARS TO 2448 02:05:33,600 --> 02:05:36,160 GET THE CARE I NEED BUT I ALSO 2449 02:05:36,160 --> 02:05:37,680 FEEL THE INFORMATION I PRODUCE 2450 02:05:37,680 --> 02:05:40,240 AND THE WORK I DO REVIEWING 2451 02:05:40,240 --> 02:05:43,880 PANELS AND THE MONEY THAT'S MADE 2452 02:05:43,880 --> 02:05:45,560 WHILE WE'RE FORCED TO LIVE IN 2453 02:05:45,560 --> 02:05:45,760 POVERTY. 2454 02:05:45,760 --> 02:05:47,400 I THINK ONE THING WE HAVE TO 2455 02:05:47,400 --> 02:05:49,000 CONSIDER IS AGENCY OVER THE DATA 2456 02:05:49,000 --> 02:05:51,640 AND WHAT ARE THESE PEOPLE GIVING 2457 02:05:51,640 --> 02:05:55,040 BACK ESPECIALLY AS WE'RE MOVING 2458 02:05:55,040 --> 02:05:57,080 INTO MORE DIGITAL 2459 02:05:57,080 --> 02:06:07,280 [NO AUDIO] 2460 02:06:16,920 --> 02:06:19,160 >>I THINK WE WANT RESEARCHERS 2461 02:06:19,160 --> 02:06:20,360 TO FEEDBACK INFORMATION THAT'S 2462 02:06:20,360 --> 02:06:25,720 AVAILABLE TO YOU AND YOUR 2463 02:06:25,720 --> 02:06:26,000 PROVIDERS. 2464 02:06:26,000 --> 02:06:36,520 THAT YOU SAID YOU DON'T WANT TO 2465 02:06:38,320 --> 02:06:41,080 BE ASKED EVERY TIME BUT WOULD A 2466 02:06:41,080 --> 02:06:42,200 TRUSTED BROKER MODEL LIKE A 2467 02:06:42,200 --> 02:06:44,400 PERSON YOU TRUST TO MAKE THOSE 2468 02:06:44,400 --> 02:06:44,800 DECISIONS FOR YOU? 2469 02:06:44,800 --> 02:06:45,120 OKAY. 2470 02:06:45,120 --> 02:06:52,160 I DO. 2471 02:06:52,160 --> 02:06:55,680 IT SHOULD BE AN AGENT AND THE 2472 02:06:55,680 --> 02:06:56,760 OWNERSHIP SHOULD GO BACK TO THE 2473 02:06:56,760 --> 02:06:57,880 PATIENT GROUPS AND THE PROFIT 2474 02:06:57,880 --> 02:06:58,880 SHOULD GO BACK TO THE PATIENT 2475 02:06:58,880 --> 02:06:59,120 GROUPS. 2476 02:06:59,120 --> 02:07:03,200 I THINK IF WE WERE TO REORGANIZE 2477 02:07:03,200 --> 02:07:04,440 THE GROUPS IN A DIFFERENT WAY TO 2478 02:07:04,440 --> 02:07:07,600 MAKE THEM MORE EFFECTIVE TO CUT 2479 02:07:07,600 --> 02:07:10,600 SOME OF THE COSTS WE HAVE FOR 2480 02:07:10,600 --> 02:07:11,200 RECRUITING AND RETENTION AND 2481 02:07:11,200 --> 02:07:13,560 BUILD THAT TRUST WITH THOSE 2482 02:07:13,560 --> 02:07:15,920 GROUPS I THINK WE'D BE MORE 2483 02:07:15,920 --> 02:07:17,360 EFFECTIVE AND GETTING OUT THE 2484 02:07:17,360 --> 02:07:18,120 MESSAGES WE NEED TO GET OUT TO 2485 02:07:18,120 --> 02:07:26,280 THOSE COMMUNITIES. 2486 02:07:26,280 --> 02:07:27,600 >>I THINK WE'LL MOVE ON TO THE 2487 02:07:27,600 --> 02:07:28,480 NEXT SPEAKER AND HAVE YOU PART 2488 02:07:28,480 --> 02:07:29,280 OF THE DISCUSSION. 2489 02:07:29,280 --> 02:07:39,080 THANK YOU SO MUCH. 2490 02:07:39,080 --> 02:07:40,080 >>THE LAST SPEAKER ON THE PANEL 2491 02:07:40,080 --> 02:07:47,800 IS MY FRIEND, AMY McGUIRE THE 2492 02:07:47,800 --> 02:07:50,080 LEON JAWORSKI PROFESSOR OF 2493 02:07:50,080 --> 02:07:52,520 BIOMEDICAL ETHICS AND DIRECTOR 2494 02:07:52,520 --> 02:07:54,120 FOR AT BAYLOR COLLEGE OF 2495 02:07:54,120 --> 02:07:55,800 MEDICINE AND RECEIVED HER JD 2496 02:07:55,800 --> 02:07:57,360 FROM UNIVERSITY OF HOUSTON AND 2497 02:07:57,360 --> 02:07:58,920 Ph.D. FROM UNIVERSITY OF TEXAS 2498 02:07:58,920 --> 02:08:02,520 MEDICAL SCHOOL AT GALVESTON. 2499 02:08:02,520 --> 02:08:04,360 DR. McGWIRE RESEARCHES ETHICAL 2500 02:08:04,360 --> 02:08:06,920 AND POLICY ISSUES RELATED TO 2501 02:08:06,920 --> 02:08:08,440 EMERGING TECHNOLOGIES AND 2502 02:08:08,440 --> 02:08:09,120 INNOVATIVE THERAPEUTICS WITH A 2503 02:08:09,120 --> 02:08:12,040 PARTICULAR FOCUS ON GENETICS AND 2504 02:08:12,040 --> 02:08:17,040 GENOMICS, NEURAL PSYCHOLOGY AND 2505 02:08:17,040 --> 02:08:18,560 CLINICAL INTEGRATION OF 2506 02:08:18,560 --> 02:08:19,240 NEUROLOGICAL DEVICE. 2507 02:08:19,240 --> 02:08:21,920 WE WELCOME AMY TO SHARE DATA 2508 02:08:21,920 --> 02:08:22,840 SHE'S GOT ON THE TOPIC. 2509 02:08:22,840 --> 02:08:25,120 THANK YOU, AMY. 2510 02:08:25,120 --> 02:08:35,520 >>THANK YOU, CHRISTINE. 2511 02:08:37,160 --> 02:08:40,000 >>THIS HAS BEEN GREAT AND 2512 02:08:40,000 --> 02:08:41,080 MISSED SOME OF YESTERDAY BUT I 2513 02:08:41,080 --> 02:08:42,280 HEARD THE DISCUSSION AND IT'S 2514 02:08:42,280 --> 02:08:43,800 BEEN FANTASTIC. 2515 02:08:43,800 --> 02:08:44,760 I'M PRIVILEGED TO BE ON THIS 2516 02:08:44,760 --> 02:08:47,000 PARTICULAR PANEL WITH 2517 02:08:47,000 --> 02:08:48,640 INDIVIDUALS WHO HAVE REAL 2518 02:08:48,640 --> 02:08:49,600 EXPERIENCE BECAUSE I THINK THOSE 2519 02:08:49,600 --> 02:08:51,280 ARE THE FOLKS WHO SHOULD BE 2520 02:08:51,280 --> 02:08:53,480 INFORMING THIS DISCUSSION THE 2521 02:08:53,480 --> 02:08:56,720 MOST. 2522 02:08:56,720 --> 02:08:59,320 IT'S WITH HUMILITY I DO THIS 2523 02:08:59,320 --> 02:08:59,680 PRESENTATION. 2524 02:08:59,680 --> 02:09:01,680 I'M PRESENTING EMPIRICAL DATA 2525 02:09:01,680 --> 02:09:03,840 AROUND THE ISSUE OF DATA SHARING 2526 02:09:03,840 --> 02:09:09,080 AND SHARING SOME THOUGHTS THAT 2527 02:09:09,080 --> 02:09:12,240 HA 2528 02:09:12,240 --> 02:09:14,480 HAVES BEEN INFORMED BY PATIENTS 2529 02:09:14,480 --> 02:09:17,920 MOST AFFECTED BY THIS. 2530 02:09:17,920 --> 02:09:20,400 I'LL SHARE DATA FROM A NEURO 2531 02:09:20,400 --> 02:09:21,320 ETHICS STUDY ONGOING CALLED 2532 02:09:21,320 --> 02:09:29,240 BRAIN SHARE. 2533 02:09:29,240 --> 02:09:30,880 WE'RE VERY MUCH IN THE MIDDLE OF 2534 02:09:30,880 --> 02:09:33,080 COLLECTING DATA FOR BRAIN SHARE. 2535 02:09:33,080 --> 02:09:35,360 I HAVE PRELIMINARY DATA TO SHARE 2536 02:09:35,360 --> 02:09:38,080 AND WILL BE HAPPY TO WORK WITH 2537 02:09:38,080 --> 02:09:39,560 THIS GROUP TO COLLECT ADDITIONAL 2538 02:09:39,560 --> 02:09:41,080 DATA THAT MAY NECESSARY TO 2539 02:09:41,080 --> 02:09:46,040 INFORM THE DELIBERATIONS AND 2540 02:09:46,040 --> 02:09:47,200 REPORT BACK WHAT WE LEARNED 2541 02:09:47,200 --> 02:09:48,000 GOING FORWARD. 2542 02:09:48,000 --> 02:09:49,360 I WANT TO START WITH MY 2543 02:09:49,360 --> 02:09:49,640 CONCLUSION. 2544 02:09:49,640 --> 02:09:50,280 I KNOW IT'S BEEN A LONG TWO 2545 02:09:50,280 --> 02:09:53,560 DAYS. 2546 02:09:53,560 --> 02:09:56,080 I'LL BRENT SOME DATA AND GIVE 2547 02:09:56,080 --> 02:09:56,720 FINAL THOUGHTS. 2548 02:09:56,720 --> 02:09:58,680 THE FIRST QUESTION I REALLY 2549 02:09:58,680 --> 02:10:00,680 WANTED TO TRY TO ADDRESS IS 2550 02:10:00,680 --> 02:10:02,280 SHOULD WE BE SHARING BRAIN DATA 2551 02:10:02,280 --> 02:10:02,960 AT ALL? 2552 02:10:02,960 --> 02:10:05,000 AND I THINK THIS HAS COME UP 2553 02:10:05,000 --> 02:10:07,600 MANY TIMES OVER THE LAST COUPLE 2554 02:10:07,600 --> 02:10:10,680 DAYS BUT IT REALLY IS WHEN YOU 2555 02:10:10,680 --> 02:10:12,520 DECIDE ABOUT DATA SHARING IT'S A 2556 02:10:12,520 --> 02:10:12,760 TRADE-OFF. 2557 02:10:12,760 --> 02:10:14,200 IT'S A TRADE-OFF BETWEEN THE 2558 02:10:14,200 --> 02:10:16,920 POTENTIAL RISKS AND BENEFITS 2559 02:10:16,920 --> 02:10:17,840 BECAUSE THERE ARE A LOT OF 2560 02:10:17,840 --> 02:10:19,880 BENEFITS AND SOME POTENTIAL 2561 02:10:19,880 --> 02:10:20,080 RISKS. 2562 02:10:20,080 --> 02:10:22,040 AND HOW PEOPLE MAKE THAT 2563 02:10:22,040 --> 02:10:24,080 TRADE-OFF IS GOING TO DIFFER 2564 02:10:24,080 --> 02:10:25,640 INDIVIDUALLY SO SOME PEOPLE WILL 2565 02:10:25,640 --> 02:10:29,840 FEEL VERY DIFFERENTLY ABOUT 2566 02:10:29,840 --> 02:10:30,920 THEIR PRIVACY THAN OTHERS AND 2567 02:10:30,920 --> 02:10:33,200 MAY FEEL DIFFERENTLY GIVEN THE 2568 02:10:33,200 --> 02:10:34,040 CIRCUMSTANCES THEY'RE IN. 2569 02:10:34,040 --> 02:10:37,120 WE'VE HEARD FROM SOME 2570 02:10:37,120 --> 02:10:38,680 INDIVIDUALS ALREADY ON THE PANEL 2571 02:10:38,680 --> 02:10:40,720 WHO ARE PATIENTS AND MOTIVATED 2572 02:10:40,720 --> 02:10:43,400 TO ADVANCE SCIENCE AND THAT MAY 2573 02:10:43,400 --> 02:10:45,800 OUTWEIGH PRIVACY CONCERNS THEY 2574 02:10:45,800 --> 02:10:49,080 HAVE OR SOME PRIVACY CONCERNS 2575 02:10:49,080 --> 02:10:56,080 THEY HAVE. 2576 02:10:56,080 --> 02:10:58,800 AND DEPENDS ON WHO IS ASKING. 2577 02:10:58,800 --> 02:11:01,840 A LOT OF THIS IS ABOUT THE 2578 02:11:01,840 --> 02:11:05,400 TRUSTWORTHINESS OF THE 2579 02:11:05,400 --> 02:11:08,040 INDIVIDUALS WHO ARE ASKING FOR 2580 02:11:08,040 --> 02:11:09,920 THE DATA TO BE COLLECTED, STORED 2581 02:11:09,920 --> 02:11:13,080 AND SHARED. 2582 02:11:13,080 --> 02:11:15,080 I WANT TO MAKE THE ARGUMENT IN 2583 02:11:15,080 --> 02:11:18,440 MANY CASES OR IN SOME CASES YOU 2584 02:11:18,440 --> 02:11:22,080 THINK IT'S UNETHICAL OR AT LEAST 2585 02:11:22,080 --> 02:11:24,080 DISRESPECTFUL TO NOT SHARE DATA. 2586 02:11:24,080 --> 02:11:25,080 THAT'S WHAT INDIVIDUAL RESEARCH 2587 02:11:25,080 --> 02:11:25,760 PARTICIPANTS WANT. 2588 02:11:25,760 --> 02:11:28,320 THEY WANT THEIR DATA TO BE USED 2589 02:11:28,320 --> 02:11:29,040 TO ADVANCE THE SCIENCE AS 2590 02:11:29,040 --> 02:11:34,080 QUICKLY AS POSSIBLE. 2591 02:11:34,080 --> 02:11:37,080 I THINK IT'S MORE PROBLEMATIC TO 2592 02:11:37,080 --> 02:11:39,480 EXPOSE DATA AND NOT MAKE FULL 2593 02:11:39,480 --> 02:11:41,600 USE OF THE SHARED DATA. 2594 02:11:41,600 --> 02:11:43,680 I THINK WE'VE SEEN THAT TOO 2595 02:11:43,680 --> 02:11:45,480 OFTEN IN MANY FIELD. 2596 02:11:45,480 --> 02:11:46,680 A LOT OF MY DATA SHARING WORK 2597 02:11:46,680 --> 02:11:48,360 HAS BEEN DONE IN THE AREA OF 2598 02:11:48,360 --> 02:11:50,280 GENETICS AND GENOMICS AND OTHER 2599 02:11:50,280 --> 02:11:52,600 TYPES OF DATA AS WELL. 2600 02:11:52,600 --> 02:11:55,400 WE'VE SEEN DATABASES THAT GET 2601 02:11:55,400 --> 02:11:56,840 GENERATE AND BUILT AND THE DATA 2602 02:11:56,840 --> 02:11:58,400 DON'T GET USED FOR A VARIETY OF 2603 02:11:58,400 --> 02:12:02,600 REASONS. 2604 02:12:02,600 --> 02:12:06,480 THAT CAN BE PROBLEMATIC FROM AN 2605 02:12:06,480 --> 02:12:07,120 ETHICAL PERSPECTIVE. 2606 02:12:07,120 --> 02:12:10,280 IF WE START WITH THE PREMISE WE 2607 02:12:10,280 --> 02:12:12,080 OUGHT TO BE SHARING DATA 2608 02:12:12,080 --> 02:12:13,680 CONSISTENT WITH THOSE WHOSE DATA 2609 02:12:13,680 --> 02:12:15,120 WE'RE SHARING THE NEXT REAL 2610 02:12:15,120 --> 02:12:21,080 QUESTION IS HOW DO WE ETHICALLY 2611 02:12:21,080 --> 02:12:24,280 SHARE THE DATA? 2612 02:12:24,280 --> 02:12:25,320 I CAN'T STRESS ENOUGH IT'S 2613 02:12:25,320 --> 02:12:30,200 REALLY IMPORTANT TO PUT THE 2614 02:12:30,200 --> 02:12:31,440 RIGHT RULES IN PLACE THAT 2615 02:12:31,440 --> 02:12:33,080 ADDRESS SPECIFIC CONCERNS BEING 2616 02:12:33,080 --> 02:12:40,240 RAISED IN THE WORKSHOP. 2617 02:12:40,240 --> 02:12:42,720 WE NEED TO TALK ABOUT THE DATA 2618 02:12:42,720 --> 02:12:45,800 IN REPOSITORIES BEING ACCESSED 2619 02:12:45,800 --> 02:12:49,120 BY OTHER RESEARCHERS AND BEING 2620 02:12:49,120 --> 02:12:53,640 USED FOR RESEARCH PURPOSES. 2621 02:12:53,640 --> 02:12:55,760 I THINK WE DO THAT FAIRLY WELL 2622 02:12:55,760 --> 02:12:57,880 AND THERE'S TRUST BUT WITH THAT 2623 02:12:57,880 --> 02:13:00,040 TRUST COMES THE OBLIGATION TO BE 2624 02:13:00,040 --> 02:13:00,360 TRUSTWORTHY. 2625 02:13:00,360 --> 02:13:05,160 IN ORDER TO BE TRUSTWORTHY I 2626 02:13:05,160 --> 02:13:07,240 THINK WE NEED STRONGER RULES AND 2627 02:13:07,240 --> 02:13:09,080 GUIDELINES AROUND THE DATA USE 2628 02:13:09,080 --> 02:13:10,520 AND CONFIDENTIALITY. 2629 02:13:10,520 --> 02:13:12,560 WE NEED STRONGER DATA USE 2630 02:13:12,560 --> 02:13:14,840 AGREEMENTS THAT SPECIFY WHAT IS 2631 02:13:14,840 --> 02:13:20,440 ALLOWED AND NOT WITH REGARD TO 2632 02:13:20,440 --> 02:13:20,840 REI 2633 02:13:20,840 --> 02:13:22,640 RE-IDENTIFICATION AND MAKING 2634 02:13:22,640 --> 02:13:26,520 INFERENCES AND STRONGER 2635 02:13:26,520 --> 02:13:27,120 ACCOUNTABILITY. 2636 02:13:27,120 --> 02:13:28,680 WHAT HAPPENS IF SOMEONE VIOLATES 2637 02:13:28,680 --> 02:13:30,280 THE RULES WHETHER ETHICS RULES 2638 02:13:30,280 --> 02:13:32,000 OR POLICIES IN PLACE. 2639 02:13:32,000 --> 02:13:34,520 WE HAVE THIS MORE STRONGLY IN 2640 02:13:34,520 --> 02:13:36,200 CLINICAL MEDICINE BUT I DON'T 2641 02:13:36,200 --> 02:13:36,960 THINK IT'S QUITE AS STRONG IN 2642 02:13:36,960 --> 02:13:46,360 RESEARCH ETHICS. 2643 02:13:46,360 --> 02:13:49,120 AND THIRD PARTIES IS A MAJOR 2644 02:13:49,120 --> 02:13:50,280 RISK AND THAT'S ABOUT DATA 2645 02:13:50,280 --> 02:13:53,080 SECURITY AND HOW DO WE PREVENT 2646 02:13:53,080 --> 02:13:55,320 THIRD PARTIES FROM COMING IN AND 2647 02:13:55,320 --> 02:13:59,000 STEALING DATA AND HOLDING IT FOR 2648 02:13:59,000 --> 02:14:01,080 RANSOM OR DOING BAD THINGS WITH 2649 02:14:01,080 --> 02:14:09,680 THAT. 2650 02:14:09,680 --> 02:14:11,840 WE DON'T HAVE STRONG ENOUGH 2651 02:14:11,840 --> 02:14:13,120 PENALTIES FOR UNAUTHORIZED 2652 02:14:13,120 --> 02:14:14,920 ACCESS AND USE. 2653 02:14:14,920 --> 02:14:16,280 WE STARTED TO DEVELOP PENALTIES 2654 02:14:16,280 --> 02:14:19,680 FOR UNAUTHORIZED ACCESS FOR 2655 02:14:19,680 --> 02:14:20,440 CERTAIN HEALTH DATA HELD BY 2656 02:14:20,440 --> 02:14:22,520 CERTAIN ENTITIES. 2657 02:14:22,520 --> 02:14:25,040 IT'S NOT COMPREHENSIVE ENOUGH 2658 02:14:25,040 --> 02:14:26,680 BUT HAVE DONE LITTLE WITH REGARD 2659 02:14:26,680 --> 02:14:29,080 TO STRONG PENALTIES AT A 2660 02:14:29,080 --> 02:14:32,680 SOCIETAL LEVEL FOR UNAUTHORIZED 2661 02:14:32,680 --> 02:14:37,080 USE OF DATA INCLUDING BRAIN DATA 2662 02:14:37,080 --> 02:14:42,720 AND CAN DO MORE THERE. 2663 02:14:42,720 --> 02:14:44,280 AND I THINK IT'S DIFFICULT AND 2664 02:14:44,280 --> 02:14:48,000 REQUIRES MORE DISCUSSION, ONE IS 2665 02:14:48,000 --> 02:14:50,400 ACCESS TO RESEARCH DATA BY OTHER 2666 02:14:50,400 --> 02:14:51,880 GOVERNMENTAL AGENCIES LIKE 2667 02:14:51,880 --> 02:14:53,040 NATIONAL SECURITY, LAW 2668 02:14:53,040 --> 02:14:53,360 ENFORCEMENT. 2669 02:14:53,360 --> 02:14:54,680 WE CAN HAVE A WHOLE DISCUSSION. 2670 02:14:54,680 --> 02:14:59,680 THAT GETS COMPLICATED AND S 2671 02:14:59,680 --> 02:15:02,440 CERTIFICATES OF CONFIDENTIALITY 2672 02:15:02,440 --> 02:15:07,720 HELP BUT WHEN PUSH COMES TO 2673 02:15:07,720 --> 02:15:09,960 SHOVE IT MAY NOT HELP THAT MUCH 2674 02:15:09,960 --> 02:15:13,160 AND DATA GENERATED OUTSIDE THE 2675 02:15:13,160 --> 02:15:18,280 RESEARCH ENTERPRISE AND DIRECT 2676 02:15:18,280 --> 02:15:19,400 TO CONSUMER DATA THAT MAY HAVE 2677 02:15:19,400 --> 02:15:20,720 DIFFERENT RULES WE NEED TO THINK 2678 02:15:20,720 --> 02:15:21,320 MORE CAREFULLY ABOUT THAT AS 2679 02:15:21,320 --> 02:15:31,440 WELL. 2680 02:15:39,200 --> 02:15:41,800 I WANT TO HIGHLIGHT STUDIES 2681 02:15:41,800 --> 02:15:43,160 RELATED TO DATA SHARING AND KEY 2682 02:15:43,160 --> 02:15:45,160 FINDINGS THAT HAVE COME OUT OF 2683 02:15:45,160 --> 02:15:48,360 THOSE STUDIES. 2684 02:15:48,360 --> 02:15:50,080 ONE OF THE FIRST STUDIES STARTED 2685 02:15:50,080 --> 02:15:52,440 IN 2007 WHEN WE STARTED TO 2686 02:15:52,440 --> 02:15:55,000 BROADLY SHARE GENOMIC DATA AND 2687 02:15:55,000 --> 02:15:58,280 HIP WAS STARTING TO DEVELOP ITS 2688 02:15:58,280 --> 02:16:00,280 SYSTEM OF DB GAP AND DID A 2689 02:16:00,280 --> 02:16:01,120 RANDOMIZED CONTROL TRIAL OF 2690 02:16:01,120 --> 02:16:01,880 DIFFERENT CONSENT OPTIONS FOR 2691 02:16:01,880 --> 02:16:04,560 DATA SHARING. 2692 02:16:04,560 --> 02:16:06,880 WE ENROLLED INDIVIDUALS WHO WERE 2693 02:16:06,880 --> 02:16:08,320 PARTICIPATING IN GENOMIC STUDIES 2694 02:16:08,320 --> 02:16:09,360 WHERE THEIR DATA WAS GOING TO BE 2695 02:16:09,360 --> 02:16:19,520 SHARED. 2696 02:16:21,240 --> 02:16:23,640 THEY WERE WILLING TO SHARE OTHER 2697 02:16:23,640 --> 02:16:25,520 RESEARCH DATA BUT FELT CONSENT 2698 02:16:25,520 --> 02:16:26,400 SHOULD BE REQUIRED. 2699 02:16:26,400 --> 02:16:32,880 AT THE TIME IT WAS DEBATED AND 2700 02:16:32,880 --> 02:16:37,080 FELT IT SHOULD BE REQUIRED BUT 2701 02:16:37,080 --> 02:16:39,120 INTERESTINGLY PEOPLE FELT IT WAS 2702 02:16:39,120 --> 02:16:40,520 NECESSARY AS AN INDICATION OR 2703 02:16:40,520 --> 02:16:42,360 ACT OF RESPECT AND NOT SO MUCH 2704 02:16:42,360 --> 02:16:43,840 BECAUSE THEY WERE CONCERNED 2705 02:16:43,840 --> 02:16:45,920 ABOUT MAKING AN AUTONOMOUS 2706 02:16:45,920 --> 02:16:46,160 CHOICE. 2707 02:16:46,160 --> 02:16:49,080 THEY WERE ALL CHOOSING TO SHARE 2708 02:16:49,080 --> 02:16:50,960 THEIR DATA BECAUSE THEY WERE 2709 02:16:50,960 --> 02:16:51,840 HIGHLY MOTIVATED. 2710 02:16:51,840 --> 02:16:54,800 THEY WERE PATIENT WERE SICK AND 2711 02:16:54,800 --> 02:17:00,080 WANTED THE RESEARCH TO MOVE AS 2712 02:17:00,080 --> 02:17:03,080 QUICKLY AS POSSIBLE. 2713 02:17:03,080 --> 02:17:04,840 WHEN THEY WERE GIVEN THE 2714 02:17:04,840 --> 02:17:07,640 TRADE-OFF BETWEEN SHARING THEIR 2715 02:17:07,640 --> 02:17:11,080 DATA TO ADVANCE VERSUS 2716 02:17:11,080 --> 02:17:11,960 PROTECTING THEIR PRIVACY BY 2717 02:17:11,960 --> 02:17:14,120 SHARING DATA RESTRICTIVELY THEY 2718 02:17:14,120 --> 02:17:15,360 TENDED TO CHOOSE TO SHARE DATA 2719 02:17:15,360 --> 02:17:22,160 AS BROADLY AS POSSIBLE BECAUSE 2720 02:17:22,160 --> 02:17:29,280 THEIR DESIRE ON RESEARCH 2721 02:17:29,280 --> 02:17:32,440 OUTWEIGHED THE PRIVACY. 2722 02:17:32,440 --> 02:17:35,360 IF YOU ASK HOW BROADLY THE DATA 2723 02:17:35,360 --> 02:17:38,200 OUGHT TO BE SHARED THERE WAS A 2724 02:17:38,200 --> 02:17:41,080 GENERAL PREFERENCE FOR 2725 02:17:41,080 --> 02:17:42,720 RESTRICTIVE ACCESS. 2726 02:17:42,720 --> 02:17:44,080 PEOPLE WERE WILLING TO SHARE 2727 02:17:44,080 --> 02:17:45,960 THEIR DATA MORE OPENLY AND OPEN 2728 02:17:45,960 --> 02:17:47,520 ACCESS DATABASES IF IT WAS THE 2729 02:17:47,520 --> 02:17:55,800 ONLY CHOOSE GIVEN. 2730 02:17:55,800 --> 02:17:57,880 WE LOOKED AT DATA SHARING 2731 02:17:57,880 --> 02:18:00,680 CHALLENGES AND THE FIRST WAS 2732 02:18:00,680 --> 02:18:06,960 WHERE WE DID A MODIFIED PROCESS 2733 02:18:06,960 --> 02:18:09,080 ENGAGING MULTIDISCIPLINARY 2734 02:18:09,080 --> 02:18:10,280 STAKEHOLDERS INCLUDING PATIENT 2735 02:18:10,280 --> 02:18:13,080 REPRESENTS AND LOOKING AT THE 2736 02:18:13,080 --> 02:18:15,800 BIGGEST CHALLENGES TO THE 2737 02:18:15,800 --> 02:18:16,480 SEQUENCING TECHNOLOGIES. 2738 02:18:16,480 --> 02:18:21,840 NOT SPECIFICALLY ABOUT DATA 2739 02:18:21,840 --> 02:18:22,160 SHARING. 2740 02:18:22,160 --> 02:18:25,080 DATA SHARING WAS RANKED AS THE 2741 02:18:25,080 --> 02:18:27,040 MOST IMPORTANT POLICY CHALLENGE 2742 02:18:27,040 --> 02:18:32,400 THAT THE DELPHI PANEL NEEDED TO 2743 02:18:32,400 --> 02:18:42,960 BE ADDRESSED AND REIMBURSEMENT 2744 02:18:44,400 --> 02:18:45,240 AND OTHER ISSUES. 2745 02:18:45,240 --> 02:18:51,760 THEY RANKED DATA SHARING AS THE 2746 02:18:51,760 --> 02:18:53,080 LEAST FEASIBLE TO ADDRESS AND 2747 02:18:53,080 --> 02:19:01,080 HARDEST POLICY TO GET OUR HANDS 2748 02:19:01,080 --> 02:19:02,400 AROUND. 2749 02:19:02,400 --> 02:19:05,080 WE FOLLOWED UP WITH A STUDY 2750 02:19:05,080 --> 02:19:06,760 CALLED BUILDING THE MEDICAL 2751 02:19:06,760 --> 02:19:08,920 INFORMATION COMMONS AND HERE WE 2752 02:19:08,920 --> 02:19:14,280 LOOKED AT WHAT WOULD IT TAKE TO 2753 02:19:14,280 --> 02:19:19,920 SHARE IN A RESPONSIBLE AND 2754 02:19:19,920 --> 02:19:23,360 ETHICAL WAY. 2755 02:19:23,360 --> 02:19:25,320 THE TWO IMPORTANT FINDINGS WERE 2756 02:19:25,320 --> 02:19:27,280 DATA SHARING SHOULD BE DONE IN A 2757 02:19:27,280 --> 02:19:30,320 WAY THAT'S PARTICIPANTS CENTRIC 2758 02:19:30,320 --> 02:19:33,760 INCLUDING ENGAGING PATIENT 2759 02:19:33,760 --> 02:19:35,360 ADVOCATES IN THE PROCESS MAYBE 2760 02:19:35,360 --> 02:19:37,080 IN WAYS CHRISTINE SPOKE ABOUT 2761 02:19:37,080 --> 02:19:39,120 WITH REGARD TO GIVING THEM 2762 02:19:39,120 --> 02:19:41,640 AGENCY OVER INDIVIDUAL 2763 02:19:41,640 --> 02:19:45,120 DECISIONS, INTERESTING TRUSTED 2764 02:19:45,120 --> 02:19:46,840 INTERMEDIARIES AND 2765 02:19:46,840 --> 02:19:48,600 TRUSTWORTHINESS BECAME A KEY 2766 02:19:48,600 --> 02:19:49,440 POINT. 2767 02:19:49,440 --> 02:19:51,120 THIS NECESSITATED SERIOUS 2768 02:19:51,120 --> 02:19:53,440 ATTENTION TO BE PAID TO ISSUES 2769 02:19:53,440 --> 02:19:56,760 OF PRIVACY AS WELL AS SECURITY 2770 02:19:56,760 --> 02:19:57,880 TRANSPARENCY AND ACCOUNTABILITY 2771 02:19:57,880 --> 02:19:59,280 WHICH WERE THINGS I TALKED IN MY 2772 02:19:59,280 --> 02:20:00,680 FIRST SLIDE. 2773 02:20:00,680 --> 02:20:01,840 FINALLY, WE'RE FINISHING A 2774 02:20:01,840 --> 02:20:05,080 PROJECT WHERE WE'RE LOOKING AT 2775 02:20:05,080 --> 02:20:08,920 DATA SHARING WITH REGARD TO GENE 2776 02:20:08,920 --> 02:20:10,760 VARIANT DATA AND ANOTHER POLICY 2777 02:20:10,760 --> 02:20:15,920 AND LOOKING AT CHALLENGES 2778 02:20:15,920 --> 02:20:21,800 RELATED TO SHARING THESE TYPES 2779 02:20:21,800 --> 02:20:23,600 OF CHALLENGES AND CREATING THE 2780 02:20:23,600 --> 02:20:26,800 RIGHT INCENTIVES AND VALUES TO 2781 02:20:26,800 --> 02:20:28,360 ENCOURAGE RESEARCHERS TO SHARE 2782 02:20:28,360 --> 02:20:31,840 THEIR DATA, PROVIDING THE 2783 02:20:31,840 --> 02:20:36,520 APPROPRIATE LEVELS OF PRIVACY 2784 02:20:36,520 --> 02:20:39,960 AND SECURITY MAKING SURE WARE 2785 02:20:39,960 --> 02:20:44,760 BEING EQUITABLE AND THE DATA ARE 2786 02:20:44,760 --> 02:20:45,360 SUFFICIENTLY GOOD QUALITY 2787 02:20:45,360 --> 02:20:45,960 THEY'RE USEFUL TO THE RESEARCH 2788 02:20:45,960 --> 02:20:50,000 COMMUNITY. 2789 02:20:50,000 --> 02:20:53,080 TURNING TO BRAIN DATA 2790 02:20:53,080 --> 02:20:54,200 SPECIFICALLY, WE RECENTLY 2791 02:20:54,200 --> 02:20:57,120 FINISHED A GRANT THAT WAS 2792 02:20:57,120 --> 02:21:00,360 LOOKING SPECIFICALLY AT ETHICS 2793 02:21:00,360 --> 02:21:03,120 ISSUES RELATED TO DEEP BRAIN 2794 02:21:03,120 --> 02:21:04,400 STIMULATION OR ADAPTIVE DEEP 2795 02:21:04,400 --> 02:21:05,480 BRAIN STIMULATION AND LOOKING AT 2796 02:21:05,480 --> 02:21:07,880 A VARIETY OF ISSUES. 2797 02:21:07,880 --> 02:21:10,040 THIS IS ONE OF THE NEUROETHICS 2798 02:21:10,040 --> 02:21:13,080 GRANTS. 2799 02:21:13,080 --> 02:21:19,720 WE ASKED ABOUT DATA SHARING AND 2800 02:21:19,720 --> 02:21:20,360 SPOECH TO RESEARCHERS THROUGH 2801 02:21:20,360 --> 02:21:21,600 THE BRAIN INITIATIVE AND 2802 02:21:21,600 --> 02:21:23,200 INTERVIEWED 23 RESEARCHERS AND 2803 02:21:23,200 --> 02:21:24,600 WHEN WE ASKED ABOUT DATA SHARING 2804 02:21:24,600 --> 02:21:25,720 WE FOUND GREAT SUPPORT FOR DATA 2805 02:21:25,720 --> 02:21:29,080 SHARING AND COMMITMENT TO 2806 02:21:29,080 --> 02:21:31,240 SHARING DATA FROM THE DBS TRIALS 2807 02:21:31,240 --> 02:21:33,040 YET THERE WAS A LOT OF 2808 02:21:33,040 --> 02:21:34,640 HETEROGENEITY IN THE SHARING 2809 02:21:34,640 --> 02:21:36,280 PRACTICES. 2810 02:21:36,280 --> 02:21:37,080 NOT EVERYBODY WAS SHARING IN THE 2811 02:21:37,080 --> 02:21:41,600 SAME PLACES OR THE SAME WAY OR 2812 02:21:41,600 --> 02:21:43,200 THE SAME TYPES OF DATA AND THERE 2813 02:21:43,200 --> 02:21:45,480 WERE SEVERAL CONCERNS OR 2814 02:21:45,480 --> 02:21:49,080 BARRIERS WITH SHARING HUMAN 2815 02:21:49,080 --> 02:21:51,120 NEUROLOGICAL DATA AND ISSUES 2816 02:21:51,120 --> 02:21:52,640 WITH CONFIDENTIALITY AND 2817 02:21:52,640 --> 02:21:57,080 USABILITY, IS IT WORTH SHARING 2818 02:21:57,080 --> 02:21:59,960 THE DATA IS IT REALLY USABLE BY 2819 02:21:59,960 --> 02:22:01,080 OTHERS AND ISSUES OF OWNERSHIP 2820 02:22:01,080 --> 02:22:08,080 AND CONTROL AND RESOURCES AND 2821 02:22:08,080 --> 02:22:11,680 HOW MUCH TIME AND HUMAN RIVERSES 2822 02:22:11,680 --> 02:22:13,520 AND SHARING IT IN A WAY THAT 2823 02:22:13,520 --> 02:22:16,040 MAKES IT USABLE AND BENEFICIAL 2824 02:22:16,040 --> 02:22:18,720 AND WE SPOKE TO RESEARCH 2825 02:22:18,720 --> 02:22:24,240 PARTICIPANTS AND INTERVIEWED 2826 02:22:24,240 --> 02:22:26,960 PARTICIPANTS THAT HAD MENTAL 2827 02:22:26,960 --> 02:22:29,080 HEALTH AND MOVEMENT DISORDERS 2828 02:22:29,080 --> 02:22:31,200 AND A VARIETY OF THOSE AND WE 2829 02:22:31,200 --> 02:22:33,080 ASKED THEM IN OUR INVIEWS ABOUT 2830 02:22:33,080 --> 02:22:34,520 DETE SHARING AND THE WAY WE 2831 02:22:34,520 --> 02:22:36,600 FRAME THE QUESTION TENDED TO BE 2832 02:22:36,600 --> 02:22:37,800 SOMETHING SIMILAR TO THIS. 2833 02:22:37,800 --> 02:22:44,280 IT SAYS ADAPTIVE DEEP BRAIN ERS 2834 02:22:44,280 --> 02:22:45,920 MAY SHARE RESEARCH WITH OTHER 2835 02:22:45,920 --> 02:22:48,280 SCIENTISTS AND BEFORE SHARING 2836 02:22:48,280 --> 02:22:49,120 REMOVING NAME AND ADDRESS AND 2837 02:22:49,120 --> 02:22:55,520 HOW DO YOU FEEL ABOUT THAT? 2838 02:22:55,520 --> 02:22:59,360 WE SAW SUPPORT FOR RESEARCH 2839 02:22:59,360 --> 02:22:59,720 PARTICIPANTS. 2840 02:22:59,720 --> 02:23:01,280 ONE PERSON SAID THAN THAT'S 2841 02:23:01,280 --> 02:23:01,480 FINE. 2842 02:23:01,480 --> 02:23:04,600 YOU WOND WORRY IF YOU WERE 2843 02:23:04,600 --> 02:23:05,840 WORRIED ABOUT SHARING YOUR DATA 2844 02:23:05,840 --> 02:23:09,640 AND SOMEONE ELSE SAID I'M FOR 2845 02:23:09,640 --> 02:23:10,880 THAT BECAUSE I'M BIG INTO 2846 02:23:10,880 --> 02:23:11,880 HELPING OTHER AND IF IT BENEFITS 2847 02:23:11,880 --> 02:23:13,320 OTHERS AND ME, YES, I'M FINE 2848 02:23:13,320 --> 02:23:18,120 WITH THAT. 2849 02:23:18,120 --> 02:23:19,440 OTHERS SAID I DON'T BELIEVE 2850 02:23:19,440 --> 02:23:21,080 THOSE IN THE INSTITUTIONS 2851 02:23:21,080 --> 02:23:21,960 INVOLVED WOULD DO ANYTHING 2852 02:23:21,960 --> 02:23:26,520 NEFARIOUS WITH THE DATA. 2853 02:23:26,520 --> 02:23:27,520 NOTHING ELSE CONCERNS ME ABOUT 2854 02:23:27,520 --> 02:23:29,120 THEM STORING THE DATA OR 2855 02:23:29,120 --> 02:23:31,240 ANYTHING LIKE THAT. 2856 02:23:31,240 --> 02:23:32,960 SOMEBODY SAYS AS LONG AS IT'S 2857 02:23:32,960 --> 02:23:33,680 WITHIN THE SCIENTIFIC COMMUNITY 2858 02:23:33,680 --> 02:23:35,840 AND SECURITY, WHY NOT SHARE 2859 02:23:35,840 --> 02:23:36,800 INFORMATION AS LONG AS IT'S 2860 02:23:36,800 --> 02:23:38,080 CONFIDENTIAL I DON'T WANT MY 2861 02:23:38,080 --> 02:23:39,160 NAME SPREAD AROUND OR PERSONAL 2862 02:23:39,160 --> 02:23:47,440 INFORMATION. 2863 02:23:47,440 --> 02:23:49,120 THEY'RE SEEING THIS AS 2864 02:23:49,120 --> 02:23:53,120 CONFIDENTIAL OR EASILY 2865 02:23:53,120 --> 02:23:54,920 IDENTIFIABLE AND SEEING IT AS 2866 02:23:54,920 --> 02:23:56,960 SECURE BECAUSE IT'S WITHIN A 2867 02:23:56,960 --> 02:24:03,360 TRUSTED AND TRUSTWORTHY GROUP OF 2868 02:24:03,360 --> 02:24:04,560 RESEARCHERS. 2869 02:24:04,560 --> 02:24:05,960 I WANT TO TALK ABOUT THE BRAIN 2870 02:24:05,960 --> 02:24:09,120 SHARE STUDY AND IDENTIFY 2871 02:24:09,120 --> 02:24:09,840 CHALLENGES AND CONCERNS SPECIFIC 2872 02:24:09,840 --> 02:24:11,000 TO SHARING BRAIN DATA. 2873 02:24:11,000 --> 02:24:12,960 WE HAVE THREE AIMS. 2874 02:24:12,960 --> 02:24:17,000 THE FIRST IS TO EXAMPLE THE 2875 02:24:17,000 --> 02:24:18,320 POLICY AND PRACTICE AND IDENTIFY 2876 02:24:18,320 --> 02:24:20,240 CHALLENGES SHARING DATA WITHIN 2877 02:24:20,240 --> 02:24:22,880 BRAIN AND SECOND TO ASSESS 2878 02:24:22,880 --> 02:24:24,160 PARTICIPANTS ATTITUDES AND 2879 02:24:24,160 --> 02:24:25,080 PREFERENCES AND CONCERNS ABOUT 2880 02:24:25,080 --> 02:24:28,240 SHARING BRAIN DATA AND THIRD IS 2881 02:24:28,240 --> 02:24:30,920 DOING A MOTFIDE TO GENERATE 2882 02:24:30,920 --> 02:24:31,760 PRACTICE OPTION TO ADDRESS THE 2883 02:24:31,760 --> 02:24:35,160 HIGH PRIORITY CHALLENGES. 2884 02:24:35,160 --> 02:24:39,080 LET ME START WITH WHAT WE'VE 2885 02:24:39,080 --> 02:24:40,360 DONE WITH OUR DIVERSE 2886 02:24:40,360 --> 02:24:42,960 STAKEHOLDER GROUP. 2887 02:24:42,960 --> 02:24:47,960 THIS INVOLVED OUR AIM ONE 2888 02:24:47,960 --> 02:24:50,040 INTERVIEWS AND MODIFIED POLICY 2889 02:24:50,040 --> 02:24:50,280 DELPHI. 2890 02:24:50,280 --> 02:24:52,800 THE GROUPS OF INDIVIDUALS 2891 02:24:52,800 --> 02:24:53,120 ENGAGING. 2892 02:24:53,120 --> 02:24:54,640 WE'VE DONE 54 INDIVIDUAL 2893 02:24:54,640 --> 02:24:56,080 INTERVIEWS AND 31 INDIVIDUALS 2894 02:24:56,080 --> 02:24:59,360 PART OF OUR DELPHI PANEL AND 2895 02:24:59,360 --> 02:25:02,120 THEY CONSISTENT OF 2896 02:25:02,120 --> 02:25:03,320 INVESTIGATORS, PATIENT 2897 02:25:03,320 --> 02:25:05,800 ADVOCATES, DATA STEWARDS AND LAW 2898 02:25:05,800 --> 02:25:08,680 AND POLICY SCHOLARS. 2899 02:25:08,680 --> 02:25:13,120 WE'VE IDENTIFIED CHALLENGES TO 2900 02:25:13,120 --> 02:25:18,840 SHARING HUMAN BRAIN DATA AND WE 2901 02:25:18,840 --> 02:25:20,800 FINED THEM AND RANK THEM 2902 02:25:20,800 --> 02:25:22,520 ACCORDING TO HOW IMPORTANT THEY 2903 02:25:22,520 --> 02:25:27,160 ARE TO ADDRESS FROM A POLICY 2904 02:25:27,160 --> 02:25:28,880 PERSPECTIVE AND IT IS COSTLY TO 2905 02:25:28,880 --> 02:25:29,600 SHARE DATA. 2906 02:25:29,600 --> 02:25:31,280 THERE'S A LACK OF DATA STANDARDS 2907 02:25:31,280 --> 02:25:37,080 WITH REGARD TO MAKING SURE ALL 2908 02:25:37,080 --> 02:25:39,240 THE DATA BEING SHARED IS USABLE 2909 02:25:39,240 --> 02:25:41,360 AND SHARED IN THE SAME WAY AND 2910 02:25:41,360 --> 02:25:43,720 FORMAT TO BE USED EASILY. 2911 02:25:43,720 --> 02:25:45,120 THERE ARE LIMITED INCENTIVES FOR 2912 02:25:45,120 --> 02:25:50,480 SHARING DATA. 2913 02:25:50,480 --> 02:25:52,240 WE HEARD IT FEELS LIKE IT'S A 2914 02:25:52,240 --> 02:25:53,720 RULE SO YOU HAVE TO DO OUT BUT 2915 02:25:53,720 --> 02:25:56,400 WHAT'S THE INCENTIVE AND WHAT AM 2916 02:25:56,400 --> 02:25:58,400 I GETTING OUT OF IT WHY WOULD I 2917 02:25:58,400 --> 02:25:59,280 WANT TO DO THIS? 2918 02:25:59,280 --> 02:26:02,560 AND LIMITS WITH REGARD TO WHAT 2919 02:26:02,560 --> 02:26:03,320 PEOPLE CONSENT TO IN TERMS OF 2920 02:26:03,320 --> 02:26:09,120 YOUR ABILITY TO SHARE THE DATA. 2921 02:26:09,120 --> 02:26:11,080 WE ALSO ASKED OPINION QUESTIONS 2922 02:26:11,080 --> 02:26:13,120 OR PERSPECTIVE QUESTIONS ABOUT 2923 02:26:13,120 --> 02:26:15,800 DATA SHARING. 2924 02:26:15,800 --> 02:26:16,960 PUTTING A COUPLE UP HERE 2925 02:26:16,960 --> 02:26:17,560 RELEVANT AND IMPORTANT. 2926 02:26:17,560 --> 02:26:22,800 A THIRD YOU CAN SEE IN THE BLUE 2927 02:26:22,800 --> 02:26:24,600 A THIRD OF THE DELPHI PANELISTS 2928 02:26:24,600 --> 02:26:28,760 FELT IT WAS UNCLEAR IF THE 2929 02:26:28,760 --> 02:26:30,520 BENEFITS OF SHARING HUMAN BRAIN 2930 02:26:30,520 --> 02:26:31,560 DATA OUTWEIGH THE COSTS. 2931 02:26:31,560 --> 02:26:34,840 IT'S COSTLY AND NOT SURE IF THE 2932 02:26:34,840 --> 02:26:35,680 BENEFITS OUTWEIGH IT. 2933 02:26:35,680 --> 02:26:39,120 HALF THE PANELISTS FELT THEY 2934 02:26:39,120 --> 02:26:41,040 DISAGREED WITH THE STATEMENT 2935 02:26:41,040 --> 02:26:42,960 MEANING THE BENEFITS OUTWEIGHED 2936 02:26:42,960 --> 02:26:44,960 THE COST AND IF NIH SHOULD 2937 02:26:44,960 --> 02:26:46,640 PRIORITIZE FUNDING FOR CERTAIN 2938 02:26:46,640 --> 02:26:49,720 TYPES OF DATA IN THE HUMAN NEURO 2939 02:26:49,720 --> 02:26:51,960 SCIENCES OVER OTHER TYPES. 2940 02:26:51,960 --> 02:26:53,120 DECIDE WHICH DATA ARE MOST 2941 02:26:53,120 --> 02:26:54,240 IMPORTANT TO SHARE AND 2942 02:26:54,240 --> 02:26:58,560 PRIORITIZE THOSE IF WE'RE GOING 2943 02:26:58,560 --> 02:26:59,640 TO MAKE AN INVESTMENT. 2944 02:26:59,640 --> 02:27:01,520 OVER HALF SAID THERE SHOULD BE 2945 02:27:01,520 --> 02:27:04,560 PRIORITIZATION AND THE TYPES OF 2946 02:27:04,560 --> 02:27:08,440 DATA THEY THOUGHT SHOULD BE 2947 02:27:08,440 --> 02:27:10,880 PRIORITIZED HAD THE MOST REUSE 2948 02:27:10,880 --> 02:27:12,760 POTENTIAL AND THE DATA MOST 2949 02:27:12,760 --> 02:27:15,640 COMMONLY COLLECTED OR EASIEST TO 2950 02:27:15,640 --> 02:27:17,840 COMBINE AND STANDARDS CURRENTLY 2951 02:27:17,840 --> 02:27:20,480 AVAILABLE FOR THE DATA TYPES AND 2952 02:27:20,480 --> 02:27:24,240 OTHERS FELT, NO, WE SHOULD BE 2953 02:27:24,240 --> 02:27:26,240 SHARING AND PRIORITIZING THE 2954 02:27:26,240 --> 02:27:27,160 MOST DIFFICULT DATA TO 2955 02:27:27,160 --> 02:27:29,600 COLLECTION WHERE YOU HAVE TO DO 2956 02:27:29,600 --> 02:27:32,480 INFACIVE BRAIN SURGERY AND WE 2957 02:27:32,480 --> 02:27:34,400 SHOULD BE SHARING BECAUSE IT'S 2958 02:27:34,400 --> 02:27:37,680 SO HARD TO GENERATE THOSE DATA 2959 02:27:37,680 --> 02:27:42,960 MOST USEFUL AND OTHERS SAID WE 2960 02:27:42,960 --> 02:27:49,080 SHOULD FOCUS ON DATA CONFIDENTLY 2961 02:27:49,080 --> 02:27:50,600 DE-IDENTIFIED AND IF NIH SHOULD 2962 02:27:50,600 --> 02:27:51,560 PRIORITIZE DATA SHARING 2963 02:27:51,560 --> 02:27:53,520 INCLUDING REPLICATION AND REUSE 2964 02:27:53,520 --> 02:27:55,640 FOR BRAIN INITIATIVE EVEN IF IT 2965 02:27:55,640 --> 02:27:56,680 MEANS LESS FUNDING WILL BE 2966 02:27:56,680 --> 02:27:57,880 AVAILABLE FOR RESEARCH THAT 2967 02:27:57,880 --> 02:28:02,320 GENERATES NEW DATA AND YOU CAN 2968 02:28:02,320 --> 02:28:05,280 SEE HERE THE MAJORITY OF 2969 02:28:05,280 --> 02:28:07,080 INDIVIDUALS, 74% FELT WE SHOULD 2970 02:28:07,080 --> 02:28:08,800 PRIORITIZE FROM A FUNDING 2971 02:28:08,800 --> 02:28:10,600 PERSPECTIVE, DATA AND REUSE EVEN 2972 02:28:10,600 --> 02:28:15,200 IF IT MEANS LESS MONEY FOR 2973 02:28:15,200 --> 02:28:18,120 GENERATING NEW DATA. 2974 02:28:18,120 --> 02:28:20,080 YOU WANT TO TALK TO THE 2975 02:28:20,080 --> 02:28:21,360 INTERVIEWS WITH RESEARCH 2976 02:28:21,360 --> 02:28:24,640 PARTICIPANTS IN BRAIN INITIATIVE 2977 02:28:24,640 --> 02:28:24,880 STUDIES. 2978 02:28:24,880 --> 02:28:27,200 WE STARTED BY INTERVIEWING 2979 02:28:27,200 --> 02:28:30,360 INDIVIDUALS IN UHE STUDIES AND 2980 02:28:30,360 --> 02:28:31,920 HAVE INTERVIEWED EIGHT 2981 02:28:31,920 --> 02:28:32,560 INTERVIEWS, THEY'RE PRELIMINARY 2982 02:28:32,560 --> 02:28:34,480 AND WE'RE USING IT TO DEVELOP A 2983 02:28:34,480 --> 02:28:37,560 SURVEY WE WILL ADMINISTER WITH A 2984 02:28:37,560 --> 02:28:40,440 MUCH LARGER NUMBER OF 2985 02:28:40,440 --> 02:28:40,800 PARTICIPANTS. 2986 02:28:40,800 --> 02:28:42,200 THESE INDIVIDUALS HAVE A VARIETY 2987 02:28:42,200 --> 02:28:44,640 OF CONDITIONS ACROSS THE BRAIN 2988 02:28:44,640 --> 02:28:47,000 INITIATIVE, BLINDNESS, LOSS OF 2989 02:28:47,000 --> 02:28:49,080 LOWER LIMB FUNCTION, OCD AND 2990 02:28:49,080 --> 02:28:50,840 DEPRESSION, PARKINSON'S DISEASE 2991 02:28:50,840 --> 02:28:51,600 AND TREATMENT-RESISTANT 2992 02:28:51,600 --> 02:29:01,800 DEPRESSION. 2993 02:29:06,560 --> 02:29:09,080 THE PARTICIPANTS HAVE 2994 02:29:09,080 --> 02:29:10,440 INTRACTABLE DISEASES AND THEY'RE 2995 02:29:10,440 --> 02:29:15,400 CONTENTING ALREADY TO INVASIVE 2996 02:29:15,400 --> 02:29:16,840 TREATMENTS AND HIGHLIGHT 2997 02:29:16,840 --> 02:29:17,480 MOTIVATED TO ADVANCE RESEARCH. 2998 02:29:17,480 --> 02:29:19,520 THEY FEEL STRONGLY ABOUT MAKING 2999 02:29:19,520 --> 02:29:22,280 THEIR DATA AS USEFUL AS POSSIBLE 3000 02:29:22,280 --> 02:29:24,080 AND PEOPLE NOT IN THE 3001 02:29:24,080 --> 02:29:25,000 CIRCUMSTANCES MAY FEEL 3002 02:29:25,000 --> 02:29:26,600 DIFFERENTLY ABOUT HAVING THEIR 3003 02:29:26,600 --> 02:29:27,120 DATA SHARED. 3004 02:29:27,120 --> 02:29:28,600 PEOPLE SAID THINGS LIKE IF IT'S 3005 02:29:28,600 --> 02:29:30,960 GOING TO A GOOD CAUSE AND PEOPLE 3006 02:29:30,960 --> 02:29:32,080 ARE GETTING HEALTHIER AND BETTER 3007 02:29:32,080 --> 02:29:35,520 I'M ALL FOR IT EVEN IF IT WASN'T 3008 02:29:35,520 --> 02:29:37,120 ANONYMOUS BECAUSE IF THE EFFORT 3009 02:29:37,120 --> 02:29:37,880 OF FURTHERING SCIENTIFIC STUDY 3010 02:29:37,880 --> 02:29:41,080 OF THE BRAIN IT'S IMPORTANT TO 3011 02:29:41,080 --> 02:29:41,880 SHARE DATA. 3012 02:29:41,880 --> 02:29:43,480 FINALLY A PERSON SAID I EXPECT 3013 02:29:43,480 --> 02:29:44,640 DATA SHARING TO OCCUR. 3014 02:29:44,640 --> 02:29:47,280 THE RESEARCH ACTIVITIES GO ON 3015 02:29:47,280 --> 02:29:48,800 ALL OVER AND IT SEEMS LIKE A 3016 02:29:48,800 --> 02:29:50,920 WASTE OF EFFORT IF THEY 3017 02:29:50,920 --> 02:29:51,520 DUPLICATED OR WORKING IN THE 3018 02:29:51,520 --> 02:29:57,880 DARK. 3019 02:29:57,880 --> 02:29:59,280 THEY SAW THAT AS ESSENTIAL TO 3020 02:29:59,280 --> 02:30:00,480 THIS TYPE OF RESEARCH. 3021 02:30:00,480 --> 02:30:02,320 THOUGH THERE WAS GENERAL SUPPORT 3022 02:30:02,320 --> 02:30:04,520 SOME HAD CONCERNS AND I CALL 3023 02:30:04,520 --> 02:30:05,520 THEM COMMON CONCERNS BECAUSE 3024 02:30:05,520 --> 02:30:06,880 THEY'RE CONCERNS I THINK HAVE 3025 02:30:06,880 --> 02:30:12,360 BEEN BROUGHT UP IN MANY AREAS OF 3026 02:30:12,360 --> 02:30:15,800 RESEARCH RELATED TO DATA 3027 02:30:15,800 --> 02:30:16,120 SHARING. 3028 02:30:16,120 --> 02:30:17,440 SOMEBODY SAID IF THIS PERSON 3029 02:30:17,440 --> 02:30:18,920 WENT THROUGH ALL THIS SUFFERING 3030 02:30:18,920 --> 02:30:20,440 AND THAT INFORMATION GOES TO 3031 02:30:20,440 --> 02:30:22,040 SOMEBODY AND THEY MAKE A HUGE 3032 02:30:22,040 --> 02:30:23,880 PROFIT IT'S UNETHICAL FOR THAT 3033 02:30:23,880 --> 02:30:24,200 TO HAPPEN. 3034 02:30:24,200 --> 02:30:28,840 CHRISTINE BROUGHT THIS UP. 3035 02:30:28,840 --> 02:30:30,560 SOME PATIENTS ARE STRUGGLING AND 3036 02:30:30,560 --> 02:30:31,880 WANT BENEFIT IN SHARING OR WANT 3037 02:30:31,880 --> 02:30:33,160 SOMEBODY ELSE NOT TO BE MAKING A 3038 02:30:33,160 --> 02:30:34,080 LOT OF MONEY TO BE USED FOR THE 3039 02:30:34,080 --> 02:30:39,560 COMMON GOOD. 3040 02:30:39,560 --> 02:30:41,120 THERE WERE CONCERNS ABOUT 3041 02:30:41,120 --> 02:30:41,920 POTENTIAL DISCRIMINATION AND 3042 02:30:41,920 --> 02:30:45,160 USED INAPPROPRIATELY TO DENY 3043 02:30:45,160 --> 02:30:49,120 INSURANCE AND CONCERNS ABOUT 3044 02:30:49,120 --> 02:30:49,680 AUTONOMOUS CHOICE. 3045 02:30:49,680 --> 02:30:51,160 ONE PERSON SAID YOU SHOULDN'T BE 3046 02:30:51,160 --> 02:30:52,400 FORCED TO SHARE YOUR DATA TO 3047 02:30:52,400 --> 02:30:52,800 HAVE THE SURGERY. 3048 02:30:52,800 --> 02:30:54,960 IF YOU WANT THE SURGERY, YOU 3049 02:30:54,960 --> 02:30:57,160 SHOULD HAVE AN ADDITIONAL OPTION 3050 02:30:57,160 --> 02:31:01,120 WHETHER YOU WANT TO SHARE IT OR 3051 02:31:01,120 --> 02:31:02,600 NOT. 3052 02:31:02,600 --> 02:31:04,560 WE ASKED WHETHER THERE SHOULD BE 3053 02:31:04,560 --> 02:31:10,440 LIMITATIONS ON USE AND TIES INTO 3054 02:31:10,440 --> 02:31:14,680 YESTERDAY WITH REGARD TO 3055 02:31:14,680 --> 02:31:16,280 INFERENCES MADE AND SHOULD 3056 02:31:16,280 --> 02:31:17,960 RESEARCHERS BE PROHIBITED FROM 3057 02:31:17,960 --> 02:31:19,240 USING DATA TO BETTER UNDERSTAND 3058 02:31:19,240 --> 02:31:24,760 A PERSON'S THOUGHTS AND 3059 02:31:24,760 --> 02:31:25,880 INTENTIONS WHETHER THEY'RE 3060 02:31:25,880 --> 02:31:27,720 TELLING THE TRUTH AND MOST WERE 3061 02:31:27,720 --> 02:31:30,360 OKAY WITH THE DATA BE USED IN 3062 02:31:30,360 --> 02:31:31,480 ANY OF THESE WAYS. 3063 02:31:31,480 --> 02:31:33,280 SOMEBODY SAID I KNOW MY DATA WAS 3064 02:31:33,280 --> 02:31:36,080 USED FOR MY THOUGHTS AND 3065 02:31:36,080 --> 02:31:36,400 INTENTIONS. 3066 02:31:36,400 --> 02:31:38,160 THIS WAS SOMEBODY WHO I THINK 3067 02:31:38,160 --> 02:31:40,000 HAD DEPRESSION AND SAYING 3068 02:31:40,000 --> 02:31:41,120 THEY'RE ALREADY LOOKING AT THIS 3069 02:31:41,120 --> 02:31:43,320 AND TRYING TO FIGURE OUT IF I'M 3070 02:31:43,320 --> 02:31:48,440 IN A DEPRESSIVE STATE AND I HAVE 3071 02:31:48,440 --> 02:31:49,480 TRUST IN THE INSTITUTIONS 3072 02:31:49,480 --> 02:31:50,880 INVOLVED. 3073 02:31:50,880 --> 02:31:52,760 SOMEBODY ELSE SAID PSYCHOLOGISTS 3074 02:31:52,760 --> 02:31:53,760 ARE ALREADY TRYING TO UNDERSTAND 3075 02:31:53,760 --> 02:31:55,760 THE HUMAN MIND AND THOUGHTS AND 3076 02:31:55,760 --> 02:31:57,920 WHY A PERSON FEELS THE WAY A 3077 02:31:57,920 --> 02:31:58,880 PERSON FEELS. 3078 02:31:58,880 --> 02:32:00,400 THEY'VE BEEN DOING THAT SINCE 3079 02:32:00,400 --> 02:32:02,120 THE BEGINNING OF PSYCHIATRY, AS 3080 02:32:02,120 --> 02:32:04,360 LONG AS THEY DON'T ABUSE THEIR 3081 02:32:04,360 --> 02:32:07,920 POWER AND SOMEBODY SAID I THINK 3082 02:32:07,920 --> 02:32:09,680 THERE'S CONCERN IT'D BE USED FOR 3083 02:32:09,680 --> 02:32:12,720 WHAT IT WAS INTENDED FOR SO AS 3084 02:32:12,720 --> 02:32:14,720 LONG AS YOU AGREE AND SIGNED OFF 3085 02:32:14,720 --> 02:32:17,120 THEY'RE FINE BUT WANT TO MAKE 3086 02:32:17,120 --> 02:32:21,120 SURE IT'S NOT USED BEYOND THE 3087 02:32:21,120 --> 02:32:24,800 INITIAL INTENT OF THE CONSENT. 3088 02:32:24,800 --> 02:32:26,680 WE ASKED THEM WHETHER THEY FELT 3089 02:32:26,680 --> 02:32:30,640 BRAIN DATA WAS DIFFERENT FROM 3090 02:32:30,640 --> 02:32:32,320 OTHER TYPES OF INFORMATION AND 3091 02:32:32,320 --> 02:32:33,360 HOW THEY FELT IN SHARING IT 3092 02:32:33,360 --> 02:32:35,280 COMPARED TO OTHER TYPES OF 3093 02:32:35,280 --> 02:32:35,600 INFORMATION. 3094 02:32:35,600 --> 02:32:38,480 I WAS EXPECTING PARTICIPANTS TO 3095 02:32:38,480 --> 02:32:40,720 SAY YEAH, YOUR BRAIN DATA IS SO 3096 02:32:40,720 --> 02:32:42,640 MUCH MORE SENSITIVE, IT TELLS 3097 02:32:42,640 --> 02:32:44,080 YOU WHO YOU ARE, IT'S THE 3098 02:32:44,080 --> 02:32:47,280 ESSENCE OF YOU AND WE HEARD THE 3099 02:32:47,280 --> 02:32:47,560 OPPOSITE. 3100 02:32:47,560 --> 02:32:49,720 WE ASKED THEM ABOUT HOW DO YOU 3101 02:32:49,720 --> 02:32:53,320 FEEL ABOUT SHARING BRAIN DATA 3102 02:32:53,320 --> 02:32:53,880 VERSUS OTHER INFORMATION 3103 02:32:53,880 --> 02:32:59,800 SUBSTANCE USE HISTORY, LIST OF 3104 02:32:59,800 --> 02:33:02,720 MEDICATIONS, SEXUAL HISTORY, AND 3105 02:33:02,720 --> 02:33:05,120 FOR SOME REASONS THE OTHER 3106 02:33:05,120 --> 02:33:06,800 PIECES OF THE PUZZLE SEEM MORE 3107 02:33:06,800 --> 02:33:08,480 PERSONAL AND BROUGHT IN MORE 3108 02:33:08,480 --> 02:33:08,720 EMOTION. 3109 02:33:08,720 --> 02:33:11,240 WHEN YOU ARE TALKING ABOUT 3110 02:33:11,240 --> 02:33:13,080 SUBSTANCE USE AND SEXUAL HISTORY 3111 02:33:13,080 --> 02:33:14,680 OR OTHER HISTORY THAT FELT MORE 3112 02:33:14,680 --> 02:33:15,240 SENSITIVE AND PERSONAL THAN 3113 02:33:15,240 --> 02:33:20,320 BRAIN DATA. 3114 02:33:20,320 --> 02:33:22,640 WHEN WE ASKED ABOUT INTERNET 3115 02:33:22,640 --> 02:33:24,120 SEARCH HISTORY AND POLITICAL 3116 02:33:24,120 --> 02:33:25,120 AFFILIATION, SEXUAL ORIENTATION, 3117 02:33:25,120 --> 02:33:26,960 THEY SAID IF SOMEONE'S GOING TO 3118 02:33:26,960 --> 02:33:29,840 LOOK AT ALL MY INFORMATION AND 3119 02:33:29,840 --> 02:33:30,960 WEBSITE DATA AND EVERYTHING I'D 3120 02:33:30,960 --> 02:33:32,160 SAY THAT'S NONE OF YOUR DAMN 3121 02:33:32,160 --> 02:33:33,160 BUSINESS BUT WERE FINE WITH THEM 3122 02:33:33,160 --> 02:33:37,120 LOOKING AT THEIR BRAIN DATA. 3123 02:33:37,120 --> 02:33:37,800 I THINK THAT'S QUITE INTERESTING 3124 02:33:37,800 --> 02:33:44,240 AND IMPORTANT TO KEEP IN MIND. 3125 02:33:44,240 --> 02:33:47,000 WE'RE CONTINUING TO DO 3126 02:33:47,000 --> 02:33:47,720 INTERVIEWS WITH RESEARCH 3127 02:33:47,720 --> 02:33:50,280 PARTICIPANTS AND WILL BE USING 3128 02:33:50,280 --> 02:33:52,040 THAT TO INFORM A SURVEY WITH 3129 02:33:52,040 --> 02:33:53,800 SCALING EXERPT IN IT THAT WILL 3130 02:33:53,800 --> 02:33:59,160 TRY TO ASSESS THE PRACTICES MOST 3131 02:33:59,160 --> 02:34:02,160 IMPORTANT TO PARTICIPANTS WHEN 3132 02:34:02,160 --> 02:34:09,120 THEY THINK HOW THEIR BRAIN DATA 3133 02:34:09,120 --> 02:34:16,600 IS USED. 3134 02:34:16,600 --> 02:34:18,240 IF YOU'RE CONDUCTING A STUDY 3135 02:34:18,240 --> 02:34:19,320 BECAUSE YOU'RE COLLECTING AND 3136 02:34:19,320 --> 02:34:20,400 SHARING BRAIN DATA WE'D LIKE TO 3137 02:34:20,400 --> 02:34:22,160 HEAR FROM YOU BECAUSE WE'D LIKE 3138 02:34:22,160 --> 02:34:24,120 AS MANY RESPONDENTS AS POSSIBLE. 3139 02:34:24,120 --> 02:34:25,240 I'LL END WITH FINAL THOUGHTS. 3140 02:34:25,240 --> 02:34:29,280 IT THE WHOLE DISCUSSION IS MUCH 3141 02:34:29,280 --> 02:34:32,840 MORE ABOUT TRUST AND 3142 02:34:32,840 --> 02:34:37,120 TRUSTWORTHINESS AND RESPECT FOR 3143 02:34:37,120 --> 02:34:40,360 RESEARCH PARTICIPANTS AND ABOUT 3144 02:34:40,360 --> 02:34:41,920 AUTONOMY AND I CAUTION AGAINST 3145 02:34:41,920 --> 02:34:44,840 PUTTING TOO MUCH WEIGHT ON 3146 02:34:44,840 --> 02:34:48,320 CONSENT AND CAN'T BEAR THE 3147 02:34:48,320 --> 02:34:50,920 WEIGHT OF RESPECTING 3148 02:34:50,920 --> 02:34:51,920 PARTICIPANTS AND RESPECTING 3149 02:34:51,920 --> 02:34:54,240 THEIR PRIVACY AND BASED ON OUR 3150 02:34:54,240 --> 02:34:56,160 CONVERSATION EARLIER JUST 3151 02:34:56,160 --> 02:35:00,880 BECAUSE WE CAN RE-IDENTIFY FOR 3152 02:35:00,880 --> 02:35:02,400 MAKE INFERENCES DOESN'T MEAN WE 3153 02:35:02,400 --> 02:35:04,080 SHOULD BE DOING THAT AND WE 3154 02:35:04,080 --> 02:35:05,920 SHOULD PUT RULES IN PLACE TO 3155 02:35:05,920 --> 02:35:07,880 PREVENT THE BEHAVIORS AND 3156 02:35:07,880 --> 02:35:11,240 FOCUSES MORE ON PUNISHING BAD 3157 02:35:11,240 --> 02:35:12,520 ACTORS THAN RESTRICTING DATA 3158 02:35:12,520 --> 02:35:21,120 ACCESS AND LIMITING OUR ABILITY 3159 02:35:21,120 --> 02:35:29,040 TO DATA SHARE AND I'LL 3160 02:35:29,040 --> 02:35:29,960 ACKNOWLEDGE OUR FUNDERS AND 3161 02:35:29,960 --> 02:35:33,240 COLLABORATORS AND OPEN IT FOR 3162 02:35:33,240 --> 02:35:41,600 QUESTIONS. 3163 02:35:41,600 --> 02:35:43,720 >>ONE QUESTION FOR AMY AND THEN 3164 02:35:43,720 --> 02:35:46,080 OPEN IT UP TO THE PANEL. 3165 02:35:46,080 --> 02:35:49,560 >>IN LIGHT OF THE EMPIRICAL 3166 02:35:49,560 --> 02:35:51,600 INSIGHTS AROUND CONSENT, HOW 3167 02:35:51,600 --> 02:35:55,960 MIGHT WE THINK OF CONCEPT FOR 3168 02:35:55,960 --> 02:35:58,720 DATA SHARING AS SUCCINCT THE FOR 3169 02:35:58,720 --> 02:36:04,680 DATA SHARING AND SHOULD THEY BE 3170 02:36:04,680 --> 02:36:13,920 INTERTWINED OR SHOULD WE BE SOME 3171 02:36:13,920 --> 02:36:15,480 PURPOSES ARE TO CREATE A 3172 02:36:15,480 --> 02:36:15,920 COMMUNITY RESOURCE. 3173 02:36:15,920 --> 02:36:21,120 THE PURPOSE OF THE STUDY IS TO 3174 02:36:21,120 --> 02:36:23,080 CREATE THE PANGINE PROJECT THE 3175 02:36:23,080 --> 02:36:24,320 PURPOSE IS TO CREATE A COMMUNITY 3176 02:36:24,320 --> 02:36:25,600 RESOURCE THAT REQUIRES DATA 3177 02:36:25,600 --> 02:36:25,840 SHARING. 3178 02:36:25,840 --> 02:36:28,040 IF THAT'S THE PRIMARY PURPOSE OF 3179 02:36:28,040 --> 02:36:30,160 THE STUDY THEN DATA SHARING 3180 02:36:30,160 --> 02:36:35,440 SHOULD BE A CONDITION OF 3181 02:36:35,440 --> 02:36:35,800 PARTICIPATION. 3182 02:36:35,800 --> 02:36:42,520 IF DATA SHARING IS AN ADDED 3183 02:36:42,520 --> 02:36:45,120 BENEFIT THERE SHOULD BE SEPARATE 3184 02:36:45,120 --> 02:36:47,200 CONSENT PROCESSES POTENTIALLY IF 3185 02:36:47,200 --> 02:36:48,320 THERE'S CLINICAL BENEFIT FOR THE 3186 02:36:48,320 --> 02:36:50,040 PATIENT FOR THE RESEARCH. 3187 02:36:50,040 --> 02:36:53,760 IF AS THE A RESEARCH STUDY THAT 3188 02:36:53,760 --> 02:36:54,360 INVOLVES POTENTIAL THERAPEUTIC 3189 02:36:54,360 --> 02:36:56,400 INTERVENTION THEN I THINK WE 3190 02:36:56,400 --> 02:36:57,320 NEED TO BE CAREFUL ABOUT TYING 3191 02:36:57,320 --> 02:37:07,680 DATA SHARING TO THAT. 3192 02:37:17,000 --> 02:37:22,920 >>WE HAVE A NUMBER OF 3193 02:37:22,920 --> 02:37:23,200 QUESTIONS. 3194 02:37:23,200 --> 02:37:33,080 WELL PRIORITIZE OUR MEMBERS. 3195 02:37:33,080 --> 02:37:35,000 JIM AND SYD. 3196 02:37:35,000 --> 02:37:39,720 >>THANK YOU TO THE EXCELLENT 3197 02:37:39,720 --> 02:37:40,800 SPEAKERS. 3198 02:37:40,800 --> 02:37:41,840 I AGREE WITH THE LAST COMMENT 3199 02:37:41,840 --> 02:37:46,400 ABOUT CONSENT NOT CARRYING ALL 3200 02:37:46,400 --> 02:37:49,080 THE WAY BUT IT'S STILL PART OF 3201 02:37:49,080 --> 02:37:50,600 THE PROTECTIONS WE MIGHT APPLY 3202 02:37:50,600 --> 02:37:51,800 WHEN WE THINK OF DATA SHARING. 3203 02:37:51,800 --> 02:37:56,880 I'M WONDERING IN TERMS OF THERE 3204 02:37:56,880 --> 02:38:00,240 ARE SOME DATA TO SUGGEST HOW 3205 02:38:00,240 --> 02:38:03,040 MUCH WE SAY WHAT WE SAY ON WHAT 3206 02:38:03,040 --> 02:38:04,960 COULD BE DONE WITH DATA AS PART 3207 02:38:04,960 --> 02:38:06,560 OF CONSENT MAY INFLUENCE WHETHER 3208 02:38:06,560 --> 02:38:08,680 PEOPLE ARE MORE OR LESS INCLINED 3209 02:38:08,680 --> 02:38:09,440 TO SHARE DATA. 3210 02:38:09,440 --> 02:38:11,880 DO WE GIVE EXAMPLES IN THE TYPES 3211 02:38:11,880 --> 02:38:15,360 OF WAYS IT COULD BE MISUSED OR 3212 02:38:15,360 --> 02:38:15,560 NOT? 3213 02:38:15,560 --> 02:38:18,480 HOW SPECIFIC ARE WE ABOUT THE 3214 02:38:18,480 --> 02:38:24,840 ACTORS THAT CAN ACCESS DATA IF 3215 02:38:24,840 --> 02:38:28,520 IT'S OPENLY SHARED? 3216 02:38:28,520 --> 02:38:31,480 TO WHICH EXTENT ARE THEY 3217 02:38:31,480 --> 02:38:34,280 INFORMED ABOUT THE INSTANTS THAT 3218 02:38:34,280 --> 02:38:38,280 CAN BE INFORMED AND HOW COULD WE 3219 02:38:38,280 --> 02:38:39,200 DO A BETTER JOB OF INFORMED 3220 02:38:39,200 --> 02:38:45,760 CONSENT? 3221 02:38:45,760 --> 02:38:48,040 >>I'M CURIOUS IF NATHAN OR 3222 02:38:48,040 --> 02:38:49,080 CHRISTINE HAD THOUGHTS ON AS 3223 02:38:49,080 --> 02:38:54,280 SOMEBODY WHO PARTICIPATED IN 3224 02:38:54,280 --> 02:39:04,800 THESE HOW WELL YOU'RE INFORMED? 3225 02:39:14,760 --> 02:39:17,400 >>I DON'T RECALL ANYTHING 3226 02:39:17,400 --> 02:39:21,080 DIRECTLY ABOUT THAT BEING IN 3227 02:39:21,080 --> 02:39:25,080 THERE. 3228 02:39:25,080 --> 02:39:26,680 >>THE PARTICIPANTS TENDED TO 3229 02:39:26,680 --> 02:39:29,320 REMEMBER A DISCUSSION ABOUT DATA 3230 02:39:29,320 --> 02:39:29,560 SHARING. 3231 02:39:29,560 --> 02:39:39,160 THEY KIND OF REMEMBERED TALKING 3232 02:39:39,160 --> 02:39:49,360 ABOUT IT. 3233 02:39:50,520 --> 02:39:53,400 IT'S HARD WITHOUT OVER 3234 02:39:53,400 --> 02:39:57,080 EXAGGERATING THE POTENTIAL 3235 02:39:57,080 --> 02:40:00,720 CONCERNS AND EVERYBODY'S 3236 02:40:00,720 --> 02:40:01,000 DIFFERENT. 3237 02:40:01,000 --> 02:40:02,320 SOME HAVE WILD THOUGHTS ABOUT 3238 02:40:02,320 --> 02:40:07,840 WHAT CAN BE DONE WITH DATA AND 3239 02:40:07,840 --> 02:40:09,520 IT'S GOING TO BE USED FOR THIS, 3240 02:40:09,520 --> 02:40:11,240 THAT AND THE OTHER AND ARE GOING 3241 02:40:11,240 --> 02:40:15,200 THROUGH THE EXTREME OF BAD 3242 02:40:15,200 --> 02:40:17,440 THINGS CAN HAPPEN AND SOME LOOK 3243 02:40:17,440 --> 02:40:19,440 LIKE WAVES TO ME. 3244 02:40:19,440 --> 02:40:22,520 THEY CAN'T DO ANYTHING WITH 3245 02:40:22,520 --> 02:40:22,720 THAT. 3246 02:40:22,720 --> 02:40:27,640 THERE'S A BALANCE THAT NEEDS TO 3247 02:40:27,640 --> 02:40:31,880 BE STRUCK BETWEEN HOW YOU 3248 02:40:31,880 --> 02:40:33,240 EDUCATE PEOPLE AND THE RISKS 3249 02:40:33,240 --> 02:40:37,120 TODAY WILL BE DIFFERENT FROM 3250 02:40:37,120 --> 02:40:43,120 RISKS IN 10 YEARS. 3251 02:40:43,120 --> 02:40:45,880 WE HAVE LITTLE INSIGHT AND WHAT 3252 02:40:45,880 --> 02:40:47,840 PEOPLE CONSENT TO IS 3253 02:40:47,840 --> 02:40:48,360 UNCERTAINTY. 3254 02:40:48,360 --> 02:40:51,200 I ALWAYS THOUGHT OF THE CONSENT 3255 02:40:51,200 --> 02:40:54,920 PROCESS AS SAYING WE DON'T KNOW 3256 02:40:54,920 --> 02:40:58,040 WHAT CAN HAPPEN AND TRY TO 3257 02:40:58,040 --> 02:40:58,680 PROTECT IT AS MUCH AS POSSIBLE 3258 02:40:58,680 --> 02:41:01,640 BUT CONSENTING TO A DEGREE OF 3259 02:41:01,640 --> 02:41:07,240 UNCERTAINTY WITH REGARD TO YOUR 3260 02:41:07,240 --> 02:41:09,680 DATA SECURITY AND ARE YOU OKAY 3261 02:41:09,680 --> 02:41:11,120 WITH THAT AND I THINK PEOPLE CAN 3262 02:41:11,120 --> 02:41:14,040 CONSENT TO THAT IF THEY KNOW 3263 02:41:14,040 --> 02:41:22,160 WHAT'S THEY'RE CONSENTING TO. 3264 02:41:22,160 --> 02:41:25,440 >>IT DEPENDS ON THE STUDY AND I 3265 02:41:25,440 --> 02:41:27,200 MAY HAVE GOTTEN MORE INSTRUCTION 3266 02:41:27,200 --> 02:41:29,080 THAN FOR SOMETHING THAT'S A 3267 02:41:29,080 --> 02:41:30,320 GENETIC STUDY AND DEPENDS ON THE 3268 02:41:30,320 --> 02:41:37,080 P.I. IN CHARGE OF THE STUDY AND 3269 02:41:37,080 --> 02:41:41,040 FOR THE MOST PART I DO NOT GET 3270 02:41:41,040 --> 02:41:42,600 AS MUCH AS INFORMATION AS I 3271 02:41:42,600 --> 02:41:47,720 THINK I SHOULD WITH THE CERTAIN 3272 02:41:47,720 --> 02:41:48,680 RIS 3273 02:41:48,680 --> 02:41:51,160 RIS 3274 02:41:51,160 --> 02:41:58,080 RISKS AS WE PUT IMPLANTABLE 3275 02:41:58,080 --> 02:42:06,080 DEVICES I WOULD THINK BLUETOOTH 3276 02:42:06,080 --> 02:42:07,920 WAS A NEW TECHNOLOGY AND I 3277 02:42:07,920 --> 02:42:09,120 REALIZED I PROBABLY WASN'T AS 3278 02:42:09,120 --> 02:42:16,080 EXCITED ABOUT IT. 3279 02:42:16,080 --> 02:42:17,120 WE NEED EDUCATION AROUND 3280 02:42:17,120 --> 02:42:21,120 RESEARCH AND STUDIES. 3281 02:42:21,120 --> 02:42:27,160 I DON'T THINK PEOPLE LOOK AT 3282 02:42:27,160 --> 02:42:29,120 RESEARCH THEY'RE DOING AND WE 3283 02:42:29,120 --> 02:42:32,760 DON'T BELIEVE IT'S COLLECTIVE 3284 02:42:32,760 --> 02:42:38,680 DATA TO GET US ANYWHERE AND IN 3285 02:42:38,680 --> 02:42:41,080 ORDER TO GET TO PRECISION 3286 02:42:41,080 --> 02:42:45,040 MEDICINE WE NEED LARGE AMOUNTS 3287 02:42:45,040 --> 02:42:45,520 OF DATA. 3288 02:42:45,520 --> 02:42:46,760 THAT EDUCATION PROCESS IN 3289 02:42:46,760 --> 02:42:47,720 COMMUNITIES AND GROUPS AND 3290 02:42:47,720 --> 02:42:51,000 BEFORE PEOPLE GET SICK I THINK 3291 02:42:51,000 --> 02:42:53,040 WE LOSE A LOT OF PEOPLE TO 3292 02:42:53,040 --> 02:42:53,880 COMORBIDITIES WHEN THEY ALREADY 3293 02:42:53,880 --> 02:42:54,920 TRIED OTHER TREATMENTS WHEN THEY 3294 02:42:54,920 --> 02:42:57,400 COULD HAVE HAD AN OPTION TO GO 3295 02:42:57,400 --> 02:43:02,200 STRAIGHT TO A TRIAL FIT -- IF 3296 02:43:02,200 --> 02:43:03,600 IT WAS OFFERED AS A CARE OPTION 3297 02:43:03,600 --> 02:43:06,920 SO THERE'S SOME THINGS THERE. 3298 02:43:06,920 --> 02:43:09,600 >>I HAVE TWO QUESTIONS AND I 3299 02:43:09,600 --> 02:43:10,760 WANT TO THANK YOU ALL FOR YOUR 3300 02:43:10,760 --> 02:43:11,400 PARTICIPATION IN THIS PARTICULAR 3301 02:43:11,400 --> 02:43:14,440 SESSION. 3302 02:43:14,440 --> 02:43:23,200 ANY FIRST QUESTION GOES TO AMY. 3303 02:43:23,200 --> 02:43:25,640 YOU'VE TALKED ABOUT PENALTIES 3304 02:43:25,640 --> 02:43:28,320 FOR INAPPROPRIATE USE OF DATA. 3305 02:43:28,320 --> 02:43:30,760 WHAT DO YOU HAVE IN MIND? 3306 02:43:30,760 --> 02:43:33,600 WE MAY BE ABLE TO DEVELOP 3307 02:43:33,600 --> 02:43:36,920 RESEARCH ABOUT IT BUT WHEN DATA 3308 02:43:36,920 --> 02:43:39,760 IS USED BY PEOPLE OUTSIDE 3309 02:43:39,760 --> 02:43:41,000 ACADEMIC RESEARCHERS, WHAT 3310 02:43:41,000 --> 02:43:45,080 PENALTIES CAN YOU ENVISION THAT 3311 02:43:45,080 --> 02:43:47,840 MAY BE EFFECTIVE? 3312 02:43:47,840 --> 02:43:50,080 >>IT'S A GOOD QUESTION. 3313 02:43:50,080 --> 02:43:55,960 SO I THINK THE HARDEST PROBLEM 3314 02:43:55,960 --> 02:44:00,080 ARE LIKE THE TRUE HACKERS GOING 3315 02:44:00,080 --> 02:44:01,560 IN AND STEALING MEDICAL SYSTEM 3316 02:44:01,560 --> 02:44:03,880 DATA AND HOLDING IT FOR RANSOM 3317 02:44:03,880 --> 02:44:05,360 AND THOSE PEOPLE YOU DON'T KNOW 3318 02:44:05,360 --> 02:44:10,720 WHO THEY ARE OR FIND THEM AND 3319 02:44:10,720 --> 02:44:13,120 THAT'S PROBABLY THE BIGGEST 3320 02:44:13,120 --> 02:44:17,480 CHALLENGE. 3321 02:44:17,480 --> 02:44:21,120 THERE ARE COUNTRIES THAT HAVE 3322 02:44:21,120 --> 02:44:26,120 EVEN CRIMINAL LAW PENALTIES FOR 3323 02:44:26,120 --> 02:44:28,040 UNAUTHORIZED DATA USE. 3324 02:44:28,040 --> 02:44:29,120 SOME STATES HAVE LOOKED WITH 3325 02:44:29,120 --> 02:44:34,000 REGARD TO GENETIC DATA DATA 3326 02:44:34,000 --> 02:44:37,120 OWNERSHIP LAWS THAT HAVE MORE 3327 02:44:37,120 --> 02:44:39,160 STRINGENT PENALTIES. 3328 02:44:39,160 --> 02:44:49,720 I HAVEN'T THOUGHT ENOUGH IT AND 3329 02:44:51,200 --> 02:44:52,840 WHAT IS THE RIGHT APPROACH AND 3330 02:44:52,840 --> 02:44:53,240 PENALTIES. 3331 02:44:53,240 --> 02:44:54,480 I THINK IT'S A DIFFERENCE 3332 02:44:54,480 --> 02:44:55,840 BETWEEN YOU NEED TO THINK 3333 02:44:55,840 --> 02:44:56,640 DIFFERENTLY ABOUT RESEARCHERS 3334 02:44:56,640 --> 02:44:59,400 WHO HAVE GOOD INTENTIONS BUT 3335 02:44:59,400 --> 02:45:01,080 JUST DON'T FOLLOW THE RULES 3336 02:45:01,080 --> 02:45:02,800 VERSUS REALLY BAD ACTORS TRYING 3337 02:45:02,800 --> 02:45:09,280 TO USE DATA IN WAYS HARMING 3338 02:45:09,280 --> 02:45:10,080 INDIVIDUALS. 3339 02:45:10,080 --> 02:45:11,960 IT SHOULDN'T BE AND IF IT OCCURS 3340 02:45:11,960 --> 02:45:13,520 THERE SHOULD BE STRONG 3341 02:45:13,520 --> 02:45:13,920 PENALTIES. 3342 02:45:13,920 --> 02:45:18,920 YOU KNOW, IT'S A GOOD QUESTION I 3343 02:45:18,920 --> 02:45:20,400 DON'T FEEL FUELRY QUALIFIED TO 3344 02:45:20,400 --> 02:45:22,840 ANSWER IT BUT RIGHT NOW IT 3345 02:45:22,840 --> 02:45:23,840 DOESN'T SEEM LIKE THERE'S A LOT 3346 02:45:23,840 --> 02:45:25,280 OF TEETH BEHIND MANY OF OUR 3347 02:45:25,280 --> 02:45:25,920 POLICIES. 3348 02:45:25,920 --> 02:45:29,080 THERE ISN'T SOME OF THEM 3349 02:45:29,080 --> 02:45:30,640 PARTICULARLY AROUND HIPPA HAS 3350 02:45:30,640 --> 02:45:33,080 STRONG CIVIL PENALTIES 3351 02:45:33,080 --> 02:45:35,640 ASSOCIATED BUT THERE DOESN'T 3352 02:45:35,640 --> 02:45:37,120 SEEM A LOT OF TEETH BEHIND SOME 3353 02:45:37,120 --> 02:45:41,520 OF OUR POLICIES. 3354 02:45:41,520 --> 02:45:42,720 >>THANK YOU. 3355 02:45:42,720 --> 02:45:53,280 >>A SECOND QUESTION IS I GUESS 3356 02:45:54,960 --> 02:45:56,800 THERE'S AN INDIVIDUAL CONSENT 3357 02:45:56,800 --> 02:46:03,160 BUT WE TALKED ABOUT COMMUNITY 3358 02:46:03,160 --> 02:46:11,600 AFFECTS. 3359 02:46:11,600 --> 02:46:14,040 >>WE NEED TO BRING THESE 3360 02:46:14,040 --> 02:46:15,200 COMMUNITIES INTO DISCUSSION OF 3361 02:46:15,200 --> 02:46:15,720 INFORMED CONSENT. 3362 02:46:15,720 --> 02:46:16,320 EACH DISCUSSION WILL BE 3363 02:46:16,320 --> 02:46:17,160 DIFFERENT IN HOW THEY LOOK AT 3364 02:46:17,160 --> 02:46:18,000 THE DATA AND PROTECT THEIR OWN 3365 02:46:18,000 --> 02:46:26,440 COMMUNITIES. 3366 02:46:26,440 --> 02:46:28,280 IN THAT RESPECT WE NEED TO 3367 02:46:28,280 --> 02:46:30,280 INVOLVE THE COMMUNITY AND 3368 02:46:30,280 --> 02:46:32,440 PROCESSES AND NEED TO GET THEM 3369 02:46:32,440 --> 02:46:33,040 MORE INVOLVED IN THE DATA 3370 02:46:33,040 --> 02:46:36,000 SHARING AND EDUCATION FOR THEIR 3371 02:46:36,000 --> 02:46:36,440 COMMUNITIES ASH THAT. 3372 02:46:36,440 --> 02:46:36,840 -- AROUND THAT. 3373 02:46:36,840 --> 02:46:39,160 CERTAIN NONPROFITS COULD BE USED 3374 02:46:39,160 --> 02:46:42,960 AS AGENTS FOR THOSE CERTAIN 3375 02:46:42,960 --> 02:46:43,920 CONDITIONS TO LOOK AT THE DATA 3376 02:46:43,920 --> 02:46:46,440 AND I THINK IF WE LOOK AT IT 3377 02:46:46,440 --> 02:46:48,280 THAT WAY WE HAVE TO NARROW 3378 02:46:48,280 --> 02:46:48,720 THINGS DOWN. 3379 02:46:48,720 --> 02:46:52,840 RIGHT NOW WE HAVE A LOT OF 3380 02:46:52,840 --> 02:46:56,440 PEOPLE WIN DIFFERENT MISSED 3381 02:46:56,440 --> 02:46:56,960 DIAGN 3382 02:46:56,960 --> 02:46:57,240 DIAGNOSES. 3383 02:46:57,240 --> 02:46:58,520 HOW DO WE CLEAR OUT THE DATA TO 3384 02:46:58,520 --> 02:47:01,200 MAKE SURE PEOPLE ARE IN THE 3385 02:47:01,200 --> 02:47:03,120 RIGHT COMMUNITIES? 3386 02:47:03,120 --> 02:47:06,640 I HAVE DIAGNOSES FOR 40 3387 02:47:06,640 --> 02:47:07,680 DIFFERENT CONDITIONS RIGHT NOW 3388 02:47:07,680 --> 02:47:09,440 WHICH I WOULD POTENTIALLY NOT 3389 02:47:09,440 --> 02:47:11,400 PARTICIPATE IN A DRUG TRIAL BUT 3390 02:47:11,400 --> 02:47:13,080 COULD PARTICIPATE IN QUALITY OF 3391 02:47:13,080 --> 02:47:18,800 LIFE STUDIES OR ANY OTHER TYPE 3392 02:47:18,800 --> 02:47:23,120 OF RESEARCH IN THOSE 3393 02:47:23,120 --> 02:47:23,440 COMMUNITIES. 3394 02:47:23,440 --> 02:47:24,840 THERE'S A LOT THERE THAT NEEDS 3395 02:47:24,840 --> 02:47:26,120 TO BE TAUGHT AND HOW THEY LOOK 3396 02:47:26,120 --> 02:47:29,920 AT DATA AS A COLLECTIVE INSTEAD 3397 02:47:29,920 --> 02:47:31,040 OF INDIVIDUAL DATA AND I THINK 3398 02:47:31,040 --> 02:47:33,720 THOSE LESSONS HAVE TO BE TAUGHT 3399 02:47:33,720 --> 02:47:39,200 WITHIN EACH OF THOSE 3400 02:47:39,200 --> 02:47:44,040 COMMUNITIES. 3401 02:47:44,040 --> 02:47:49,080 FINDING A COMMUNITY AS YOU FIND 3402 02:47:49,080 --> 02:47:52,240 STAKEHOLDERS IN THE WRITING OF 3403 02:47:52,240 --> 02:47:54,120 THE RESEARCH AND WHEN PEOPLE BUY 3404 02:47:54,120 --> 02:47:56,080 A HOUSE THEY HAVE DIFFERENT 3405 02:47:56,080 --> 02:47:57,720 SPACES CONSENTING TO THIS AND 3406 02:47:57,720 --> 02:47:58,880 DON'T WANT THIS SO WE NEED TO 3407 02:47:58,880 --> 02:48:01,120 THINK ABOUT THE CONSENT IN THAT 3408 02:48:01,120 --> 02:48:06,200 WAY OF INSTEAD OF -- YOU'RE 3409 02:48:06,200 --> 02:48:08,240 DYING RIGHT NOW, SIGN THIS, 3410 02:48:08,240 --> 02:48:09,880 HAVING SECTIONS WHERE YOU HAVE 3411 02:48:09,880 --> 02:48:11,800 OPTIONS AND YOU DON'T FEEL 3412 02:48:11,800 --> 02:48:16,320 FORCED INTO TAKING THIS 3413 02:48:16,320 --> 02:48:17,080 TREATMENT BECAUSE THAT'S THE 3414 02:48:17,080 --> 02:48:17,400 ONLY OPTION. 3415 02:48:17,400 --> 02:48:24,320 >>THANK YOU. 3416 02:48:24,320 --> 02:48:27,160 >>THERE WAS DISCUSSION ABOUT 3417 02:48:27,160 --> 02:48:29,120 POTENTIAL HARM POTENTIALLY BEING 3418 02:48:29,120 --> 02:48:35,960 OVER HYPED. 3419 02:48:35,960 --> 02:48:41,520 >>THERE'S BEEN CONFLICT OF 3420 02:48:41,520 --> 02:48:43,200 INTEREST AND PERCEIVED CONFLICT 3421 02:48:43,200 --> 02:48:46,640 OF INTEREST IS ALSO RELATED TO 3422 02:48:46,640 --> 02:48:47,080 TRUST. 3423 02:48:47,080 --> 02:48:52,040 EVEN IF DEIDENTIFICATION OR 3424 02:48:52,040 --> 02:48:52,680 RE-IDENTIFICATION IS DIFFICULT 3425 02:48:52,680 --> 02:48:56,040 AND THERE'S ISSUES ASSOCIATED, 3426 02:48:56,040 --> 02:48:59,120 HOW CONCERNED SHOULD WE BE WITH 3427 02:48:59,120 --> 02:49:04,400 THE ISSUE IN TRUST AND SCIENCE 3428 02:49:04,400 --> 02:49:10,400 IS FOREFRONT THESE DAYS HOW DO 3429 02:49:10,400 --> 02:49:13,360 WE DEAL WITH THAT? 3430 02:49:13,360 --> 02:49:15,200 >>CAN I SAY FIRST I THINK IT'S 3431 02:49:15,200 --> 02:49:18,640 THE BIGGEST LIE WE SAY WE CAN 3432 02:49:18,640 --> 02:49:24,080 DEIDENTIFIED AND NOT RE-IDENTIFY 3433 02:49:24,080 --> 02:49:29,880 AND WE GET TO SEQUENCING, YOU'LL 3434 02:49:29,880 --> 02:49:33,640 BE ABLE TO ABLE TO IDENTIFY 3435 02:49:33,640 --> 02:49:35,360 EVERY ONE OF US. 3436 02:49:35,360 --> 02:49:37,240 WE NEED A DISCUSSION AROUND DATA 3437 02:49:37,240 --> 02:49:41,080 AND DE-IDENTIFYING AND MAKE SURE 3438 02:49:41,080 --> 02:49:46,200 PEOPLE TRULY UNDERSTAND THE 3439 02:49:46,200 --> 02:49:47,640 RISKS MEAN WHEN WE SIT DOWN WITH 3440 02:49:47,640 --> 02:49:57,760 THEM. 3441 02:50:03,560 --> 02:50:05,320 >>WE HAVE TIME FOR ONE LAST 3442 02:50:05,320 --> 02:50:06,840 QUESTION AND SYD HE'S BEEN 3443 02:50:06,840 --> 02:50:09,120 WAITING PATIENTLY ONLINE. 3444 02:50:09,120 --> 02:50:09,360 PLEASE. 3445 02:50:09,360 --> 02:50:10,440 >>THANK YOU. 3446 02:50:10,440 --> 02:50:14,120 SO AS WE HEARD YESTERDAY FROM 3447 02:50:14,120 --> 02:50:20,640 JOSLIN AND CRYSTAL, DIFFERENT 3448 02:50:20,640 --> 02:50:22,040 COMMUNITIES HAVE DIFFERENT 3449 02:50:22,040 --> 02:50:23,680 ASSESSMENTS OR SENSITIVITIES TO 3450 02:50:23,680 --> 02:50:25,440 THE RISKS OF DATA SHARING. 3451 02:50:25,440 --> 02:50:30,640 WE ALSO SAW FROM JOSLIN 3452 02:50:30,640 --> 02:50:33,080 RICKARD'S PRESENTATION A LOT OF 3453 02:50:33,080 --> 02:50:34,400 PEOPLE ARE VERY MUCH UNDER 3454 02:50:34,400 --> 02:50:39,200 REPRESENTED IN THE DATA THAT 3455 02:50:39,200 --> 02:50:41,080 GETS SHARED. 3456 02:50:41,080 --> 02:50:43,400 95% WHITE IN THE U.K. BRAIN DATA 3457 02:50:43,400 --> 02:50:43,960 BANK AND 76% IN THE UNITED 3458 02:50:43,960 --> 02:50:50,280 STATES. 3459 02:50:50,280 --> 02:50:52,800 MOSTLY IT'S A QUESTION FOR AMY 3460 02:50:52,800 --> 02:50:56,760 WHICH IS THAT GIVEN THE UNDER 3461 02:50:56,760 --> 02:50:57,960 REPRESENTATION OF A LOT OF THESE 3462 02:50:57,960 --> 02:51:00,040 COMMUNITIES OF POPULATIONS 3463 02:51:00,040 --> 02:51:03,920 WITHIN OUR DATA SET AND WITHIN 3464 02:51:03,920 --> 02:51:05,640 THE RESEARCH THAT'S BEING DONE, 3465 02:51:05,640 --> 02:51:10,480 CAN YOU TELL US MAYBE ABOUT THE 3466 02:51:10,480 --> 02:51:12,160 DEMOGRAPHICS OF THE PEOPLE WHO 3467 02:51:12,160 --> 02:51:14,120 PARTICIPATED IN YOUR STUDIES? 3468 02:51:14,120 --> 02:51:15,720 WE HEARD DIFFERENT PERSPECTIVES 3469 02:51:15,720 --> 02:51:17,080 JUST TODAY BETWEEN CHRISTINE AND 3470 02:51:17,080 --> 02:51:23,760 NATHAN HOW THEY FEEL ABOUT THEIR 3471 02:51:23,760 --> 02:51:29,000 DATA BEING SHARED. 3472 02:51:29,000 --> 02:51:30,840 I'M CURIOUS ON HOW TO 3473 02:51:30,840 --> 02:51:32,040 INCORPORATE THE DIFFERENCE VIEW 3474 02:51:32,040 --> 02:51:34,640 POINTS AND SENSITIVITIES UP 3475 02:51:34,640 --> 02:51:39,480 SHARING BRAIN DATA. 3476 02:51:39,480 --> 02:51:48,720 >>I'LL SAY THROUGH THE BRAIN 3477 02:51:48,720 --> 02:51:50,600 INITIATIVE THEY'RE NOT VERY 3478 02:51:50,600 --> 02:51:51,760 DIVERSE OR REPRESENTATIVE. 3479 02:51:51,760 --> 02:51:55,360 MOSTLY WHAT YOU'D EXPECT FROM 3480 02:51:55,360 --> 02:51:57,320 EYE NON-DIVERSE SAMPLE. 3481 02:51:57,320 --> 02:52:00,400 WHEN WE DID THE INITIAL STUDY 3482 02:52:00,400 --> 02:52:01,160 WITH REGARD TO THE DATA SHARING 3483 02:52:01,160 --> 02:52:05,640 FOR GENETIC STUDIES, THAT WAS 3484 02:52:05,640 --> 02:52:07,640 MUCH MORE DIVERSE BECAUSE IT WAS 3485 02:52:07,640 --> 02:52:12,720 A DIVERSE CITY AND LIKE 350 3486 02:52:12,720 --> 02:52:18,320 PARTICIPANTS AND WE HAD A LARGE 3487 02:52:18,320 --> 02:52:21,120 HISTORIC POPULATION AND MUCH 3488 02:52:21,120 --> 02:52:22,120 MORE REPRESENTATIVE DIFFERS 3489 02:52:22,120 --> 02:52:22,240 I. 3490 02:52:22,240 --> 02:52:26,080 I HAVE TO PULL UP THE 3491 02:52:26,080 --> 02:52:27,960 DEMOGRAPHIC TABLES FOR OUR 3492 02:52:27,960 --> 02:52:32,600 INTERVIEWS BUT GENERALLY LACK OF 3493 02:52:32,600 --> 02:52:33,880 DIVERSITY WHICH REFLECT THE LACK 3494 02:52:33,880 --> 02:52:34,840 OF DIVERSITY AND THOSE GETTING 3495 02:52:34,840 --> 02:52:44,680 THE PROCEDURES DONE. 3496 02:52:44,680 --> 02:52:46,640 >>ONE POSSIBLE THING TO THINK 3497 02:52:46,640 --> 02:52:53,120 ABOUT HERE IS WE NEED TO EXPAND 3498 02:52:53,120 --> 02:52:56,200 OUR DISCUSSIONS AND SURVEYS 3499 02:52:56,200 --> 02:52:57,240 BEYOND POPULATIONS WHO IS BRAIN 3500 02:52:57,240 --> 02:53:00,040 DATA IS BEING ACQUIRED BECAUSE 3501 02:53:00,040 --> 02:53:03,120 OF THE LACK OF DIVERSITY AND 3502 02:53:03,120 --> 02:53:05,600 POTENTIALLY THE LACK OF DIVERSE 3503 02:53:05,600 --> 02:53:06,080 VIEW POINTS AMONG THAT 3504 02:53:06,080 --> 02:53:09,120 PARTICULAR POPULATION AT THIS 3505 02:53:09,120 --> 02:53:17,400 TIME. 3506 02:53:17,400 --> 02:53:21,080 >>WE HAVE FOUND PEOPLE'S 3507 02:53:21,080 --> 02:53:23,480 HYPOTHETICAL PREFERENCES AND 3508 02:53:23,480 --> 02:53:26,040 WHAT THEY WOULD THINK THEY WOULD 3509 02:53:26,040 --> 02:53:26,840 HYPOTHETICALLY CHOOSE IS 3510 02:53:26,840 --> 02:53:28,800 DIFFERENT THAN IN THE SITUATION. 3511 02:53:28,800 --> 02:53:30,800 WE NEED TO UNDERSTAND DIVERSE 3512 02:53:30,800 --> 02:53:32,960 PERSPECTIVES AND NEED TO ENROLL 3513 02:53:32,960 --> 02:53:34,320 MORE PARTICIPANTS BECAUSE WE 3514 02:53:34,320 --> 02:53:35,720 ENCOUNTER THAT PROBLEM WHEN WE 3515 02:53:35,720 --> 02:53:39,200 START TO DO MORE HYPOTHETICAL 3516 02:53:39,200 --> 02:53:45,440 SURVEY WORK. 3517 02:53:45,440 --> 02:53:47,000 >>PLEASE, EVERYBODY HELP ME 3518 02:53:47,000 --> 02:53:49,080 THIS MANY OUR PANELISTS FOR THE 3519 02:53:49,080 --> 02:53:53,080 PANEL. 3520 02:53:53,080 --> 02:53:54,400 WE'LL TAKE A BREAK AND HAVE 3521 02:53:54,400 --> 02:53:56,000 LUNCH AND COME BACK READY TO 3522 02:53:56,000 --> 02:53:58,920 WORK IN THE BREAKOUT SESSIONS. 3523 02:53:58,920 --> 02:54:03,120 WE'LL RECONVENE AT 2:15 AND 3524 02:54:03,120 --> 02:54:04,320 WE'LL BE GOING INTO BREAKOUT 3525 02:54:04,320 --> 02:54:06,120 ROOMS WITH SOME GUIDANCE AT THE 3526 02:54:06,120 --> 02:54:09,160 START TO PLEASE COME BACK ON 3527 02:54:09,160 --> 02:54:09,360 TIME. 3528 02:54:09,360 --> 02:54:20,080 THANK YOU. 3529 02:54:20,080 --> 02:54:22,560 >>THE LAST PART WE HAD FOR 3530 02:54:22,560 --> 02:54:24,640 TODAY WAS TO HEAR SOME OF THE 3531 02:54:24,640 --> 02:54:28,360 KEY THEMES FROM EACH OF THE ROOM 3532 02:54:28,360 --> 02:54:28,640 DISCUSSIONS. 3533 02:54:28,640 --> 02:54:31,280 SO YOU WANT TO GO FIRST? 3534 02:54:31,280 --> 02:54:33,240 >>UM, IT WAS A RICH DISCUSSION. 3535 02:54:33,240 --> 02:54:38,720 WE INVITED EVERYBODY ABOUT 3536 02:54:38,720 --> 02:54:40,600 TECHNOLOGICAL POSSIBILITIES THAT 3537 02:54:40,600 --> 02:54:42,640 COULD EXIST TODAY AND MIGHT ALSO 3538 02:54:42,640 --> 02:54:44,280 BE SOMETHING THAT WOULD DEVELOP 3539 02:54:44,280 --> 02:54:46,280 IN THE FUTURE. 3540 02:54:46,280 --> 02:54:51,520 RESEARCH POSSIBILITY AND TALKED 3541 02:54:51,520 --> 02:54:57,160 ABOUT THINGS LIKE KEEPING DATA 3542 02:54:57,160 --> 02:55:00,000 AND THINKING AROUND QUESTIONS 3543 02:55:00,000 --> 02:55:05,200 WHETHER THERE ARE PRESETS THAT 3544 02:55:05,200 --> 02:55:08,440 COULD BE PUT INABILITY IN AROUND 3545 02:55:08,440 --> 02:55:09,760 LOCATION WHEN DATA IS BEING 3546 02:55:09,760 --> 02:55:11,400 SHARED OR ISN'T OR HAVING A SET 3547 02:55:11,400 --> 02:55:14,120 OF DEFAULTS THAT WOULD BE 3548 02:55:14,120 --> 02:55:15,480 TIME-BASED RATHER THAN 3549 02:55:15,480 --> 02:55:26,160 CONTENT-BASED OR EMBEDDING A 3550 02:55:27,160 --> 02:55:30,960 SYSTEM AND INTERFACE SOMETHING 3551 02:55:30,960 --> 02:55:32,280 WHEN YOU DECIDE WITH WHOM AND 3552 02:55:32,280 --> 02:55:42,800 WEN AND END TO END ENCRYPTION 3553 02:55:45,040 --> 02:55:46,280 TAGGING DATA TO TRACK HOW IT'S 3554 02:55:46,280 --> 02:55:50,840 USED AND ALLOWING FOR DYNAMIC 3555 02:55:50,840 --> 02:55:52,280 DECISION MAKING OF SHARING 3556 02:55:52,280 --> 02:55:53,320 RATHER THAN MOMENT BY MOMENT 3557 02:55:53,320 --> 02:55:54,880 BASIS TO DO SO. 3558 02:55:54,880 --> 02:55:56,000 HAVING GREATER USER LEVEL ACCESS 3559 02:55:56,000 --> 02:56:02,840 AND CONTROL OVER AND USER LEVEL 3560 02:56:02,840 --> 02:56:04,320 ACCESS TO USE DATA ONE SELF OR 3561 02:56:04,320 --> 02:56:11,400 PATIENT GROUPS. 3562 02:56:11,400 --> 02:56:12,320 THE POSSIBILITY OF DIFFERENT 3563 02:56:12,320 --> 02:56:19,040 TYPES OF DATA AND TRUSTED 3564 02:56:19,040 --> 02:56:19,440 INTERMEDIARIES. 3565 02:56:19,440 --> 02:56:23,880 HAVING SOME CLOUD-BASED SYSTEM 3566 02:56:23,880 --> 02:56:26,640 AND USING THAT AS A WAY TO TRACE 3567 02:56:26,640 --> 02:56:29,480 EACH ACCESS TO THE DATA FOR 3568 02:56:29,480 --> 02:56:32,240 IDENTIFIABLE OF USE AND LEVEL 3569 02:56:32,240 --> 02:56:34,360 PERMISSIONS IF IT'S CLOUD-BASED 3570 02:56:34,360 --> 02:56:36,440 IT'S EASIER THAN IF IT'S 3571 02:56:36,440 --> 02:56:36,760 DOWNLOADABLE. 3572 02:56:36,760 --> 02:56:38,480 I THINK THAT COVERS EVERYTHING. 3573 02:56:38,480 --> 02:56:39,880 DID I MISS ANYTHING IN THE 3574 02:56:39,880 --> 02:56:40,160 GROUP? 3575 02:56:40,160 --> 02:56:41,200 ALL RIGHT. 3576 02:56:41,200 --> 02:56:44,280 LET THAT BE A MODEL TO YOU OF 3577 02:56:44,280 --> 02:56:54,640 EFFICIENT READ OUT. 3578 02:57:05,720 --> 02:57:08,320 >>OKAY WE WERE LOOKING 3579 02:57:08,320 --> 02:57:10,680 SPECIFICALLY AT DIVERSITY AND 3580 02:57:10,680 --> 02:57:14,400 INCLUSIVITY. 3581 02:57:14,400 --> 02:57:17,080 AND A RECURRING THEME WAS THE 3582 02:57:17,080 --> 02:57:19,040 LACK OF DIVERSITY WITHIN 3583 02:57:19,040 --> 02:57:19,760 SCIENTIFIC COMMUNITIES AND 3584 02:57:19,760 --> 02:57:25,680 WITHIN P.I.s WHICH CAME UP IN A 3585 02:57:25,680 --> 02:57:30,880 COUPLE CONTEXTS IN TERMS OF 3586 02:57:30,880 --> 02:57:31,640 ENGAGING WITH DIVERSE 3587 02:57:31,640 --> 02:57:32,400 COMMUNITIES AND GAIN THE TRUST 3588 02:57:32,400 --> 02:57:34,680 OF DIVERSE COMMUNITIES. 3589 02:57:34,680 --> 02:57:36,320 WE SPOKE A LOT ABOUT RECRUITING 3590 02:57:36,320 --> 02:57:38,200 WAYS WE MIGHT APPROACH 3591 02:57:38,200 --> 02:57:43,200 RECRUITING MORE DIVERSE 3592 02:57:43,200 --> 02:57:48,320 PARTICIPANTS FOR BRAIN RESEARCH 3593 02:57:48,320 --> 02:57:51,080 REASONABLE LESSONS WAS THE 3594 02:57:51,080 --> 02:57:52,320 INACCESSIBLE LANGUAGE OF 3595 02:57:52,320 --> 02:57:53,960 NEUROSCIENCE EXACERBATED BY 3596 02:57:53,960 --> 02:57:55,760 LANGUAGE BARRIERS OF TRANSLATING 3597 02:57:55,760 --> 02:57:57,880 THAT SCIENCE TO NON-ENGLISH 3598 02:57:57,880 --> 02:57:59,040 SPEAKERS AND THE NEED TO REACH 3599 02:57:59,040 --> 02:58:05,280 COMMUNITIES WHERE THEY ARE AND 3600 02:58:05,280 --> 02:58:10,560 ENGAGE IN BROADER OUTREACH WHICH 3601 02:58:10,560 --> 02:58:15,960 SHOULD INCLUDE NOT TALKING AT 3602 02:58:15,960 --> 02:58:17,640 DIVERSE COMMUNITIES BUT 3603 02:58:17,640 --> 02:58:19,480 EMPLOYING PEOPLE AND NOT JUST 3604 02:58:19,480 --> 02:58:21,080 EXPLOITING COMMUNITY MEMBERS TO 3605 02:58:21,080 --> 02:58:23,560 DO OUR WORK FOR US AND DIVERSE 3606 02:58:23,560 --> 02:58:24,600 IF I OUR OWN WORKFORCE AND 3607 02:58:24,600 --> 02:58:25,840 EMPLOY PEOPLE WITHIN THE 3608 02:58:25,840 --> 02:58:26,560 COMMUNITIES WE WOULD LIKE TO 3609 02:58:26,560 --> 02:58:33,400 ENGAGE WITH. 3610 02:58:33,400 --> 02:58:36,280 ONE P.I. DISCUSSED THE REAL 3611 02:58:36,280 --> 02:58:42,000 VALUE OF A CHAMPION OR ADVOCATE 3612 02:58:42,000 --> 02:58:43,760 POSITIONED TO DO THE COMMUNITY 3613 02:58:43,760 --> 02:58:48,760 OUTREACH WHICH INCREASED 3614 02:58:48,760 --> 02:58:49,720 RECRUITING MORE BROADLY. 3615 02:58:49,720 --> 02:59:00,240 IT HAS THE EFFECT OF CREATING A 3616 02:59:00,480 --> 02:59:01,640 PRESENCE RATHER THAN GOING IN 3617 02:59:01,640 --> 02:59:04,160 AND LEAVING AND A NEED FOR 3618 02:59:04,160 --> 02:59:07,000 INFRASTRUCTURE AND COMMUNITY FOR 3619 02:59:07,000 --> 02:59:08,680 COMMUNITY-BASED PARTICIPATORY 3620 02:59:08,680 --> 02:59:11,200 RESEARCH AND FUNDING FOR HOW TO 3621 02:59:11,200 --> 02:59:12,560 ENGAGE DIVERSE COMMUNITIES AND 3622 02:59:12,560 --> 02:59:14,720 BRING RESEARCH AND GET COMMUNITY 3623 02:59:14,720 --> 02:59:20,040 AND POPULATION PERSPECTIVES ON 3624 02:59:20,040 --> 02:59:27,320 DATA SHARING AND BUILD IN 3625 02:59:27,320 --> 02:59:33,320 COMMUNITY ADVISORY BOARDS AND 3626 02:59:33,320 --> 02:59:34,840 HAS TO ARE NOT BRAND NEW IDEAS 3627 02:59:34,840 --> 02:59:40,760 AND ONE POINT THAT CAME UP IS WE 3628 02:59:40,760 --> 02:59:48,280 MAY FIND BY INCREASE IING INCREY 3629 02:59:48,280 --> 02:59:51,080 IN OUR POPULATIONS MAY BE 3630 02:59:51,080 --> 02:59:52,160 INTENTIONED WITH DATA SHARING 3631 02:59:52,160 --> 02:59:52,960 REQUIREMENTS AND SOME 3632 02:59:52,960 --> 02:59:56,240 COMMUNITIES WILL BE MORE 3633 02:59:56,240 --> 02:59:58,440 CONCERNED AND MORE RESISTANT TO 3634 02:59:58,440 --> 02:59:59,760 DATA SHARING AND WE SHOULD 3635 02:59:59,760 --> 03:00:00,360 RESPECT THEIR VIEW POINTS ON 3636 03:00:00,360 --> 03:00:10,440 THAT. 3637 03:00:17,200 --> 03:00:19,240 WE TALKED WITH THE INFLUENCE OF 3638 03:00:19,240 --> 03:00:20,920 DATA SHARING AND COUNTERING THE 3639 03:00:20,920 --> 03:00:26,440 HYPE THROUGH MORE 3640 03:00:26,440 --> 03:00:34,240 INTERDISCIPLINARY RESEARCH AND 3641 03:00:34,240 --> 03:00:36,600 HOW TO EDUCATE ON THE RESEARCH 3642 03:00:36,600 --> 03:00:40,280 RATHER THAN THE SPECULATIVE HYPE 3643 03:00:40,280 --> 03:00:50,680 WE ALL HEAR ABOUT A LOT. 3644 03:00:54,800 --> 03:00:56,120 COMMUNICATING THE IMPORTANCE OF 3645 03:00:56,120 --> 03:01:01,360 DIVERSITY IN RESEARCH AND FOR 3646 03:01:01,360 --> 03:01:06,280 THEM AND NOT JUST FOR SCIENCE 3647 03:01:06,280 --> 03:01:07,600 AND NOT THE PARTICULAR PROJECT 3648 03:01:07,600 --> 03:01:12,600 THEY'RE BEING APPROVED ABOUT. 3649 03:01:12,600 --> 03:01:18,440 WE HAD ONE FINAL SUGGESTION ON 3650 03:01:18,440 --> 03:01:21,200 EXPANDING DYNAMIC CONSENT FOR 3651 03:01:21,200 --> 03:01:22,560 ONGOING DIALOGUE AND ENGAGEMENT 3652 03:01:22,560 --> 03:01:25,120 WITH RESEARCH PARTICIPANTS AND 3653 03:01:25,120 --> 03:01:25,960 NOT JUST AN OPPORTUNITY TO GET 3654 03:01:25,960 --> 03:01:36,280 CONSENT ONCE MORE. 3655 03:01:52,880 --> 03:01:58,360 >>WE'RE GOING TO DISCUSS THE 3656 03:01:58,360 --> 03:02:00,040 SECTION AND THE ITERATION OF 3657 03:02:00,040 --> 03:02:01,000 WHAT WE DISCUSSED. 3658 03:02:01,000 --> 03:02:02,080 CONSENT IS AN ONGOING PROCESS 3659 03:02:02,080 --> 03:02:07,240 NOT A ONE AND DONE. 3660 03:02:07,240 --> 03:02:16,320 IN TERMS OF THINKING ABOUT 3661 03:02:16,320 --> 03:02:18,120 CONSENT THE PERSON UNDERSTANDS 3662 03:02:18,120 --> 03:02:24,280 AND BRING IN COMMUNITY ADVOCATE 3663 03:02:24,280 --> 03:02:30,440 S HELP IN WRITING MATERIALS AND 3664 03:02:30,440 --> 03:02:32,280 WITH RESPECT TO DATA SHARING AND 3665 03:02:32,280 --> 03:02:33,120 MAKE SURE PEOPLE UNDERSTAND WHAT 3666 03:02:33,120 --> 03:02:38,400 IS MEANT BY DATA SHARING. 3667 03:02:38,400 --> 03:02:42,640 THERE'S DISCUSSION ABOUT ONCE 3668 03:02:42,640 --> 03:02:45,040 YOU CONSENT TO DATA USED IN 3669 03:02:45,040 --> 03:02:46,560 DIFFERENT SETTINGS AND THE 3670 03:02:46,560 --> 03:02:50,000 CONSENT FORM GOES WITH THE DATA. 3671 03:02:50,000 --> 03:02:52,080 THE PERSON USING THE DATA KNOWS 3672 03:02:52,080 --> 03:02:58,400 WHAT IT WAS INTENDED FOR. 3673 03:02:58,400 --> 03:03:04,280 THAT WOULD BE USEFUL FOR THE 3674 03:03:04,280 --> 03:03:12,040 DATA AND THEN DISCUSSION ABOUT 3675 03:03:12,040 --> 03:03:15,440 PARTICIPATING IN STUDIES. 3676 03:03:15,440 --> 03:03:17,360 INFORMED OF PROGRESS OF THE 3677 03:03:17,360 --> 03:03:22,600 STUDY AND THAT TRANSPARENCY I 3678 03:03:22,600 --> 03:03:30,440 THINK WOULD HELP TO TRUST THEN 3679 03:03:30,440 --> 03:03:32,040 PARTIAL CONSENT AND WITH THIS OR 3680 03:03:32,040 --> 03:03:34,400 THAT ENTITY AND HOW THAT COULD 3681 03:03:34,400 --> 03:03:38,840 BE USEFUL FOR THE PEOPLE ASKED 3682 03:03:38,840 --> 03:03:39,120 PARTICIPATE. 3683 03:03:39,120 --> 03:03:40,800 ONE ASPECT MAY BE CONSENTING FOR 3684 03:03:40,800 --> 03:03:46,360 RESEARCH THAT IS IS SPONSORED BY 3685 03:03:46,360 --> 03:03:55,560 HIP -- SO LIMITED BY THAT AND 3686 03:03:55,560 --> 03:03:57,200 THIS PARTIAL CONSENT MAY BE ABLE 3687 03:03:57,200 --> 03:04:07,720 TO DEAL WITH ASPECTS OF THAT. 3688 03:04:08,680 --> 03:04:13,280 I THINK THOSE WERE THE MAIN 3689 03:04:13,280 --> 03:04:13,520 POINTS. 3690 03:04:13,520 --> 03:04:15,200 THE OTHER THING IS WHEN YOU ASK 3691 03:04:15,200 --> 03:04:19,160 FOR CONSENT YOU ASK FOR CONSENT 3692 03:04:19,160 --> 03:04:21,280 FOR THE PATIENT OR SUBJECT TO 3693 03:04:21,280 --> 03:04:26,320 PARTICIPATE IN THE STUDY AND 3694 03:04:26,320 --> 03:04:28,200 PROTECTIONS AND ASKING FOR 3695 03:04:28,200 --> 03:04:30,600 CONSENT FOR THE DATA TO BE USED 3696 03:04:30,600 --> 03:04:34,040 IN THE PROCESS OF ONGOING 3697 03:04:34,040 --> 03:04:34,480 SCIENTIFIC RESEARCH. 3698 03:04:34,480 --> 03:04:35,840 THERE'S MULTIPLE COMPONENTS IT'S 3699 03:04:35,840 --> 03:04:39,600 NOT JUST ABOUT PATIENT 3700 03:04:39,600 --> 03:04:40,280 PROTECTION BUT ABOUT DATA 3701 03:04:40,280 --> 03:04:41,280 GENERATION AND KEEPING THOSE 3702 03:04:41,280 --> 03:04:45,080 THINGS IN MIND IN HOW CONSENT IS 3703 03:04:45,080 --> 03:04:49,120 DONE AND BENEFITS ALL APARTY TO 3704 03:04:49,120 --> 03:04:55,520 THE IDEA AND SHOULD BE PAID 3705 03:04:55,520 --> 03:04:56,480 ATTENTION TO. 3706 03:04:56,480 --> 03:04:57,000 >>THANK YOU. 3707 03:04:57,000 --> 03:05:01,960 AND LAST BUT NOT LEAST WE HAD A 3708 03:05:01,960 --> 03:05:04,080 ROOM ON CYBER SECURITY AND DATA 3709 03:05:04,080 --> 03:05:10,600 MANAGEMENT AND USE AND I SHOW 3710 03:05:10,600 --> 03:05:21,120 MONICA OH, JESSICA SAYS SHE DOES 3711 03:05:42,400 --> 03:05:43,640 NOT HAVE A MIKE. 3712 03:05:43,640 --> 03:05:44,520 >>THE PUT A WORD DOCUMENT IN 3713 03:05:44,520 --> 03:05:54,720 THE CHAT. 3714 03:06:11,880 --> 03:06:14,800 >>THESE ARE TO THE NOTES. 3715 03:06:14,800 --> 03:06:17,280 SO WE WENT THROUGH VARIOUS 3716 03:06:17,280 --> 03:06:18,240 CATEGORIES OF CYBER SECURITY AND 3717 03:06:18,240 --> 03:06:22,160 ALL THE ISSUES WE'VE BEEN 3718 03:06:22,160 --> 03:06:23,320 TALKING ABOUT RELATED TO 3719 03:06:23,320 --> 03:06:24,040 INFRASTRUCTURE AND HOW WE DESIGN 3720 03:06:24,040 --> 03:06:30,520 AND CONTROL POLICIES FOR THE 3721 03:06:30,520 --> 03:06:32,960 INFORMATIC SYSTEMS. 3722 03:06:32,960 --> 03:06:39,400 I MENTIONED THE DATA ARCHIVE 3723 03:06:39,400 --> 03:06:43,120 THAT ARE DATA TYPE SPECIFIC AND 3724 03:06:43,120 --> 03:06:46,080 SOME SPECIFIC TO PRECLINICAL 3725 03:06:46,080 --> 03:06:52,080 ANIMAL DATA AND MODALITIES AND 3726 03:06:52,080 --> 03:06:57,000 SOME RESEARCHERS CAN ACCESS THEM 3727 03:06:57,000 --> 03:07:03,080 AND DON'T HAVE TO DOWNLOAD DATA 3728 03:07:03,080 --> 03:07:06,440 SETS AND PROCEDURES IN PLACE 3729 03:07:06,440 --> 03:07:07,880 WHERE YOU WOULD HAVE PROTECTION 3730 03:07:07,880 --> 03:07:16,320 MEASURE THAT COULD BE VERY 3731 03:07:16,320 --> 03:07:18,480 IMPORTANT TO SLOW COMPLICATION 3732 03:07:18,480 --> 03:07:22,600 OF DATA AWAY FROM CONTROLLED 3733 03:07:22,600 --> 03:07:24,320 SYSTEMS IT WILL BE IMPORTANT HOW 3734 03:07:24,320 --> 03:07:27,040 WE DESIGN THE INFRASTRUCTURE AND 3735 03:07:27,040 --> 03:07:28,280 POLICIES AS FAR AS THE COMPUTE 3736 03:07:28,280 --> 03:07:35,600 ENGINES THAT ARE ATTACHED TO THE 3737 03:07:35,600 --> 03:07:38,600 DATA STORING AND SHARING 3738 03:07:38,600 --> 03:07:42,840 MECHANISMS AND WE TALKED ABOUT 3739 03:07:42,840 --> 03:07:47,720 DE-IDENTIFICATION METHODS AND MR 3740 03:07:47,720 --> 03:07:51,000 DATA AND TIED THAT TO THE 3741 03:07:51,000 --> 03:07:52,120 DISCUSSIONS FROM THE LAST DAY 3742 03:07:52,120 --> 03:07:53,320 AND A HALF IN THE WORKSHOP AND 3743 03:07:53,320 --> 03:07:55,040 THE CONTINUUM OF DEFACING. 3744 03:07:55,040 --> 03:07:56,840 THERE'S DIFFERENT ALGORITHMS 3745 03:07:56,840 --> 03:07:59,040 THAT LEAD TO DIFFERENT LEVELS OF 3746 03:07:59,040 --> 03:08:00,280 INFORMATION LOSS AND THERE'S 3747 03:08:00,280 --> 03:08:02,040 IMPORTANT TRADE-OFFS IN TERMS OF 3748 03:08:02,040 --> 03:08:07,880 SCIENTIFIC VALUE AND THE 3749 03:08:07,880 --> 03:08:10,600 REGISTRATION IDEA YOU NEED DATA 3750 03:08:10,600 --> 03:08:16,200 FOR REGISTRATION AND CERTAIN 3751 03:08:16,200 --> 03:08:21,440 OTHER DIMENSIONS OF DATA WITH 3752 03:08:21,440 --> 03:08:25,200 SCIENTIFIC VALUE AND IF YOU 3753 03:08:25,200 --> 03:08:28,240 THINK OF THE FUTURE AND 3754 03:08:28,240 --> 03:08:28,880 DIFFERENT CAPABILITIES. 3755 03:08:28,880 --> 03:08:30,160 WE CAN ANTICIPATE SOME BUT NOT 3756 03:08:30,160 --> 03:08:32,680 ALL SO WE HAVE AN 3757 03:08:32,680 --> 03:08:37,600 UNKNOWN-UNKNOWN SITUATION WHERE 3758 03:08:37,600 --> 03:08:38,360 THERE'S LATENT DATA OR 3759 03:08:38,360 --> 03:08:43,440 INFORMATION WITHIN THE DATA SETS 3760 03:08:43,440 --> 03:08:53,960 AND RE-IDENTIFIABLE VALUE OF 3761 03:08:55,680 --> 03:09:00,200 SECONDARY OR FURTHER DOWN STREAM 3762 03:09:00,200 --> 03:09:04,520 ANALYSES OR DATA USE AND RE-USE 3763 03:09:04,520 --> 03:09:04,840 SCENARIOS. 3764 03:09:04,840 --> 03:09:06,880 AND DISCUSSION OF METADATA AND 3765 03:09:06,880 --> 03:09:07,680 HOW THAT LEADS TO INFORMED 3766 03:09:07,680 --> 03:09:09,120 CONSENT AND STUDY DESIGN. 3767 03:09:09,120 --> 03:09:12,120 HOW IS THAT DATA INTERLINKED. 3768 03:09:12,120 --> 03:09:16,040 IF WE HAVE ALL SORTS OF DATA 3769 03:09:16,040 --> 03:09:17,120 MODULES IN THE CLOUD THEY'RE ALL 3770 03:09:17,120 --> 03:09:23,160 HYPER LINKED ESSENTIALLY AND 3771 03:09:23,160 --> 03:09:25,560 THINK OF UTILIZING DATA 3772 03:09:25,560 --> 03:09:28,160 PROTECTION IF YOU CAN'T LINK 3773 03:09:28,160 --> 03:09:29,840 SOME INDIVIDUAL PATIENT OR 3774 03:09:29,840 --> 03:09:31,920 SUBJECT DATA IN ONE MODALITY TO 3775 03:09:31,920 --> 03:09:38,240 ANOTHER THEN YOU'RE BREAKING THE 3776 03:09:38,240 --> 03:09:40,280 AGGREGATION RISK AND HAS 3777 03:09:40,280 --> 03:09:45,480 TRADEOFFS WITH THE SCIENTIFIC 3778 03:09:45,480 --> 03:09:52,040 VALUE AND WE DISCUSSED THE 3779 03:09:52,040 --> 03:09:56,040 SECURITY THAT WE CARE ABOUT 3780 03:09:56,040 --> 03:09:57,280 THERE'S THE TRUST WITH SYSTEMS 3781 03:09:57,280 --> 03:10:00,000 AND THINK YOU DON'T HAVE TO ASK 3782 03:10:00,000 --> 03:10:02,680 PERMISSION TO ACCESS DATA BUT 3783 03:10:02,680 --> 03:10:04,560 THEN THERE ARE FORMAL PROCESSES 3784 03:10:04,560 --> 03:10:06,960 IN PLACE AND HOW THE BLOCK CHAIN 3785 03:10:06,960 --> 03:10:09,880 IS DESIGN INTRINSICALLY ENFORCES 3786 03:10:09,880 --> 03:10:12,880 ACCESS PATTERNS AND ON THE OTHER 3787 03:10:12,880 --> 03:10:16,080 SIDE YOU HAVE A GATE KEEPER OR 3788 03:10:16,080 --> 03:10:17,200 PERMISSION-BASED SYSTEM WHERE 3789 03:10:17,200 --> 03:10:20,000 YOU HAVE TO ASK A PARTICULAR 3790 03:10:20,000 --> 03:10:21,400 CENTRALIZED ORGANIZATION OR 3791 03:10:21,400 --> 03:10:23,080 CONTROL ACCESS POLICY OR PROCESS 3792 03:10:23,080 --> 03:10:25,320 FOR PERMISSION OR PERHAPS GO 3793 03:10:25,320 --> 03:10:26,960 THROUGH REVIEW AND MAYBE THAT'S 3794 03:10:26,960 --> 03:10:27,520 MORE BURDEN BUT ALSO MORE 3795 03:10:27,520 --> 03:10:33,440 PROTECTIVE. 3796 03:10:33,440 --> 03:10:34,720 WE HAD DISCUSSIONS HOW THAT 3797 03:10:34,720 --> 03:10:40,280 RELATES TO DIFFERENT MODALITIES 3798 03:10:40,280 --> 03:10:41,840 AND LOOKING AT DIFFERENT WAYS 3799 03:10:41,840 --> 03:10:45,640 THOSE MODALITIES CAN BE MISUSED 3800 03:10:45,640 --> 03:10:46,600 BY PEOPLE WHETHER AS THE 3801 03:10:46,600 --> 03:10:50,000 RESEARCHERS OR OTHER ACTORS AND 3802 03:10:50,000 --> 03:10:56,920 WHAT THEIR MOTIVATIONS MIGHT BE 3803 03:10:56,920 --> 03:10:58,600 AND ALSO THE ADVANCE OF SCIENCE 3804 03:10:58,600 --> 03:11:02,120 REALIZE ON THE CONVERGENCE AND 3805 03:11:02,120 --> 03:11:04,280 BRING TOGETHER CONVERGENT 3806 03:11:04,280 --> 03:11:06,320 APPROACHES ON THE SAME DATA 3807 03:11:06,320 --> 03:11:08,280 SETS. 3808 03:11:08,280 --> 03:11:14,080 THAT'S WHERE WE WRAPPED UP. 3809 03:11:14,080 --> 03:11:14,640 >>THANK YOU. 3810 03:11:14,640 --> 03:11:22,600 WITH THAT I'LL SEND IT TO YOU 3811 03:11:22,600 --> 03:11:32,920 THE GROUP CONDENSED. 3812 03:11:32,920 --> 03:11:35,160 >>WE TALK ABOUT HOW TO PROTECT 3813 03:11:35,160 --> 03:11:37,800 AGAINST DIFFERENT TYPES OF USES 3814 03:11:37,800 --> 03:11:39,880 THAT WE MIGHT PREFER NOT TO WANT 3815 03:11:39,880 --> 03:11:41,760 AND WE'LL FOLLOW-UP ON THAT 3816 03:11:41,760 --> 03:11:46,800 OFFLINE TO SEE WHAT WE CAN DO TO 3817 03:11:46,800 --> 03:11:51,280 WORK ON THE TOPIC AND WE THERE 3818 03:11:51,280 --> 03:11:53,920 COULD ALSO BEING POTENTIAL GROUP 3819 03:11:53,920 --> 03:11:57,200 HARMS NOT FROM INTENTIONAL USES 3820 03:11:57,200 --> 03:11:59,840 OF DATA FROM NON-BIOMEDICAL 3821 03:11:59,840 --> 03:12:01,920 ACTORS BUT ALSO FROM BIOMEDICAL 3822 03:12:01,920 --> 03:12:03,400 ACTORS WHO MAYBE ARE 3823 03:12:03,400 --> 03:12:04,600 MISUNDERSTANDING THE DATA IN 3824 03:12:04,600 --> 03:12:08,040 IMPORTANT WAYS THAT LEADS THEM 3825 03:12:08,040 --> 03:12:12,280 TO METHODOLOGIES NOT EXACTLY 3826 03:12:12,280 --> 03:12:14,920 ACCURATE AND LEADS THEM TO MAKE 3827 03:12:14,920 --> 03:12:17,680 INACCURATE CONCLUSIONS ABOUT 3828 03:12:17,680 --> 03:12:19,160 DATA SETS SINCE THEY WERE NOT 3829 03:12:19,160 --> 03:12:20,440 INVOLVED IN THE COLLECTION OF 3830 03:12:20,440 --> 03:12:24,560 THE DATA AND LIMITED ABILITY TO 3831 03:12:24,560 --> 03:12:26,920 SEE WHAT THEY MIGHT USE THE DATA 3832 03:12:26,920 --> 03:12:27,080 FOR. 3833 03:12:27,080 --> 03:12:29,360 THAT'S ONE OF THE OTHER TYPES OF 3834 03:12:29,360 --> 03:12:31,000 POTENTIAL MISUSES IF YOU WANT TO 3835 03:12:31,000 --> 03:12:34,000 CALL IT THAT WAY OR POTENTIAL 3836 03:12:34,000 --> 03:12:36,720 HARMFUL USES OUR INVESTIGATORS 3837 03:12:36,720 --> 03:12:40,280 HIGHLIGHTED AS POTENTIALLY BEING 3838 03:12:40,280 --> 03:12:40,560 OF CONCERN. 3839 03:12:40,560 --> 03:12:50,800 THANK YOU. 3840 03:12:50,800 --> 03:12:52,560 >>ARE THERE REFLECTIONS FROM 3841 03:12:52,560 --> 03:12:54,200 THE LAST DAY AND A HALF OR 3842 03:12:54,200 --> 03:13:01,920 INSIGHTS. 3843 03:13:01,920 --> 03:13:04,160 FIRST I WANT TO THANK EVERYBODY 3844 03:13:04,160 --> 03:13:06,000 BECAUSE IT WAS A FULL AND 3845 03:13:06,000 --> 03:13:06,720 ENGAGING TWO DAYS. 3846 03:13:06,720 --> 03:13:08,960 GREAT SPEAKERS AND GREAT PANELS 3847 03:13:08,960 --> 03:13:10,400 AND LOTS OF GOOD INTERACTION AND 3848 03:13:10,400 --> 03:13:11,920 DISCUSSION WITH EVERYBODY BOTH 3849 03:13:11,920 --> 03:13:15,520 IN THE ROOM AND ONLINE AND I 3850 03:13:15,520 --> 03:13:17,680 THINK DESPITE ONE OR TWO 3851 03:13:17,680 --> 03:13:18,400 TECHNOLOGY GLITCHES THE HYBRID 3852 03:13:18,400 --> 03:13:19,440 FORMAT ACTUALLY WORKED. 3853 03:13:19,440 --> 03:13:29,840 WE'RE GRATEFUL FOR THAT. 3854 03:13:30,720 --> 03:13:33,480 I I THINK WHERE HE GO BACK TO 3855 03:13:33,480 --> 03:13:36,320 WHERE WE STARTED WHAT DATA WE 3856 03:13:36,320 --> 03:13:39,280 CAN COLLECT FROM BRAIN AND THE 3857 03:13:39,280 --> 03:13:41,720 INFERENCE MADE AND RISK POSED TO 3858 03:13:41,720 --> 03:13:43,720 PEOPLE AND WHAT WE CAN DO ABOUT 3859 03:13:43,720 --> 03:13:45,800 THAT AND SOME HOPE -- WELL, HOPE 3860 03:13:45,800 --> 03:13:48,600 IS NOT THE RIGHT WORD, SOME IDEA 3861 03:13:48,600 --> 03:13:50,760 WE CAN COME UP WITH A SPECTRUM 3862 03:13:50,760 --> 03:13:52,280 OF KINDS OF RISKS ACROSS 3863 03:13:52,280 --> 03:13:53,160 DIFFERENT TYPES OF DATA. 3864 03:13:53,160 --> 03:13:55,880 AND WE STILL MIGHT BE ABLE TO DO 3865 03:13:55,880 --> 03:13:58,320 THAT BUT WE DIDN'T ACTUALLY GET 3866 03:13:58,320 --> 03:14:01,640 THAT DONE DURING THESE TWO DAYS. 3867 03:14:01,640 --> 03:14:04,200 HOWEVER, WE DID HAVE A LOT OF 3868 03:14:04,200 --> 03:14:07,160 DISCUSSION ABOUT WHAT CAN WE DO 3869 03:14:07,160 --> 03:14:09,040 ABOUT THE POTENTIAL RISKS. 3870 03:14:09,040 --> 03:14:10,480 HOPEFULLY THE BREAKOUT SESSIONS 3871 03:14:10,480 --> 03:14:11,960 WERE VERY HELPFUL BUT ONE OF THE 3872 03:14:11,960 --> 03:14:14,040 THINGS WE HAD TO THINK ABOUT IS 3873 03:14:14,040 --> 03:14:16,720 EACH OF THE RECOMMENDATIONS THAT 3874 03:14:16,720 --> 03:14:19,760 WAS MADE ARE VERY USEFUL FOR 3875 03:14:19,760 --> 03:14:21,960 RESEARCH IN GENERAL AND PROBABLY 3876 03:14:21,960 --> 03:14:23,800 FOR BRAIN RESEARCH IN PARTICULAR 3877 03:14:23,800 --> 03:14:24,200 AS WELL. 3878 03:14:24,200 --> 03:14:27,240 HOW THAT APPLY TO THE SPECIFIC 3879 03:14:27,240 --> 03:14:28,560 ISSUES OF DATA SHARING I THINK 3880 03:14:28,560 --> 03:14:32,280 WE STILL NEED SOME CONVERSATION 3881 03:14:32,280 --> 03:14:34,440 ABOUT AND SOME EFFORT TO PUT 3882 03:14:34,440 --> 03:14:36,040 TOWARDS BUT I THINK OVER ALL 3883 03:14:36,040 --> 03:14:37,800 IT'S A VERY SUCCESSFUL WORKSHOP 3884 03:14:37,800 --> 03:14:39,760 AND I REALLY APPRECIATE 3885 03:14:39,760 --> 03:14:41,600 EVERYBODY'S PARTICIPATION AND I 3886 03:14:41,600 --> 03:14:44,520 KNOW WE THANKED EVERYBODY THIS 3887 03:14:44,520 --> 03:14:45,760 MORNING BUT WE'RE THANKING AGAIN 3888 03:14:45,760 --> 03:14:49,560 THE STAFF, ESPECIALLY SASKIA AND 3889 03:14:49,560 --> 03:14:51,400 NINA WHO PUT EVERYTHING TOGETHER 3890 03:14:51,400 --> 03:14:53,760 AND SCRAMBLED AROUND IN THE LAST 3891 03:14:53,760 --> 03:14:56,720 TWO HOURS AS WELL TO GET OUR 3892 03:14:56,720 --> 03:14:58,560 GROUPS RIGHT, SO THANK YOU. 3893 03:14:58,560 --> 03:15:00,480 AND OVER TO NITA. 3894 03:15:00,480 --> 03:15:03,200 >>IT'S ALWAYS BETTER TO NOT GO 3895 03:15:03,200 --> 03:15:05,280 LAST BECAUSE IT'S HARD TO FOLLOW 3896 03:15:05,280 --> 03:15:08,280 CHRISTINE ON THAT BUT MANY 3897 03:15:08,280 --> 03:15:10,440 THANKS TO ALL OF YOU FOR 3898 03:15:10,440 --> 03:15:10,880 PARTICIPATING IN THE 3899 03:15:10,880 --> 03:15:11,240 CONVERSATION. 3900 03:15:11,240 --> 03:15:13,680 I WANT TO TELL YOU WHERE WE'RE 3901 03:15:13,680 --> 03:15:16,160 GOING WITH THIS IT'S NOT HAVE A 3902 03:15:16,160 --> 03:15:17,880 GREAT CONVERSATION AND THEN WHAT 3903 03:15:17,880 --> 03:15:23,120 BUT THE GOAL IS TO HAVE AND THEN 3904 03:15:23,120 --> 03:15:23,400 WHAT. 3905 03:15:23,400 --> 03:15:25,600 THE NEXT MEETING OF THE 3906 03:15:25,600 --> 03:15:26,320 NEUROETHICS WORKING GROUP WILL 3907 03:15:26,320 --> 03:15:28,280 BUILD ON THESE INSIGHTS AND TRY 3908 03:15:28,280 --> 03:15:30,720 TO TAKE THEM AND DO AS CHRISTINE 3909 03:15:30,720 --> 03:15:33,600 WAS DESCRIBING WHICH IS TAKE THE 3910 03:15:33,600 --> 03:15:35,600 INSIGHTS AND TO LOOK AT TO WHAT 3911 03:15:35,600 --> 03:15:36,680 EXTENT ARE THE RECOMMENDATIONS 3912 03:15:36,680 --> 03:15:38,520 OR THE IDEAS THAT HAVE COME OUT 3913 03:15:38,520 --> 03:15:39,560 OF THIS. 3914 03:15:39,560 --> 03:15:41,400 SOMETHING THAT INFORMS DATA 3915 03:15:41,400 --> 03:15:43,040 MANAGEMENT, HUMAN SUBJECTS 3916 03:15:43,040 --> 03:15:44,480 RESEARCH, RESEARCH DESIGN, TECH 3917 03:15:44,480 --> 03:15:45,600 DESIGN MORE GENERALLY ACROSS THE 3918 03:15:45,600 --> 03:15:48,280 BOARD WHICH CAN BE REALLY 3919 03:15:48,280 --> 03:15:49,680 INFORMATIVE TO ALL KINDS OF 3920 03:15:49,680 --> 03:15:51,280 DIFFERENT EFFORTS AT NIH TO WHAT 3921 03:15:51,280 --> 03:15:54,760 EXTENT AND WHAT CAN WE PULL OUT 3922 03:15:54,760 --> 03:15:56,320 THAT'S UNIQUE TO BRING AND ALSO 3923 03:15:56,320 --> 03:15:58,800 BE IT'S NOT NECESSARILY UNIQUE 3924 03:15:58,800 --> 03:16:07,160 TO BRING BUT BRING -- BUT BRAIN 3925 03:16:07,160 --> 03:16:08,520 WILL BRING THIS TO DATA STORAGE 3926 03:16:08,520 --> 03:16:09,840 AND HUMAN RESEARCH PROTECTION 3927 03:16:09,840 --> 03:16:11,280 AND I THINK THAT'S WHAT THE GOAL 3928 03:16:11,280 --> 03:16:13,200 OF THE NEXT STEPS IS TO TAKE 3929 03:16:13,200 --> 03:16:18,360 THESE IMPORTANT INSIGHTS TO 3930 03:16:18,360 --> 03:16:20,280 INFORM WHAT NEWG WILL WORK AT 3931 03:16:20,280 --> 03:16:23,840 THE NEXT MEETING TO HOPEFULLY 3932 03:16:23,840 --> 03:16:24,960 COME UP WITH USEFUL INSIGHTS 3933 03:16:24,960 --> 03:16:30,920 THAT CAN BE SHARED WITH RESEARCH 3934 03:16:30,920 --> 03:16:33,360 FOR BRAIN AND ACROSS THE 3935 03:16:33,360 --> 03:16:34,960 COMMUNITIES ABOUT BEST PRACTICES 3936 03:16:34,960 --> 03:16:39,480 AND AGAIN TRYING TO DISTINGUISH 3937 03:16:39,480 --> 03:16:40,720 WHETHER BRAIN IS DIFFERENT OR 3938 03:16:40,720 --> 03:16:42,960 JUST A THOUGHT LEADER IN HOW TO 3939 03:16:42,960 --> 03:16:46,080 DO THIS WELL IN WAYS THAT 3940 03:16:46,080 --> 03:16:46,960 RESPECT INDIVIDUALS AND RESPECT 3941 03:16:46,960 --> 03:16:51,120 THE SENSITIVITY OF THE DATA AND 3942 03:16:51,120 --> 03:16:52,640 DATA COLLECTION OF PARTICIPATION 3943 03:16:52,640 --> 03:16:53,240 BY INDIVIDUALS. 3944 03:16:53,240 --> 03:16:54,360 SO THANKS TO ALL OF YOU. 3945 03:16:54,360 --> 03:16:56,880 THIS IS INSIGHT THAT WILL 3946 03:16:56,880 --> 03:16:58,680 CONTINUE AND BUILT UPON AND WILL 3947 03:16:58,680 --> 03:16:59,640 NOT END HERE. 3948 03:16:59,640 --> 03:17:04,320 I'LL HAND IT OVER TO JOHN FOR 3949 03:17:04,320 --> 03:17:05,520 FINAL, FINAL LAST WORDS. 3950 03:17:05,520 --> 03:17:10,080 >>THANKS, CHRISTINA AND NITA 3951 03:17:10,080 --> 03:17:11,560 FOR OVERSEEING THIS AND TO THE 3952 03:17:11,560 --> 03:17:14,360 REST OF THE TEAM FOR ALL YOU DID 3953 03:17:14,360 --> 03:17:17,360 IN OUR GREAT LOGISTICS 3954 03:17:17,360 --> 03:17:17,800 CONTRACTORS AS WELL. 3955 03:17:17,800 --> 03:17:19,880 JUST ECHOING WHAT WAS SAID HERE, 3956 03:17:19,880 --> 03:17:22,640 THIS IS THE BEGINNING OF AN 3957 03:17:22,640 --> 03:17:24,600 IMPORTANT CONVERSATION. 3958 03:17:24,600 --> 03:17:26,120 THERE WILL BE MORE. 3959 03:17:26,120 --> 03:17:27,920 WE WILL FOLLOW-UP AT THE 3960 03:17:27,920 --> 03:17:29,440 UPCOMING NEWG MEETING AT THE END 3961 03:17:29,440 --> 03:17:31,240 OF AUGUST AND WE'LL CONTINUE THE 3962 03:17:31,240 --> 03:17:33,280 CONVERSATION TO SEE HOW BRAIN 3963 03:17:33,280 --> 03:17:34,640 CAN CONTINUE TO BE HOPEFULLY 3964 03:17:34,640 --> 03:17:35,480 THOUGHT LEADERS IN THE SPACE AND 3965 03:17:35,480 --> 03:17:37,680 LEAD THE WAY TO A BETTER PLACE 3966 03:17:37,680 --> 03:17:40,880 SO WE CAN ACTUALLY NOT ONLY MORE 3967 03:17:40,880 --> 03:17:43,360 EFFECTIVELY IMPLEMENT THE DATA 3968 03:17:43,360 --> 03:17:45,960 BUT MORE RESPONSIBLY DO SO AS 3969 03:17:45,960 --> 03:17:47,600 WELL AND WE'LL NEVER BE FUTURE 3970 03:17:47,600 --> 03:17:50,320 PROOF BUT HOPEFULLY WE CAN 3971 03:17:50,320 --> 03:17:51,880 ASSIST THE FIELD IN BEING FUTURE 3972 03:17:51,880 --> 03:17:53,640 READY AND WE'LL HAVE GREAT 3973 03:17:53,640 --> 03:17:54,760 CONVERSATIONS AND LEARN GREAT 3974 03:17:54,760 --> 03:17:56,200 LESSONS ALONG THE WAY AND THANK 3975 03:17:56,200 --> 03:17:56,960 YOU ALL FOR PARTICIPATING 3976 03:17:56,960 --> 03:17:58,680 WHETHER HERE IN PERSON OR 3977 03:17:58,680 --> 03:17:58,960 ONLINE. 3978 03:17:58,960 --> 03:18:03,080 IT'S BEEN A GREAT TWO DAYS OF 3979 03:18:03,080 --> 03:18:04,920 THOUGHT AND A LOT TO REFLECT ON 3980 03:18:04,920 --> 03:18:06,240 AND MOVE ON THANKS AGAIN AND 3981 03:18:06,240 --> 00:00:00,000 HAVE A GREAT REST OF THE DAY.