1 00:00:11,440 --> 00:00:13,640 Welcome to the Clinical Center Grand Rounds, 2 00:00:13,640 --> 00:00:17,440 a weekly series of educational lectures for physicians and 3 00:00:17,440 --> 00:00:20,080 health care professionals broadcast from the Clinical 4 00:00:20,080 --> 00:00:23,040 Center at the National Institutes of Health in 5 00:00:23,040 --> 00:00:24,840 Bethesda, MD. 6 00:00:24,840 --> 00:00:28,400 The NIH Clinical Center is the world's largest hospital totally 7 00:00:28,400 --> 00:00:32,080 dedicated to investigational research and leads the global 8 00:00:32,080 --> 00:00:35,040 effort in training today's investigators and discovering 9 00:00:35,040 --> 00:00:37,200 tomorrow's cures. 10 00:00:37,200 --> 00:09:16,600 Learn more by visiting us online at http://clinicalcenter.nih.gov 11 00:09:16,600 --> 00:09:18,280 >>GIVEN SENSITIVITY TO FEAR, 12 00:09:18,280 --> 00:09:19,600 INDEED WORK DONE IN THIS PLACE 13 00:09:19,600 --> 00:09:23,040 AND OTHERS HAS SHOWN THAT 14 00:09:23,040 --> 00:09:25,480 INDIVIDUALS WHEN SHOWN PICTURES 15 00:09:25,480 --> 00:09:28,640 OF PEOPLE WITH SORT OF TOUGH AND 16 00:09:28,640 --> 00:09:30,320 SORT OF SCARY FACES THAT WOULD 17 00:09:30,320 --> 00:09:33,800 BE APPARENT TO OTHERS ARE NOT 18 00:09:33,800 --> 00:09:35,920 SEEN AS SCARE TOW AN INDIVIDUAL 19 00:09:35,920 --> 00:09:36,600 WITH WILLIAMS SYNDROME. 20 00:09:36,600 --> 00:09:38,160 THEY WOULD LIKE TO MEET 21 00:09:38,160 --> 00:09:40,360 EVERYBODY AND INTERACT WITH 22 00:09:40,360 --> 00:09:42,920 EVERYONE, AND SO THAT, THAT SORT 23 00:09:42,920 --> 00:09:44,880 OF SENSITIVITY AND FEAR 24 00:09:44,880 --> 00:09:46,520 INFLUENCES THEIR WILLINGNESS TO 25 00:09:46,520 --> 00:09:47,080 INTERACT. 26 00:09:47,080 --> 00:09:48,200 IN ADDITION, THOUGH, THEY ALSO 27 00:09:48,200 --> 00:09:49,120 HAVE KNOWA AVERSION TO 28 00:09:49,120 --> 00:09:51,480 SITUATIONS IN WHICH THEY FEEL 29 00:09:51,480 --> 00:09:53,480 OTHERS ARE IN DISTRESS SO WE 30 00:09:53,480 --> 00:09:55,200 OFTEN HEAR FAMILIES TALKING 31 00:09:55,200 --> 00:09:56,840 ABOUT HOW THEIR FAMILY MEMBER 32 00:09:56,840 --> 00:09:58,200 WITH WILLIAMS SYNDROME HAS A 33 00:09:58,200 --> 00:09:59,640 REALLY HARD TIME HEARING BABIES 34 00:09:59,640 --> 00:10:01,720 CRY OR SEEING SOMEBODY GET HURT. 35 00:10:01,720 --> 00:10:04,720 AND THAT IDEA OF WANTING TO SORT 36 00:10:04,720 --> 00:10:06,480 OF PROTECT PEOPLE FROM PAIN AND 37 00:10:06,480 --> 00:10:08,560 FEELING DISTRESS WHEN OTHERS IN 38 00:10:08,560 --> 00:10:10,880 DISTRESS IS AN IMPORTANT PART OF 39 00:10:10,880 --> 00:10:12,480 THE PHENOTYPE OF THESE 40 00:10:12,480 --> 00:10:14,680 INDIVIDUALS. 41 00:10:14,680 --> 00:10:16,080 THIS CONSTELLATION OF TRAITS 42 00:10:16,080 --> 00:10:18,080 OFTEN MANIFESTS AS A DESIRE TO 43 00:10:18,080 --> 00:10:19,240 HELP EVEN IN SITUATIONS THAT 44 00:10:19,240 --> 00:10:21,920 MIGHT NOT BE BENEFICIAL TO THEM 45 00:10:21,920 --> 00:10:23,240 SO THERE'S 1 IN PARTICULAR STUDY 46 00:10:23,240 --> 00:10:24,640 IN WHICH INDIVIDUALS WERE AT A 47 00:10:24,640 --> 00:10:26,280 CAMP FOR PEOPLE WITH WILLIAMS 48 00:10:26,280 --> 00:10:28,600 SYNDROME AND THEY SPENT THE DAY 49 00:10:28,600 --> 00:10:29,720 LEARNING ABOUT STRANGER DANGER 50 00:10:29,720 --> 00:10:31,240 AND HOW THEY SHOULDN'T GO WITH 51 00:10:31,240 --> 00:10:36,320 PEOPLE THAT THEY DON'T KNOW AND 52 00:10:36,320 --> 00:10:37,760 AFTER THAT THEY WERE RELEASED TO 53 00:10:37,760 --> 00:10:39,840 DO THINGS OUTSIDE AND THEY HAD 54 00:10:39,840 --> 00:10:40,920 INVESTIGATORS COME AND ACT LIKE 55 00:10:40,920 --> 00:10:41,960 THEY WERE CARRYING A SET OF 56 00:10:41,960 --> 00:10:44,320 BOOKS AND OH MY GOODNESS THIS 57 00:10:44,320 --> 00:10:45,600 WAS HEAVY COULD YOU COME AND 58 00:10:45,600 --> 00:10:47,280 HELP WITH ME DISP THE MAJORITY 59 00:10:47,280 --> 00:10:48,560 OF INDIVIDUALS ARE MORE THAN 60 00:10:48,560 --> 00:10:50,400 HAPPY TO HELP THAT INDIVIDUAL 61 00:10:50,400 --> 00:10:51,920 AND WALKED RIGHT AWAY WITH THEM 62 00:10:51,920 --> 00:10:55,080 TO GO TAKE THE BOOKS TO WHERE 63 00:10:55,080 --> 00:10:55,920 THE PERSON NEEDED WHICH 64 00:10:55,920 --> 00:10:57,760 OBVIOUSLY IS VERY HELPFUL BUT 65 00:10:57,760 --> 00:11:00,640 CAN PUT A PERSON IN A TOUGH 66 00:11:00,640 --> 00:11:02,000 SITUATION IF THE PERSON WITH THE 67 00:11:02,000 --> 00:11:08,480 ASK IS NOT AS GOOD AS WE MIETD 68 00:11:08,480 --> 00:11:08,920 HOPE. 69 00:11:08,920 --> 00:11:10,120 SO CURRENT TREATMENTS FOR 70 00:11:10,120 --> 00:11:14,280 WILLIAMS SYNDROME ARE LIMITED, 71 00:11:14,280 --> 00:11:16,560 BY THE TIME MOST PEOPLE ARE 72 00:11:16,560 --> 00:11:17,760 DIAGNOSED WITH WILLIAMS 73 00:11:17,760 --> 00:11:19,160 SYNDROME, THEY PRODUCED ALL OF 74 00:11:19,160 --> 00:11:21,720 THE ELASTIN THEY WILL EVER MAKE 75 00:11:21,720 --> 00:11:22,560 IN THEIR LIFETIME. 76 00:11:22,560 --> 00:11:25,520 AND SO TREATMENTS ARE USUALLY 77 00:11:25,520 --> 00:11:28,760 BASED ON SORT OF DEALING WITH 78 00:11:28,760 --> 00:11:30,040 THE CONSEQUENCES OF ELASTIN 79 00:11:30,040 --> 00:11:31,360 INSUFFICIENCY AND ARE INVOLVED 80 00:11:31,360 --> 00:11:33,040 IN PRESERVING BLOOD FLOW TO 81 00:11:33,040 --> 00:11:33,560 RELEVANT TISSUES. 82 00:11:33,560 --> 00:11:35,200 THERE ARE SOME SURGERIES THAT 83 00:11:35,200 --> 00:11:38,080 CAN BE USED TO TREAT CERTAIN 84 00:11:38,080 --> 00:11:39,560 VASCULAR PHENOTYPES BUT THEY'RE 85 00:11:39,560 --> 00:11:41,120 NOT ALWAYS SUCCESSFUL AND 86 00:11:41,120 --> 00:11:43,520 UNFORTUNATELY, WE DO LOSE 87 00:11:43,520 --> 00:11:45,200 CHILDREN SECONDAR TOW THEIR 88 00:11:45,200 --> 00:11:46,040 VASCULAR DISEASE. 89 00:11:46,040 --> 00:11:47,200 CURRENTLY THERE ARE NO 90 00:11:47,200 --> 00:11:50,160 THERAPEUTICS THAT ARE AVAILABLE 91 00:11:50,160 --> 00:11:51,000 TO INCREASED ELASTIN EXPRESSION 92 00:11:51,000 --> 00:11:53,600 OR DEPOSITION TO TURN THAT GENE 93 00:11:53,600 --> 00:11:55,400 BACK ON AND UNFORTUNATELY WE 94 00:11:55,400 --> 00:11:59,480 HAVE AN INABILITY TO PRO DICT OR 95 00:11:59,480 --> 00:12:00,640 PREVENT SUDDEN DEATH IN MANY 96 00:12:00,640 --> 00:12:02,720 SITUATIONS BECAUSE WE'RE NOT 97 00:12:02,720 --> 00:12:03,640 COMPLETELY SURE OF THE 98 00:12:03,640 --> 00:12:06,440 MECHANISMS THAT DRIVE THAT IN 99 00:12:06,440 --> 00:12:06,800 THIS POPULATION. 100 00:12:06,800 --> 00:12:08,960 LIKEWISE WHEN WE THINK ABOUT 101 00:12:08,960 --> 00:12:11,360 THERAPEUTICS FOR THE 102 00:12:11,360 --> 00:12:12,160 NEURODEVELOPMENTAL DIFFERENCES 103 00:12:12,160 --> 00:12:13,560 IN PEOPLE WITH WILLIAMS 104 00:12:13,560 --> 00:12:15,080 SYNDROME, IT BECOMES EVEN MORE 105 00:12:15,080 --> 00:12:16,600 COMPLEX BECAUSE THERE ARE 106 00:12:16,600 --> 00:12:18,920 MULTIPLE GENES INVOLVED AND SO 107 00:12:18,920 --> 00:12:20,080 UNDERSTANDING THOSE SOMETIMES 108 00:12:20,080 --> 00:12:21,840 SINNER GESTIC, SOMETIMES 109 00:12:21,840 --> 00:12:23,240 COMPETING MECHANISMS, OF 110 00:12:23,240 --> 00:12:25,680 MULTIPLE GENES ININVOLVED IN THE 111 00:12:25,680 --> 00:12:27,040 NEURAL DEVELOPMENTAL DIFFERENCES 112 00:12:27,040 --> 00:12:27,800 AND COMPLICATED. 113 00:12:27,800 --> 00:12:29,640 AS A RESULT MOST OF THE 114 00:12:29,640 --> 00:12:31,480 TREATMENTS ARE AIMED AT 115 00:12:31,480 --> 00:12:32,560 PALLIATION OF SYMPTOMS RATHER 116 00:12:32,560 --> 00:12:35,240 THAN TRYING TO HIT AT THE 117 00:12:35,240 --> 00:12:35,840 MOLECULAR MECHANISM. 118 00:12:35,840 --> 00:12:38,040 AS A RESULT, IN ORDER TO DEVELOP 119 00:12:38,040 --> 00:12:39,440 MORE EFFECTIVE TREATMENTS, IT'S 120 00:12:39,440 --> 00:12:40,800 IMPORTANT THAT MORE RESEARCH IS 121 00:12:40,800 --> 00:12:44,040 DONE TO UNDERSTAND WILLIAMS 122 00:12:44,040 --> 00:12:44,280 SYNDROME. 123 00:12:44,280 --> 00:12:46,960 HERE AT THE NIH, WE ARE LUCKY TO 124 00:12:46,960 --> 00:12:48,440 HAVE SEVERAL INVESTIGATORS WHO 125 00:12:48,440 --> 00:12:51,720 ARE INVOLVED IN THE STUDY OF 126 00:12:51,720 --> 00:12:52,520 WILLIAMS SYNDROME. 127 00:12:52,520 --> 00:12:53,600 MY GROUP STUDIES CARDIOVASCULAR 128 00:12:53,600 --> 00:12:55,120 DISEASE AND THERE ARE OTHER 129 00:12:55,120 --> 00:12:57,960 GROUPS HERE THAT STUDY OTHER 130 00:12:57,960 --> 00:12:59,640 ASPECTS OF WILLIAMS SYNDROME 131 00:12:59,640 --> 00:13:01,400 HELP AND INDEED WE ACTUALLY 132 00:13:01,400 --> 00:13:02,160 COLLABORATE WITH MANY OF THE 133 00:13:02,160 --> 00:13:03,760 GROUPS HERE AND MANY OF THE 134 00:13:03,760 --> 00:13:07,240 CLINICIANS THAT AID US IN OUR 135 00:13:07,240 --> 00:13:08,040 INVESTIGATIONS AS WELL. 136 00:13:08,040 --> 00:13:09,440 ULTIMATELY THE GOAL OF ALL OF 137 00:13:09,440 --> 00:13:13,320 OUR SEARCH TO DEVELOP MECHANISM 138 00:13:13,320 --> 00:13:16,400 BASED TREATMENTS, WHICH TARGET 139 00:13:16,400 --> 00:13:16,840 GENE PRODUCTS. 140 00:13:16,840 --> 00:13:18,000 SO SOME OF THE WORK THAT WE HAVE 141 00:13:18,000 --> 00:13:20,080 DONE AND I AM NOT GOING TO GET 142 00:13:20,080 --> 00:13:24,520 INTO ALL OF THIS, BUT IT 143 00:13:24,520 --> 00:13:25,320 INVOLVED IN UNDERSTANDING WHAT'S 144 00:13:25,320 --> 00:13:26,480 GOING ON IN WILLIAMS SYNDROME 145 00:13:26,480 --> 00:13:28,040 AND WHY THEY HAVE THE PHENOTYPES 146 00:13:28,040 --> 00:13:29,360 THAT THEY DO AND SO 147 00:13:29,360 --> 00:13:30,560 UNDERSTANDING WHICH GENES ARE 148 00:13:30,560 --> 00:13:31,760 INVOLVED IS IMPORTANT FOR THAT, 149 00:13:31,760 --> 00:13:34,400 SO WE'VE DONE SOME WORK 150 00:13:34,400 --> 00:13:36,400 ADVANCING GENO TYPE PHENOTYPE 151 00:13:36,400 --> 00:13:36,720 RELATIONSHIPS. 152 00:13:36,720 --> 00:13:37,800 WE ARE ALSO INVOLVED IN 153 00:13:37,800 --> 00:13:39,640 UNDERSTANDING THE IMPACT OF 154 00:13:39,640 --> 00:13:41,240 VASCULAR DISEASE ON END ORGAN 155 00:13:41,240 --> 00:13:43,560 FUNCTION AS WELL AS 156 00:13:43,560 --> 00:13:44,400 UNDERSTANDING THE MECHANISM AND 157 00:13:44,400 --> 00:13:45,560 DEPTHS OF THESE INDIVIDUALS AND 158 00:13:45,560 --> 00:13:49,680 WE'VE DONE THAT THROUGH A 159 00:13:49,680 --> 00:13:51,920 VARIETY OF STUDIES. 160 00:13:51,920 --> 00:13:53,560 IN GENERAL, THOUGH, MOST OF OUR 161 00:13:53,560 --> 00:13:55,040 STUDIES AT THIS POINT ARE SORT 162 00:13:55,040 --> 00:13:56,680 OF NATURAL HISTORY TYPE STUDIES 163 00:13:56,680 --> 00:13:59,080 IN WHICH DATA ARE COLLECTED FROM 164 00:13:59,080 --> 00:14:00,200 PEOPLE AND THEIR FAMILIES WITH 165 00:14:00,200 --> 00:14:02,960 THE HOPE OF BENEFITING THOSE IN 166 00:14:02,960 --> 00:14:03,440 THE FUTURE. 167 00:14:03,440 --> 00:14:05,920 SOME OF THE STUDIES THAT WE DO, 168 00:14:05,920 --> 00:14:07,880 POSE BURDENS TO THE FAMILY, 169 00:14:07,880 --> 00:14:09,520 CERTAINLY IN TERMS OF THEIR 170 00:14:09,520 --> 00:14:10,840 TIME, TIME AWAY FROM SCHOOL, 171 00:14:10,840 --> 00:14:12,840 TIME AWAY FROM HOME, TO COME TO 172 00:14:12,840 --> 00:14:15,600 THE NIH, AND MAY EXPOSE THEM TO 173 00:14:15,600 --> 00:14:17,160 IN THIS CASE, MINIMAL AND I'LL 174 00:14:17,160 --> 00:14:20,440 GET BACK TO THAT RISKS. 175 00:14:20,440 --> 00:14:22,720 IN GENERAL, OUR STUDIES BEING 176 00:14:22,720 --> 00:14:23,880 NATURAL HISTORY DON'T 177 00:14:23,880 --> 00:14:26,080 NECESSARILY OFFER THE POTENTIAL 178 00:14:26,080 --> 00:14:28,240 FOR CLINICAL BENEFIT BEYOND 179 00:14:28,240 --> 00:14:29,080 UNDERSTANDING THEIR OWN DISEASE 180 00:14:29,080 --> 00:14:29,640 STATE. 181 00:14:29,640 --> 00:14:30,800 HOWEVER I WOULD SAY THAT FOR 182 00:14:30,800 --> 00:14:36,040 MANY PEOPLE WHO COME TO OUR 183 00:14:36,040 --> 00:14:38,000 STUDIES, THAT LADDER FINDING 184 00:14:38,000 --> 00:14:39,160 ESPECIALLY IN RARE DISEASE IS 185 00:14:39,160 --> 00:14:40,000 REALLY IMPORTANT BECAUSE THEY 186 00:14:40,000 --> 00:14:41,120 CAN'T GET THAT INFORMATION 187 00:14:41,120 --> 00:14:44,000 ELSEWHERE, SO THAT REALLY IS A 188 00:14:44,000 --> 00:14:44,600 BENEFIT FOR THEM. 189 00:14:44,600 --> 00:14:46,120 BUT I WANTED TO GO BACK AND SORT 190 00:14:46,120 --> 00:14:49,040 OF GO THROUGH THE ROLE OF 191 00:14:49,040 --> 00:14:50,040 CONSENT IN THAT SITUATION AND 192 00:14:50,040 --> 00:14:53,680 SORT OF HOW WE THINK ABOUT 193 00:14:53,680 --> 00:14:54,160 CONSENT MORE GLOBALLY. 194 00:14:54,160 --> 00:14:57,240 SO IN THE U.S., THEY HAVE 195 00:14:57,240 --> 00:14:59,120 POLICIES IN GENERAL DO NOT PLACE 196 00:14:59,120 --> 00:15:00,640 AN UPPER LIMIT ON THE RISKS 197 00:15:00,640 --> 00:15:05,680 PERMITTED FOR THOSE WHO CONSENT. 198 00:15:05,680 --> 00:15:07,960 SO IN THEORY IF YOU UNDERSTAND 199 00:15:07,960 --> 00:15:10,480 IT, YOU COULD CONSENT TO IT. 200 00:15:10,480 --> 00:15:11,920 THORS SAID MOST INVESTIGATORS 201 00:15:11,920 --> 00:15:14,600 AND MOST IRB REVIEWERS OF 202 00:15:14,600 --> 00:15:15,520 PROTOCOLS ARE RELUCTANT TO 203 00:15:15,520 --> 00:15:16,800 APPROVE REALLY HIGH RISK 204 00:15:16,800 --> 00:15:19,480 STUDIES, EVEN IN PEOPLE WHO 205 00:15:19,480 --> 00:15:20,040 CONSENT. 206 00:15:20,040 --> 00:15:23,080 NOW FOR PEOPLE WHO ARE UNABLE TO 207 00:15:23,080 --> 00:15:26,320 CONSENT, MOST REGULATIONS LIMIT 208 00:15:26,320 --> 00:15:27,960 THAT RESEARCH TO MINIMAL RISK AS 209 00:15:27,960 --> 00:15:30,160 WE TALKED ABOUT BEFORE OR A 210 00:15:30,160 --> 00:15:31,240 MINOR INCREASE OVER MINIMAL 211 00:15:31,240 --> 00:15:32,280 RISK. 212 00:15:32,280 --> 00:15:35,240 AT THE NIH, THERE ARE 213 00:15:35,240 --> 00:15:36,720 POSSIBILITIES WHERE IF THE 214 00:15:36,720 --> 00:15:38,920 PARTICULAR STUDY WAS NEEDED THAT 215 00:15:38,920 --> 00:15:39,880 PROTOCOL CAN GO THROUGH A 216 00:15:39,880 --> 00:15:41,160 SPECIAL TYPE OF REVIEW THAT 217 00:15:41,160 --> 00:15:42,560 WOULD ALLOW SLIGHTLY HIGHER RISK 218 00:15:42,560 --> 00:15:45,360 RESEARCH TO GO ON BUT IT NEEDS 219 00:15:45,360 --> 00:15:49,480 TO BE CONSISTENT WITH 220 00:15:49,480 --> 00:15:49,920 PARTICIPANTS WISHES. 221 00:15:49,920 --> 00:15:53,000 SO FOR OUR STUDIES, OUR CONSENT 222 00:15:53,000 --> 00:15:53,920 PROCESSES, TYPICALLY LOOK LIKE 223 00:15:53,920 --> 00:16:01,040 THIS, SO MOST OF OUR PATIENTS IF 224 00:16:01,040 --> 00:16:03,080 THEY'RE ADULTS COME TO US AND 225 00:16:03,080 --> 00:16:05,680 HAVE ALREADY OBTAINED A LEGAL 226 00:16:05,680 --> 00:16:07,880 AUTHORIZED REPRESENTATIVE OR 227 00:16:07,880 --> 00:16:09,560 LAR, MEANING THAT IT IS ALREADY 228 00:16:09,560 --> 00:16:11,160 BEEN DETERMINED THAT THEY LACK 229 00:16:11,160 --> 00:16:14,720 THE ABILITY TO CONSENT FOR THEIR 230 00:16:14,720 --> 00:16:17,760 EVEN MEDICAL CARE, CLINICAL CARE 231 00:16:17,760 --> 00:16:19,160 AND RESEARCH CARE THERE AND 232 00:16:19,160 --> 00:16:21,000 SOMEONE IS ASSIGNED TO HELP THEM 233 00:16:21,000 --> 00:16:22,080 WITH MEDICAL DECISION MAKING. 234 00:16:22,080 --> 00:16:24,400 THAT PERSON IS TYPICALLY A 235 00:16:24,400 --> 00:16:26,800 PARENT, CAN BE AN ADULT SIBLING. 236 00:16:26,800 --> 00:16:29,040 OBVIOUSLY FOR CHILDREN WHO 237 00:16:29,040 --> 00:16:31,400 CONSENT TO OUR PROTOCOL THEIR 238 00:16:31,400 --> 00:16:32,280 PATIENTS ARE CONSENTERS. 239 00:16:32,280 --> 00:16:34,480 IN THE CASE, HOWEVER, WHERE A 240 00:16:34,480 --> 00:16:35,360 PERSON DOESN'T FIT EITHER OF 241 00:16:35,360 --> 00:16:36,680 THOSE, WE HAVE A SUBSET OF 242 00:16:36,680 --> 00:16:38,080 INDIVIDUALS WHO DON'T HAVE AN 243 00:16:38,080 --> 00:16:41,440 LAR AND IN THAT CASE, BECAUSE OF 244 00:16:41,440 --> 00:16:42,240 THE KNOWN COGNITIVE IMPAIRMENT 245 00:16:42,240 --> 00:16:44,880 ASSOCIATED WITH WILLIAMS 246 00:16:44,880 --> 00:16:45,960 SYNDROME, THE TEAM NEEDS TO SIT 247 00:16:45,960 --> 00:16:47,560 DOWN WITH THE INDIVIDUAL AND 248 00:16:47,560 --> 00:16:49,480 DETERMINE IF THIS INDIVIDUAL IS 249 00:16:49,480 --> 00:16:50,360 ABLE TO CONSENT. 250 00:16:50,360 --> 00:16:52,640 AND WE USUALLY DO THAT WITH AN 251 00:16:52,640 --> 00:16:53,640 GRIEW IN WHICH WE TALK TO THE 252 00:16:53,640 --> 00:16:55,280 PERSON ABOUT THE STUDY, TRY TO 253 00:16:55,280 --> 00:16:55,880 GAUGE THEIR UNDERSTANDING OF 254 00:16:55,880 --> 00:16:59,400 WHAT WE WILL BE GOING ON IN THE 255 00:16:59,400 --> 00:17:00,680 STUDY AND UNDERSTAND WHAT 256 00:17:00,680 --> 00:17:02,000 DIFFERS FOR THEM BETWEEN 257 00:17:02,000 --> 00:17:04,760 PARTICIPATING IN RESEARCH AND 258 00:17:04,760 --> 00:17:07,040 PARTICIPATING IN SORT OF THE 259 00:17:07,040 --> 00:17:08,880 CLINICAL CARE THAT THEY WOULD 260 00:17:08,880 --> 00:17:09,680 GET AT HOME. 261 00:17:09,680 --> 00:17:11,560 IN MANY CASES IT'S RELATIVELY 262 00:17:11,560 --> 00:17:12,600 CLEAR THROUGH THAT DISCUSSION 263 00:17:12,600 --> 00:17:14,320 WHERE THE ANSWERS FALL. 264 00:17:14,320 --> 00:17:17,720 FOR EXAMPLE, IN SOME CASES WE'VE 265 00:17:17,720 --> 00:17:19,120 ASKED PEOPLE ABOUT, SORT OF WHAT 266 00:17:19,120 --> 00:17:21,920 THE DIFFERENCE BETWEEN RESEARCH 267 00:17:21,920 --> 00:17:25,000 AND CLINICAL CARE IS AND WE HAD 268 00:17:25,000 --> 00:17:30,400 SOMEONE TELL US AT 1 POINT THAT 269 00:17:30,400 --> 00:17:33,320 RESEARCH WAS DONE IN A BIG RED 270 00:17:33,320 --> 00:17:36,040 BUILDING LIKE HERE AT THE NIH 271 00:17:36,040 --> 00:17:37,360 WHEREAS CARE FROM THEIR DOCTOR 272 00:17:37,360 --> 00:17:38,840 HAPPENS IN A WHITE BUILDING 273 00:17:38,840 --> 00:17:39,960 CLOSER TO THEIR HOME. 274 00:17:39,960 --> 00:17:41,680 SO THEY COULD DEFERENTIATE THAT 275 00:17:41,680 --> 00:17:43,200 2 THINGS WERE DIFFERENT BUT NOT 276 00:17:43,200 --> 00:17:44,200 TRULY SORT OF THE MEANING AND 277 00:17:44,200 --> 00:17:46,560 WHY THAT WAS SORT OF IMPORTANT 278 00:17:46,560 --> 00:17:47,160 TO DECISION MAKING. 279 00:17:47,160 --> 00:17:48,200 THERE ARE OTHER CASES THOUGH, 280 00:17:48,200 --> 00:17:51,080 THAT ARE A BIT MORE OF A GRAY 281 00:17:51,080 --> 00:17:53,720 AREA, AND IN THOSE CASES WE WILL 282 00:17:53,720 --> 00:17:55,640 OFTEN GET THE ETHICS TEAM 283 00:17:55,640 --> 00:17:57,600 INVOLVED TO HAVE SORT OF AN 284 00:17:57,600 --> 00:17:59,360 UNBIASED GROUP TO HELP WITH 285 00:17:59,360 --> 00:17:59,960 THOSE ASSESSMENTS. 286 00:17:59,960 --> 00:18:01,160 OF NOTE IT'S IMPORTANT TO NOTE 287 00:18:01,160 --> 00:18:02,000 THAT ALMOST ALL OF THE 288 00:18:02,000 --> 00:18:03,040 INDIVIDUALS THAT WE TALKED TO 289 00:18:03,040 --> 00:18:05,160 WHEN WE TALK TO THEM ABOUT WHY 290 00:18:05,160 --> 00:18:07,800 THEY WANTED TO PARTICIPATE IN 291 00:18:07,800 --> 00:18:09,400 RESEARCH, SITE AND DESIRE TO 292 00:18:09,400 --> 00:18:10,600 HELP OTHERS WITH WILLIAMS 293 00:18:10,600 --> 00:18:19,160 SYNDROME AS 1 OF THEIR REASONS 294 00:18:19,160 --> 00:18:20,280 FOR PARTICIPATION. 295 00:18:20,280 --> 00:18:21,920 AND SO GIVEN ESPECIALLY IN THE 296 00:18:21,920 --> 00:18:24,240 GRAY AREA OF GIVING CONSENT, 297 00:18:24,240 --> 00:18:25,480 GIVEN THE FEATURES OF WILLIAMS 298 00:18:25,480 --> 00:18:26,920 SYNDROME WHICH INCLUDE RELATIVE 299 00:18:26,920 --> 00:18:28,120 STREMGHTS AND ORAL 300 00:18:28,120 --> 00:18:31,400 COMMUNICATIONS SOMETIMES THAT 301 00:18:31,400 --> 00:18:32,560 SUPERSEDE THEIR TRUE 302 00:18:32,560 --> 00:18:35,000 UNDERSTANDING OF THE EVENT, HIGH 303 00:18:35,000 --> 00:18:36,320 EMPATHY AND DISTRESS IN TERMS OF 304 00:18:36,320 --> 00:18:37,440 THINKING ABOUT OTHER PEOPLE THAT 305 00:18:37,440 --> 00:18:40,000 HAVE BEEN HURT IN OTHER 306 00:18:40,000 --> 00:18:41,240 SITUATIONS COMBINED WITH THEIR 307 00:18:41,240 --> 00:18:44,640 HIGH LEVELS OF ALTRUISM, SEEN IN 308 00:18:44,640 --> 00:18:45,600 OUR PEOPLE WITH WILLIAMS 309 00:18:45,600 --> 00:18:48,320 SYNDROME AS WELL AS THEIR 310 00:18:48,320 --> 00:18:49,080 CAREGIVERS, A BIOETHICS 311 00:18:49,080 --> 00:18:52,560 CONSULTATION CAN BE CALLED, TO 312 00:18:52,560 --> 00:18:54,480 DISCUSS THE ETHICS OF 313 00:18:54,480 --> 00:18:54,800 PARTICIPATION. 314 00:18:54,800 --> 00:18:56,200 THESE CONSULTS GO INTO THE WHOLE 315 00:18:56,200 --> 00:18:57,400 FROM THE GAMUT OF UNDERSTANDING 316 00:18:57,400 --> 00:19:00,320 THE NORMS AND POLICIES AND THE 317 00:19:00,320 --> 00:19:01,040 REGULATIONS THAT APPLY TO 318 00:19:01,040 --> 00:19:02,680 RESEARCH IN ALL INDIVIDUALS BUT 319 00:19:02,680 --> 00:19:03,960 IN THIS CASE, PARTICULARLY FOR 320 00:19:03,960 --> 00:19:06,680 THOSE WITH WILLIAMS SYNDROME. 321 00:19:06,680 --> 00:19:08,080 IN OUR DISCUSSION OF SEVERAL 322 00:19:08,080 --> 00:19:10,600 PATIENTS, 1 OF THE THINGS THAT 323 00:19:10,600 --> 00:19:12,800 CAME UP RAISED THE QUESTION OF 324 00:19:12,800 --> 00:19:14,200 HOW ALTRUISM IN WILLIAMS 325 00:19:14,200 --> 00:19:16,080 SYNDROME AND IN OTHER--AND IN 326 00:19:16,080 --> 00:19:17,360 OTHER CONDITIONS SHOULD BE 327 00:19:17,360 --> 00:19:22,840 REGARDED AS IT RELATES TO 328 00:19:22,840 --> 00:19:23,760 PARTICIPATION AND RESEARCH. 329 00:19:23,760 --> 00:19:26,160 SO IN THIS CASE, OUR APPROACH IN 330 00:19:26,160 --> 00:19:27,120 MOST CASES IS DETERMINED BEFORE 331 00:19:27,120 --> 00:19:28,640 WE SEE THE PATIENT AND THAT MOST 332 00:19:28,640 --> 00:19:32,520 OF THE FOLKS HAVE ALREADY AN 333 00:19:32,520 --> 00:19:35,000 ASSIGNED LAR, OR WE HAVE 334 00:19:35,000 --> 00:19:36,600 ASSIGNED A PROXY. 335 00:19:36,600 --> 00:19:41,680 IN THAT CASE, LEGAL STATUTE DOES 336 00:19:41,680 --> 00:19:45,360 NOT REQUIRE THAT THE DESIGNEE OR 337 00:19:45,360 --> 00:19:47,760 THE CONSENTER SEEK APPROVAL 338 00:19:47,760 --> 00:19:49,640 NECESSARILY FROM THE INDIVIDUAL 339 00:19:49,640 --> 00:19:50,480 WITH COGNITIVE IMPAIRMENT, 340 00:19:50,480 --> 00:19:53,080 HOWEVER, WE DO FIND THAT MOST OF 341 00:19:53,080 --> 00:19:55,200 THE CONSENTERS ON OUR STUDY AND 342 00:19:55,200 --> 00:19:56,680 THE ADULT PARTICIPANTS HAVE 343 00:19:56,680 --> 00:19:57,880 REALLY GOOD COMMUNICATION AND 344 00:19:57,880 --> 00:19:59,440 ARE WELL ALIGNED IN TERMS OF 345 00:19:59,440 --> 00:20:05,880 THEIR DEFINITION OF WHAT SORT OF 346 00:20:05,880 --> 00:20:06,320 ACCEPTABLE RISK IS. 347 00:20:06,320 --> 00:20:07,760 HOWEVER, BECAUSE THOSE THINGS 348 00:20:07,760 --> 00:20:08,560 ARE IMPERFECT, SOME OF THE 349 00:20:08,560 --> 00:20:10,560 THINGS THAT WE PUT IN PLACE FOR 350 00:20:10,560 --> 00:20:12,520 OUR STUDIES WHICH ARE NATURAL 351 00:20:12,520 --> 00:20:15,000 HISTORY ARE THE UTILIZATION 352 00:20:15,000 --> 00:20:17,800 WHERE ALL OF THE STUDY, PART OF 353 00:20:17,800 --> 00:20:18,840 OUR PROTOCOLS ARE OPTIONAL. 354 00:20:18,840 --> 00:20:23,080 AND IN THAT WAY, WE CAN USE AN 355 00:20:23,080 --> 00:20:25,840 ONGOING SYSTEM OF CONTINUOUS 356 00:20:25,840 --> 00:20:28,480 VERBAL ASCENT AS AN INDIVIDUAL 357 00:20:28,480 --> 00:20:30,840 ENTERS EACH ACTIVITY WITHIN A 358 00:20:30,840 --> 00:20:32,240 PROTOCOL TO DECIDE IF THIS IS 359 00:20:32,240 --> 00:20:34,320 SOMETHING THAT THEY DON'T WANT 360 00:20:34,320 --> 00:20:35,120 TO GO THROUGH. 361 00:20:35,120 --> 00:20:37,040 SO SOMETIMES THE IDEA OF AN MRI 362 00:20:37,040 --> 00:20:38,640 AT THE BEGINNING WHEN YOU'RE 363 00:20:38,640 --> 00:20:40,160 THINKING ABOUT HELPING PEOPLE 364 00:20:40,160 --> 00:20:40,640 SOUNDS GREAT. 365 00:20:40,640 --> 00:20:43,400 BUT WHEN FACED WITH THE ACTUAL 366 00:20:43,400 --> 00:20:46,040 MRI MACHINE, THAT THAT NO LONGER 367 00:20:46,040 --> 00:20:47,360 FEELS THE SAME WAY AND THAT 368 00:20:47,360 --> 00:20:50,520 ALLOWS US TO HAVE A CONTINUING 369 00:20:50,520 --> 00:20:51,840 AND ONGOING CONVERSATION WITH 370 00:20:51,840 --> 00:20:54,440 THE INDIVIDUALS INVOLVED ABOUT 371 00:20:54,440 --> 00:20:56,000 SORT OF PARTICIPATION IN 372 00:20:56,000 --> 00:20:58,240 INDIVIDUAL ASPECTS OF THE STUDY. 373 00:20:58,240 --> 00:21:00,680 SO THIS ALLOWS US TO SORT OF 374 00:21:00,680 --> 00:21:02,640 WORK BETWEEN THOSE SITUATIONS 375 00:21:02,640 --> 00:21:04,320 WHERE CAREGIVER AND THE 376 00:21:04,320 --> 00:21:05,880 INDIVIDUAL MAY FEEL DIFFERENTLY 377 00:21:05,880 --> 00:21:07,840 ABOUT PARTS OF PARTICIPATION 378 00:21:07,840 --> 00:21:10,800 FROM THAT PERSPECTIVE, IT 379 00:21:10,800 --> 00:21:11,960 DOESN'T NECESSARILY HELP US IN 380 00:21:11,960 --> 00:21:13,440 SITUATIONS WHERE AN INDIVIDUAL 381 00:21:13,440 --> 00:21:14,840 WITH WILLIAMS SYNDROME REALLY 382 00:21:14,840 --> 00:21:16,440 WANTED TO PARTICIPATE BUT WAS 383 00:21:16,440 --> 00:21:18,640 UNABLE TO BECAUSE THEIR 384 00:21:18,640 --> 00:21:20,240 CAREGIVER WAS UNINTERESTED. 385 00:21:20,240 --> 00:21:22,040 UNFORTUNATELY THOSE PEOPLE 386 00:21:22,040 --> 00:21:23,200 PROBABLY NEVER CONTACT US, 387 00:21:23,200 --> 00:21:25,080 BECAUSE IN MOST CASES, THE 388 00:21:25,080 --> 00:21:26,960 CONTACT IS MADE BY THE FAMILY 389 00:21:26,960 --> 00:21:28,640 MEMBER RATHER THAN THE 390 00:21:28,640 --> 00:21:29,680 INDIVIDUAL WITH WILLIAMS 391 00:21:29,680 --> 00:21:31,280 SYNDROME AND SO THOSE DECISIONS 392 00:21:31,280 --> 00:21:33,640 ARE OFTEN MADE BEFORE THEY WOULD 393 00:21:33,640 --> 00:21:35,680 SORT OF ENTER INTO OUR CARE. 394 00:21:35,680 --> 00:21:37,960 REGARDLESS, WE DO HAVE A SET OF 395 00:21:37,960 --> 00:21:40,040 PEOPLE WHO ARE VERY INTERESTED 396 00:21:40,040 --> 00:21:44,320 IN PARTICIPATING AND SOMETIMES 397 00:21:44,320 --> 00:21:46,040 OFFER OR ENDORSE A WILLINGNESS 398 00:21:46,040 --> 00:21:48,560 TO DO MORE THAN WHAT IS ON OUR 399 00:21:48,560 --> 00:21:58,080 CURRENT MINIMAL RISK PROTOCOLS. 400 00:21:58,080 --> 00:22:00,160 SO THE QUESTION IS COULD WE 401 00:22:00,160 --> 00:22:01,520 CONSIDER HIGHER RISK FOR PEOPLE 402 00:22:01,520 --> 00:22:04,560 WHO ARE TRULY HIGHER ALTRUISTIC. 403 00:22:04,560 --> 00:22:06,440 IN GENERAL, WHEN YOU LOOK AT THE 404 00:22:06,440 --> 00:22:08,080 LITERATURE WITH RARE DISEASE, 405 00:22:08,080 --> 00:22:10,680 IT'S WELL DESCRIBED THAT MANY 406 00:22:10,680 --> 00:22:12,000 INDIVIDUALS DISPLAY HIGH 407 00:22:12,000 --> 00:22:12,280 ALTRUISM. 408 00:22:12,280 --> 00:22:13,200 MANY OF THESE INDIVIDUALS AND 409 00:22:13,200 --> 00:22:16,320 THEIR FAMILIES HAVE COME THROUGH 410 00:22:16,320 --> 00:22:17,920 A LONG DIAGNOSTIC ODORS ESESY 411 00:22:17,920 --> 00:22:19,520 WHERE IT'S TAKEN THEM YEARS TO 412 00:22:19,520 --> 00:22:21,160 GET TO THEIR DIAGNOSIS. 413 00:22:21,160 --> 00:22:23,920 ONCE THE DIAGNOSIS IS MADE, THEY 414 00:22:23,920 --> 00:22:25,320 OFTEN FIND THEMSELVES IN 415 00:22:25,320 --> 00:22:27,240 COMMUNITIES WHERE THE KNOWLEDGE 416 00:22:27,240 --> 00:22:28,560 OF THEIR CONDITION IS RELATIVELY 417 00:22:28,560 --> 00:22:30,560 SMALL AND THEY CAN HAVE DELAY IN 418 00:22:30,560 --> 00:22:32,280 TERMS OF DIAGNOSIS AND 419 00:22:32,280 --> 00:22:33,240 IMPLEMENTATION OF THE 420 00:22:33,240 --> 00:22:35,960 APPROPRIATE THERAPIES FOR THEM. 421 00:22:35,960 --> 00:22:37,640 THEY ALSO PERCEIVE A RELATIVELY 422 00:22:37,640 --> 00:22:38,920 DEE CREASED LIMIT AND INTEREST 423 00:22:38,920 --> 00:22:40,840 FOR FOCUS ON THERAPIES FOR RARE 424 00:22:40,840 --> 00:22:42,560 DISEASES RELATIVE TO MORE COMMON 425 00:22:42,560 --> 00:22:42,840 1S. 426 00:22:42,840 --> 00:22:47,320 AND ALL OF THOSE THINGS SORT OF 427 00:22:47,320 --> 00:22:50,120 COME TOGETHER FOR THIS SORT OF 428 00:22:50,120 --> 00:22:50,960 DESCRIPTION OF FAMILIES SAYING 429 00:22:50,960 --> 00:22:52,400 WE'VE GOTTEN HERE, IT'S BEEN A 430 00:22:52,400 --> 00:22:54,040 ROUGH GO, WE REALLY LIKE TO MAKE 431 00:22:54,040 --> 00:22:56,560 THIS BETTER FOR THE NEXT PERSON. 432 00:22:56,560 --> 00:22:57,560 AND IN SEEING THAT SORT OF 433 00:22:57,560 --> 00:22:59,560 APPROACH TO TAKING CARE OF THE 434 00:22:59,560 --> 00:23:00,200 NEXT PEOPLE! 435 00:23:00,200 --> 00:23:01,400 EVEN OUTSIDE OF RARE DISEASE, 436 00:23:01,400 --> 00:23:03,640 AND EVEN IN PEOPLE WHO DON'T 437 00:23:03,640 --> 00:23:05,480 HAVE A DISEASE THEMSELVES AT 438 00:23:05,480 --> 00:23:11,800 ALL, THERE ARE SITUATIONS IN 439 00:23:11,800 --> 00:23:13,320 WHICH PEOPLE USING ALTRUISM WANT 440 00:23:13,320 --> 00:23:14,920 TO PARTICIPATE IN RESEARCH THAT 441 00:23:14,920 --> 00:23:16,680 REALLY DOESN'T HAVE ANY 442 00:23:16,680 --> 00:23:17,720 POTENTIAL BENEFIT TO THEM BUT 443 00:23:17,720 --> 00:23:20,800 MAY TOUCH PEOPLE THAT THEY CARE 444 00:23:20,800 --> 00:23:22,360 ABOUT OR DISEASE PHENOTYPES THAT 445 00:23:22,360 --> 00:23:22,920 THEY CARE ABOUT. 446 00:23:22,920 --> 00:23:24,880 SOME OF THOSE HAVE COME UP IN 447 00:23:24,880 --> 00:23:25,880 TERMS OF HIV CHALLENGE STUDIES 448 00:23:25,880 --> 00:23:30,120 OR IN PEOPLE WHO ARE INTERESTED 449 00:23:30,120 --> 00:23:32,520 IN PURSUING KIDNEY BIOPSIES EVEN 450 00:23:32,520 --> 00:23:33,480 THOUGH THEY'RE HEALTHY 451 00:23:33,480 --> 00:23:34,200 VOLUNTEERS BECAUSE THEY'RE 452 00:23:34,200 --> 00:23:36,080 INTERESTED IN BETTER TREATMENTS 453 00:23:36,080 --> 00:23:36,600 FOR THAT CONDITION. 454 00:23:36,600 --> 00:23:38,760 OBVIOUSLY THE POTENTIAL BENEFITS 455 00:23:38,760 --> 00:23:41,000 TO SORT OF LEANING INTO ALTRUISM 456 00:23:41,000 --> 00:23:44,040 IS THAT WE MAY BE ABLE TO GET 457 00:23:44,040 --> 00:23:44,880 MORE PEOPLE INVOLVED IN RESEARCH 458 00:23:44,880 --> 00:23:48,440 AND WITH MORE PEOPLE INVOLVED IN 459 00:23:48,440 --> 00:23:49,320 RESEARCH, MAKE FASTER PROGRESS 460 00:23:49,320 --> 00:23:53,480 IN SORT OF UNDERSTANDING THINGS 461 00:23:53,480 --> 00:23:55,120 WHICH COULD ULTIMATELY SAVE 462 00:23:55,120 --> 00:23:56,960 LIVES AND ALLOW MOTIVATED 463 00:23:56,960 --> 00:23:59,200 INDIVIDUALS TO CONTRIBUTE 464 00:23:59,200 --> 00:24:01,440 VALUABLE RESEARCH. 465 00:24:01,440 --> 00:24:02,360 OBVIOUSLY THE POTENTIAL RISKS IN 466 00:24:02,360 --> 00:24:03,440 THIS SITUATION ARE THE 467 00:24:03,440 --> 00:24:06,440 POSSIBILITIES OF COERCION OR 468 00:24:06,440 --> 00:24:07,680 EXPLOITATION IF USED 469 00:24:07,680 --> 00:24:08,120 INAPPROPRIATELY. 470 00:24:08,120 --> 00:24:10,000 AND SO OUR QUESTIONS HERE FOR 471 00:24:10,000 --> 00:24:13,400 THE DISCUSS ANT ARE RELATED TO 472 00:24:13,400 --> 00:24:17,080 HOW WE SHOULD APPROACH ALTRUISM 473 00:24:17,080 --> 00:24:19,040 IN ALL INDIVIDUALS, NOT SORT OF 474 00:24:19,040 --> 00:24:20,440 LIMITED TO WILLIAMS SYNDROME. 475 00:24:20,440 --> 00:24:22,880 IT IS ACCEPTABLE TO APPEAL TO 476 00:24:22,880 --> 00:24:26,160 ALTRUISM IN RESEARCH AS WE 477 00:24:26,160 --> 00:24:27,520 TALKED ABOUT AT THE FRONT? 478 00:24:27,520 --> 00:24:30,560 IS IT POSSIBLE TO EXPLOIT PEOPLE 479 00:24:30,560 --> 00:24:34,600 BASED ON ALTRUISM? 480 00:24:34,600 --> 00:24:36,400 DOES THE PRESENCE OF ALTRUISM 481 00:24:36,400 --> 00:24:39,360 ALLOW US TO SORT OF PUSH THE 482 00:24:39,360 --> 00:24:40,160 RISKINESS OF RESEARCH FOR THOSE 483 00:24:40,160 --> 00:24:42,920 WHO ARE WILLING TO DO SO? 484 00:24:42,920 --> 00:24:44,920 AND DOES IT MATTER IF THE 485 00:24:44,920 --> 00:24:46,400 ALTRUISM IS ASSOCIATED WITH 486 00:24:46,400 --> 00:24:47,160 THEIR MEDICAL CONDITION, EITHER 487 00:24:47,160 --> 00:24:49,200 BECAUSE IT IS RARE OR BECAUSE IN 488 00:24:49,200 --> 00:24:50,960 THIS CASE, THE GENETICS OF THE 489 00:24:50,960 --> 00:24:53,880 CONDITION MIGHT MAKE THEM MORE 490 00:24:53,880 --> 00:24:59,000 LIKELY TO ACT IN AN ALTRUE ISTIC 491 00:24:59,000 --> 00:25:01,960 WAY, ALSO DOES THE ACCEPTABLE OF 492 00:25:01,960 --> 00:25:03,000 APPEALS TO ALTRUISM CHANGE 493 00:25:03,000 --> 00:25:04,920 DEPENDING ON THE ABILITY OF THAT 494 00:25:04,920 --> 00:25:05,720 INDIVIDUAL TO CONSENT FOR 495 00:25:05,720 --> 00:25:06,160 THEMSELVES. 496 00:25:06,160 --> 00:25:08,080 SO AS WE SAID, THIS IS SORT OF A 497 00:25:08,080 --> 00:25:09,720 MOUTHFUL IN TERMS OF LOTS OF 498 00:25:09,720 --> 00:25:11,160 QUESTIONS THAT WE PUT OUT THERE, 499 00:25:11,160 --> 00:25:13,160 SO, I'M GOING TO STOP AT THIS 500 00:25:13,160 --> 00:25:15,000 POINT AND TO GIVE OUR DISCUSS 501 00:25:15,000 --> 00:25:16,640 ANT A GOOD AMOUNT OF TIME TO 502 00:25:16,640 --> 00:25:19,000 SHARE SOME ANSWERS WITH US. 503 00:25:19,000 --> 00:25:21,120 SO, THANK YOU. 504 00:25:21,120 --> 00:25:25,960 >>THANK YOU BETH FOR A 505 00:25:25,960 --> 00:25:26,640 WONDERFULLY INSIGHTFUL 506 00:25:26,640 --> 00:25:28,720 PRESENTATION AND FOR SHARE BEING 507 00:25:28,720 --> 00:25:29,360 VERY INTERESTING LITERATURE ON 508 00:25:29,360 --> 00:25:31,320 THIS AND I'VE LEARNED A GREAT 509 00:25:31,320 --> 00:25:32,600 DEAL FROM IT, CAN YOU HEAR ME 510 00:25:32,600 --> 00:25:35,720 WELL AND SEE MY SLIDES? 511 00:25:35,720 --> 00:25:37,360 >>LOOKS AND SOUNDS GOOD, ALEX. 512 00:25:37,360 --> 00:25:37,920 >>VERY GOOD. 513 00:25:37,920 --> 00:25:40,360 SO I HAVE NO CONFLICTS OF 514 00:25:40,360 --> 00:25:43,360 INTEREST WITH RESPECT TO THE 515 00:25:43,360 --> 00:25:45,320 PRESENTATION AND MY LEARNING 516 00:25:45,320 --> 00:25:47,880 OBJECTIVE OR OUR LEARNING 517 00:25:47,880 --> 00:25:49,640 OBJECTIVE IS SIMPLY TO THINK 518 00:25:49,640 --> 00:25:51,520 ABOUT SOME POSSIBLE WAYS OF 519 00:25:51,520 --> 00:25:53,920 ANSWERING THE KEY QUESTIONS THAT 520 00:25:53,920 --> 00:25:56,040 BETH JUST RAISED ABOUT THE 521 00:25:56,040 --> 00:25:57,360 ETHICS OF ALTRUISM IN THE 522 00:25:57,360 --> 00:25:58,600 CONTEXT OF CLINICAL TRIALS AND 523 00:25:58,600 --> 00:26:01,760 ESPECIALLY IN THE CONTEXT OF 524 00:26:01,760 --> 00:26:05,400 INDIVIDUALS WITH MILD TO 525 00:26:05,400 --> 00:26:07,400 MODERATE INTELLECTUAL DISABILITY 526 00:26:07,400 --> 00:26:11,920 AND THE PATTERN OF ALTRUISTIC 527 00:26:11,920 --> 00:26:13,920 BEHAVIOR THAT BETH HAS EXPLAINED 528 00:26:13,920 --> 00:26:16,560 ARE ASSOCIATED WITH WILLIAMS 529 00:26:16,560 --> 00:26:16,840 SYNDROME. 530 00:26:16,840 --> 00:26:18,520 SO WHAT I WOULD LIKE TO DO IS I 531 00:26:18,520 --> 00:26:21,080 WILL END BY GIVING SOME QUICK 532 00:26:21,080 --> 00:26:22,480 ANSWERS TO BETH'S QUESTIONS BUT 533 00:26:22,480 --> 00:26:25,760 I WANT WORK TOWARDS THAT IN 534 00:26:25,760 --> 00:26:29,800 SEVERAL STEPS, THE FIRST STEP IS 535 00:26:29,800 --> 00:26:31,000 TO CONSIDER HOW WE SHOULD THINK 536 00:26:31,000 --> 00:26:34,160 OF THE WAYS IN WHICH ALTRUISTIC 537 00:26:34,160 --> 00:26:38,920 MOTIVATION AND PERHAPS MORE 538 00:26:38,920 --> 00:26:39,440 BROADLY NONSELF-MOTIVATED 539 00:26:39,440 --> 00:26:41,680 MOTIVATION CAN CONTRIBUTE TO 540 00:26:41,680 --> 00:26:45,080 POTENTIAL RESEARCH SUBJECT'S 541 00:26:45,080 --> 00:26:45,400 WELL BEING. 542 00:26:45,400 --> 00:26:49,400 NOW I THINK IT'S VERY WELL 543 00:26:49,400 --> 00:26:50,920 ACCEPTED THAT IN ALMOST 544 00:26:50,920 --> 00:26:52,360 EVERYONE'S LIFE, THERE ARE 545 00:26:52,360 --> 00:26:54,880 ALTRUISTIC TIES OF LOVE AND 546 00:26:54,880 --> 00:26:56,160 FRIENDSHIP TO OTHERS, WE MAKE 547 00:26:56,160 --> 00:26:57,240 OUR WELL BEING DEPEND ON THE 548 00:26:57,240 --> 00:26:59,280 WELL BEING OF OUR INTIMATES IN A 549 00:26:59,280 --> 00:26:59,960 VARIETY OF WAYS. 550 00:26:59,960 --> 00:27:03,480 SO FOR EXAMPLE, I'M THE FATHER 551 00:27:03,480 --> 00:27:05,320 OF TWIN BOYS, THEY'RE VERY YOUNG 552 00:27:05,320 --> 00:27:07,720 BUT THEY'RE BOND IS EXTREMELY 553 00:27:07,720 --> 00:27:10,400 STRONG AND IF 1 IS HURT, THAT 554 00:27:10,400 --> 00:27:11,560 GREATLY DISTRESSS THE OTHER AND 555 00:27:11,560 --> 00:27:16,880 FOR EXAMPLE, IF THERE WAS EVER A 556 00:27:16,880 --> 00:27:19,040 NEED TO SAVE 1 THROUGH A MEDICAL 557 00:27:19,040 --> 00:27:21,160 INTERVENTION THAT WOULD CAUSE 558 00:27:21,160 --> 00:27:24,520 SOME PAIN OR DISTRESS TO THE 559 00:27:24,520 --> 00:27:28,240 OTHER, I'M SURE THAT I WOULD 560 00:27:28,240 --> 00:27:30,760 VERY LIKELY REGARD IT AS 561 00:27:30,760 --> 00:27:32,280 BENEFITING EVEN THE 1 WHO WOULD 562 00:27:32,280 --> 00:27:33,720 BE UNDERGOING THE PAINFUL 563 00:27:33,720 --> 00:27:36,680 PROCEDURE FOR THE SAKE OF HIS 564 00:27:36,680 --> 00:27:37,720 BROTHER MERELY BECAUSE HIS 565 00:27:37,720 --> 00:27:38,960 BROTHER'S WELL BEING IS SUCH A 566 00:27:38,960 --> 00:27:42,760 BIG PART OF WHAT MAKES HIS LIFE 567 00:27:42,760 --> 00:27:43,160 GO WELL. 568 00:27:43,160 --> 00:27:44,880 BUT I'M ASSUMING IN THIS CONTEXT 569 00:27:44,880 --> 00:27:48,200 THAT THIS FORM OF DEPENDENCE ON 570 00:27:48,200 --> 00:27:49,520 OUR INTIMATE'S WELL BEING IS NOT 571 00:27:49,520 --> 00:27:51,240 NORMALLY AN ISSUE IN THE CHOICE 572 00:27:51,240 --> 00:27:52,440 OF BECOMING A RESEARCH SUBJECT 573 00:27:52,440 --> 00:27:57,480 BECAUSE THOSE WHO MIGHT BE 574 00:27:57,480 --> 00:27:59,960 BENEFITED ARE TYPICALLY 575 00:27:59,960 --> 00:28:01,600 STRANGERS, PERHAPS PEOPLE WITH A 576 00:28:01,600 --> 00:28:02,880 SIMILAR CONDITION THAT 1 HAS, SO 577 00:28:02,880 --> 00:28:05,320 1 MIGHT FEEL THE SENSE OF 578 00:28:05,320 --> 00:28:08,000 SOLDART--DARTHITY WITH ALL THOSE 579 00:28:08,000 --> 00:28:14,360 OTHERS BUT IT'S NOT THIS TYPE OF 580 00:28:14,360 --> 00:28:14,840 DEPENDENCE. 581 00:28:14,840 --> 00:28:18,800 SO REALLY WHAT WE'RE AFTER IS 582 00:28:18,800 --> 00:28:22,920 THINKING ABOUT PEOPLE WHO HAVE 583 00:28:22,920 --> 00:28:25,080 MORE GENERALIZED ALTRUISM OR 584 00:28:25,080 --> 00:28:28,040 THINKING ABOUT ADVANCEMENT OF 585 00:28:28,040 --> 00:28:29,120 KNOWLEDGE AND THEY MAY WANT TO 586 00:28:29,120 --> 00:28:30,680 BE HELPFUL TO OTHERS IN GENERAL. 587 00:28:30,680 --> 00:28:31,880 THEY WANT TO CONTRIBUTE TO 588 00:28:31,880 --> 00:28:35,840 IMPROVING THE LIVES OF OTHERS 589 00:28:35,840 --> 00:28:36,880 WITH SPECIFIC DISEASES, 590 00:28:36,880 --> 00:28:38,600 SOMETIMES THOSE OF FAMILY 591 00:28:38,600 --> 00:28:42,560 MEMBERS OR THOSE THAT THEY 592 00:28:42,560 --> 00:28:44,520 THEMSELVES EXPERIENCE. 593 00:28:44,520 --> 00:28:46,240 OR, SIMPLY ADVANCE KNOWLEDGE OR 594 00:28:46,240 --> 00:28:47,560 SOME COMBINATION OF SUCH 595 00:28:47,560 --> 00:28:47,800 MOTIVES. 596 00:28:47,800 --> 00:28:51,600 SO THAT'S THE TYPE OF ALTRUISTIC 597 00:28:51,600 --> 00:28:56,440 AND MOTIVATIONS WE SHOULD FOCUS 598 00:28:56,440 --> 00:28:56,680 ON. 599 00:28:56,680 --> 00:29:00,080 NOW HOW DOES HAVING SUCH A 600 00:29:00,080 --> 00:29:00,920 MOTIVATION CONTRIBUTE, HELP 601 00:29:00,920 --> 00:29:02,840 DETERMINE A PERSON'S WELL BEING. 602 00:29:02,840 --> 00:29:05,760 WELL, TAKE A PERSON WHO HAS A 603 00:29:05,760 --> 00:29:08,720 STEADY, AND RELATIVELY 604 00:29:08,720 --> 00:29:09,600 CONSIDERED GENERAL ALTRUISTIC OR 605 00:29:09,600 --> 00:29:12,720 OTHER INTERESTED AIMS, THAT'S TO 606 00:29:12,720 --> 00:29:15,200 SAY, THEY, OVER A LONG PERIOD OF 607 00:29:15,200 --> 00:29:19,920 TIME, AND IN A VARIETY OF 608 00:29:19,920 --> 00:29:21,080 CONTEXT EXPRESS A COMMITMENT TO 609 00:29:21,080 --> 00:29:23,800 SAY IMPROVING THE LIVES OF 610 00:29:23,800 --> 00:29:26,800 PEOPLE WITH WILLIAMS SYNDROME OR 611 00:29:26,800 --> 00:29:29,760 IMPROVING OUR UNDERSTANDING OF 612 00:29:29,760 --> 00:29:32,040 THE CONDITION AND LET'S IMAGINE 613 00:29:32,040 --> 00:29:35,640 THAT THESE STUDYING RELATIVELY 614 00:29:35,640 --> 00:29:36,880 CONSIDERED ALTRUISTIC AIMS ARE 615 00:29:36,880 --> 00:29:38,600 BASED REALLY ON THEIR 616 00:29:38,600 --> 00:29:39,760 ATTACHMENTS AND THEIR VALUES, 617 00:29:39,760 --> 00:29:42,280 THE THINGS THAT YOU CAN SEE 618 00:29:42,280 --> 00:29:44,760 INFUSE THEIR DAILY LIFE AND THE 619 00:29:44,760 --> 00:29:46,080 WAY THEY TALK ABOUT WHAT THEY 620 00:29:46,080 --> 00:29:49,040 WANT TO ACHIEVE IN LIFE. 621 00:29:49,040 --> 00:29:54,360 AND MORE OVER, IT'S NOT JUST 622 00:29:54,360 --> 00:29:56,880 TALK THAT THESE AIMS STEADILY 623 00:29:56,880 --> 00:29:58,160 GUIDE THEIR BEHAVIOR IN A 624 00:29:58,160 --> 00:29:58,880 VARIETY OF CONTEXT. 625 00:29:58,880 --> 00:30:01,520 SO THIS COULD JUST BE EXPRESSING 626 00:30:01,520 --> 00:30:02,640 A REALLY HELPFULNESS TOWARDS 627 00:30:02,640 --> 00:30:06,760 PEOPLE AROUND YOU, THE TYPE OF 628 00:30:06,760 --> 00:30:10,080 HELPFULNESS THAT BETH CITED IN 629 00:30:10,080 --> 00:30:11,320 THE DISCUSSION OF PEOPLE WITH 630 00:30:11,320 --> 00:30:13,160 WILLIAMS SYNDROME AND WHAT'S 631 00:30:13,160 --> 00:30:14,480 IMPORTANT IS IT'S NOT JUST DUE 632 00:30:14,480 --> 00:30:17,240 TO A SPECIFIC CONTEXT BUT IT'S 633 00:30:17,240 --> 00:30:18,880 KIND OF A STEADY DISPOSITION TO 634 00:30:18,880 --> 00:30:27,480 WANT TO HELP OTHERS THAT ALSO 635 00:30:27,480 --> 00:30:29,720 GUIDES PEOPLE'S BEHAVIOR. 636 00:30:29,720 --> 00:30:31,440 NOW IN SUCH CONTEXT THE PERSON 637 00:30:31,440 --> 00:30:34,120 WHO HAS THIS DESIRES OR AIMS 638 00:30:34,120 --> 00:30:38,640 THEIR SUCCESS OF ACHIEVING THESE 639 00:30:38,640 --> 00:30:42,040 AIMS SHOULD IMPROVE, THEIR 640 00:30:42,040 --> 00:30:44,000 SUCCESS WOULD COUNT AS WELL 641 00:30:44,000 --> 00:30:45,480 BEING, KIND OF AS A GBL TRUTH 642 00:30:45,480 --> 00:30:47,360 FOR WELL BEING IS A PERSON'S 643 00:30:47,360 --> 00:30:49,200 SUCCESS THAT THEY'RE STEADILY 644 00:30:49,200 --> 00:30:53,320 HELD AND PURSUED VALUABLE AIMS 645 00:30:53,320 --> 00:30:54,440 CONTRIBUTES TO THE WELL BEING, 646 00:30:54,440 --> 00:30:58,560 THIS POINT IS MADE IN AN ARTICLE 647 00:30:58,560 --> 00:31:00,960 ON ALTRUISM IN CLINICAL 648 00:31:00,960 --> 00:31:03,720 RESEARCH, BUT IT'S ALSO, I THINK 649 00:31:03,720 --> 00:31:05,800 A VERY GENERAL FRAME THAT FITS 650 00:31:05,800 --> 00:31:08,400 LOTS OF DIFFERENT CONCEPTIONS OF 651 00:31:08,400 --> 00:31:09,240 WELL BEING. 652 00:31:09,240 --> 00:31:12,040 IT FITS WHAT'S KNOWN AS 653 00:31:12,040 --> 00:31:13,120 PREFERENCE BASED CONCEPTIONS OF 654 00:31:13,120 --> 00:31:14,320 WELL BEING, BECAUSE THOSE THAT 655 00:31:14,320 --> 00:31:17,680 SAY MERELY BECAUSE I HAVE A 656 00:31:17,680 --> 00:31:18,760 STEADY OR CONSIDERED PREVENTIVE 657 00:31:18,760 --> 00:31:19,800 FERENCE FOR SOMETHING, GETTING 658 00:31:19,800 --> 00:31:23,320 THAT THING CONTRIBUTES TO MY 659 00:31:23,320 --> 00:31:25,160 WELL BEING, BUT IT ALSO FITS 660 00:31:25,160 --> 00:31:30,200 MUCH MORE WHAT'S OFTEN CALLED 661 00:31:30,200 --> 00:31:32,600 OBJECTIVE LISTS OR GOING BACK TO 662 00:31:32,600 --> 00:31:33,440 ARISTOTLE WHO THOUGHT IT'S 663 00:31:33,440 --> 00:31:35,920 FITTING FOR A RATIONAL BEING, TO 664 00:31:35,920 --> 00:31:37,000 PURSUE VALUABLE ENDS AND THEN TO 665 00:31:37,000 --> 00:31:39,400 HAVE THE DEGREE OF SUCCESS AT 666 00:31:39,400 --> 00:31:43,040 THE PURSUIT OF THESE ENDS TO 667 00:31:43,040 --> 00:31:47,040 DETERMINE IN PART AT LEAST THEIR 668 00:31:47,040 --> 00:31:47,840 WELL BEING. 669 00:31:47,840 --> 00:31:51,600 AND I THINK VERY IMPORTANTLY, 670 00:31:51,600 --> 00:31:53,760 THIS CLAIM ABOUT WELL BEING IS 671 00:31:53,760 --> 00:31:57,000 TRUE EVEN FOR THOSE WITH MILD TO 672 00:31:57,000 --> 00:31:59,240 MODERATE INTELLECTUAL 673 00:31:59,240 --> 00:32:00,840 DISABILITY, IT'S ALSO TRUE FOR 674 00:32:00,840 --> 00:32:02,200 YOUNG CHILDREN, I THINK, IT'S 675 00:32:02,200 --> 00:32:05,760 VERY CLEAR TO ME, MY BOYS ARE 676 00:32:05,760 --> 00:32:08,320 NEARLY 3 BUT NOT YET 3, THAT 677 00:32:08,320 --> 00:32:11,960 THEY ALREADY HAVE THE CAPACITY 678 00:32:11,960 --> 00:32:14,800 TO VALUE CERTAIN OTHERS AND 679 00:32:14,800 --> 00:32:17,000 THEIR RELATIONSHIPS, DEVELOP 680 00:32:17,000 --> 00:32:18,040 FRIENDSHIPS, CLOSE TACHMENTS AND 681 00:32:18,040 --> 00:32:21,600 ALSO NOT TO TAKE STEPS TO IN 682 00:32:21,600 --> 00:32:23,120 SMALL WAYS IMPROVE THE LIVES OF 683 00:32:23,120 --> 00:32:27,280 OTHERS, THEY HAVE SUCH A STUDY 684 00:32:27,280 --> 00:32:29,480 DISPOSITION, MORE OVER NOT EVEN 685 00:32:29,480 --> 00:32:31,240 A 3 YEAR-OLD YET CAN HAVE SUCH A 686 00:32:31,240 --> 00:32:32,560 DISPOSITION AND HAVE SUCH VALUES 687 00:32:32,560 --> 00:32:36,080 WHICH I THINK THE SUCCESS OF 688 00:32:36,080 --> 00:32:38,520 THESE THEIR AIMS IN THIS REGARD 689 00:32:38,520 --> 00:32:40,120 CAN CONTRIBUTE TO THE GOODNESS 690 00:32:40,120 --> 00:32:41,800 OF THEIR LIFE, IT'S CLEAR THAT 691 00:32:41,800 --> 00:32:46,160 THOSE WITH MILD TO MODERATE 692 00:32:46,160 --> 00:32:48,280 INTELLECTUAL DISABILITY CAN ALSO 693 00:32:48,280 --> 00:32:50,040 HAVE THEIR WELL BEING IMPROVED 694 00:32:50,040 --> 00:32:55,000 IN THIS WAY AND THERE'S ALSO 695 00:32:55,000 --> 00:32:58,000 VERY INTERESTING WORK BY 696 00:32:58,000 --> 00:32:59,680 JAWORSKA, ON PEOPLE WITH 697 00:32:59,680 --> 00:33:04,120 ADVANCED DEMENTIA IN WHICH HE 698 00:33:04,120 --> 00:33:06,040 EMPHASIZES THERE SUCCESS AT 699 00:33:06,040 --> 00:33:08,240 THEIR AIMS INCLUDING OTHER 700 00:33:08,240 --> 00:33:10,880 ORIENTED AIMS, OR LOTS OF 701 00:33:10,880 --> 00:33:13,080 INTERESTED AIMS, IS QUITE 702 00:33:13,080 --> 00:33:15,240 PERSWAIZIVELY CAN BE PARENT OF 703 00:33:15,240 --> 00:33:18,800 THE GOOD LIFE FOR THEM. 704 00:33:18,800 --> 00:33:20,720 SO WHAT IS--WHAT FOLLOWS I THINK 705 00:33:20,720 --> 00:33:24,040 IS THAT IN ASSESSING THE IMPACT 706 00:33:24,040 --> 00:33:28,440 OF PARTICIPATION IN THE STUDY ON 707 00:33:28,440 --> 00:33:29,840 ALTRUISTIC PARTICIPANTS WELL 708 00:33:29,840 --> 00:33:33,040 BEING, WE SHOULD CONSIDER NOT 709 00:33:33,040 --> 00:33:35,560 MERELY THE HEALTH RELATED WELL 710 00:33:35,560 --> 00:33:37,800 BEING IMPACTS SUCH AS THE HEALTH 711 00:33:37,800 --> 00:33:39,880 RISKS OR BENEFITS STUFF, I COME 712 00:33:39,880 --> 00:33:42,520 FROM BEING INVOLVED IN THE 713 00:33:42,520 --> 00:33:42,760 RESEARCH. 714 00:33:42,760 --> 00:33:45,480 MORE BENEFITS THAT MAY COME FROM 715 00:33:45,480 --> 00:33:46,760 KNOWING MORE ABOUT THEIR 716 00:33:46,760 --> 00:33:49,360 CONDITION OR THEIR PERSONAL 717 00:33:49,360 --> 00:33:52,440 SITUATION, BUT ALSO, THE 718 00:33:52,440 --> 00:33:57,520 SUCCESS, THE DEGREE OF SUCCESS 719 00:33:57,520 --> 00:33:58,720 OR SUCCESS THAT PARTICIPATING IN 720 00:33:58,720 --> 00:34:03,120 THIS STUDY WILL HAVE, FOR THEIR 721 00:34:03,120 --> 00:34:03,320 AIMS. 722 00:34:03,320 --> 00:34:06,800 SO LET ME MAKE THIS VIVID BY 723 00:34:06,800 --> 00:34:09,040 VARYING A CASE THAT APPEARS IN A 724 00:34:09,040 --> 00:34:12,480 PAPER BY DANA HOWARD AND DAVE 725 00:34:12,480 --> 00:34:16,440 WENDLER AND IT'S A FICTIONAL 726 00:34:16,440 --> 00:34:19,360 CASE, IT'S CALLED THEIR SAMANTHA 727 00:34:19,360 --> 00:34:19,560 CASE. 728 00:34:19,560 --> 00:34:22,080 THE CASE OF A 22 YEAR-OLD WITH 729 00:34:22,080 --> 00:34:23,400 WILLIAMS SYNDROME WHO'S NOT 730 00:34:23,400 --> 00:34:24,560 FULLY COMPETENT TO MAKE 731 00:34:24,560 --> 00:34:28,720 DECISIONS TO ENROLL IN MEDICAL 732 00:34:28,720 --> 00:34:29,520 RESEARCH HERSELF LIKE THAT IS 733 00:34:29,520 --> 00:34:33,120 THE CASE OF MOST POTENTIAL 734 00:34:33,120 --> 00:34:33,640 PARTICIPANTS. 735 00:34:33,640 --> 00:34:35,360 SHE'S INVITED TO PARTICIPATE IN 736 00:34:35,360 --> 00:34:39,560 A STUDY, WHICH USING FMRI, 737 00:34:39,560 --> 00:34:41,520 RESEARCHERS PROPOSE TO ASSESS 738 00:34:41,520 --> 00:34:43,480 WHETHER THERE ARE NEUROLOGICAL 739 00:34:43,480 --> 00:34:44,960 DIFFERENCES BETWEEN HOW PEOPLE 740 00:34:44,960 --> 00:34:47,000 WITH WILLIAMS SYNDROME RESPOND 741 00:34:47,000 --> 00:34:48,080 TO THREATENING FACIAL 742 00:34:48,080 --> 00:34:49,920 EXPRESSIONS AND THREATENING OR 743 00:34:49,920 --> 00:34:55,640 OTHERWISE DISTRESSING SCENES. 744 00:34:55,640 --> 00:34:57,000 LET'S IMAGINE, I'M ADDING THIS 745 00:34:57,000 --> 00:35:03,400 TO THE CASE AS PRESENTED IN 746 00:35:03,400 --> 00:35:04,640 HOWARD WENDLER, LET'S IMAGINE 747 00:35:04,640 --> 00:35:06,680 THIS WILL CAUSE HER TEMPORARY 748 00:35:06,680 --> 00:35:08,440 MODERATE TO MILD ANXIETY AND 749 00:35:08,440 --> 00:35:09,600 THIS PARTICIPATION IN THIS STUDY 750 00:35:09,600 --> 00:35:11,120 WILL HAVE NO HEALTH BENEFIT TO 751 00:35:11,120 --> 00:35:11,280 HER. 752 00:35:11,280 --> 00:35:13,600 SO 1 THING I LEARNED FROM BETH'S 753 00:35:13,600 --> 00:35:21,520 PAPERS ON THE TOPIC IS THAT 754 00:35:21,520 --> 00:35:22,480 GENERALIZED ANXIETY IS VERY 755 00:35:22,480 --> 00:35:25,080 COMMON AMONG PEOPLE WITH 756 00:35:25,080 --> 00:35:26,440 WILLIAMS SYNDROME SO THEY DON'T 757 00:35:26,440 --> 00:35:28,960 ALWAYS HAVE THAT BUT THEY'RE 758 00:35:28,960 --> 00:35:30,600 ALSO QUITE ANXIOUS. 759 00:35:30,600 --> 00:35:31,760 IMAGINE THAT PARTICIPATING IN 760 00:35:31,760 --> 00:35:34,600 THIS STUDY WILL IMPACT THIS 761 00:35:34,600 --> 00:35:37,440 ANXIETY IN SOMEWHAT NEGATIVE WAY 762 00:35:37,440 --> 00:35:38,920 BECAUSE ESPECIALLY THE 763 00:35:38,920 --> 00:35:41,440 THREATENING SCENES OR SCENES OF 764 00:35:41,440 --> 00:35:43,560 HARMS TO OTHERS THAT WILL BE 765 00:35:43,560 --> 00:35:48,560 PRESENTED WITH WILL BE 766 00:35:48,560 --> 00:35:49,240 DISTRUSTED. 767 00:35:49,240 --> 00:35:50,440 NOW, SUPPOSE, THAT THE TRUSTEE, 768 00:35:50,440 --> 00:35:54,200 THE PERSON WHO HAS TO OFFER THE 769 00:35:54,200 --> 00:35:57,160 CONSENT FOR ENROLLMENT IN THE 770 00:35:57,160 --> 00:35:58,560 STUDY KNOWS SAMANTHA, SOMEONE 771 00:35:58,560 --> 00:36:00,760 WITH A STEADY DISPOSITION TO 772 00:36:00,760 --> 00:36:03,920 HELP RECOLLECTS AND CURIOSITY 773 00:36:03,920 --> 00:36:05,320 ABOUT HER CONDITION, NOT MERELY 774 00:36:05,320 --> 00:36:07,400 FOR HER OWN SAKE BUT FOR THE 775 00:36:07,400 --> 00:36:10,880 SAKE OF EVERYONE WITH WILLIAMS 776 00:36:10,880 --> 00:36:11,280 SYNDROME. 777 00:36:11,280 --> 00:36:13,520 I THINK IT FOLLOWS FROM WHAT 778 00:36:13,520 --> 00:36:14,840 I'VE SAID BEFORE THAT IF THE 779 00:36:14,840 --> 00:36:17,280 RESEARCH HAS A REASONABLY 780 00:36:17,280 --> 00:36:17,880 EXPECTATION OF GENERATING 781 00:36:17,880 --> 00:36:19,280 KNOWLEDGE THAT WILL EVENTUALLY 782 00:36:19,280 --> 00:36:20,200 CONTRIBUTE TO IMPROVING THE 783 00:36:20,200 --> 00:36:22,480 LIVES OF THOSE WITH WILLIAMS 784 00:36:22,480 --> 00:36:25,440 SYNDROME, AND IF THE DOWN SIDES 785 00:36:25,440 --> 00:36:26,720 INVOLVED ARE MODERATE AS WE'RE 786 00:36:26,720 --> 00:36:28,320 IMAGINING, I THINK THEY ARE, 787 00:36:28,320 --> 00:36:34,240 THEN THIS MAY PROVIDE A BASIS TO 788 00:36:34,240 --> 00:36:37,360 CUT PARTICIPATING IN RESEARCH AS 789 00:36:37,360 --> 00:36:38,040 WELL AS PROMOTING SAMANTHA'S 790 00:36:38,040 --> 00:36:38,600 WELL BEING. 791 00:36:38,600 --> 00:36:41,080 WE SHOULDN'T FOCUS NARROWLY ON 792 00:36:41,080 --> 00:36:43,360 WHATEVER STRESS OR LOSS OF TIME 793 00:36:43,360 --> 00:36:47,120 SHE MAY FACE BUT ALSO BY THE WAY 794 00:36:47,120 --> 00:36:48,160 IN WHICH THIS STUDY MAY 795 00:36:48,160 --> 00:36:51,040 CONTRIBUTE TO HER ACHIEVING HER 796 00:36:51,040 --> 00:36:53,120 AIMS AND REALIZING HER VALUES AT 797 00:36:53,120 --> 00:36:55,800 LEAST IN THE MODEST WAY IN 798 00:36:55,800 --> 00:36:56,120 WORLD. 799 00:36:56,120 --> 00:36:58,480 THAT WOULD BE GOOD FOR HER. 800 00:36:58,480 --> 00:37:02,720 NOW I WANT TO MOVE BEYOND THIS 801 00:37:02,720 --> 00:37:04,960 POTENTIAL WAY IN WHICH IN 802 00:37:04,960 --> 00:37:05,920 ALTRUISTIC INDIVIDUALS 803 00:37:05,920 --> 00:37:07,120 CONTRIBUTING TO THE GOOD OF ALL 804 00:37:07,120 --> 00:37:08,760 THOSE OR THE ADVANCEMENT OF 805 00:37:08,760 --> 00:37:15,120 SCIENCE, MAY BE GOOD FOR THEM. 806 00:37:15,120 --> 00:37:18,560 BECAUSE I THINK OUR ABILITY TO 807 00:37:18,560 --> 00:37:20,240 ADVANCE OUR VALUABLE LONG 808 00:37:20,240 --> 00:37:21,120 SELF-INTERESTED GOALS IS NOT 809 00:37:21,120 --> 00:37:23,040 MERELY GOOD FOR US IN THE NARROW 810 00:37:23,040 --> 00:37:26,600 SENSE OF CONTRIBUTING TO OUR 811 00:37:26,600 --> 00:37:29,760 WELL BEING, IT'S ALSO IMPORTANT 812 00:37:29,760 --> 00:37:33,520 BECAUSE EACH OF US IS OWED AN 813 00:37:33,520 --> 00:37:35,720 OPPORTUNITY TO PURSUE OUR 814 00:37:35,720 --> 00:37:40,760 ALTRUISTIC OR OTHER 815 00:37:40,760 --> 00:37:42,040 NONSELF-INTERESTED GOALS SIMPLY 816 00:37:42,040 --> 00:37:43,880 BECAUSE WE'RE AGENTS WHO HAVE 817 00:37:43,880 --> 00:37:45,800 THIS VALUABLE WAY OF PURSUING 818 00:37:45,800 --> 00:37:47,320 OUR AIMS IN THE WORLD AND A LIFE 819 00:37:47,320 --> 00:37:49,200 IN WHICH WE ONLY HAVE THE 820 00:37:49,200 --> 00:37:52,560 OPPORTUNITY TO PURSUE OUR OWN 821 00:37:52,560 --> 00:37:56,760 WELL BEING, IS IN A SENSE QUITE 822 00:37:56,760 --> 00:38:05,240 A LIMITED LINE AND WE PURSUING 823 00:38:05,240 --> 00:38:07,640 THESE GOALS NOT TO PROMOTE OUR 824 00:38:07,640 --> 00:38:09,040 OWN WELL BEING, BUT WE CAN 825 00:38:09,040 --> 00:38:10,920 PROMOTE OUR WELL BEING FOR 826 00:38:10,920 --> 00:38:13,320 REASONS I MENTIONED BUT AND WHEN 827 00:38:13,320 --> 00:38:15,160 WE WISH FOR SUCCESS WE DON'T DO 828 00:38:15,160 --> 00:38:21,280 FOR FOR OUR OWN SAKE, AND SO I 829 00:38:21,280 --> 00:38:23,800 THINK 1 IMPORTANT BY MARCUS ON 830 00:38:23,800 --> 00:38:26,240 WHAT WE OWE OTHER PEOPLE BROADLY 831 00:38:26,240 --> 00:38:29,840 SPEAKING WHAT THE CURRENCY OF 832 00:38:29,840 --> 00:38:31,840 JUSTICE IS, IS THAT WE OWE 833 00:38:31,840 --> 00:38:33,400 PEOPLE NOT MERELY OPPORTUNITIES 834 00:38:33,400 --> 00:38:35,800 TO PURSUE THEIR WELL BEING BUT 835 00:38:35,800 --> 00:38:39,240 ALSO OPPORTUNITIES TO PURSUE 836 00:38:39,240 --> 00:38:40,280 NONSELF-INTERESTED GOALS, BEYOND 837 00:38:40,280 --> 00:38:43,560 FOR REASONS BEYOND THE MERE FACT 838 00:38:43,560 --> 00:38:45,320 THAT IN SUCH PURSUIT, WE CAN 839 00:38:45,320 --> 00:38:46,920 PROMOTE OUR OWN WELL BEING. 840 00:38:46,920 --> 00:38:48,880 AND I THINK THIS TYPE OF 841 00:38:48,880 --> 00:38:54,760 OPPORTUNITY, THIS TYPE OF 842 00:38:54,760 --> 00:39:01,360 OPPORTUNITY FOR WHAT SEN CALLS 843 00:39:01,360 --> 00:39:02,760 IS LIMITED OPPORTUNITIES TO 844 00:39:02,760 --> 00:39:04,080 PURSUE SUCH GAINS EFFECTIVELY. 845 00:39:04,080 --> 00:39:05,080 THOSE CAN BE INDIVIDUALS WHO IN 846 00:39:05,080 --> 00:39:09,480 A VARIETY OF WAYS HAVE LIMITED 847 00:39:09,480 --> 00:39:10,360 OPPORTUNITIES OR ARE 848 00:39:10,360 --> 00:39:11,600 MARGINALIZED AND READING BETH'S 849 00:39:11,600 --> 00:39:13,120 WORK ON PEOPLE WITH WILLIAMS 850 00:39:13,120 --> 00:39:18,920 SYNDROME, THIS IS DEFINITELY 851 00:39:18,920 --> 00:39:19,480 TRUE OF THEM. 852 00:39:19,480 --> 00:39:22,160 SO WHAT DOES THIS MEAN FOR 853 00:39:22,160 --> 00:39:23,720 SAMANTHA'S CASE, IT IMPLIES THAT 854 00:39:23,720 --> 00:39:24,600 THOSE PARTICIPATE NOTHING THE 855 00:39:24,600 --> 00:39:26,480 STUDY IS NOT TO HER EXPECTED 856 00:39:26,480 --> 00:39:30,120 BENEFIT EVEN IF WE INCLUDE THE 857 00:39:30,120 --> 00:39:33,120 WAYS IN WHICH WE INCLUDE SUCCESS 858 00:39:33,120 --> 00:39:35,080 THAT HER ALTRUISTIC AIMS MIGHT 859 00:39:35,080 --> 00:39:38,760 CONTRIBUTE TOKER WELL BEING, IT 860 00:39:38,760 --> 00:39:40,520 MIGHT NOT BE EXPECTED TO HER 861 00:39:40,520 --> 00:39:43,000 BENEFIT, IT STILL MAY BE 862 00:39:43,000 --> 00:39:45,560 VALUABLE TO HER BECAUSE IT 863 00:39:45,560 --> 00:39:46,320 FURTHERS HER NONSELF-INTERESTED 864 00:39:46,320 --> 00:39:48,280 GOALS AND I THINK TRUSTEES AND 865 00:39:48,280 --> 00:39:51,360 STUDY DESIGNERS SHOULD CONSIDER 866 00:39:51,360 --> 00:39:52,760 THIS. 867 00:39:52,760 --> 00:39:54,960 THIS VALUABLE OPPORTUNITY TO 868 00:39:54,960 --> 00:39:56,520 PURSUE OUR NONSELF-INTERESTED 869 00:39:56,520 --> 00:39:57,480 GOALS, VALUABLE BEYOND THE WAYS 870 00:39:57,480 --> 00:40:04,640 IN WHICH IT CONTRIBUTES TO OUR 871 00:40:04,640 --> 00:40:05,200 WELL BEING. 872 00:40:05,200 --> 00:40:07,240 SO THAT'S 2 REASONS SO FAR TO 873 00:40:07,240 --> 00:40:11,480 THINK THAT A STUDY DISPOSITION 874 00:40:11,480 --> 00:40:12,880 TO BE ALTRUISTIC IS RELEVANT TO 875 00:40:12,880 --> 00:40:16,080 OUR UNDERSTANDING OF WHAT IS IN 876 00:40:16,080 --> 00:40:17,520 THE INTERESTS, THE WELL BEING 877 00:40:17,520 --> 00:40:19,480 INTERESTS AND BROADER INTERESTS 878 00:40:19,480 --> 00:40:20,360 OF POTENTIAL RESEARCH SUBJECTS 879 00:40:20,360 --> 00:40:26,720 AND I THINK TRUSTEES SHOULD ALSO 880 00:40:26,720 --> 00:40:27,560 CONSIDER THIS. 881 00:40:27,560 --> 00:40:33,400 THE QUESTION AROSE, ABOUT WHAT 882 00:40:33,400 --> 00:40:36,120 ABOUT EXPLOITING THIS ALTRUISM, 883 00:40:36,120 --> 00:40:38,640 I DON'T HAVE A FULL ANSWER TO 884 00:40:38,640 --> 00:40:39,640 THIS, BUT IN THINKING ABOUT THE 885 00:40:39,640 --> 00:40:41,040 CASES THERE COULD BE 2 THINGS 886 00:40:41,040 --> 00:40:44,680 ESPECIALGLY TO LOOK OUT FOR WHAT 887 00:40:44,680 --> 00:40:50,000 I'VE SAID SO FAR, I FOCUSED ON 888 00:40:50,000 --> 00:40:53,920 STUDY AND AS BEST AS THEY CAN BE 889 00:40:53,920 --> 00:40:54,720 CONSIDERED DISPOSITIONS THAT 890 00:40:54,720 --> 00:40:56,800 EXPRESS VALUES THAT A PERSON SO 891 00:40:56,800 --> 00:40:59,120 TO SPEAK INFUSE A PERSON'S LIFE 892 00:40:59,120 --> 00:41:04,000 AND ACTION AS A WHOLE. 893 00:41:04,000 --> 00:41:06,840 THAT DOES NOT ONLY APPLY TO THAT 894 00:41:06,840 --> 00:41:11,880 THE SATISFACTION OF FLEETING 895 00:41:11,880 --> 00:41:14,440 APPARENTLY ALTRUISTIC 896 00:41:14,440 --> 00:41:15,400 PREFERENCES THAT COME FROM 897 00:41:15,400 --> 00:41:16,920 GIVING IN TO SOCIAL PLEASURE OR 898 00:41:16,920 --> 00:41:23,560 A DESIRE TO PLEASE A STRANGER R 899 00:41:23,560 --> 00:41:27,880 PERSON OF AUTHORITY SHOULDN'T 900 00:41:27,880 --> 00:41:30,960 COUNT TOWARD'S A PERSON'S WELL 901 00:41:30,960 --> 00:41:31,240 BEING. 902 00:41:31,240 --> 00:41:35,080 SO FAR, THESE MAY BE INDEPENDENT 903 00:41:35,080 --> 00:41:37,400 OF COMPLEX AND MAN 904 00:41:37,400 --> 00:41:38,000 EPIGENETICCULATABLE PREFERENCES 905 00:41:38,000 --> 00:41:41,480 WHICH DO NOT EXPRESS SO TO SPEAK 906 00:41:41,480 --> 00:41:43,200 STEADILY HELD VALUES BUT MAY 907 00:41:43,200 --> 00:41:45,280 MERELY BE THE CONSEQUENCE OF THE 908 00:41:45,280 --> 00:41:46,680 PARTICULAR CONTEXT EITHER BY 909 00:41:46,680 --> 00:41:50,320 DESIGN OR SIMPLY BY ACCIDENT. 910 00:41:50,320 --> 00:41:54,400 I THINK WE SHOULD NOT THINK OF 911 00:41:54,400 --> 00:41:56,320 THE SATISFACTION OF THESE MORE 912 00:41:56,320 --> 00:41:58,040 FLEETING OR INDEPENDENT DESIRES 913 00:41:58,040 --> 00:42:01,520 AS CONTRIBUTING TO A PERSON'S 914 00:42:01,520 --> 00:42:02,480 WELL BEING. 915 00:42:02,480 --> 00:42:06,960 AND FURTHER THOUGHT I HAD WHICH 916 00:42:06,960 --> 00:42:11,520 IS THAT RESEARCHERS NATURALLY 917 00:42:11,520 --> 00:42:12,800 WILL BE OPTIMISTIC ABOUT THE 918 00:42:12,800 --> 00:42:15,080 VALUE OF THE RESEARCH. 919 00:42:15,080 --> 00:42:17,480 AND I THINK FOR EACH OF US, IT'S 920 00:42:17,480 --> 00:42:25,000 INCUMBENT ON US IF WE DESIGN THE 921 00:42:25,000 --> 00:42:27,640 STUDY, TO TONE DOWN OUR NATURAL 922 00:42:27,640 --> 00:42:29,080 ALTRUISM AND PRESENT AS BEST AS 923 00:42:29,080 --> 00:42:30,480 POSSIBLE A REALISTIC AND 924 00:42:30,480 --> 00:42:32,880 ACCURATE PICTURE TO THE 925 00:42:32,880 --> 00:42:33,640 POTENTIAL RESEARCH SUBJECT AND 926 00:42:33,640 --> 00:42:35,200 THEIR TRUSTEE OF THE POSSIBLE 927 00:42:35,200 --> 00:42:37,480 BENEFITS TO OTHERS OF THEIR 928 00:42:37,480 --> 00:42:45,240 PARTICIPATION AND LET'S FACE IT, 929 00:42:45,240 --> 00:42:47,080 IN MOST CASES THE EXPECTED 930 00:42:47,080 --> 00:42:52,440 BENEFIT BROUGHT ABOUT BY ANY 1 931 00:42:52,440 --> 00:42:53,520 PARTICIPANT, PARTICIPATING, WILL 932 00:42:53,520 --> 00:42:55,040 TYPICALLY BE SMALL AND HARD TO 933 00:42:55,040 --> 00:42:59,280 DETERMINE, SO EVEN THOUGH WE CAN 934 00:42:59,280 --> 00:43:00,680 CONFIDENTLY MAKE GENERAL CLAIMS 935 00:43:00,680 --> 00:43:02,920 THAT FOR EXAMPLE, OF THE TYPE 936 00:43:02,920 --> 00:43:05,120 THAT BETH MADE IF WE CAN DO MORE 937 00:43:05,120 --> 00:43:08,600 RESEARCH WITH MORE SUBJECTS AND 938 00:43:08,600 --> 00:43:10,160 EVEN SOME RESEARCH WHICH MIGHT 939 00:43:10,160 --> 00:43:11,560 INVOLVED SOMEWHAT HIGHER RISK 940 00:43:11,560 --> 00:43:14,080 BUT FOR PARTICIPANTS WE CAN 941 00:43:14,080 --> 00:43:15,480 EXPECT THAT WITH THE ADVANCEMENT 942 00:43:15,480 --> 00:43:18,440 OF KNOWLEDGE, WE CAN DO MORE 943 00:43:18,440 --> 00:43:23,080 GOOD FOR PEOPLE, WE HAVE TO BE 944 00:43:23,080 --> 00:43:25,840 CAREFUL NOT TO LET THAT TYPE OF 945 00:43:25,840 --> 00:43:27,240 GENERAL CLAIM HAVE TOO MUCH 946 00:43:27,240 --> 00:43:29,440 WEIGHT IN OUR PRESENTATION OF 947 00:43:29,440 --> 00:43:30,560 WHAT WE EXPECT THE CONTRIBUTION 948 00:43:30,560 --> 00:43:34,080 WILL BE OF THIS 1 PARTICIPANT 949 00:43:34,080 --> 00:43:36,400 JOINING IN BECAUSE THAT OF 950 00:43:36,400 --> 00:43:37,720 COURSE IS WHAT'S CRUCIAL TO 951 00:43:37,720 --> 00:43:39,800 DETERMINING HOW MUCH THEY ARE 952 00:43:39,800 --> 00:43:44,960 ABLE TO ADVANCE AIMS THAT THEY 953 00:43:44,960 --> 00:43:45,440 CARE ABOUT. 954 00:43:45,440 --> 00:43:47,440 SO I WOULD SAY THERE MAY BE MORE 955 00:43:47,440 --> 00:43:49,400 WAYS TO EXPLOIT SOMEONE'S 956 00:43:49,400 --> 00:43:51,240 ALTRUISM, BUT HERE ARE 2 WHICH 957 00:43:51,240 --> 00:43:55,600 COME TO MIND ESPECIALLY IN THIS 958 00:43:55,600 --> 00:43:56,200 CONTEXT. 959 00:43:56,200 --> 00:43:58,680 THE RELIANCE BY RESEARCHERS ON 960 00:43:58,680 --> 00:44:00,920 FLEETING OR CONTEXT PREFERENCES 961 00:44:00,920 --> 00:44:04,400 RATHER THAN ON STEADY ALTRUISTIC 962 00:44:04,400 --> 00:44:05,240 DISPOSITIONS OR ARE 963 00:44:05,240 --> 00:44:07,520 MISREPRESENTATION OF THE 964 00:44:07,520 --> 00:44:09,720 BENEFITS, RELYING ON THOSE TO 965 00:44:09,720 --> 00:44:12,680 GET PEOPLE TO EITHER CONSENT ON 966 00:44:12,680 --> 00:44:16,320 BEHALF OF THE PERSON, THE 967 00:44:16,320 --> 00:44:19,840 TRUSTEE, OR GET ASCENT OF THE 968 00:44:19,840 --> 00:44:27,200 RESEARCH SUBJECT, I THINK WOULD 969 00:44:27,200 --> 00:44:28,000 BE EXPLOITED. 970 00:44:28,000 --> 00:44:31,440 NOW WHAT ABOUT, I'VE TALKED 971 00:44:31,440 --> 00:44:33,080 ABOUT WELL BEING, AGENCY GOALS 972 00:44:33,080 --> 00:44:35,440 AND EXPECTATION, BUT THERE'S A 973 00:44:35,440 --> 00:44:37,240 FULL RELEVANCE HERE WHICH IS THE 974 00:44:37,240 --> 00:44:40,880 SUBJECT'S WILL AND THEIR 975 00:44:40,880 --> 00:44:41,640 UNDERSTANDING. 976 00:44:41,640 --> 00:44:43,480 SUPPOSE THAT FOR THE SAKE OF THE 977 00:44:43,480 --> 00:44:44,920 ARGUMENT ON BALANCE GIVEN HER 978 00:44:44,920 --> 00:44:46,120 LONG STANDING VALIUMS AND AIMS, 979 00:44:46,120 --> 00:44:48,880 IT WOULD BE IN SAMANTHA'S BROAD 980 00:44:48,880 --> 00:44:50,840 WELL BEING AND AGENCY INTEREST 981 00:44:50,840 --> 00:44:53,160 TO WILLINGLY PARTICIPATE IN THE 982 00:44:53,160 --> 00:44:57,920 STUDY WE'RE IMAGINING FOR 983 00:44:57,920 --> 00:44:58,800 ALTRUISTIC REASONS, NOW CONSIDER 984 00:44:58,800 --> 00:45:02,600 A CASE AS FOLLOWS. 985 00:45:02,600 --> 00:45:08,120 SAMANTHA OFFERS HER ASCENT BUT 986 00:45:08,120 --> 00:45:09,840 IT'S MISCONCEIVED WHEN ASKED WHY 987 00:45:09,840 --> 00:45:11,640 SHE WISHES TO PARTICIPATE, SHE 988 00:45:11,640 --> 00:45:15,240 ANSWERS SHE BELIEVES IT WILL 989 00:45:15,240 --> 00:45:17,080 HELP HER ANXIETY WHEN SHE'S 990 00:45:17,080 --> 00:45:18,960 ADVICED NOT TO EXPECT ANY SUCH 991 00:45:18,960 --> 00:45:20,600 BENEFIT, SHE RESPONDS SHE WANTS 992 00:45:20,600 --> 00:45:29,480 HER ANXIETY TO GO AWAY AND HOPES 993 00:45:29,480 --> 00:45:30,320 THIS WILL HELP. 994 00:45:30,320 --> 00:45:34,000 NOW WHAT SHE WE MAKE OF SUCH 995 00:45:34,000 --> 00:45:35,120 MISCONCEIVED DESCENT? 996 00:45:35,120 --> 00:45:41,360 I THINK EVEN WITH SUCH 997 00:45:41,360 --> 00:45:43,000 MISCONCEIVED ASCENT, A TRUSTEE 998 00:45:43,000 --> 00:45:44,280 SEEING HER OVERALL PATTERN OF 999 00:45:44,280 --> 00:45:45,360 COMMITMENTS AND THE THING SHE 1000 00:45:45,360 --> 00:45:47,160 TRIES TO ACHIEVE IN HER LIFE AND 1001 00:45:47,160 --> 00:45:49,760 SAYS SHE TRIES TO ACHIEVE WHICH 1002 00:45:49,760 --> 00:45:51,520 IS XASM HELPING OTHERS AND 1003 00:45:51,520 --> 00:45:52,320 FURTHERING KNOWLEDGE ABOUT 1004 00:45:52,320 --> 00:45:56,280 WILLIAMS SYNDROME, WE CAN STILL 1005 00:45:56,280 --> 00:46:00,760 SEE HER PARTICIPATION AS 1006 00:46:00,760 --> 00:46:01,880 ADVANCING HER--SOME ASPECTS OF 1007 00:46:01,880 --> 00:46:07,240 HER WELL BEING AND HER AGENCY 1008 00:46:07,240 --> 00:46:07,600 INTEREST. 1009 00:46:07,600 --> 00:46:08,400 NONETHELESS, THE--THE DEGREE TO 1010 00:46:08,400 --> 00:46:16,320 WHICH IT DOES SO, IS SOMEWHAT 1011 00:46:16,320 --> 00:46:17,920 ATTENUATE BY THE FACT THAT THE 1012 00:46:17,920 --> 00:46:20,480 REASON FOR WHICH SHE ASCENTS IS 1013 00:46:20,480 --> 00:46:22,280 MISCONCEIVED AND IN FACT NOT IN 1014 00:46:22,280 --> 00:46:25,440 LINE WITH THESE AIMS. 1015 00:46:25,440 --> 00:46:29,120 SO I THINK, IT WOULD BE SO TO 1016 00:46:29,120 --> 00:46:30,880 SPEAK, EVEN BETTER FROM THE 1017 00:46:30,880 --> 00:46:35,560 PERSPECTIVE OF HER WELL BEING 1018 00:46:35,560 --> 00:46:36,960 AND AGENCY INTERESTS IF SHE WERE 1019 00:46:36,960 --> 00:46:40,720 ABLE TO ACT IN THIS INSTANCE TO 1020 00:46:40,720 --> 00:46:43,400 ASCENT ON THE BASIS OF HER LONG 1021 00:46:43,400 --> 00:46:46,240 STANDING AND KNOWLEDGE BASED 1022 00:46:46,240 --> 00:46:48,760 AIMS, WHAT FOLLOWS THEN IS NOT 1023 00:46:48,760 --> 00:46:52,080 THAT WE CANNOT TAKE SUCH RISK 1024 00:46:52,080 --> 00:46:54,920 CONCEIVED DESCENT AS A REASON TO 1025 00:46:54,920 --> 00:47:00,920 PROMOTE HER TO ENGAGE IN THE 1026 00:47:00,920 --> 00:47:03,000 STUDY, BUT RATHER THAT IT WOULD 1027 00:47:03,000 --> 00:47:06,080 BE EVEN BETTER IF IN THIS 1028 00:47:06,080 --> 00:47:07,760 CIRCUMSTANCE THE DIALOGUE WOULD 1029 00:47:07,760 --> 00:47:08,600 CONTINUE WHILE TRYING TO FOCUS 1030 00:47:08,600 --> 00:47:13,240 ON THE WAYS IN WHICH THIS STUDY, 1031 00:47:13,240 --> 00:47:14,640 THESE OTHER AIMS AND KNOWLEDGE 1032 00:47:14,640 --> 00:47:15,600 OF INTEREST OF THINGS. 1033 00:47:15,600 --> 00:47:17,320 SO I WOULD SAY IT'S IMPORTANT 1034 00:47:17,320 --> 00:47:19,200 FOR RESEARCHERS AND TRUSTEES TO 1035 00:47:19,200 --> 00:47:24,360 TRY TO GET HER TO SEE, THESE 1036 00:47:24,360 --> 00:47:25,400 ALTRUISTIC NONSELF-INTERESTED 1037 00:47:25,400 --> 00:47:28,280 REASONS EVEN IF THEY CANNOT 1038 00:47:28,280 --> 00:47:30,800 CLEAR UP THE MISCONCEPTION. 1039 00:47:30,800 --> 00:47:33,320 NOW CONSIDER ANOTHER CASE, A 1040 00:47:33,320 --> 00:47:33,560 VARIANT. 1041 00:47:33,560 --> 00:47:38,000 I'M GOING TO CALL IT SAMANTHA'S 1042 00:47:38,000 --> 00:47:38,240 REFUSAL. 1043 00:47:38,240 --> 00:47:40,000 WHEN SHE'S ADVICE VISED NOT TO 1044 00:47:40,000 --> 00:47:44,080 EXPECT ANY THERAPEUTIC BENEFIT 1045 00:47:44,080 --> 00:47:45,600 AND INDEED IT WILL CAUSE 1046 00:47:45,600 --> 00:47:48,800 INCREASE IN HER ANXIETY, SHE 1047 00:47:48,800 --> 00:47:50,360 RESPONDS SHE DOES NOT WISH TO 1048 00:47:50,360 --> 00:47:51,400 PARTICIPATE AT ALL. 1049 00:47:51,400 --> 00:47:52,800 NOW IN LINE WITH THAT THAT 1050 00:47:52,800 --> 00:47:56,200 PROPOSES WE HAVE SEVERAL REASONS 1051 00:47:56,200 --> 00:47:57,680 NOT TO ENROLL HER BECAUSE EVEN 1052 00:47:57,680 --> 00:48:03,000 IF IT'S TRUE THAT WHILE HER 1053 00:48:03,000 --> 00:48:03,960 PARTICIPATION WOULD SERVE HER 1054 00:48:03,960 --> 00:48:06,360 AND BROADER AGENCY INTEREST, 1055 00:48:06,360 --> 00:48:07,320 UNWILLING PARTICIPATION MIGHT 1056 00:48:07,320 --> 00:48:11,400 WELL NOT DO SO BOTH OF BECAUSE 1057 00:48:11,400 --> 00:48:13,240 WILLING PARTICIPATION WOULD 1058 00:48:13,240 --> 00:48:15,720 INVOLVE A LIKELY INCREASE IN 1059 00:48:15,720 --> 00:48:18,000 ANXIETY BECAUSE WE'RE AWLTZ MORE 1060 00:48:18,000 --> 00:48:19,640 ANXIOUS WHEN WE'RE FORCED TO DO 1061 00:48:19,640 --> 00:48:20,480 SOMETHING WE REALLY DON'T WANT 1062 00:48:20,480 --> 00:48:21,280 TO DO. 1063 00:48:21,280 --> 00:48:22,800 BUT MORE OVER EVEN FROM THE 1064 00:48:22,800 --> 00:48:24,840 PERSPECTIVE OF HER VALUABLE 1065 00:48:24,840 --> 00:48:26,520 AGENCY WHICH WE'VE BEEN FOCUSING 1066 00:48:26,520 --> 00:48:29,360 ON, IT WOULD CLEARLY NOT BE HER 1067 00:48:29,360 --> 00:48:30,840 AGENCY THAT CONTRIBUTED TO HER 1068 00:48:30,840 --> 00:48:31,400 ACHIEVING HER GOALS. 1069 00:48:31,400 --> 00:48:32,560 THE FACT THAT PARTICIPATING 1070 00:48:32,560 --> 00:48:36,360 WOULD CONTRIBUTE TO HER GOALS 1071 00:48:36,360 --> 00:48:38,320 REMAINS, BUT, HER PARTICIPATION 1072 00:48:38,320 --> 00:48:41,520 IF IT'S WITHOUT HER ASCENT OR 1073 00:48:41,520 --> 00:48:44,560 AGAINST HER WISHES WOULD REALLY 1074 00:48:44,560 --> 00:48:48,160 NOT MAKE THIS HER SUCCESS OR HER 1075 00:48:48,160 --> 00:48:51,320 CONTRIBUTION BECAUSE IT WOULD 1076 00:48:51,320 --> 00:48:54,280 DISTANCE HER FROM THE WAY IN 1077 00:48:54,280 --> 00:48:55,760 WHICH SHE CONTRIBUTES. 1078 00:48:55,760 --> 00:48:57,280 SHE MAY MAKE MERE CAUSAL 1079 00:48:57,280 --> 00:48:58,760 CONTRIBUTIONS BUT IT'S NOT IN 1080 00:48:58,760 --> 00:49:05,480 ANY SENSE GUIDED BY HER. 1081 00:49:05,480 --> 00:49:06,880 MORE OVER INDEPENDENTLY THE 1082 00:49:06,880 --> 00:49:08,280 DEGREE TO WHICH PARTICIPATION 1083 00:49:08,280 --> 00:49:09,800 WOULD OR WOULD NOT CONTRIBUTE TO 1084 00:49:09,800 --> 00:49:12,000 HER LONG STANDING AIMS THERE'S 1085 00:49:12,000 --> 00:49:14,200 SIMPLY A MATTER OF RESPECTING A 1086 00:49:14,200 --> 00:49:15,320 PERSON'S WILL QUITE APART FROM 1087 00:49:15,320 --> 00:49:20,160 WHAT SERVES THE INTERESTS. 1088 00:49:20,160 --> 00:49:23,440 SO I THINK, DAVE WENDLER AND 1089 00:49:23,440 --> 00:49:25,480 DANA HOWARD MAKE A VERY POWERFUL 1090 00:49:25,480 --> 00:49:26,360 ARGUMENT THAT ALSO INDICATES 1091 00:49:26,360 --> 00:49:29,640 PEOPLE WITH MILD TO MODERATE AND 1092 00:49:29,640 --> 00:49:30,920 EVEN SEVERE INTELLECTUAL 1093 00:49:30,920 --> 00:49:31,840 DISABILITY, THERE ARE STILL 1094 00:49:31,840 --> 00:49:35,640 STRONG REASONS TO RESPECT 1095 00:49:35,640 --> 00:49:38,040 PEOPLE'S WILL, AND NOT ENTIRELY 1096 00:49:38,040 --> 00:49:39,000 REDUCIBLE TO RESPECTING THEIR 1097 00:49:39,000 --> 00:49:44,200 AUTONOMY IN A SENSE OF WHOLE 1098 00:49:44,200 --> 00:49:44,560 RATIONAL AGENCY. 1099 00:49:44,560 --> 00:49:47,560 SO I THINK WE HAVE HERE SOME 1100 00:49:47,560 --> 00:49:51,040 REASONS THAT SUPPORT A 1101 00:49:51,040 --> 00:49:53,880 REQUIREMENT TO SEEK ASCENT IN 1102 00:49:53,880 --> 00:49:56,080 ADDITION SUCH A REQUIREMENT IS 1103 00:49:56,080 --> 00:49:58,280 SUPPORTED BY WORRIES ABOUT 1104 00:49:58,280 --> 00:50:02,360 TRUSTEES OR RESEARCHERS 1105 00:50:02,360 --> 00:50:03,800 MISUNDERSTANDING AND A CHECK ON 1106 00:50:03,800 --> 00:50:05,880 EXPLOITATION, SO I THINK WE HAVE 1107 00:50:05,880 --> 00:50:12,280 MANY, MANY REASONS TO CARE ABOUT 1108 00:50:12,280 --> 00:50:13,600 GETTING ASCENT AND IN TTION 1109 00:50:13,600 --> 00:50:16,080 ABSENCE WE SHOULD NOT ENROLL A 1110 00:50:16,080 --> 00:50:16,360 PARTICIPANT. 1111 00:50:16,360 --> 00:50:18,600 SO HERE THEN ARE MY ANSWERS TO 1112 00:50:18,600 --> 00:50:20,280 THE QUESTIONS THAT WERE PROPOSED 1113 00:50:20,280 --> 00:50:22,120 BY BETH AND DAVE, IS IT 1114 00:50:22,120 --> 00:50:26,120 ACCEPTABLE TO APPEAL TO ALTRUISM 1115 00:50:26,120 --> 00:50:26,640 IN RESEARCH PARTICIPANTS? 1116 00:50:26,640 --> 00:50:34,200 MY ANSWER IS YES, INSOFAR AS IT 1117 00:50:34,200 --> 00:50:35,800 CONFORMS TO THEIR STEADY VALUES 1118 00:50:35,800 --> 00:50:37,240 AND AIMS. 1119 00:50:37,240 --> 00:50:41,680 DOES IT DEPEND ON THE CONSENT 1120 00:50:41,680 --> 00:50:44,480 AND A ASCENT, I THINK IT CAN 1121 00:50:44,480 --> 00:50:46,320 CONTRIBUTE TO ALTRUISM EVEN WHEN 1122 00:50:46,320 --> 00:50:47,880 THEY CANNOT CONSENT. 1123 00:50:47,880 --> 00:50:49,320 A TRUSTEE'S CONSENT AND THE 1124 00:50:49,320 --> 00:50:53,680 PERSON IN QUESTIONS ASCENT CAN 1125 00:50:53,680 --> 00:50:55,880 SUFFICE, BUT ASCENT FOR THE 1126 00:50:55,880 --> 00:50:58,640 RIGHT REASONS, LET'S SAY THE 1127 00:50:58,640 --> 00:50:59,480 ALTRUISTIC OR NONSELF-INTERESTED 1128 00:50:59,480 --> 00:51:00,760 REASONS THAT CONTRIBUTE TO 1129 00:51:00,760 --> 00:51:02,360 MAKING IT SERVE THE PERSON'S 1130 00:51:02,360 --> 00:51:06,160 WELL BEING OR AGENCY GOALS, 1131 00:51:06,160 --> 00:51:06,920 MAKES THE GREATEST CONTRIBUTION 1132 00:51:06,920 --> 00:51:09,280 TO WELL BEING AND SUCCESS OF 1133 00:51:09,280 --> 00:51:11,240 NONSELF-INTERESTED GOALS. 1134 00:51:11,240 --> 00:51:14,800 SO WE SHOULD TRY TO GET ASCENT 1135 00:51:14,800 --> 00:51:20,880 FOR THE RIGHT REASONS. 1136 00:51:20,880 --> 00:51:24,520 BUT NONETHELESS, I THINK AGAIN 1137 00:51:24,520 --> 00:51:25,920 ABOUT SAMANTHA'S MISCONCEIVED 1138 00:51:25,920 --> 00:51:27,320 ASCENT, EVEN CONSENT THAT IS 1139 00:51:27,320 --> 00:51:30,920 PARTLY BASED ON THE 1140 00:51:30,920 --> 00:51:32,720 MISCONCEPTION THAT IS IMPORTANT 1141 00:51:32,720 --> 00:51:34,000 AND IT DOESN'T--THE FACT THAT 1142 00:51:34,000 --> 00:51:36,160 THERE IS SUCH A MISCONCEPTION 1143 00:51:36,160 --> 00:51:36,840 DOESN'T ENTIRELY HAVE TO STAND 1144 00:51:36,840 --> 00:51:39,720 IN THE WAY OF THINKING THAT 1145 00:51:39,720 --> 00:51:41,480 PARTICIPATION CAN CONTRIBUTE TO 1146 00:51:41,480 --> 00:51:48,240 THEIR WELL BEING AND 1147 00:51:48,240 --> 00:51:49,040 NONSELF-INTERESTED AGENCY'S 1148 00:51:49,040 --> 00:51:49,280 SUCCESS. 1149 00:51:49,280 --> 00:51:51,080 DESCENT REASONS WE HAVE MANY 1150 00:51:51,080 --> 00:51:52,200 REASONS TO RESPECT. 1151 00:51:52,200 --> 00:51:54,000 IS RESEARCH ACCEPTABLE AND MORE 1152 00:51:54,000 --> 00:51:55,720 ALTRUISTIC IN INDIVIDUALS, YES 1153 00:51:55,720 --> 00:51:56,800 TO SOME EXTENT. 1154 00:51:56,800 --> 00:51:59,320 ARE THEY FOCUSING ON CASES WHERE 1155 00:51:59,320 --> 00:52:00,720 ALTRUISTIC INTERESTS OF A PERSON 1156 00:52:00,720 --> 00:52:06,360 MAY HELP TIP THE BALANCE AT 1157 00:52:06,360 --> 00:52:09,360 LEAST, THEY WILL MAKE MORE 1158 00:52:09,360 --> 00:52:11,080 THINGS PERMISSIBLE THAN WOULD BE 1159 00:52:11,080 --> 00:52:13,480 PERMISSIBLE IF WE FOCUSED ON 1160 00:52:13,480 --> 00:52:15,600 NARROW HEALTH RELATED WELL 1161 00:52:15,600 --> 00:52:15,880 BEING. 1162 00:52:15,880 --> 00:52:17,840 DOES IT MATTER WHETHER A 1163 00:52:17,840 --> 00:52:18,800 PERSON'S ALTRUISM IS ASSOCIATED 1164 00:52:18,800 --> 00:52:22,720 WITH A MEDICAL CONDITION OR NOT, 1165 00:52:22,720 --> 00:52:24,840 I PROPOSE THAT WHAT MATTERS IS 1166 00:52:24,840 --> 00:52:26,280 THAT ALTRUISM IS A STEADY PART 1167 00:52:26,280 --> 00:52:28,040 OF THEIR VALUES AND AIMS AND NOT 1168 00:52:28,040 --> 00:52:31,400 A PRODUCT OF FLEETING DESIRES OR 1169 00:52:31,400 --> 00:52:34,160 SOCIAL PRESSURE. 1170 00:52:34,160 --> 00:52:35,920 SO, IF A PERSON WITH WILLIAMS 1171 00:52:35,920 --> 00:52:40,040 SYNDROME HAS SUCH A STEADY 1172 00:52:40,040 --> 00:52:41,840 ALTRUISTIC DISPOSITION, THEN 1173 00:52:41,840 --> 00:52:44,960 THAT IS PERFECTLY ADEQUATE, I 1174 00:52:44,960 --> 00:52:47,560 THINK FOR ESTABLISHING THAT 1175 00:52:47,560 --> 00:52:49,320 THEIR ALTRUISM CAN BE A BASIS, 1176 00:52:49,320 --> 00:52:51,560 NOT THE ONLY BASIS ON WHICH TO 1177 00:52:51,560 --> 00:52:53,280 THINK THAT PARTICIPATION MAY BE 1178 00:52:53,280 --> 00:52:55,720 IN THEIR INTERESTS BROADLY 1179 00:52:55,720 --> 00:52:56,000 CONCEIVED. 1180 00:52:56,000 --> 00:52:58,000 HOWEVER, IF A MEDICAL CONDITION 1181 00:52:58,000 --> 00:53:02,080 MAKES US MORE VULNERABLE TO 1182 00:53:02,080 --> 00:53:04,080 SIMPLY HAVING FLEETING DESIRES 1183 00:53:04,080 --> 00:53:06,040 FOR EXAMPLE, TO PLEASE AN 1184 00:53:06,040 --> 00:53:10,160 EXPERIMENTER OR TO GIVE INTO 1185 00:53:10,160 --> 00:53:11,840 SOCIAL PRESSURE THEN THERE WOULD 1186 00:53:11,840 --> 00:53:12,320 BE A PROBLEM. 1187 00:53:12,320 --> 00:53:14,960 FINALLY IS IT POSSIBLE TO 1188 00:53:14,960 --> 00:53:15,600 EXPLOIT PARTICIPANTS ALTRUISM, 1189 00:53:15,600 --> 00:53:18,480 MY ANSWER IS YES, BY 1190 00:53:18,480 --> 00:53:19,080 MISREPRESENTING THE BENEFITS 1191 00:53:19,080 --> 00:53:24,280 EITHER TO THE TRUSTEES OR TO THE 1192 00:53:24,280 --> 00:53:25,920 PARTICIPANTS, ESPECIALLY 1193 00:53:25,920 --> 00:53:28,120 MISREPRESENTING THE BENEFITS TO 1194 00:53:28,120 --> 00:53:28,480 OTHERS, RIGHT? 1195 00:53:28,480 --> 00:53:30,920 AND BY RELYING ON SUCH FLEETING 1196 00:53:30,920 --> 00:53:32,480 OR HIGHLY CONTEXT DEPENDENT 1197 00:53:32,480 --> 00:53:33,560 MOTIVES SO THOSE ARE THINGS WE 1198 00:53:33,560 --> 00:53:43,920 SHOULD TRY TO,A VOID. 1199 00:53:43,920 --> 00:53:44,760 THANK YOU. 1200 00:53:44,760 --> 00:53:46,920 >>THANKS ALEX THAT WAS GREAT. 1201 00:53:46,920 --> 00:53:49,000 I WANT TO UNDERSCORE SOMETHING 1202 00:53:49,000 --> 00:53:50,400 YOU SAID WHICH SEEMS TO BE RIGHT 1203 00:53:50,400 --> 00:53:51,800 AND INTERESTING WHICH IS THAT 1204 00:53:51,800 --> 00:53:53,200 WHEN WE THINK ABOUT PEOPLE WHO 1205 00:53:53,200 --> 00:53:56,080 HAVE MILD TO MODERATE COGNITIVE 1206 00:53:56,080 --> 00:53:58,920 IMPAIRMENT OR WE THINK ABOUT 5 1207 00:53:58,920 --> 00:54:00,560 YEAR-OLDS OR YOUR 3 YEAR-OLD 1208 00:54:00,560 --> 00:54:03,520 TWINS, THEN I THINK AT LEAST IN 1209 00:54:03,520 --> 00:54:05,080 THE RESEARCH SETTING WE TEND TO 1210 00:54:05,080 --> 00:54:06,840 FOCUS ON THOSE CONDITIONS AS 1211 00:54:06,840 --> 00:54:08,680 VULNERABILITIES AND WE WANT TO 1212 00:54:08,680 --> 00:54:10,200 PROTECT PEOPLE AND MINIMIZE THE 1213 00:54:10,200 --> 00:54:12,720 RISKS THEY FACE, OBVIOUSLY ALL 1214 00:54:12,720 --> 00:54:14,240 OF THAT'S IMPORTANT BUT I WANT 1215 00:54:14,240 --> 00:54:15,080 TO UNDERSCORE THE POINT YOU MADE 1216 00:54:15,080 --> 00:54:17,880 SO YOU HAD MORE THOUGHTS ON IT 1217 00:54:17,880 --> 00:54:19,000 WHICH IS THAT 1 THING THAT'S 1218 00:54:19,000 --> 00:54:21,080 INTERESTING ABOUT THE RESEARCH 1219 00:54:21,080 --> 00:54:22,800 CONTEXT IS IT'S ALSO AN UNUSUAL 1220 00:54:22,800 --> 00:54:24,600 CONTEXT OR EVEN SAY A 3 YEAR-OLD 1221 00:54:24,600 --> 00:54:27,800 OR A 5 YEAR-OLD CAN MAKE 1222 00:54:27,800 --> 00:54:28,600 EXTREMELY IMPORTANT 1223 00:54:28,600 --> 00:54:29,400 CONTRIBUTIONS, IT'S REALLY HARD 1224 00:54:29,400 --> 00:54:31,840 AND THERE'S VERY FEW WAYS IN 1225 00:54:31,840 --> 00:54:32,920 WHICH 3 YEAR-OLDS AND/OR 5 1226 00:54:32,920 --> 00:54:35,440 YEAR-OLDS CAN DO THINGS THAT ARE 1227 00:54:35,440 --> 00:54:36,280 PARTICULARLY VALUABLE AND BEING 1228 00:54:36,280 --> 00:54:37,840 IN A RESEARCH STUDY IS REALLY 1 1229 00:54:37,840 --> 00:54:38,520 OF THEM. 1230 00:54:38,520 --> 00:54:41,480 SO IT'S A CREDIT OF HOW WE GET 1231 00:54:41,480 --> 00:54:43,600 THE BALANCE OF LETTING PEOPLE 1232 00:54:43,600 --> 00:54:44,640 ENCOURAGE THAT WHILE PROTECTING 1233 00:54:44,640 --> 00:54:45,480 THEM. 1234 00:54:45,480 --> 00:54:47,840 I JUST WANTED KRA THOUGHTS ON 1235 00:54:47,840 --> 00:54:48,040 THAT. 1236 00:54:48,040 --> 00:54:52,160 IT'S A REALLY INTERESTING POINT. 1237 00:54:52,160 --> 00:54:53,160 >>THANK YOU. 1238 00:54:53,160 --> 00:54:56,000 YES, I AGREE AND I ALSO WANT TO 1239 00:54:56,000 --> 00:54:58,680 EMPHASIZE THE POINT THAT IF 1240 00:54:58,680 --> 00:55:02,600 WE'RE TOO CAUTIOUS, IN 1241 00:55:02,600 --> 00:55:04,480 PERMITTING PEOPLE TO PARTICIPATE 1242 00:55:04,480 --> 00:55:06,240 ON THE BASIS OF ALTRUISM, 1243 00:55:06,240 --> 00:55:08,200 ESPECIALLY PEOPLE WITH 1244 00:55:08,200 --> 00:55:09,880 INTELLECTUAL DISABILITIES OR 1245 00:55:09,880 --> 00:55:11,520 YOUNG CHILDREN, THEN WE'RE ALSO 1246 00:55:11,520 --> 00:55:13,080 DEPRIVING THEM OF SOMETHING OF 1247 00:55:13,080 --> 00:55:16,840 VALUE, NOT MERELY IN TERMS OF 1248 00:55:16,840 --> 00:55:21,280 WELL BEING, BUT WHAT THEY CALL 1249 00:55:21,280 --> 00:55:25,320 THE AGENCY CAPABILITIES. 1250 00:55:25,320 --> 00:55:26,520 AND SO, IT'S NOT JUST FOR THE 1251 00:55:26,520 --> 00:55:27,960 SAKE OF OTHERS THAT WE MIGHT 1252 00:55:27,960 --> 00:55:30,120 WANT TO PERMIT THEM TO 1253 00:55:30,120 --> 00:55:31,400 PARTICIPATE, BUT ALSO TO SOME 1254 00:55:31,400 --> 00:55:35,960 EXTENT FOR THEIR OWN SAKE. 1255 00:55:35,960 --> 00:55:36,400 >>GREAT, GREAT. 1256 00:55:36,400 --> 00:55:38,840 SO DO YOU THINK THERE'S A 1257 00:55:38,840 --> 00:55:43,240 DIFFERENCE ALEX BETWEEN TAKE 2 1258 00:55:43,240 --> 00:55:45,280 CASES, 1 CASE IS WHERE AN 1259 00:55:45,280 --> 00:55:46,080 INDIVIDUAL HAS AN ALTRUISTIC 1260 00:55:46,080 --> 00:55:46,960 MOTIVATION TO DO SOMETHING, I 1261 00:55:46,960 --> 00:55:48,880 WANT TO HELP MY BROTHER DO X OR 1262 00:55:48,880 --> 00:55:51,720 Y OR I WANT TO HELP OTHER PEOPLE 1263 00:55:51,720 --> 00:55:53,200 DO SOMETHING, WHERE IT'S AN 1264 00:55:53,200 --> 00:55:54,920 INDEPENDENT GOAL THAT THE 1265 00:55:54,920 --> 00:55:56,400 INDIVIDUAL'S COME UP WITH. 1266 00:55:56,400 --> 00:55:58,520 SO THAT'S 1 KIND OF CASE WHERE 1267 00:55:58,520 --> 00:56:02,280 YOU MIGHT FACILITATE THEIR 1268 00:56:02,280 --> 00:56:05,880 ALTRUISM DO YOU THINK THAT'S 1269 00:56:05,880 --> 00:56:07,160 FUNDAMENTAL DIFFERENT FROM 1270 00:56:07,160 --> 00:56:08,200 RESEARCH IN A CASE WHERE WE COME 1271 00:56:08,200 --> 00:56:10,200 TO THEM AND SAY HERE'S A WAY YOU 1272 00:56:10,200 --> 00:56:11,480 CAN CONTRIBUTE AND HELP OTHERS 1273 00:56:11,480 --> 00:56:13,120 AND IT MAY NOT EVEN BE SOMETHING 1274 00:56:13,120 --> 00:56:15,040 THEY'VE THOUGHT OF TOO MUCH 1275 00:56:15,040 --> 00:56:16,640 BEFORE REALIZED AS AN 1276 00:56:16,640 --> 00:56:19,600 OPPORTUNITY AND I WAS WONDERING 1277 00:56:19,600 --> 00:56:21,480 IF THAT DIFFERENCE MAKES A 1278 00:56:21,480 --> 00:56:22,360 NORMATIVE DIFFERENCE IN THE WAY 1279 00:56:22,360 --> 00:56:25,880 WE,A PROACH THESE CASES? 1280 00:56:25,880 --> 00:56:28,520 >>I THINK YOU HAVE TO BE 1281 00:56:28,520 --> 00:56:31,120 CAREFUL WHEN YOU COME, WHEN YOU 1282 00:56:31,120 --> 00:56:33,840 APPROACH TO PEOPLE THAT YOU 1283 00:56:33,840 --> 00:56:34,400 DON'T--ESPECIALLY IF THEY'RE 1284 00:56:34,400 --> 00:56:36,160 VULNERABLE IN A VARIETY OF WAYS 1285 00:56:36,160 --> 00:56:38,920 THAT YOU DON'T PREY ON THEIR 1286 00:56:38,920 --> 00:56:43,000 SUGGEST OOBILITY OR THEIR MERE 1287 00:56:43,000 --> 00:56:44,000 DESIRE TO PLEASE. 1288 00:56:44,000 --> 00:56:46,280 BUT IF YOU'RE GENUINELY OFFERING 1289 00:56:46,280 --> 00:56:48,320 THEM AN OPPORTUNITY TO DO 1290 00:56:48,320 --> 00:56:50,240 SOMETHING TO CONTRIBUTE TO 1291 00:56:50,240 --> 00:56:55,880 SOMETHING THAT THEY ALREADY CARE 1292 00:56:55,880 --> 00:56:57,880 ABOUT IF I HAD NOT YET ALREADY 1293 00:56:57,880 --> 00:56:58,840 SEEN THIS PARTICULAR CONTRIBUTE 1294 00:56:58,840 --> 00:57:00,160 TO MAKE THE CONTRIBUTION THAT 1295 00:57:00,160 --> 00:57:02,240 THEY WERE VALUED, I THINK IT'S 1296 00:57:02,240 --> 00:57:05,480 TOTALLY FINE. 1297 00:57:05,480 --> 00:57:05,960 >>GREAT. 1298 00:57:05,960 --> 00:57:06,920 ONE MORE QUESTION JUST MAYBE IF 1299 00:57:06,920 --> 00:57:08,760 YOU WANT TO COMMENT MORE, WE'RE 1300 00:57:08,760 --> 00:57:13,000 HAVING A VERY LIVELY DEBATE IN 1301 00:57:13,000 --> 00:57:13,600 THE QUESTIONS I WAS GETTING ON 1302 00:57:13,600 --> 00:57:18,120 WHETHER OR NOT THE RESPECT FOR 1303 00:57:18,120 --> 00:57:20,520 INDIVIDUAL'S ALTRUISM AND THEIR 1304 00:57:20,520 --> 00:57:21,920 AGENCY, WHETHER OR NOT THE FACT 1305 00:57:21,920 --> 00:57:23,440 THAT SOMEBODY IS ALTRUISTIC AS A 1306 00:57:23,440 --> 00:57:26,320 RESULT OF A MEDICAL CONDITION OR 1307 00:57:26,320 --> 00:57:28,240 IT'S A SYNDROME OR SYMPTOM OF A 1308 00:57:28,240 --> 00:57:29,040 MEDICAL CONDITION, DOES IT 1309 00:57:29,040 --> 00:57:29,280 MATTER? 1310 00:57:29,280 --> 00:57:30,720 AT THE END YOU WERE SAYING WHAT 1311 00:57:30,720 --> 00:57:31,520 REALLY MATTER SYSTEM WHETHER 1312 00:57:31,520 --> 00:57:33,840 IT'S SORT OF A STEADY VALUE OF 1313 00:57:33,840 --> 00:57:35,520 THE PERSON INDEPENDENT OF HOW 1314 00:57:35,520 --> 00:57:37,160 THEY CAME ABOUT HAVING THAT 1315 00:57:37,160 --> 00:57:37,400 VALUE. 1316 00:57:37,400 --> 00:57:39,240 JUST WANTED TO SEE WHAT YOU 1317 00:57:39,240 --> 00:57:40,160 THOUGHT OF THAT? 1318 00:57:40,160 --> 00:57:41,440 >>YEAH, THAT'S INDEED WHAT I 1319 00:57:41,440 --> 00:57:42,560 THINK, IT MAY SOUND 1320 00:57:42,560 --> 00:57:43,560 CONTROVERSIAL BUT THE MERE FACT 1321 00:57:43,560 --> 00:57:45,080 THAT IT'S A CONSEQUENCE OF A 1322 00:57:45,080 --> 00:57:47,800 MEDICAL CONDITION OR SYNDROME IS 1323 00:57:47,800 --> 00:57:49,800 NEITHER HERE NOR THERE FOR ME. 1324 00:57:49,800 --> 00:57:51,960 WHAT MATTERS IS THAT IT'S A 1325 00:57:51,960 --> 00:57:53,440 STEADY PART OF THEIR CHARACTER 1326 00:57:53,440 --> 00:57:54,560 AND OUTLOOK AND WHAT THEY WANT 1327 00:57:54,560 --> 00:57:57,480 TO ACHIEVE IN LIFE. 1328 00:57:57,480 --> 00:57:57,920 >>GREAT, GREAT. 1329 00:57:57,920 --> 00:58:00,880 SO DO YOU THINK WE SHOULD--I 1330 00:58:00,880 --> 00:58:02,600 DON'T KNOW, IF IN IS PUTTING YOU 1331 00:58:02,600 --> 00:58:04,480 ON THE SPOT A BIT, YOU DON'T 1332 00:58:04,480 --> 00:58:05,880 HAVE FULL EXPERIENCE WITH THIS 1333 00:58:05,880 --> 00:58:10,520 AS MUCH, BUT AS I MENTIONED AT 1334 00:58:10,520 --> 00:58:12,480 THE TOP MY EXPERIENCE AT LEAST 1335 00:58:12,480 --> 00:58:14,680 WITH RESEARCH CONSENT FORMS, 1336 00:58:14,680 --> 00:58:15,960 RESEARCH CONSENT DISCUSSIONS IS 1337 00:58:15,960 --> 00:58:17,680 THERE'S VERY LITTLE DISCUSSED 1338 00:58:17,680 --> 00:58:19,000 AND MAYBE BETH HAS THOUGHTS ON 1339 00:58:19,000 --> 00:58:21,080 THIS, ON THE EXTENT TO WHICH 1340 00:58:21,080 --> 00:58:22,280 PARTICIPATING CAN BE PART OF OUR 1341 00:58:22,280 --> 00:58:24,840 PROJECT TO HELP OTHER PEOPLE AND 1342 00:58:24,840 --> 00:58:26,440 AS YOU'RE SAYING AT THE END, 1343 00:58:26,440 --> 00:58:28,440 OBVIOUSLY WE DON'T WANT TO 1344 00:58:28,440 --> 00:58:30,240 EXAGGERATE THAT WE NEED TO BE 1345 00:58:30,240 --> 00:58:31,440 ACCURATE AND FACTUAL ABOUT IT 1346 00:58:31,440 --> 00:58:32,960 BUT THERE SHOULD BE MORE OF JUST 1347 00:58:32,960 --> 00:58:34,680 MAKING THAT EXPLICIT TO PEOPLE 1348 00:58:34,680 --> 00:58:36,120 IF THIS IS A VALUABLE REASON YOU 1349 00:58:36,120 --> 00:58:38,240 MIGHT NOT CARE ABOUT IT BUT YOU 1350 00:58:38,240 --> 00:58:41,520 MIGHT AND IT'S A WAY OF HELPING 1351 00:58:41,520 --> 00:58:41,920 OTHER PEOPLE. 1352 00:58:41,920 --> 00:58:43,560 >>ARE YOU ASKING ME OR BETH? 1353 00:58:43,560 --> 00:58:45,080 >>I WAS ASKING YOU. 1354 00:58:45,080 --> 00:58:47,400 >>OH, SO YES, I DO THINK SO, SO 1355 00:58:47,400 --> 00:58:52,800 LONG AS IT'S DONE WITH CARE IN A 1356 00:58:52,800 --> 00:58:54,000 NONMANIPULATIVE WAY AND ALSO 1357 00:58:54,000 --> 00:58:56,200 PLENTY OF EXPERIENCE IN 1358 00:58:56,200 --> 00:58:57,000 DESIGNING THE INFORMATION GIVEN 1359 00:58:57,000 --> 00:58:59,200 TO PEOPLE TO TRY TO NOT 1360 00:58:59,200 --> 00:59:00,280 MANIPULATE THEM ON OTHER GROUNDS 1361 00:59:00,280 --> 00:59:02,440 FOR EXAMPLE TO TRY TO GET RID OF 1362 00:59:02,440 --> 00:59:04,480 THE THERAPEUTIC MISCONCEPTION, I 1363 00:59:04,480 --> 00:59:09,000 THINK SIMILARLY, GREAT CARE HAS 1364 00:59:09,000 --> 00:59:13,080 TO BE TAKEN TO NOT JUST GENERATE 1365 00:59:13,080 --> 00:59:20,680 WHAT PSYCHOLOGISTS CALL SOCIAL 1366 00:59:20,680 --> 00:59:24,000 DESIRABILITY, BUT WEB C 1367 00:59:24,000 --> 00:59:25,880 ONNECTED--WE HAVE TO SEE IF 1368 00:59:25,880 --> 00:59:26,920 IT'S POTENTIALLY EMPOWERING 1369 00:59:26,920 --> 00:59:28,120 PEOPLE, ESPECIALLY PEOPLE WHO 1370 00:59:28,120 --> 00:59:29,040 HAVE LESS OPPORTUNITY THAN THE 1371 00:59:29,040 --> 00:59:32,920 AVERAGE PERSON TO MAKE THESE 1372 00:59:32,920 --> 00:59:35,480 TYPES OF CONTRIBUTIONS TO A 1373 00:59:35,480 --> 00:59:36,320 NONSELF-INTERESTED GOALS AND IF 1374 00:59:36,320 --> 00:59:37,680 THEY HAVE THESE PREFERENCES, 1375 00:59:37,680 --> 00:59:39,680 THEN I THINK IT'S VERY IMPORTANT 1376 00:59:39,680 --> 00:59:43,880 THAT WE SEE THIS AS A POTENTIAL 1377 00:59:43,880 --> 00:59:46,280 OPPORTUNITY FOR THEM, TO ACQUIRE 1378 00:59:46,280 --> 00:59:48,040 A TYPE OF AGENCY THAT MANY OF US 1379 00:59:48,040 --> 00:59:49,760 TAKE FOR GRANTED AND THAT THEY 1380 00:59:49,760 --> 00:59:52,080 MAY HAVE MORE LIMITED 1381 00:59:52,080 --> 00:59:53,360 OPPORTUNITIES FOR. 1382 00:59:53,360 --> 00:59:53,680 GREAT. 1383 00:59:53,680 --> 00:59:56,640 WELL, I WANT TO THANK EVERYBODY. 1384 00:59:56,640 --> 00:59:58,520 ONE FINAL NOTE IS THERE WAS SOME 1385 00:59:58,520 --> 01:00:00,400 DISCUSSION WE HAD IN THE SLIDES 1386 01:00:00,400 --> 01:00:02,720 WITH BETH OF NIH POLICIES AND 1387 01:00:02,720 --> 01:00:04,360 FEDERAL REGULATIONS ON RESEARCH 1388 01:00:04,360 --> 01:00:05,080 RISKS PARTICULARLY WITH 1389 01:00:05,080 --> 01:00:07,240 INDIVIDUAL WHO IS CAN'T CONSENT. 1390 01:00:07,240 --> 01:00:08,640 ANYBODY WHO HAS QUESTIONS ABOUT 1391 01:00:08,640 --> 01:00:10,840 THOSE, OBVIOUSLY WE COULDN'T GET 1392 01:00:10,840 --> 01:00:12,640 INTO THOSE THAL SESSION, SOME 1393 01:00:12,640 --> 01:00:13,800 PEOPLE HAD QUESTIONS, I WILL 1394 01:00:13,800 --> 01:00:15,320 ANSWER THOSE BUT IF ANYBODY ELSE 1395 01:00:15,320 --> 01:00:16,200 HAS QUESTIONS FEEL FREE TO 1396 01:00:16,200 --> 01:00:17,720 E-MAIL ME AND I WILL BE HAPPY TO 1397 01:00:17,720 --> 01:00:19,040 CHAT ABOUT THEM AND FINALLY I 1398 01:00:19,040 --> 01:00:21,000 WANT TO ECHO AT LEAST 3 OF THE 1399 01:00:21,000 --> 01:00:21,920 QUESTIONS WERE JUST STATEMENTS 1400 01:00:21,920 --> 01:00:25,360 THAT THIS WAS A REALLY GREAT AND 1401 01:00:25,360 --> 01:00:25,960 VERY INTERESTING DISCUSSION. 1402 01:00:25,960 --> 01:00:28,160 SO I WANT TO VERY MUCH THANK 1403 01:00:28,160 --> 01:00:29,840 BETH AND ALEX FOR THEIR 1404 01:00:29,840 --> 01:00:30,760 PARTICIPATION IN THIS. 1405 01:00:30,760 --> 01:00:33,200 WE REALLY APPRECIATE IT. 1406 01:00:33,200 --> 01:00:35,520 >>THANK YOU VERY MUCH. 1407 01:00:35,520 --> 01:00:36,480 >>AND I--I APOLOGIZE I LOST 1408 01:00:36,480 --> 01:00:39,200 TRACK OF TIME A BIT, I WANTED TO 1409 01:00:39,200 --> 01:00:40,040 HEAR MORE FROM PARTICIPANTS. 1410 01:00:40,040 --> 01:00:42,040 SO MY APOLOGIES FOR GOING ON A 1411 01:00:42,040 --> 01:00:43,040 BIT. 1412 01:00:43,040 --> 01:00:44,080 >>THIS WAS GREAT. 1413 01:00:44,080 --> 01:00:45,760 THANKS EVERYBODY AND HOPEFULLY 1414 01:00:45,760 --> 01:00:47,280 WE WILL SEE YOU THE FIRST 1415 01:00:47,280 --> 01:00:48,240 WEDNESDAY IN OCTOBER, HAVE A 1416 01:00:48,240 --> 01:00:50,280 GOOD SUMMER AND TIME UNTIL THEN. 1417 01:00:50,280 --> 01:00:51,280 BYE-BYE, EVERYBODY. 1418 01:00:51,280 --> 00:00:00,000 >>THANK YOU.