>>I WOULD LIKE TO WELCOME EVERYONE TO THE 13TH MEETING OF THE BRAIN NEUROETHICS WORK GROUP. FONDLY REFERRED TO AS THE NEWG OR THE NEWG. I WANT TO EXTEND A WARM WELCOME THE OUR WORKING GROUP CO-CHAIRS DR. HANK GREELY AND CHRISTINE GRADY AS WELL AS MEMBERS OF THE WORKING GROUP ALONG WITH OUR INVITED SPEAKERS AND PANELISTS WHO WILL BE JOINING US TODAY. MY NAME IS ANDREA MITCHENER, DEPUTY DIRECTOR O OF THE NIH BRAIN INITIATIVEINITIATIVE. I SERVE AS DESIGNATED FEDERAL OFFICIAL FOR TODAY'S MEETING. NOTICE I'M A NEW FACE IN THIS ROLE AS WALTER MENTION AND I WANT TO TAKE A QUICK MOMENT TO ACKNOWLEDGE THE TREMENDOUS CONTRIBUTIONS OF MY PREDECESSOR DR. RAMOS, DR. RAMOS RECENTLY TOOK A POSITION AT THE DANA FOUNDATION AS THE VICE PRESIDENT OF NEUROSCIENCE WITHIN SOCIETY. SO WHILE SHE WAS AT NIH IN ADDITION TO BEING DFO FOR THIS GROUP, DR. RAMOS WAS VIEW MENTAL IN FACILITATING THE RAPID GROWTH OF NEUROETHICS EFFORTS FOR THE BRAIN INITIATIVE AND REALLY SENDING A STRONG FOUNDATION FOR NIH AS AN EMERGING LEADER IN THIS SPACE SO WE ARE VERY GRATEFUL FOR HER CONTRIBUTIONS, THANK YOU, KARA. AS MOST OF YOU KNOW THE NEUROETHICS WORKING GROUP IS NOT A FORMAL ADVISORY GROUP LIKE THE BRAIN MULTI-COUNCIL WORKING GROUP THE NEWG IS A WORKING GROUP OF ADVISORY COUNCIL OF THE NIH INSTITUTES AND CENTERS THAT PARTICIPATE IN THE BRAIN INITIATIVE. IT WAS ESTABLISHED BECAUSE OF THE RECOGNIZED NEED FOR INPUT ON NEUROETHICAL CONSIDERATIONS RELATED TO THE RESEARCH THAT IS SUPPORTED THROUGH THE BRAIN INITIATIVE. THE NEWG DELIBERATES ONETH CAT QUESTIONS THAT COME UP IN CONTEXT OF BRAIN RESEARCH AND CAN OFFER INPUT AND FURTHER POINTS FOR CONSIDERATION. SO TODAY WE AGAIN HAVE A ZOOM MEETING AS WE CONTINUE IN THE VIRTUAL FORMAT UNTIL THE DAY THAT WE CAN ONCE AGAIN MEET IN PERSON. WE'LL START TODAY WITH AN UPDATE FROM THE BRAIN DIRECTOR, DR. JOHN NGAI. FOLLOWING THAT WE'LL DEVOTE MAJORITY OF TODAY TO A SESSION OF ETHICAL CHALLENGES IN IMPLANTED NEURODEVICE RESEARCH INVOLVING HUMAN PARTICIPANTS INCLUDING A PANEL SESSION AND DISCUSSION. WE'LL THEN DEDICATE SOME TIME TO THINK ABOUT FUTURE ACTIVITIES AND WE'LL WRAP UP THE DAY WITH UPDATES FROM THE NEWG MEMBERS ABOUT WHAT EVERYONE HAS BEEN UP TO IN THE NEUROETHICS SPACE. SO WE HAVE NO NEW NEWG MEMBERS JOINING US BUT WE HAVE A MEMBER ROTATING OFF FOLLOWING TODAY'S MEETING AND JOHN WILL DESCRIBE THESE TRANSITIONS IN A FEW MINUTES. SO JUST A FEW HOUSEKEEPING ITEMS BEFORE WE START. AS REMINDER THIS OPEN SESSION IS BEING VIDEOCAST LIVE IN PUBLIC DOMAIN. THE RECORDING WILL BE ARCHIVED FOR VIEWING ON THE NIH AND BRAIN WEB SITES. DURING PRESENTATIONS PLEASE MUTE YOUR LINE AND TURN OFF YOUR VIDEO WHEN NOT SPEAKING, THIS IS HELP FOR THE VIDEOCAST. AND DURING DISCUSSION PLEASE TURN ON YOUR VIDEO AND USE THE RAISE HAND OPTION IF YOU HAVE QUESTIONS. WE'LL CALL ON YOU TO UNMUTE YOURSELF FOR QUESTIONS THAT YOU WOULD LIKE TO RAISE OR COMMENTS FOR GENERAL DISCUSSION OPT FOR THE RAISE HAND FEATURE RATHER THAN TYPING THE QUESTIONS IN THE ZOOM CHAT. SO YOUR VIDEOCAST ATTENDEES CAN SEE THE QUESTIONS. I KNOW EVERYONE IS REALLY BUSY AND WE VERY MUCH APPRECIATE YOUR TIME AND YOUR INPUT TODAY. JUST A FINAL NOTE THIS CAN'T HAPPEN WITHOUT REALLY FABULOUS TEAM WE HAVE AT NIH. THANK YOU TO COLLEAGUES WHO MANAGE THE VIDEOCASTING, ESPECIALLY WANT TO EXTEND THANKS TO DR. NINA SHOE, THE SCIENCE COMMITTEE SPECIALIST FOR THIS WORKING GROUP. ALONG WITH DR. HENDRIX AND KRISTIN DUPRUIS. LAST BUT NOT LEAST DR. NGAI BRAIN DIRECTOR FOR SUPPORT OF NEUROETHICS IN GENERAL AND NOW I WILL BE TURNING IT OVER TO YOU, JOHN FOR YOUR UPDATE. >> THANK YOU. DO I REMEMBER HOW TO DO THIS? ARE YOU SEEING THE CORRECT SLIDES? AS ANDREW MENTIONED WE HAD TRANSITIONS IN AND AROUND NEWG. FIRST TO MENTION IS STEVE HYMAN WILL CYCLE OFF, BEFORE I CAME ON AS BRAIN DIRECTOR MAY 2020, WORKING GROUP MEMBERS WERE APPOINTED TO INDEFINITE TERMS AND TO OUR WORKING GROUP BOTH NEWG AND MULTI-COUNCIL WORKING GROUP OR NCWG. WILLINGNESS TO GO ALONG WITH THIS SHENANIGAN COMPARED TO MORE TYPICAL FOUR YEAR APPOINTMENTS ADVISORY COMMITTEES AND STUDY SECTIONS SPEAKS TO THE GREAT STARTUP SPIRIT OF EVERYONE WHO HELPED MAKE BRAIN I THINK THE VIBRANT ENTERPRISE THAT IT IS TODAY. BUT TIME HAS COME TO TARGET GIVING PEOPLE THEIR LIVES BACK SO WE ARE CYCLING FOLKS OFF THE COMMITTEES AND APPOINTING NEW MEMBERS NOW TO FOUR YEAR TERMS. SO BEHALF OF EVERYONE HERE AT BRAIN AND ENTIRE NEUROSCIENCE COMMUNITY I WANT TO I WANT TO EXTENT UNENDING GRATITUDE AS WE BID FAIR WELL TO STEVE HYMAN WHO SERVED SINCE 015. HE MADE ENORMOUS CONTRIBUTIONS TO BIOMEDICINE IN THIS COUNTRY AND THE WORLD. HE HELD A NUMBER OF VERY IMPORTANT POSTS AND STEVE WE LOOK FORWARD TO STAYING IN TOUCH WITH YOU AND SEEING ALL THE GREAT THINGS YOU CONTINUE TO DO IN THE FIELD OF NEUROSCIENCE AND NEUROPSYCHIATRY NEUROPSYCHIATRY. AS ANDREA ALSO MENTIONED ANOTHER PERSON VERY NEAR AND DEAR TO US, CHARA MAY ROSE, I THINK YOU IN THE VIRTUAL SPACE WATCHING US. SHE'S BEEN INSTRUMENTAL ESTABLISHING NEUROETHICS AS A KEY PIECE OF WHAT WE DO HERE NOT ONLY IN THE BRAIN INITIATIVE BUT ACROSS NINDS AND NOW THANKS TO HER RECENT EFFORTS BEFORE LEAVING ACROSS THE NIH IN GENERAL. KHARA WORE MANY HATS HERE YOU CAN SEE. SHE CO-LED NEUROETHICS PROGRAM TEAM, SHE DIRECTED INUREMENTICS PROGRAM, SHE WAS CHIEF OF NEUROSCIENTIST CONTENT AND STRATEGY AT NINDS, AND CO-CHAIR OF THE NIH COORDINATING COMMITTEE FOR BIOETHICS RESEARCH AND CHAININGING. SHE'S NOW TAKING A NEW EXCITING ROLE AS VICE PRESIDENT OF NEUROSCIENCE WITHIN SOCIETY AT THE DANA FOUNDATION AND WE LOOK FORWARDING TO WORKING WITH HER IN HER NEW ROLE. WE MISS YOU DEARLY BY VERY HAPPY FOR YOU. SO I WANT TO GIVE YOU A FEW UPDATES OF THE GOINGS ON AROUND HERE. BRAIN ANYWHERETIVE STARTED A DATA SHARING POLICY LAST YEAR. IT DOVE TAILS WITH AND PRECEDES THE BROADER DATA SHARING POLICY COMING THROUGH NIH MORE GENERALLY. OUR POLICY REQUIRES INVESTIGATORS WHO ARE GENERATING ANY SIGNIFICANT DATA SETS TO DEPOSIT THE DATA WITH APPROPRIATE METADATA INFORMATION AS WELL AS MEETING REQUIRED QUALITY CONTROL STANDARDS TO ONE OF ABOUT HALF DOZEN DATA ARCHIVES THAT ARE SUPPORTED BY BRAIN. WE JUST ROLLED THIS OUT LAST YEAR. AND WE ARE NOW WORKING WITH DPIs TO MAKE SURE THAT ALL GOES WELL AND THE COORDINATED APPROPRIATELY WITH THE ARCHIVE MANAGERS. AGAIN, THIS DOVE TAILS WITH THE NIH DATA SHARING POLICY WHICH IS ROLLING OUT NOW AND THIS IS VERY IMPORTANT TO MAKE SURE THAT THE RESOURCES WE GENERATE THROUGH BRAIN AND THROUGH NIH FUNDED RESEARCH ARE AVAILABLE FOR ALL TO BENEFIT FROM. I WANT TO POINT OUT THIS INFORMATION FOR GENOMIC DATA SHARING POLICY. THIS IS JUST TO KEEP PACE WITH THE EVOLVING SCIENTIFIC OPPORTUNITIES BUT ALSO THE POTENTIAL RISKS INVOLVED AS WE GENERATE MORE DETAILED INFORMATION THAT WILL BE KEY FOR BIOMEDICAL RESEARCH AND ADVANCES BUT ALSO RAISING SIGNIFICANT ISSUES ABOUT PRIVACY GIVEN THAT MANY GENOMIC DATA THEMSELVES CAN BE USED TO DEIDENTIFY THIS SOURCE INDIVIDUAL. ONE CAN SUBMIT COMMENTS AT THE LINK PROVIDED BELOW AND I DO ENCOURAGE YOU TO THINK ABOUT THIS AND SUBMIT YOUR COMMENTS BY THE REPLY DATA FEBRUARY 28 IF YOU HAVE SOME GOOD PERSPECTIVES TO SHARE. NOW, AS I HOPE YOU CAN APPRECIATE GIVEN WE ARE MEETING HERE AS THE NEUROETHICS WORKING GROUP BRAIN DOES HAVE A COMMITMENT TO SUPPORTING NEUROETHICS RESEARCH AND HAVING A BETTER UNDERSTANDING OF THE IMPACTS THAT OUR RESEARCH IS HAVING ON THE HUMAN CONDITION AT LARGE. WE HAVE AN OPEN CALL FOR SUPPLEMENTS TO EMBED ETHICISTS WITHIN CURRENTLY BRAIN INITIATIVE FUNDED RESEARCH, NOTICE IS POINTED OUT HERE. THIS IS REALLY TO ENHANCE SCIENTIFIC IMPACT OF CURRENTLY FUNDED PROJECTS INTEGRATING AGAIN THESE PERSPECTIVES AND APPROACHES WITHIN THE PROJECTS. AND THERE ARE A NUMBER OF AREAS COULD BE REALLY QUITE USEFUL FOR STUDY AND ARE LISTED HERE BUT CERTAINLY NOT ALL INCLUSIVE LIST. WE HAVE A ROLLING SUBMISSION LIST AND REVIEW PROCESS THROUGH APRIL OF THIS AREA. IS SO I WON'T GET INTO THIS TOO DEEPLY HERE, I WILL SPEAK MORE ABOUT THIS TOMORROW AT THE MULTI-COUNCIL WORKING GROUP BUT WE ARE IN THE MIDST OF LAUNCHING A THE THREE SO CALLED BRAIN 2.0 TRANSFORMATIVE PROJECTS RECOMMENDED BY THE BRAIN 2.0 WORKING GROUPS THAT COULD HAVE POTENTIAL FOR TRANSFORMING THE WAY WE UNDERSTAND THE NERVOUS SYSTEM, THE BRAIN IN PARTICULAR, WITH AN EYE TOWARDS TREATING HUMAN BRAIN DISORDERS. THE THREE PROJECTS WE CHOSE TO PURSUE ON THE HUMAN BRAIN ATLAS, THE DEVELOPING TOOL KIT FOR GETTING PRECISION CELL ACCESS TO BRAIN CELL TYPES, AS WELL AS WHOLE BRAIN MICROCONNECTIVITY PROJECT. AND THE IDEA BEHIND THESE PROJECTS IS TO PROVIDE THE GROUND TRUTH WITH THE CELL ATLAS AND CONNECTIVITY PROJECT AND MEANS OF TESTING AND LEVERAGING THAT INFORMATION WITH THE PRECISION ACCESS TOOLS TOOLS. SO IN MANY MANY WAYS THESE THREE PROJECTS WHICH WE SUPPORT AND SYNERGISTIC AND WE ARE EXCITE ABOUT THESE PROJECTS, WE ARE WELL ON OUR WAY TO LAUNCHING THE HUMAN CELL ATLAS PROJECTS THOSE APPLICATIONS WERE JUST RECEIVED, WE STARTED ROLLING OUT THE AWARDS AND MORE UNDER REVIEW FOR PRECISION CELL ACCESS AND BRAIN MICROACTIVITY PROJECT, THESE FOAs ARE DUE TO BE ISSUED THE NEXT FEW MONTHS.LY TALK ABOUT THAT MORE TOMORROW AND IF YOU ARE INTERESTED IN READING FURTHER, JUST PUBLISHED A COMMENTARY ON THE TRANSFORMATIVE PROJECTS IN CELL THAT CAME OUT A FEW WEEKS AGO. I THOUGHT I WOULD JUST FINISH UP BY TOUCHING ON A FEW SCIENTIFIC ADVANCES. I WON'T GET INTO DETAIL HERE BUT IT WILL FRAME THE DISCUSSION WE'LL HAVE IN A FEW MINUTES THE ETHICAL AND OTHER IMPLICATIONS OF STUDYING HUMANS IN INVASIVE TRIALS. THIS IS A STUDY I TOUCHED ON THIS I THINK AT THE LAST NCWG FROM PHIL STAR'S GROUP UCS, IF THEY USED BIDIRECTIONAL ELECTRODES IN THE TREATMENT OF MOVEMENT DISORDERS AND PARKINSON PATIENTS AND THE IDEA HERE IS TO USE ADAPTIVE STIMULATION TO FINE TUNE THE STIMULATION TO THE PATIENTS NEED. THE COOL THING HERE IS THAT THE DEVICE, THE ELECTRODES AND CONTROLLERS ARE FULLY IMPLANTED AND THE COMMUNICATE WIRELESSLY WITH THE TABLET AND THEREFORE CAN BE USED TO IDENTIFY PERSONALIZED PHYSIOLOGICAL SIGNATURES OF SAY DESIGNEES SHAH AND TO TAILOR THE STIMULATION ACCORDINGLY, IT WORKS WELL IN EARLY STUDIES AND THESE ARE ONGOING. SO VERY EXCITING AREA, IT DOES RAISE SEVERAL ISSUES IN TERMS OF PRIVACY, AS WELL AS THE PARTICIPATION OF PATIENTS IN CLINICAL TRIALS BUT THIS IS REALLY A VERY EXCITING ADVANCE. KINESIA. LAST YEAR, A STUDY FROM UCSF EDDIE CHANG'S GROUP LOOKED AT A PATIENT WITH TREATMENT REFRACTORY DEPRESSION WHO WAS IMPLANTED AND USE THESE DBS ELECTRODES TO STIMULATE TO SEE IF THEY CAN OFFSET OR AMELIORATE SOME OF THESE SYMPTOMS OF DEPRESSION AND IN THIS CASE THIS ONE CASE STUDY THAT SEEMEDDED TO HAVE SUCCESS. SO THIS OPENS THE DOOR FOR USING DEEP BRAIN STIMULATION TO TREAT TREATMENT REFRACTORY DEPRESSION AS WELL AS OTHER NEUROPSYCHIATRIC DISORDERS SO EXCITING ADVANCE, WE HAVE A LONG WAY TO GO BUT THERE IS PROMISE HERE IN THIS BURGEONING FIELD. A PAPER ALSO IS PUBLISHED IN NATURE MEDICINE FROM CHEF'S GROUP, USE THESE BIDIRECTIONAL ELECTRODES TO RECORD FROM A PATIENT WITH OCD OVER A THOUSAND HOURS OF BRAIN RECORDINGS AND HOPE DOWN THE LINE IS THAT BY USING THESE RECORDINGS WE CAN FIND ELECTROPHYSIOLOGICAL BIOMARKERS FOR ASPECTS OF THE CONDITION AND USE TO TAILOR THERAPIES IN ADAPTIVE WAY NOT UNLIKE THE WAY ADAPTIVE DBS IS APPLIED TO MOVEMENT DISORDERS. SO I'M JUST HIGHLIGHTING THESE THREE STUDIES BRIEFLY TO GIVE A GENERAL OVERVIEW, THERE ARE THOSE HERE ON THE COMMITTEE HAVE DONE STUDIES HAVE MORE KNOWLEDGE ABOUT THEM AND I THINK IT WILL BE GREAT TO THINK ABOUT STUDIES THAT IMPACT POTENTIAL BUT ALSO THE RISK THEY ENTAIL AND THE BURDEN, I SHOULDN'T SAY BURDEN, BUT THE ROLE THAT HUMAN PARTICIPANTS ARE RESEARCH PARTICIPANTS PLAY IN THIS GROUND BREAKING RESEARCH. WITH THAT I WILL STOP. I THINK WE MIGHT BE A LITTLE OVER TIME BUT IF THERE'S ANY QUESTIONS PERHAPS WE CAN TAKE A FEW QUICK ONES. >> I'M NOT SEEING ANY HANDS RAISED SO I THINK WE CAN GO AHEAD AND MOVE -- NO. JIM. PLEASE GO AHEAD. >> THANKS, ANDREA. JOHN, I DON'T KNOW IF YOU HAVE HAD THIS INFORMATION BUT FOR THE EMBEDDING OF NEUROETHICIST IN TO ONGOING BRAIN GRANTS HOW MANY HAVE DONE THAT, HOW MANY OF THE SUPPLEMENTS HAVE BEEN GIVEN AND DO YOU THINK IT IS WORKING. >> NINA OR JAY, DO YOU WANT TO WEIGH IN, A NEW RFA NEW NOTICE I BELIEVE? >> I GUESS THIS IS JAY I WOULD SAY TWO THINGS. ONE IS WE HAVE DONE A SIMILAR THING IN THE PAST AND THAT MAYBE WHAT JIM IS REFERRING TO. I DON'T HAVE NUMBERS AT HAND, WE DON'T HAVE ANY APPLICATIONS FOR THIS YEAR. BUT I CAN SAY THERE HAVE BEEN REALLY FANTASTIC CASES OF THIS MIND FRANCIS SHANNON, EMBEDDED IN UO 1 AND THAT PROJECT LED TO A FULL NEUROETHICS APPLICATION AND THEN GRANT AS WELL. AND THERE IS A FEW OTHER CASES AS WELL. >> THANKS, JAY. >> I WILL ADD THAT THIS IS -- THIS ACTIVITY IS BAKED IN TO SOME OF OUR FUNDING OPPORTUNITY ANNOUNCEMENTS, BUT THE SUPPLEMENT OPPORTUNITY BASICALLY OPENS THAT UP TO OTHER BRAIN AWARDEES. >> THANK YOU. >> ALL RIGHT. I DON'T THINK WE HAVE ANY OTHER QUESTIONS FOR YOU, JOHN. SO I THINK RIGHT NOW WE CAN TURN IT TO OUR CO-CHAIRS, DR.S CHRISTINE GRADY AND HANK GREELY. CHRISTINE, I BELIEVE YOU ARE UP FIRST. >> IF I CAN GET MY MUTE OFF I CAN BE ON FIRST. CAN YOU HEAR ME NOW? >> YES. >> SO FIRST I WANT TO THANK DR. NGAI AND DR. BECK EXL MITCHENER FOR THEIR LEADERSHIP AND GETTING US STARTED TODAY. AND AS A CO-CHAIR HANK AND I WOULD LIKE TO WELCOME EVERYBODY AND THANK YOU IN ADVANCE FOR YOUR CONTRIBUTIONS TO THE DISCUSSION TODAY. BEFORE I INTRODUCE THE NEXT SESSION I WOULD LIKE TO ECHO SOME OF THE THANKS THAT HAVE BEEN MADE IN ADDITION TO JOHN AND ANDREA, I WANT TO THANK THE PEOPLE BEHIND THE SCENES AND MOST ESPECIALLY NINA, AND DR. HENDRIX AND DUPRUIS BECAUSE THEY DO A LOT OF PREPARATORY WORK FOR THESE MEETINGS. ALSO THANKS STEVE IN NEWG, GREAT TO HAVE YOU AND WE'LL MISS YOU AND THANKS TO KHARA WHO I THINK IS LISTENING AND WE MISS HER TERRIBLY AND WE ARE GLAD SHE IS STILL GOING TO BE AVAILABLE TO COLLABORATE IN DIFFERENT WAYS SO WE LOOK FORWARD TO WORKING WITH YOU IN YOUR NEW RESPONSIBILITIES. SO TODAY OUR FIRST SESSION TODAY IS ENTITLED ANDREA MENTIONED, ETHICAL CHALLENGES IN IMPLANTED NEURAL DEVICE RESEARCH WITH HUMAN PARTICIPANTS. SO MANY OF YOU I'M SURE ARE AWARE OF SOME OF THE ETHICAL CHALLENGES IN THIS KIND OF RESEARCH FROM YOUR OWN WORK. AND THE NEWG IS ALSO DISCUSSED SOME OF THESE CHALLENGES IN THE PAST. WE HAD A WORKSHOP A FEW YEARS AGO RELATED TO INVASIVE NEURO DEVICES THAT ALLO DEVICES THATRESULTED IN THE JAMA NEUR OLOGY PAPER IN MY OPINION THERE ARE IMPORTANT CONTRIBUTION THERE ARE ISSUES WE DIDN'T DISCUSS AT THIS WORKSHOP AND WE HAVEN'T DISCUSSED IN NEWG. AND THERE ARE LOTS OF ONGOING ETHICAL CHALLENGES IN HUMAN RESEARCH WITH IMPLANTED NEURAL DEVICES. FURTHER I THINK AND IMPORTANTLY FOR TODAY'S DISCUSSION THERE ARE SPECIFIC CHALLENGES OR MAYBE THE MOST PRESSING OR VEXING CHALLENGES THAT DIFFER DEPENDING ON THE -- EXACT NATURE OF THE RESEARCH. SO WE ARE GOING TO TRY TO FOCUS A LITTLE BIT ON THAT TODAY. WE ARE GOING TO START WITH TWO BRIEF PRESENTATIONS FROM BRAIN FUNDED NEUROETHICS INVESTIGATORS. ONE OF WHOM WILL FOCUS ON INTRACRANIAL OR INTEROPERATIVE RESEARCH AND THE OTHER ON ETHICAL CONSIDERATIONS IN LONG TERM INTERACTIVE STUDIES. AFTER THESE TALKS WE ARE GOING TO HAVE A PANEL OF THREE INVESTIGATORS AND ONE RESEARCH PARTICIPANT WHO ARE HELP US CONSIDER A NUMBER OF ETHICAL ISSUES AND ENGAGE IN DIALOGUE WITH ALL OF US ON THIS ZOOM. AS YOU ARE LISTENING, I INVITE YOU TO BEGIN TO FORMULATE YOUR QUESTIONS AND THE THINGS YOU WOULD LIKE TO TALK ABOUT. ESPECIALLY WITH RESPECT TO HOW THE ETHICAL CHALLENGES MIGHT DIFFER IN DIFFERENT TYPES OF NEURAL DEVICE RESEARCH AND HOW THOSE MIGHT GUIDE OUR DISCUSSION GOING FORWARD. SO WITH THAT I'M GOING TO INTRODUCE OUR FIRST SPEAKER, OUR FIRST SPEAKER IS DR. ASHLEY FEINSINGER, A BIOETHICS FACULTY MEMBER AT THE DAVID GETHIN SCHOOL OF MEDICINE DEPARTMENT OF PHILOSOPHY AT UCLA. HER INTERESTS LIE AT THE INTERSECTION OF ETHICS PHILOSOPHY OF LANGUAGE AND MEDICINE, AND SHE RECEIVED HER Ph.D. IN PHILOSOPHY FROM UCLA. SHE WORKS CLOSELY WITH DEPARTMENT OF NEUROSURGERY ON ETHICS OF INVASIVE NON-THERAPEUTIC HUMAN NEUROSCIENCE RESEARCH AND NOTION OF SOCIETAL BENEFIT AND THIS COLLABORATION IS SUPPORTED BY BRAIN. DR. FEINSINGER WILL SPEAK TO US ABOUT INVESTIGATORS PERSPECTIVES ON ETHICAL COMMITMENTS, PRINCIPALS AND PRACTICES GUIDING INTRACRANIAL NEUROSCIENTIFIC RESEARCH IN HUMANS. BELL COME, ASHLEY. -- WELCOME, ASHLEY. >> THANK YOU SO MUCH, DR. GRADY. GRADY. LET ME TRY TO SHARE MY SCREEN A SECOND. >> CAN EVERYONE SEE THE SLIDES? GREAT. FIRST I WANT TO THANK THE NEUROETHICS WORKING GROUP FOR HAVING ME HERED TO TO DISCUSS ETHICAL COMMITMENTS PRINCIPLES AND PRACTICES GUIDEN INTRACRANIAL NEUROSCIENTIFIC RESEARCH IN HUMANS. I'M GRATEFUL FOR THIS OPPORTUNITY, I KNOW SOME OF YOU I HAVE WORKED WITH YOU IN THE PAST AND I THINK THIS IS A FANTASTIC FORUM FOR PUSHING FORWARD SOME OF THIS WORK. SO I WOULD LIKE TO START WITH ACKNOWLEDGMENTS, THE WORK I WILL TALK ABOUT TODAY IS THE RESULT OF LARGE COLLABORATIVE EFFORT BETWEEN NUMEROUS DISCUSSIONS AND ETHICAL CONVERSATIONS, WITH MEMBERS OF THE ROH CONSORTIUM OF THE BRAIN INITIATIVE. SO THIS IS RESEARCH OPPORTUNITIES IN HUMANS CONSORTIUM. AND IT IS MADE UP OF MORE THAN 30 INVESTIGATORS FUNDED BY THE NIH TO DO BASIC HUMAN NEUROSCIENCE RESEARCH. THAT RESEARCH VARIES IN KIND AND I WILL TRY TO WALK THROUGH THE DIFFERENT TYPES OF RESEARCH THAT THESE INVESTIGATORS DO. AND THE ETHICAL FRAMEWORK THAT I'LL PROPOSE TODAY HOW THAT INTERSECTS WITH THESE VERY DIFFERENT TYPES OF STUDIES. AS MENTIONED I'M ALSO FUNDED BY THE BRAIN INITIATIVE TO DO ETHICS COLLABORATIVE WORK WITH PARTICIPANTS WHO JOIN INTEROPERATIVE STUDIES SO GRATEFUL FOR THAT SUPPORT AND ALSO INCREDIBLY GRATEFUL TO THE SUPPORT OF THE NIH FOR FACILITATING SOME OF THESE LARGE COLLABORATIVE CONVERSATIONS AND FOR REALLY EMBRACING AN OPPORTUNITY FOR INVESTIGATORS TO GET TOGETHER AND SPEAK WITH AN EMPHASIS THEMSELVES ABOUT THINKING HOW TO FORMULATE ETHICAL PRINCIPLES TO GUIDE THEIR WORK. SO I WILL BE FOCUSING TODAY ON PRESENTING THE ETHICAL FRAMEWORK THAT HAS RECENTLY BEEN PUBLISHED IN A PAPER IN NEURON, WHICH IS CO-AUTHORED BY MYSELF AND THE INVESTIGATORS FROM THE ROH CONSORTIUM. WHICH EXPLORES PRACTICES AND EXPERIENCES FROM THE PERSPECTIVE OF INVESTIGATORS WHO CONDUCT THIS RESEARCH WITH HUMANS, WITH IMPLANTED DEVICES. SO AS AN OUTLINE I WILL JUST SURVEY THE DIFFERENT TYPES OF RESEARCH THAT ROH INVESTIGATORS PARTICIPATE IN. I WILL PRESENT SOME OF THE ETHICAL ISSUES AT THE FOREFRONT OF THAT RESEARCH TRYING TO STAY TRUE TO THE DIFFERENCES BETWEEN THE STUDIES AND TRYING TO HIGHLIGHT ISSUES IN INTEROPERATIVE RESEARCH. I WILL HIGHLIGHT THE NOTABLE KNEETURES OF THE PROPOSAL IN THIS PAPER, I THINK IT IS ACTUALLY -- FEATURES, IT IS QUITE INTERESTING, IT HAS BEEN QUITE EYE OPENING TO SEE HOW THINGS ARE PRESENTED TO INVESTIGATORS IN THE ISSUES THAT THEY FIND AT THE FOREFRONT. THEN WE'LL END WITH SOME QUESTIONS FOR CONTINUED WORK IN THIS SPACE. SO THE KIND OF RESEARCH THAT I WILL BE FOCUSED ON TODAY IS BASIC INTRACRANIAL RESEARCH, RESEARCH CONDUCTED IN CLOSE CONCERT WITH NEUROSURGICAL INTERVENTIONS WHICH PROVIDES RESEARCHERS WITH A UNIQUE TO PEER INTO THE BRAIN SO TO SPEAK AND GAIN UNPARALLELED ACCESS TO HUMAN BRAIN FUNCTION. SO FOR EXAMPLE, WE HAVE IN COLUMN ONE RESEARCHERS MAY TAKE EXTRA REPORTING FROM THE THERAPEUTICALLY IMPLANTED DEVICE, SO THIS MIGHT BE EXTRA REPORTINGS MAKING USE OF A RNS NEUROPACE RNS IMPLANTED DEVICE IN A PARTICIPANT FOR EPILEPSY. IN COLUMN TWO RESEARCHERS MAY RECORD THROUGH THE MODIFICATION OF CLINICALLY INDICATED IMPLANT FOR RESEARCH PURPOSES. THROUGH MODIFIED WIRES TO DETECT INDIVIDUAL NEURONS FIRING DURING A PATIENT STAY IN THE EPILEPSY MONITORING UNIT. IN THREE RESEARCHERS MAY RECORD THROUGH EXTRA TEMPORARY IMPLANTS SO THIS FOR EXAMPLE MIGHT PLACE A TEMPORARY ECOG STRIP DURING THE DBS SURGERY TO RECORD ADDITIONAL TASKS. AND IN THE FOURTH COLUMN RESEARCH CONDUCTED AS PART OF INVESTIGATIONAL DEVICE TRIAL SO HERE WE SEE A PICTURE OF UTAH ARRAY, IMPLANTED FOR THE USE OF BCI RESEARCH BUT MAY ALSO BE USED FOR BASIC SCIENCE RESEARCH. SO IN THIS SLIDE WE SEE EXAMPLES OF PARTICIPANTS WHO MAKE THESE POSSIBLE AND WHAT IT LOOKS LIKE REALLY TO BE A PARTICIPANT IN ONE OF THESE STUDIES AND TO OFFER THESE OPPORTUNITIES TO INVESTIGATORS. SO IN SLIDE ONE WE HAVE A PARTICIPANT WEARING A MOBILE BRAIN MONITORING DEVICE THAT WORKS IN CONJUNCTION WITH AN RNS SYSTEM, THIS PARTICIPANT COMES TO THE LAB TO PARTICIPATE IN BASIC SCIENCE RESEARCH ABOUT MEMORY. IN COLUMN TWO WE HAVE A PARTICIPANT IN THE ENU PARTICIPATING IN BASIC RESEARCH ABOUT VISION AND EMOTION. IN COLUMN THREE WE HAVE A PATIENT PERFORMING COGNITIVE TEST, USING A JOY STICK DURING DEEP BRAIN STIMULATION SURGERY. FOR BASIC SCIENCE RESEARCH AND IN COLUMN FOUR WE HAVE A PATIENT IN A BCI STUDY WHO IS PLAYING THE PIANO VIRTUAL PIANO USING NEURAL BRAIN CONTROL BASED ON SCIENCE PRINCIPLES DERIVED FROM ONGOING UCI RESEARCH. SO WHILE THESE STUDIES ARE IMPORTANTLY DIFFERENT AND I APPRECIATE DR. BRIDIE'S POINT TRYING TO GRAPPLE WITH THAT DISCUSSION, APOLOGIZES FOR MY SLIDES. THEY HAVE SOME FEATURES IN COMMON. SO THEY ARE ALL UNITED IN THE FOLLOWING THREE WAYS. THEY SHARE THE GOAL OF UNDERSTANDING BASIC SCIENCE QUESTIONS ABOUT THE HUMAN BRAIN. THERE IS THE ABSENCE OF NEAR TERM THERAPEUTIC BENEFIT FROM PARTICIPANTS AND THEY MAKE USE OF INTRACRANIAL RECORDINGS AND STIMULATIONS IN HUMAN SUBJECTS WHO EITHER HAVE A CLINICAL NEED FOR NEUROSURGICAL INTERVENTION OR WHOSE CONDITIONS ALLOW THEM TO UNDERGO FOR THE SAKE OF STUDY. THERE ARE WELL KNOWN ETHICAL CHALLENGES FOR ALL THIS TYPE OF RESEARCH AND THIS IS NOTED IN THE LITERATURE AND MANY PEOPLE WHO ARE HERE TODAY MADE INCREDIBLE CONTRIBUTIONS TO THIS. THESE ARE SOME OF THE CONSIDERATIONS THAT FROM INVESTIGATORS PERSPECTIVES STAND OUT AS INCREDIBLY SALIENT. FOR ONE, THE UNIQUE CONTEXT OF THIS RESEARCH. ASIDE FROM THE FACT THAT PATIENTS HAVE A CLINICAL NEED FOR BRAIN SURGERY OFTEN, CLINICAL CARE AND RESEARCH OVERLAP IN SPACE AND TIME FROM MANY OF THESE STUDIES AND PARTICULARLY IN INTEROPERATIVE STUDIES WHERE IT IS THE SAME SURGICAL EVENT IN WHICH PARTICIPANTS ARE DOING TASKS FOR THERAPEUTIC BENEFIT OR DOING TASKS FOR RESEARCH. THERE IS A HIGH PREVALENCE OF DUAL ROLE CLINICIAN RESEARCHERS. FOR EXAMPLE, THE SURGEON FOR THE IMPLANTATION PROCEDURE MAY ALSO BE AN INVESTIGATOR FOR THE RESEARCH STUDY AND INTEROPERATIVE CASES. THERE'S QUESTIONS AND I HOPE YOU CAN TALK ABOUT THAT TODAY, ABOUT PATIENT PARTICIPANT VULNERABILITIES. NOT JUST VULNERABILITIES THAT ARISE FROM THINKING ABOUT THE NEUROLOGICAL OR PSYCHIATRIC DIAGNOSES OF THESE PATIENTS BUT ALSO FROM THINKING THE CONTEXT WHICH RESEARCH TAKES PLACE, PARTICULARLY THE SURGICAL CONTEXT. AS MENTIONED BEFORE, THIS TYPE OF RESEARCH IS ABLE TO BE DONE BECAUSE OF A RARE CLINICAL OPPORTUNITY AND THAT CREATE TENSION BETWEEN PRESSURE TO TAKE ADVANTAGE OF THAT OPPORTUNITY TO APPLY FOR GRANTSES, THE REWARDS OFFERED FOR THIS TYPE OF HIGH IMPACT RESEARCH AND ALSO PROTECTING PATIENTS WHO ARE IN A VERY UNIQUE POSITION. AND LASTLY AS MENTIONED BEFORE BUT REALLY CRUCIAL IS THE RESEARCH IS NON-THERAPEUTIC SO IT IS NOT AIMED PROVIDING BENEFITS BUT THERE MAYBE A RANGE OF ADDITIONAL RISKS AND THOSE MAY VARY DEPENDING ON CONTEXT OF RESEARCH. SOME OF THOSE RISKS MIGHT BE HARD TO QUANTIFY. SO EXTRA TIME IN THE OPERATING ROOM, EXTRA TIME IN THE OPERATING ROOM FOR EXAMPLE IS DIFFICULT TO QUANTIFY, UM COMPARE THAT WITH THE RISKS OF BATTERY DRAINAGE IF YOU ARE A -- YOU HAVE AN RNS SYSTEM AND PARTICIPATING WITH RESEARCH IN THE CLINIC. SO CONSIDERING THESE ETHICAL CONCERNS, INVESTIGATORS WANTED TO OFFER REFLECT ON THESE AND OFFER ETHICAL FRAMEWORK TO TRY TO PROMOTE DISCUSSION AND BEST PRACTICES IN THIS FIELD. THIS FRAMEWORK IS OFFERED AS A STARTING POINT FOR DISCUSSION SO IT IS REALLY GRATEFUL WE GET A CHANCE TO TALK ABOUT IT TODAY. IT IS MEANT FOR CRITICISM AND REFLECTION AND CONSIDERED ALONGSIDE OTHER FRAMEWORKS IN THE VIEWS OF PATIENT PARTICIPANTS. SO THE FRAMEWORK CONSISTS OF TWO FUNDAMENTAL ETHICAL COMMITMENTS AND ASSOCIATED PRINCIPLES AND SPECIFIC PRACTICES THAT INVESTIGATORS HAVE IMPLEMENTED OR THINK WOULD BE IMPORTANT TO CONSIDER GOING FORWARD SO HERE ARE THE TWO BASIC FUNDAMENTAL COMMITMENTS PROPOSED BY THIS GROUP OF RESEARCHERS. FIRST, MAINTAINING INTEGRITY OF CLINICAL CARE AND SPACE. SO -- APOLOGIES JOHN WHY IT'S DOING THAT. PRIORITIZING INTEGRITY OF CARE, MAINTAINING CARE GUIDED BY FUNDAMENTAL CLINICAL PRINCIPLES REQUIRES PRACTICES TO ENSURE THAT CARE IS NOT COMPROMISED PURPOSEFULLY OR INADVERTENTLY. NOTICE THIS PRINCIPLE IS NOT JUST OR THIS COMMITMENT IS NOT JUST ABOUT PATIENT COMPREHENSION OF THE SEPARATION OF CLINICAL CARE IN RESEARCH. BUT ALSO PROMOTING RESEARCH DESIGN THAT HONORS THE SEPARATION. THE SECOND FUNDAMENTAL COMMITMENT IS ENSURING VOLUNTARINESS OF PARTICIPATION AND THE PRINCIPLES IN THIS SPACE FOCUS ON CONSENT PRACTICES, WHICH MINIMIZE INFLUENCE, INFLUENCE OF THE INVESTIGATOR, BUT OPTIMIZE PATIENT UNDERSTANDING AND THAT'S SOMETHING THAT I THINK IS QUITE AT THE CENTER OF THE ETHICAL CHALLENGES OF THIS RESEARCH, HOW TO FIND THAT MIDDLE GROUND. THEY ALSO FOCUS ON ATTENTION TO THE NOTION OF CONTINUED CONSENT AND THE RIGHT TO WITHDRAW. HOW THAT MIGHT LOOK DIFFERENT DEPENDING ON TYPE OF STUDY AND THE IMPORTANCE OF MEANINGFUL DISCUSSIONS OVER TIME TO DISCUSS CONCERNS WITH PARTICIPANTS, AS PATIENT VIEWS ABOUT RESEARCH MAY CHANGE AS HAY EXPERIENCE WHAT IT IS LIKE TO BE PART OF STUDY. SO I WANTED TO SHOW WHAT THE PAYMENT iFRAMEWORK LOOKS LIKE IN THE PAPER THERE'S TABLES WITH EACH COMMITMENT, THE COMMITMENT ON THE LEFT,ASSOCIATED PRINCIPLES DOWN CENTER MOTIVATED BY THE COMMITMENT AND THE OTHER SIDE SEE EXAMPLES OF CURRENT PRACTICES THAT INVESTIGATORS USE TO TRY TO RESPOND TO THESE COMMITMENTS AND THEIR PRACTICE, INVESTIGATORS THINK WOULD BE HIGHLY VALUABLE TO CONSIDER. WE FOLLOW ACROSS CLINICAL CARE RESEARCH SHOULD BE UNCOUPLED. SUCH THAT CARE BE NEITHER COMPROMISED BY NOR CONDITIONAL ON RESEARCH PARTICIPATION AND THIS MUST BE COMMUNICATED TO PATIENTS, THAT IS AN INTERESTING THEME THROUGHOUT THE PROPOSAL AS WELL THE FOCUS ON COMMUNICATION. COMMUNICA TION. THEN WE HAVE CURRENT PRACTICES, TIME SPACE AND PERSONNEL AND SOME PROPOSED PRACTICES SEEK VERBAL CONFIRMATION AND UNDERSTANDING OF OPERATION OF CLINICAL CARE AND RESEARCH BUT ALSO CONSIDERATION OF STANDARDIZE VIDEOS HOW WE MAKE USE OF STANDARDIZE TOOLS TO PROVIDE CONSISTENT EXTERNAL VOICE TO DESCRIBE THAT SEPARATION AND WE MIGHT THINK HOW THOSE TOOLS ARE IMPLEMENTED WITH A VARIABLE APPROACH THAT RESPECTS DIFFERENCES BETWEEN STUDIES. THIS IS THE SECOND COMMITMENT AND I CAN COME BACK TO THIS IF FOLKS WANT TO DISCUSS IT. THIS IS AN EXAMPLE HOW WE COULD MOVE FROM COMMITMENT TO ASSOCIATED PRINCIPLES. FOR EXAMPLE, NUMBER FIVE INFORM CONTENT PROCEDURES, POTENTIAL FOR NEUROLOGICAL INJURY HIGH RATE OF INVESTIGATORS AND PATIENT VULNERABILITIES AND YOU WILL SEE AN EXAMPLE OF PRACTICES ON THE SIDE AND NOTABLY AGAIN SUGGESTION FOR THINKING ABOUT STANDARDIZE VIDEOS WITH EXPERSONAL PERSPECTIVES OF BASIC STUDY INFORMATION SO SUPPLEMENT MORE NUANCE CONVERSATIONS BETWEEN PATIENTS AND MEMBERS OF THE TEAM. I'LL SKIP IN INTEREST OF TIME BUT EXAMPLE HOW YOU MIGHT FORMALLY WALK THROUGH THE DIFFERENT ETHICAL JUSTIFICATIONS FOR PRACTICES AND REFLECT AND REFINE THEM. SO I THINK THERE IS A FEW NOTABLE FEATURES OF THIS PROPOSAL. THAT ARE SLIGHTLY DIFFERENT THAN SOME OF THE PAST WORK IN THIS PROJECT. HIGHLIGHT PERHAPS THE VALUE OF BRINGING INVESTIGATORS INTO THESE CONVERSATIONS. THE FIRST IS A BROADER FOCUS ON THE DUIALITY OF THE RESEARCH CONTEXT ITSELF, BEYOND FOCUS ON THE DUAL ROLE OF INVESTIGATOR. SO THINKING ABOUT REALLY WHAT THE CLINICAL SURGICAL CONTEXT DOES ETHICALLY FOR INVESTIGATORS PATIENT AND OTHER MEMBERS OF THE RESEARCH TEAM WHICH IS AN INTERESTING CONSIDERATION. THERE IS A DESIRE FOR SPECIFIC STANDARDIZE TOOLS BUT IN THE CONTEXT OF ALLOWING FOR HETEROGENEITY IN PRACTICE. THAT IS INTERESTING AS WELL, IT SUGGESTS AN INTEREST AND MODULAR APPROACH TO THINGS LIKE CONSENT, THAT COULD BE CUSTOMIZED DEPENDING ON NUANCES OF EACH STUDY. THE STANDARDIZE TOOLS MIGHT ALSO SUPPORT SMALLER RESEARCH TEAMS WHICH I THINK IS QUITE INTERESTING. THERE IS AN ESSENTIAL ROLE FOR PATIENT PARTICIPANT INPUT TO DEVELOP BEST APPROACHES SO WHEN THINKING ABOUT PRINCIPLES LIKE PATIENTS HAVE THE RIGHT TO WITHDRAW AT ANY TIME, THAT MAY LOOK VERY DIFFERENT IF YOU ARE PARTICIPATING IN RESEARCH INTEROPERATIVELY VERSUS BCI STUDY. SO HOW CAN WE LEARN FROM PATIENTS WHAT WOULD BE A MEANINGFUL WAY TO APPROACH THEM AND MEET THEM WHERE THEY ARE TO RESPECT THAT ETHICAL PRINCIPLE AND I THINK THE FRAMEWORK REFLECTS A DESIRE FOR ETHICAL COLLABORATION BETWEEN INVESTIGATORS. SO HOW CAN WE WORK TOGETHER, HOW CAN THEY WORK TOGETHER NOT ONLY SHARE DATA, WE ARE TALKING DATA SHARING PLANS BUT HOW THEY ALSO WORK TOGETHER TO SHARE ETHICAL CHALLENGES TO MOVE THIS FIELD FORWARD. TO PROPOSE QUESTIONS FOR CONTINUED WORK THAT I THINK THIS GROUP AND DISCUSSIONS ARE REALLY STILL GRAPPLING WITH THE FIRST IS WHAT ARE THE MOST IMPORTANT ETHICALLY SALIENT FEATURES OF THESE STUDIES. HOW DOES TEMPORAL RELATIONSHIP BETWEEN CLINICAL INTERVENTION MATTER. WHAT IS THE FULL IMPACT OF THE DUAL ROLE RESEARCHER, I THINK HOW CAN WE CONSIDER WHETHER THERE ARE POTENTIAL BENEFITS OR VALUE TO THIS DUAL ROLE AND HOW SHOULD THAT TRANSLATE INTO PRACTICE. WHAT WAYS ARE INTEROPERATIVE STUDIES UNIQUE. SO WHAT DOES THAT SURGICAL CONTEXT REALLY DO TO SPECIFIC PRACTICES THAT COULD BE IMPLEMENTED. THERE'S PRACTICAL QUESTIONS INCLUDING HOW SHOULD WE BEST DEVELOP STANDARDIZED TOOLS, WHAT COULD BE THE BENEFITS AND PITFALLS OF USING THINGS LIKE THAT THAT. HOW SHOULD WE THINK ABOUT THE LANGUAGE WE USE TO TALK ABOUT BENEFIT ACROSS THE DIFFERENT TYPES OF STUDIES TO DEVELOP LANGUAGE TO MAKE OPPORTUNITIES TO WITHDRAW MEANINGFUL AND METHOD LOGICAL QUESTIONS WHICH INTERESTS ME QUITE A BIT, PARTICULARLY THIS LAST ONE SHOULD INVESTIGATORS PARTICIPATE, IN DEVELOPING ETHICAL GUIDELINES FOR THEIR OWN WORK AND IF SO IN WHAT WAYS. I WOULD LIKE THE CLOSE WITH JUST A QUOTE FROM A PATIENT PARTICIPANT BECAUSE THE VALUE OF INVESTIGATORS INPUT IS CRUCIAL AND THEY ARE ON THE INSIDE MAKING MICRO AND MACRO DECISIONS IN WAYS FOLK LIKE ME AND ETHICISTS ARE NOT. SO THEY DO HAVE A CRUCIAL PERSPECTIVE BUT THIS HAS TO BE TEMPERED WITH THE PATIENT PERSPECTIVE SO I'M HAPPY TO TALK ABOUT THAT AS WELL.S THAT QUOTE FROM A PARTICIPANT WHO JOINED INTEROPERATIVE RESEARCH STUDY DURING HIS DBS SURGERY. SO THE BASIC THING IS IF I DIDN'T TRUST HIM, THEN I WOULDN'T HAVE AGREED TO HAVE THE SURGERY DONE AT ALL. SO I TRUST HIM WITH THAT AND THIS IS A WAY THAT CAN HELP ANYBODY I WAS GRATEFUL FOR THE PEOPLE THAT DID ANYTHING TO HELP SO I COULD HAVE THE SURGERY, SOMEBODY HAS TO PRACTICE STUFF AND LEARN THINGS. SO IT SEEMED LIKE AS LONG AS YOU ARE IN THERE, YOU MIGHT AS WITH HE WILL GO FOR IT. THANK YOU VERY MUCH, I LOOK FORWARD TO CONTINUED DISCUSSION IN THE REST OF THE PANEL. >> WONDERFUL. THANK YOU, ASHLEY, VERY MUCH, THAT WAS GREAT. I THINK WE HAVE A COUPLE OF MINUTES IF PEOPLE HAVE SPECIFIC QUESTIONS FOR ASHLEY WE WILL GET TO DIALOGUE WITH ASHLEY AGAIN AS PART OF THE PANEL. IF THERE ARE SPECIFIC QUESTIONS NOW, PLEASE RAISE YOUR HAND AND I WILL CALL ON YOU. MAYBE I CAN START -- I WAS VERY INTRIGUED BY THE IDEA OF STANDARDIZE TOOLS OR STANDARDIZE VIDEOS BUT I ALSO NOTED THAT YOU SAID THEY NEEDED TO BE CUSTOMIZED SO I'M WONDERING IF YOU CAN TALK ABOUT THAT TENSION BETWEEN WHAT THE GOAL OF STANDARDIZATION MIGHT BE AND HOW YOU WOULD STANDARDIZE AND CUSTOMIZE AT THE SAME TIME. >> THAT IS A CRUCIAL POINT. I DON'T KNOW THE ANSWER. I THINK PART OF THE MOTIVATION FOR THINKING ABOUT STANDARDIZE TOOLS IS IS TO PROVIDE A STARTING POINT FOR PEOPLE TO HAVE SOME OBJECTIVE AND SHARED TOOLS THAT COULD EITHER GET THEM STARTED HOW TO APPROACH PATIENTS IN A KIND OF CONSISTENT WAY, BUT ALSO TO HELP TEAMS WHO MAY NOT HAVE THE PERSONNEL OR INFRASTRUCTURE TO CREATE THAT SEPARATION. SOME GROUPS NOTED THAT WHAT THEY DO TO TRY TO REALLY PROMOTE PATIENT UNDERSTANDING OF THE SEPARATION OF THE CLINICAL AND THE RESEARCH IS THE CHANGE LITERALLY THE PERSON WHO IS IN THE ROOM WHO IS DOING THE CONSENT. IT MAY BE THAT SOME THINGS DON'T HAVE THOSE RESOURCES TO DO THAT. SO HAVING A KIND OF -- I GUESS IT DOESN'T HAVE TO BE STANDARDIZE TOOL BUT THAT TOOL COULD SERVE THAT PURPOSE AS WELL. HERE IS A VIDEO WITH AN EXTERNAL VOICE THAT SHARES SOME KIND OF COMMON ETHICAL PRINCIPLES ACROSS STUDIES THAT COULD BE USED TO FACILITATE THAT. THAT'S A GOOD POINT. DOES THAT ANSWER YOUR QUESTION A BIT? >> ABSOLUTELY. GREAT. SARA HAS HER HAND UP. >> HI. THANKS, ASHLEY, THAT WAS GREAT. MY QUESTION IS ALSO ABOUT VIDEO WHICH I THINK IS REALLY INTERESTING IDEA. AND I GUESS I'M JUST WONDERING WHAT YOUR THINKING WOULD GO OR THE GROUP IS THINKING WOULD GO INTO THAT SO IS IT MORE FOCUSED ON GETTING ACROSS THE DIFFERENCE BETWEEN WHAT IS CLINICAL AND WHAT IS RESEARCH OR THE RISK OF THE OR OR I GUESS WHAT I'M WONDERING ABOUT, THIS WILL I'M FORESHADOWING WHAT I WILL SAY LATER, WILL YOU INCLUDE THINGS FROM PREVIOUS PARTICIPANTS ABOUT WHAT IT FEELS LIKE TO BE IN THAT RESEARCH. BECAUSE I THINK THAT IS A THING EVEN THE RESEARCHER MAY KNOW FROM THE INSIDE AND IT MIGHT BE RELEVANT TO THINKING ABOUT PROS AND CONS OF JOINING. >> THAT IS A REALLY GOOD POINT. THIS CAME UP AS WELL. SOME THINGS THAT CAME UP WERE OPPORTUNITIES TO NOT JUST MAKE CONNECTIONS BETWEEN PATIENTS BUT ALSO -- BE CAREFUL HOW I SAY IT, EXPOSE PATIENTS OR PARTICIPANTS TO THE IDEA THEY ARE PART OF A RESEARCH COMMUNITY. SO THERE ARE OTHER PARTICIPANTS, WHAT IT IS LIKE FOR THEM TO CREATE THAT COMMUNITY, NOW THAT COULD BE FOR THE BENEFIT OF THE RESEARCHER OR COULD BE FOR BENEFIT OF THE PATIENTS. BE CAREFUL HOW YOU MIGHT DESIGN THAT. BUT THAT IS A FANTASTIC POINT. I WONDER HOW INVESTIGATORS WOULD FEEL ABOUT PROMOTING PARTICULAR PATIENT PERSPECTIVES. I THINK THERE MIGHT BE A LITTLE BIT OF A CONCERN ABOUT TOKENISM OR MAKING SURE IT IS REPRESENTATIVE OR HOW TO NOT SWAY. SO I THINK THE INITIAL MOTIVATION WAS SOMETHING LIKE OBJECTIVITY OR SOMETHING LIKE, GET THE KIND OF PARTICULAR RESEARCHER OR SURGEON SOME DISTANCE SO THE PATIENT HAS TIME TO CONSIDER PARTICIPATION IN EXTRACTION FROM THOSE INTIMATE RELATIONSHIPS THAT THEY MAY OR MAY NOT HAVE OR THEY WILL GET AS THEY GO THROUGH HAVING A SURGICAL INTERVENTION. HTHAT IS A FANTASTIC POINT POINT. I'M NOT SURE. I THINK IT WAS MORE STANDARDIZED WAY TO GIVE PATIENTS INFORMATION THAT COULD DISTANCE FROM THE POTENTIAL INFLUENCE. BUT THAT IS INCLUDING PARTICIPANT VOICES IS A REALLY IMPORTANT POINT. I THINK WE SHOULD THINK ABOUT HOW BEST TO DO THAT, ESPECIALLY WHAT PARTICIPANT STORIES GET IN AND WHAT PARTICIPANTS STORIES GET OUT AND ARE WE GOING TO SHARE THE STORIES OF THE FOLKS WHO HAD NOT SO GREAT EXPERIENCES AND HOW MIGHT WE DISCUSS THAT. IT WAS A GREAT POINT. >> THAT IS A GREAT POINT TO DISCUSS WITH THE PANEL BECAUSE WE HAVE THE VALUE OF A PARTICIPANT WITH US TO GIVE US HIS OPINION. SO I SEE TWO MORE HANDS UP WHICH I HOPE ARE RELATIVELY SHORT QUESTIONS SO WE DON'T TAKE UP TOO MUCH OF SARA'S TIME. BRUCE ROSEN, DO YOU HAVE A QUESTION? >> VERY QUICKLY. IT DOES SEEM ESPECIALLY SURGEON HAS THIS POSITION OF TRUST, IT WAS THAT LAST QUOTE FROM THE PARTICIPANT THAT REALLY INSPIRED IT. YET THAT TRUST IS NOT ALWAYS FREELY GIVEN IN THE SENSE THAT A PATIENT GOING IN FOR A PROCEDURE, A LIFE THREATENING SITUATION HAS A STRONG PSYCHOLOGICAL NEED TO DEVELOP THAT TRUST EVEN IF IT IS -- THERE WERE OTHER UNDER OTHER CIRCUMSTANCES NECESSARILY HAVE IT. SO WHAT ARE THE CONSIDERATIONS ON THE FACT THAT THIS NOTION OF TRUST THAT PATIENTS MAY EXTEND TO THEIR PHYSICIANS UNIQUE WORLD THAT PHYSICIAN RESEARCHER MIGHT HAVE, MIGHT ITSELF NOT NECESSARILY BE THIS KIND OF OPENLY GIVEN SENSE OF TRUST THAT WE MIGHT IMAGINE UNDER OTHER CIRCUMSTANCES. >> THAT IS A GREAT QUESTION AS WELL. I THINK IT POINTS TO A REALLY IMPORTANT DIFFERENCE BETWEEN INTEROPERATIVE STUDIES AN THESE LONGER TERM HIGHLY INTERACTIVE STUDIES WHERE EVEN FOR KIND OF THE RNS STUDIES, THERE IS MULTIPLE OPPORTUNITIES TO DEVELOP THAT RELATIONSHIP WITH THE INVESTIGATOR OVER TIME AND TO HAVE SPACE AND TIME FOR THESE CONVERSATIONS, WHERE YOU THINK THERE'S AT LEAST THE OPPORTUNITY FOR THAT TRUST TO BE KIND OF DEVELOPED AND ETHICALLY APPROPRIATE WAYS. FOR SOME OF THESE OTHER STUDIES ESPECIALLY INTEROPERATIVE STUDIES I REMEMBER ONE PATIENT WE INTERVIEWED, MET THE SURGEON AND INVESTIGATOR ONE TIME BEFORE THEY HAD THEIR SURGERY AND PARTICIPATED IN THE RESEARCH. SO HOW DO WE THINK ABOUT PRACTICES THAT CAN MAKE SURE THAT THAT TRUST IS DEVELOPED IN MORALLY GOOD WAYS. I THINK YOU ARE RIGHT, WHAT CHOICE DO YOU HAVE, IF YOU HAVE TO PARTICIPATE IN THE SURGERY, YOU NEED IT FOR YOUR HEALTH THAT TRUST GETS TROJAN HORSED IN A LITTLE BIT, YOU ALMOST DON'T HAVE A CHOICE AND IN A WAY GET TROJAN HORSE INTO THE RESEARCH AS WELL AND TRUSTING THAT INVESTIGATOR IN THAT SENSE. I THINK THE FRAME WORKS FOCUS ON REALLY WANTING TO UNDERSTAND THE FULL ROLE THAT DUAL ROLE, FULL RELATIONSHIP COMPONENT IS A PLACE FOR CRUCIAL FURTHER WORK SO THINKING ABOUT WHAT IT IS LIKE TO BE IN THAT RELATIONSHIP WITH SOMEONE AND HOW CAN WE DEVELOP ATTITUDES AND BEST PRACTICES AND IN SOME BAYS VIRTUE RESEARCHERS THEMSELVES TO TAKE CARE OF THAT TRUST. I DON'T KNOW IF THAT ANSWERS YOUR QUESTION. >> VERY THOUGHTFUL. THANK YOU. >> GREAT. ANOTHER GREAT TOPIC FOR THE PANEL. JIM. >> THANK YOU. REALLY INFORMATIVE. I HAD TO STEP AWAY FOR A MOMENT, YOU MAY HAVE MENTIONED THIS BUT I LIKE THE EMPHASIS ON COMMUNICATION BETWEEN PATIENT RESEARCHERS AND SURGEON AND EVERYONE WHO HAVED. BUT WHAT ABOUT DISCUSSION OF RESULTS OF BASIC RESEARCH IN FUNDAMENTAL RESEARCH? I DIDN'T SEE NOTES ABOUT THAT, DO YOU THINK THAT WILL IMPACT PATIENT PARTICIPANT ENTHUSIASM FOR POTENTIAL ADDITIONAL STUDIES OR ADDITIONAL INVOLVEMENT OR JUST THEIR OWN INVOLVEMENT WHETHER OR NOT THEY FEEL SATISFACTION. IS THERE A WAY OF EXPLAINING FUNDAMENTAL RESEARCH THAT YOU GUYS HAVE BEEN TALKING ABOUT? OR THINKING ABOUT? >> YEAH. THAT IS ALSO A FANTASTIC QUESTION. SO I THINK IN SOME OF THE INTERVIEWS WE HAVE DONE WITH PATIENT PARTICIPANTS, THERE IS EVEN IN INTEROPERATIVE STUDIES WHERE IT IS IN SOME WAYS ONE AND DONE YOU ARE DOING IT, DURING THE RESEARCH, THAT IS IT. THAT IS YOUR PARTICIPATION. WILL IS A DESIRE EVEN IN STUDIES TO KNOW WHAT HAS BEEN THE OUTPUT OF THE OUTCOME OF THIS RESEARCH. SO MANY PARTICIPANTS DON'T MAKE THE DECISION TO JOIN LIGHTLY. THEY VALUE WHAT THEY ARE DOING. HOW CAN WE KIND OF NUMBER ONE KEEP THEM ENGAGED AND LET THEM KNOW THE RESULTSES OF THEIR OWN PARTICIPATION BUT ALSO HOW WE CAN TALK WITH THEM THE RESULTS OF PARTICIPATION IN OTHER BASIC RESEARCH AND HOW IS THAT TRANSLATED OR NOT INTO THERAPEUTIC OPPORTUNITIES IN THE FUTURE. SO I THINK THAT IS SOMETHING THAT IS NOT THE FOCUS OF THIS PAPER BUT IT IS SOMETHING WE HAVE BEEN THINKING ABOUT A LOT, THINKING CONSENT, WE TALK ABOUT RISK AND WE WANT TO MAKE SURE PATIENTS UNDERSTAND THE RISKS. BUT WE DON'T TALK PERHAPS IN AS GREAT DETAIL AND NUANCE ABOUT BENEFIT AND THE TRANSLATIONAL LIKELIHOOD OF THEIR PARTICIPATION TOWARDS A CLINICAL BENEFIT THEY MAY BE PART OF THE MOTIVATION FOR THEM JOINING. I THINK THAT IS ANOTHER AREA FOR REALLY IMPORTANT WORK. WHAT ARE THE WAYS IN WHICH WE SHOULD APPROACH PATIENTS TALKING ABOUT THAT. THAT MIGHT BE A GREAT OPPORTUNITY TO INCLUDE IN VIDEOS AS WELL, EXAMPLES OF TRANSLATIONAL PATH WHICH MAY BE LONGER AND MORE NEBULOUS THAN PATIENTS THINK WHEN THEY PARTICIPATE IN STUDIES SO WHAT IS OUR RESPONSIBILITY TO DO THAT. AGAIN I DON'T KNOW IF THAT ANSWERED YOUR QUESTION, JUST SOME REFLECTIONS BACK, THAT IS A REALLY FANTASTIC POINT. >> THANK YOU, ASHLEY. >> THANK YOU SO MUCH, ASHLEY. WE LOOK FORWARD TO HAVING MORE CONVERSATION WITH YOU IN A MINUTE AFTER SARA IS DONE, OUR SECOND SPEAKER IS DR. SARA GOERING, PROFESSOR PHILOSOPHY CORE PROGRAM ON ETHICS AND DISABILITIES PROGRAM AT THE UNIVERSITY OF WASHINGTON, WITH SUPPORT FROM BRAIN FOR NEUROETHICS RO1 FOR RESEARCH EXPLORES AGENCY IN AGENCY WITH NEURAL PROSTHETICS AND HOW IT CAN IMPROVE INFORM CONSENT PRACTICES. SHE RECEIVED HER Ph.D. IF IN PHILOSOPHY UNIVERSITY OF COLORADO BOULDER AND TODAY SHE WILL TALK TO US ABOUT ETHICAL CONSIDERATIONS FOR BRAIN RESEARCH PARTICIPATION IN LONG TERM HIGHLY INTERACTIVE STUDIES. THANK YOU, SARA. >> SLIDE ARE UP. >> I AM JUST LOOKING FORWARD TO TALKING TO YOU ABOUT SOME WORK THAT WE HAVE DONE IN OUR GROUP AROUND -- THESE ARE JUST EXAMPLES NOT NECESSARILY OUR PEOPLE BUT FOR PARTICIPANTS WHO ARE IN LONG TERM HIGHLY INTERACTIVE STUDIES OF BCI WHERE THEY ARE PRIMARILY AS YOU CAN SEE IN PICTURES USING NEURAL ACTIVITY TO MOVE ROBOTIC ARM OR CURSOR ON THE SCREEN OR THAT KIND OF THING. THIS COMES OUT OF OUR GRANT I'M CO-PI ON AARON KLINE ON BCI AND HUMAN AGENCY, AS WE SAID THEN, BCI OPERATE DIRECTLY ON THE BRAIN AND IN OR BETWEEN THOUGHTS AND ACTIONS AND EMOTIONAL FEEDBACK AND BECAUSE OF THAT CAN EFFECT HUMAN AGENCY OR SENSE OF OURSELVES AS AGENTS. IF WE THINK OF AGENCY AS A SENSE OF OWNERSHIP OVER THE EXPERIENCES AND ACTIONS THAT SHAPE OUR IDENTITIES THEN WE WANT TO BE ABLE TO SAY IN USING THE ROBOTIC ARM OR USING THE BCI TO MOVE CURSOR THAT WE CAN CONFIDENTLY SAY I DID THAT RATHER THAN IT IS SOMETHING THAT JUST HAPPENED O SO IN OUR GRANT WE DEVELOPED A CONCEPTUAL MAP OF AGENCY MORE THOSE ETHICAL CONCEPTUAL WORK AND WE PUBLISHED A PIECE IN A JOB NEUROSCIENCE WITH THIS MAP MAYBE NOT REALLY MAP, RIGHT, OUTLINING DIFFERENT DIMENSIONS OF AGENCY THAT ARE HIGHLY RELEVANT IN THIS ENVIRONMENT. SECONDLY WE WANTED TO UNDERSTAND THE EXPERIENCES AN PERSPECTIVES OF BCI RESEARCH PARTICIPANTS ON THEMES RELATED TO ETHICS AND AGENCY AND IDEA WAS THAT WE WOULD DO IN DEPTH PHENOMENOLOGICAL INTERVIEWS MULTIPLE TIMES THROUGH THE COURSE OF THE STUDY. AND FINALLY TO CREATE A TOOL FOR IMPROVING INFORMED CONSENT FOR PEOPLE COMING INTO THESE STUDIES. SO THEY MIGHT KNOW -- MIGHT BE ABLE TO THINK ABOUT WHAT THEY WOULD WANT TO KNOW IN MAKING THEIR PARTICIPATION DECISIONS. SO I'M REALLY GOING TO TALK ABOUT AIM 2 IN THIS SHORT TALK. I AM VERY GRATEFUL TO GUPTA A POST DOC IN THE GRANT TRAINING IN PHENOMENOLOGICAL TRAINING METHODS. YOU ARE NOT JUST ASKING QUESTIONS TO GET OPINIONS ABOUT SOMETHING BUT YOU ARE ASKING THE PARTICIPANT TO FULLY ARTICULATE OUR EXPERIENCE. IT IS SUCH UNUSUAL EXPERIENCE TO MOVE A THING THROUGH YOUR THINKING OR CONCENTRATION ON CERTAIN IMAGERY, THAT NOT EVERYBODY DOES IT RIGHT OFF, SO IT TAKES TIME, KIND OF CYCLING BACK, BUT MORE WHAT THAT FELT LIKE AND I WANT TO SHARE SOME OF THOSE RESPONSES WITH YOU HERE TODAY. SO WE ASKED THINGS LIKE WHAT MADE O MOTIVATED YOU TO ENROLL IN THE STUDY, WHAT WAS IT LIKE TO LEARN TO USE THE DEVICE AND NOW THAT YOU HAVE LEARNED, HOW DOES IT FEEL TO USE THE DEVICE. THE INTERVIEWS TYPICALLY LASTED ONE AND A HALF HOURS OR SO AND IT IS A SMALL NUMBER, IN PART BECAUSE THERE AREN'T VERY MANY PEOPLE WHO HAVE THIS EXPERIENCE, AND ALSO GLOBAL PANDEMIC KIND OF SLOWED DOWN RECRUITMENT AND ACTUAL SESSIONS. SOME KEY FEATURES I WANT TO TALK ABOUT AN OVERVIEW SLIDE OUR ORIGINAL FOCUS WAS ABOUT AGENCY, WHAT IS IT LIKE TO DO THINGS WITH YOUR THOUGHTS IN THE LANGUAGE OF KERGAL E ET AL IN THIS 2020 PAPER, IT IS AGENCY ENHANCING YOU CAN DO THINGS BUT YOU WOULDN'T HAVE BEEN ABLE TO DO WITHOUT THIS DEVICE. BUT ALSO POTENTIALLY AGENCY DISRUPTING AND WE WANT TO PAY ATTENTION TO BOTH OF THOSE. WHAT CAN WE LEARN ABOUT IMPACT ON PEOPLE WITH EXPERIENCE USING THE DEVICE SO THAT WAS OUR FOCUS. IN THE CONTEXT OF THESE INTERVIEWS, WHAT IS OUR QUITE LENGTHY, WE FOUND INTERESTING COMMENTARY ON OTHER ASPECTS OF STUDIES. SO I'M GOING TO GO THROUGH SOME OF THESE TODAY. THE FACT THEY ARE TIME CONSUMING AND INTENSIVE, MENTALLY AND PHYSICALLY EXHAUSTIVE, REIS SKI IN A VARIETY OF WAYS, THERE ARE ISSUES OF BARE RECIPROCITY FOR WHAT IS OFFERED FROM THE PARTICIPANTS WHAT THEY FEEL THEY GET BACK. AND THAT THERE'S OPPORTUNITY FOR MEANINGFUL PARTICIPATION IN RELATIONSHIP BUILDING. ASHLEY TOUCHED ON THAT A BIT AT THE END OF HER TALK AND ALSO THAT IT IS NOVEL THAT IT CAN BE DIFFICULT FOR PERSPECTIVE PARTICIPANTS TO UNDERSTAND WHAT TO EXPECT. SO I WILL GIVE YOU A GLIMPSE OF THESE THINGS. LEANING ON QUOTE FROM OUR INTERVIEWS. FIRST WITHOUT A DOUBT, THIS IS GROUND BREAKING AND AGENCY ENHANCING AND REALLY EXCITING. SO ONE PERSON SAYS THEY WILL ASK ME TO DO DIFFERENT TASKS PRETEND YOU ARE USING YOUR THUMB TO MOVE THIS CIRCLE ON THE SCREEN, PRETEND. THAT WAS TWILIGHT ZONISH TO ME, I THOUGHT REALLY? HOW DO I DO THAT? THE MOST INCREDIBLE THING TO ME WAS THAT I COULD THINK ABOUT DOING SOMETHING AND THE COMPUTER KNEW MY BRAIN WAS TRYING TO DO IT AND IT DID IT AMAZING. ANOTHER PERSON SAYS I WOULDN'T GET SENSATION OR MOVE MY FINGERS BUT JUST WATCHING THE ROBOTIC ARM MOVE EXACTLY HOW I WANTED IT TO MOVE, IT WAS SO SHOCKING I THINK IN THE BEGINNING THAT I WAS ABLE TO MOVE THE THUMB. I THINK THAT IS WHAT BUILT MY BOND WITH THE ROBOTIC ARM, SEEMINGLY TO ACT EXACTLY HOW I WANTED TO CONTROL IT, I BUILD MY BOND WITH ROBOTIC ARM AND MAKE IT TAKE STEPS TO PEEL LIKE MY ARM. FASCINATING ABOUT SENSE OF EMBODIMENT. BUT THERE ARE ALSO CERTAIN WAYS IN WHICH IT WAS INVASIVE ON AGENCY. SO I THINK ONE THING I WANT TO PAUSE A SECOND WE TALK ABOUT INVASIVENESS IN THIS SPACE AS IF IT IS JUST ABOUT ANYTHINGNA GOES UNDER THE SKIN BUT INVASIVENESS MATTERS FOR A SENSE OF WHAT I AM AS AN AGENT. A THING COULD BE OUTSIDE OF MY BRAIN NON-IMPLANTABLE ONE THAT COULD HAVE INVASIVE ISSUES. SO SOME OF THE THINGS PEOPLE SAID HERE, THERE IS A FORCE THAT I FEEL THAT I'M WRESTLING AGAINST. SOMETIMES IT IS NOT AS STRONG, OTHER TIMES OVERWHELMING WHERE I CAN'T PUSH AGAINST IT. IN FACT IT PUSHES ME. I DON'T UNDERSTAND WHY IT HAPPENED ON SO OCCASIONS AND NOT OTHERS BUT IT IS SOMETHING THEY TRYING TO FIGURE OUT. IT SAYS LATER I FEEL FRUSTRATED BECAUSE I'M TRYING TO PUSH THROUGH AND THE COMPUTER IS HOLDING ME BACK. I'M TRYING TO EXERCISE MY AGENCY IN THIS WAY AND THERE'S PUSH BACK FROM THE COMPUTER. ANOTHER PERSON SAYS WAIT A MINUTE WE WERE JUST ROLLING ALONG REALLY GOOD AND NOW THINGS AREN'T WORKING. WHAT IS WRONG? IT WAS FRUSTRATING. AND I HADN'T OPENED UP FOR THOUGHT THAT OH, MAYBE THEY ARE DOING SOMETHING DIFFERENT, MAYBE ARE YOU JOKING WITH ME? WHY CAN'T THIS BOARD SUPPOSE TO GO DO WHAT IT IS SUPPOSED TO DO, I THINK IS THE CLAIM THERE, AND THEN IT WORKED SO WHY DID THAT HAPPEN? I DON'T UNDERSTAND IT. I DON'T UNDERSTAND IF IT IS SOMETHING I'M DOING SOMETHING RESEARCHERS ARE DOING OR WHAT IS HAPPENING. IF THINGS GOT AWAY FROM ME, SHE SAYS I SAY THIS ISN'T WORKING RIGHT, IF I COULDN'T CONTROL IT, ESPECIALLY WE HAD ALREADY MANAGED TO CONTROL A TASK TASK. THEN ALL OF A SUDDEN I DIDN'T HAVE CONTROL OVER WHATEVER IT WAS IT WAS DOING. I SAY THIS IS NOT RIGHT. I KNOW HOW TO DO THIS, SOMETHING IS DIFFERENT. I FEEL I CAN DO THIS THEN I CAN'T AND I CAN'T EXPLAIN WHAT'S HAPPENING THERE. FINALLY A THIRD PERSON SAYS I FELT LIKE THAT MAYBE WHEN THE GAIN ON THE COMPUTER SIDE WAS TOO HIGH, IT WAS TOO EASY. I HAD TO PUT NO EFFORT IN COMPLETING THE TASK. BUT I ALWAYS SHARED THAT BECAUSE I FELT LIKE I WAS THERE TO WORK AND WANTED TO MAKE SURE IT WAS ME DOING THE TASK AND NOT THE HELP OF THE COMPUTER ACCOMPLISHING IT. THAT KIND OF SHOWS YOU THIS NEED TO FEEL AGE ENIAL. I'M DOING IT AND FEELING UNCERTAINTY WHEN IT FEELS TOO EASY IT FELT LIKE THE COMPUTER WAS DOING IT. THESE ARE TIME CONSUMING INTENSIVE STUDIES. THEY ARE TYPICALLY SOMEWHERE BETWEEN ONE AND FIVE YEARS. HIGHLY INTERACTIVE. SO PEOPLE GO INTO THE LAB, AT LEAST PRE-COVID TWO OR THREE TIMES A WEEK FOR TWO HOURS AT LEAST, OFTEN REQUIRES TRAVEL TO LAB, PARKING AND ALL OF THESE THINGS AS WE KNOW CAN BE MADE MORE DIFFICULT IN CASES WHERE THE RESEARCH PARTICIPANT HAS A NEED FOR ACCESSIBLE BAND DISABLED PARKING, LOGISTICS OF HAVING A CAREGIVER, HEALTH THEM GET THERE ET CETERA. SO ONE PERSON SAYS HERE JUST TO BE ILLUSTRATIVE. IT FELT LIKE I WASN'T IN CONTROL SOME OF THE TIME. IT ALSO FELT LIKE MY ENERGY MY CAREGIVERS PUT TO GET ME THERE ON TIME WAS POINTLESS. SO THAT'S WHY I WOULD BE MAKING A POINT TO SPEAK OUT BECAUSE IT IS THE WHOLE PROCESS THAT HAS TO BECOME THE CAREGIVER HAS TO BE THERE. I HAD TO BE, THE WHOLE EFFORT WOULD BE USELESS. IT WAS LIKE WHY WAS I THERE, WHY DID IT WAKE UP IN THE MORNING? THIS IS JUST -- IT TAKES A LOT OF EFFORT TO GET THERE, I WANT TO MAKE SURE MY TIME IS USED WELL. WHEN THEY ARE THERE, IN THESE HIGH LITER ACTIVE SESSIONS. I -- INTERACTIVE SESSIONS. IT IS MENTALLY, JUST DOING VISUAL IMAGERY, MENTALLY AND PHYSICALLY EXHAUSTING. SO A FEW EXAMPLES OF THE SOME OF THE TIME I COULDN'T ACCOMPLISH WHAT THEY WANTED ME TO ACCOMPLISH ACCOMPLISH. I COME HOME AND CONTINUE WORKING IN MY BRAIN. COME HOME AND PRACTICE ALL DAY LONG. DOESN'T HAVE ROBOTIC ARM, DOESN'T HAVE THE SET UP BUT THEY ARE PRACTICING THE CONCENTRATION. I HAD TO LEARN HOW TO COME HOME AND RELAX. BECAUSE I WANT TO SAY MAYBE FOR A YEAR, I COULDN'T JUST COME HOME AND RELAX. I WAS WORKING WITH THE ROBOTIC ARM BUT NOT PHYSICALLY CONNECTED TO IT. I WAS STILL MENTALLY TRYING TO ACCOMPLISH IT. IT WAS TOO EXHAUSTING. IT WAS TOO MUCH IT WAS OVERWHELMING. ANOTHER PERSON, VERY HARD, IN FACT IT IS PHYSICALLY DRAINING AS WELL AS MENTALLY. LIKE I SAID BEFORE WE MET UP WITH YOU GUYS WHEN I'M DONE WITH A SESSION I'M BEAT. ESPECIALLY WHEN WE ARE DOING NEW THINGS THAT I HADN'T DONE BEFORE. OVER TIME IT IS ALMOST LIKE A MUSCLE IN MY MIND, AND IN MY ABILITY TO PUSH THE CURSOR. IT STRENGTHENS OVER TIME AND FREQUENT USE. IT TAKES TIME FOR ME THE BUILD UP STRENGTH MENTALLY AND PHYSICALLY. BUILT UP STRENGTH TO SEND THAT SIGNAL DOWN TO MY FOOT AND MIMIC THE ACTION OF MOVEMENT. THE FOOT ISN'T MOVING AT ALL, THE ARMS AREN'T MOVING AT ALL BUT IT IS PHYSICALLY EXHAUSTING TO DO THE MENTAL WORK. ONE MORE, IN THE BEGINNING I TOOK EFFORT INTO IT AND TO THE POINT WHERE MY MIND I WAS TIRED. MY ARMS WERE TIRED. AS IF IT WERE MY HAND, AS IF I HAD ACTUALLY BEEN DOING IT. THAT STILL HAPPENS. MY ARMS GET TIRED. I FIND THAT FASCINATING. WHAT IS HAPPENING WHEN A PERSON ISN'T MOVING THEIR ARMS BUT THEIR ARMS FEEL TIRED THE PHENOMENAL EXPERIENCES THAT TIREDNESS. AT THE END OF THE SESSION I AM TIRED I WOULD FALL ASLEEP A COUPLE OF HOURS. THAT DEPLETION OF BRAIN POWER. AFTER A SESSION. IT IS RISKY. WE KNOW THIS. THAT IS WHEN WE ARE TALKING UNDERSTANDING OF RISK AND THE CONSENT PROCESS, THIS IS A KEY THING. ONE PARTICIPANT SAYS I CONSULTED MY MOM, MY SON MY DAUGHTER I HAD NO FAMILY SUPPORT. NOBODY WANTED ME TO DO IT. NOBODY WANTED ME TO DO IT. THEY THOUGHT I MIGHT DIE OR THAT I WOULD HAVE SOME BRAIN DAMAGE. BASICALLY THEY TOLD ME THE ONLY PART THAT FUNCTIONS CORRECTLY ABOUT YOU IS YOUR BRAIN AND YOU ARE GOING TO CUT IT OPEN? THEY WERE COMPLETELY AGAINST IT. THIS IS THE THINGS I HEARD FROM OTHERS A HE WILL WITH THINKING ABOUT THE PROSPECT OF ENTERING SUCH A STUDY. THAT'S THE THING THAT IS WORKING WELL, WHY WOULD YOU TAKE ANY RISK WITH IT. ANOTHER PERSON SAYS I'M STILL CAUTIOUS I DON'T WANT ANYTHING TO HIT PEDESTALS. WE HAD A SITUATION WHERE THERE'S TWO PEDESTALS OUT OF ONE THE SCREWS CAME LOOSE AND I WAS GETTING HEADACHES. THEY TOOK ME TO SURGERY AND MOVED THE PEDESTAL OVER AND PUT NEW SCREWS IN BUT THAT WAS AN OUTPATIENT THING. I JUST HAVE TO BE CAREFUL, WE NEED TO HAVE OUR HAIR DONE AND MY HAIR DRESSER HAS TO BE CAREFUL THAT SHOULDN'T HIT THEM WHEN WASHING MY HAIR IS IT IS NOT ONLY THIS INITIAL SURGICAL RISK BUT RISK GOING ALONG OF DISLODGING THEM OR NEEDING ANOTHER SURGERY TO CONTINUE PARTICIPATION. I WANT TO I THOUGHT ABOUT THIS ONE, THERE ARE GOING TO BE ISSUES ABOUT THEIR RECIPROCITY AND THINKING ABOUT COMPENSATION OR RECOGNITION FOR THE EFFORT PUT FORTH BY THE PARTICIPANT. THIS PERSON SAYS BECAUSE THE PROJECT IS RECEIVING MULTI-MILLION DOLLAR, WE ARE TALKING OVER $150 MILLION DONATIONS, AND I'M OVER HERE GETTING $50 FOR MY TIME, WHEN I JUST TO COME TO YOU IT WOULD TAKE SEVERAL HOURS, ANY LEGAL IMMIGRANT DAY LABOR IS GETTING PAID MORE THAN WHAT I'M DOING AND DIDN'T MAKE SENSE TO COME OUT MAKING CAREERS OVER HERE. I'M HELPING MAKE CAREERS. THESE PEOPLE ARE GOING TO BE RECOGNIZED FOR THE REST OF THEIR LIVE WHAT IS THEY ESTABLISH, WHEY I'M HELPING THEM ACCOMPLISH AND THEY ARE NOT RECOGNIZING ME AT ALL. THINKING ABOUT WHAT IS FAIR IN TERMS OF WHAT THE DIFFERENT PARTIES IN THIS ENDEAVOR RECEIVE IS SOMETHING I THINK WE HAVE TO TALK MORE ABOUT. THERE ARE ALSO CONCERNS ABOUT CONTINUED ACCESS, I JUST LOOK AT IT AS BEING PART OF ME THAT WAS THERE BECAUSE WHEN A DEVICE IS EXTERNAL IT IS A TOOL. BUT IF IT IS PART YOUR KNOWN ANATOMY, IT IS THERE, USE IT. I ALWAYS LOOK AT IT AS BEING PART OF ME, NOT SOMETHING THAT I WOULD SHUT OFF OR TURN BACK ON. IT BECOMES PART OF WHO I AM. SOMEBODY ELSE SAYS YOU WANT TO GO MANY THERE BE CONNECTED MOVE THE ROBOTIC ARM LIKE A HUMAN BODY ARM BUT YOU QUICKLY LEARN YOU ARE NOT ABLE TO DO THAT, THERE IS A PROCESS, IT WAS DISAPPOINTING. IT WASN'T DISAPPOINTING TO THE POINT I WASN'T GOING TO BE PART OF PROJECT AND CONTINUE MOVING FORWARD. I WOULD HAVE LIKE TO KNOW THAT DARPA WAS THE OWNER OF THE ROBOTIC ARM I BEGIN WITH AND COULD HAVE CAME IN AND TOOK IT WHEN I FELT LIKE IT, THAT IS WHAT HAPPENED. SO ONE OF THE THOUGHTS HERE IS THAT WHEN YOU DO GET SOME ENHANCEMENT IN AGENCY OR FEELING OF THIS THING BEING EMBODIED, THEN IT IS REMOVED, AT THE END OF THE STUDY OR WHEN SOMEBODY EXITS THE STUDY, THAT -- IT IS NOT JUST BACK TO BASELINE, IT FEELS LIKE A VIOLATION OF SOMETHING THAT CHANGE THE WAY THE PERSON IS IN THE WORLD. WE ALSO HEARD THIS I WILL JUST SAY I'M MAINLY TALKING BCI FOR MOTOR CONTROL STUDIES BUT WE ALSO HEARD FROM PEOPLE WHO ARE USING RESEARCH OR CLINICAL RESEARCH DBS FOR PSYCHIATRIC ISSUES. ONE PERSON SAID MY ONLY CONCERN IS IF IT DOESN'T GET APPROVED HOW MUCH SUPPORT ARE WE GOING TO GET ONCE THE STUDY ENDS, IT IS IN THERE, SEEMS TO BE WORKING BUT I DON'T KNOW WHAT HAPPENS WHEN THE STUDY ENDS. I WILL SAY SO THESE ARE SOME WORRIES THAT CAME OUT FROM THE INTERVIEWS. I WILL SAY THOUGH THAT PEOPLE REALLY FOUND IT MEANINGFUL AND APPRECIATED THE RELATIONSHIP BUILDING THAT WENT ON GIVEN THE LENGTHY NUMBER OF YEARS THEY ARE INVOLVED, NUMBER OF TIMES PER WEEK. SO ONE PERSON SAYS IT GAVE ME A PURPOSE, WHEN I WENT THROUGH THE ACCIDENT. AND REALIZED I WAS PARALYZED NOT JUST PARALYZED FROM LEGS BUT LITERALLY SHOULDERS DOWN I THOUGHT IT IS OVER FOR ME, HOW AM I GOING TO DO THOSE THINGS. THIS IS A PERSON WHO WAS A NURSE. HOW AM I GOING TO TAKE CARE OF PATIENT? AS I STARTED TO ENGAGE MORE INTO THIS PROJECT AND SEEING THE POTENTIAL BENEFIT, I FEEL LIKE I NEVER LEFT THE PROFESSION. MY CONTRIBUTION IS HERE. I FEEL LIKE I'M DOING SOMETHING VERY MEANINGFUL, IT MATTERS. BEYOND MYSELF. ANOTHER PERSON SAYS BEING INVOLVED WITH THE RESEARCH HAS GIVEN ME IMPROVED SENSE OF SELF BECAUSE I'M CONTRIBUTING NEEDED AND HAVE VALUE FOR THINGS I'M ABLE TO DO FOR RESEARCH. SHE JOKED ABOUT BEING A LAB RAT THEN NOTED PI OF THE STUDY SAID I DON'T LOOK AT YOU AS A LAB RAT, YOU ARE A CO-WORKER, A COLLEAGUE. IT WAS A NICE SENTIMENT SO THE SENSE OF DOING SOMETHING MEANINGFUL AND BUILDING A RELATIONSHIP AS A TEAM MEMBER. TO OUR THIRD AIM WE ASK PEOPLE IF THEY UNDERSTOOD WHAT THEY WERE GETTING INTO. THESE ARE PEOPLE ALL THE WAY -- WELL INTO THE STUDY OR EVEN OUT OF IT. ONE SAYS I THINK I UNDERSTOOD AS MUCH AS I WAS GOING TO UNDERSTAND WITHOUT BEING PART OF IT. I TRIED TO ASK ALL THE RIGHT QUESTIONS, I COULD, BUT I DON'T THINK ANYTHING PREPARES YOU. I DON'T THINK YOU CAN ASK THE RIGHT QUESTIONS. WITHOUT BEING PART OF IT. I THINK THAT'S REALLY FASCINATING. YOU DON'T KNOW WHAT TO ASK UNTIL YOU ARE ALREADY IN THERE. ANOTHER PERSON SAYS I UNDERSTOOD IT ON PAPER AND THEN TO HAVE IT ACTUALLY HAPPEN TO BE DOING THE TASKS ARE COMPLETELY DIFFERENT THAN WHAT I THOUGHT IT WAS GOING TO BE. I HAD THAT THOUGHT THAT I WOULD BE ABLE TO START USING A TABLET APPLICATION I WAS USED TO USING AND MAN I HAD TO DROP DOWN MY EXPECTATIONS LOW THAT THIS WAS NOT ABOUT THAT AT ALL. SHE SAYS I PROBABLY WOULD HAVE WANTED TO TALK TO SOMEBODY ALREADY INVOLVED TO SEE WHAT THEIR EXPERIENCE WAS LIKE, AS IT TURNED OUT THERE'S NOT MANY PEOPLE DOING THIS. SO MY FINAL SLIDE. SO WHAT. I INVOLVE THESE QUOTE I GAVE YOU. SOME TENTATIVE TAKE HOME LESSONS. IT IS REALLY IMPORTANT TO FIGURE OUT WAYS TO RECOGNIZE PARTICIPANTS FOR THEIR CONTRIBUTIONS FOR THE RISKS THEY TAKE, THE TIME THEY INVEST, THE WORK THEY DO, AND MENTALLY AND PHYSICALLY EXHAUSTING, WE NEED TO MAKE SURE THAT THEY GET RECOGNITION FOR THAT. IT IS GOING TO BE IMPORTANT TO DEVELOP CONSENT DISCUSSION TOOL TO HELP PERSPECTIVE PARTICIPANTS UNDERSTAND WHAT THEY CAN EXPECT. THIS IS SOMETHING OUR GROUP IS WORKING ON THIS YEAR IN THE FINAL YEAR OF OUR GRANT. ATTENTION TO SUPPORT STRUCTURE WITHIN THE STUDY, THINKING ABOUT WAYS THAT PEOPLE CAN BE PARTICIPANTS CAN BE AS WELL SUPPORTED AS POSSIBLE IN TERMS OF GETTING THEIR HAVING COVERAGE FOR CAREGIVER ROLES, IF THERE ARE CAREGIVERS WHO CONTRIBUTE TO THE RESEARCH IN SOME WAY UNDERSTANDING WHAT THEY CAN DO AND INCLUDING THEM. THINKING ABOUT FINANCIAL COMPENSATION. I ACKNOWLEDGE THERE ARE DANGERS AND IN THE LITERATURE THERE IS WORRY ABOUT UNDUE INDUCEMENT, GIVEN THAT QUOTE I GAVE ON THE FAIR RECIPROCITY SLIDE THERE IS A SENSE I'M DOING A LOT HERE. AND A LOT OF MONEY IS BEING MADE AND I DON'T FEEL LIKE I'M BEING TREATED FAIRLY IN TERMS OF WHAT MY COMPENSATION IS. OUR TWO WONDERFUL POST DOCS HAVE PAPER IN PROCESS ON THAT GUPTA AND ANDREA, OTHER WAYS TO RECOGNIZE AND VALUE AND CONTRIBUTION BEYOND PAYMENT. THINGS LIKE THINKING OF PEOPLE AS TEAM MEMBERS, TRYING TO EXPLORE WHAT THAT WOULD MEAN TO MAKE SURE PEOPLE FEEL RECOGNIZED AND RESPECTED IN THAT ROLE. AND THEN ALSO BETTER POST TRIAL ACCESS OR HELP TRANSITION OUT OF THE STUDY, OUR GROUP RAN A POST TRIAL OBLIGATION WORKSHOP LAST SPRING AND WE ARE WORKING ON A PAPER THAT SHOULD BE SHARED AROUND HOW TO MAKE SURE PEOPLE ARE REALLY TREATED WELL AND SUPPORTED THROUGH THE EXIT OF THE STUDY. THIS IS MY AWESOME GROUP HERE FROM UDUB. HAPPY TO TAKE SOME QUESTIONS. I WILL SEE IF I CAN STOP MY SHARE. >> THANK YOU, SARA. THAT WAS WONDERFUL. COUPLE OF BRIEF QUESTIONS FOR SARA BEFORE WE START THE PANEL DISCUSSION? ANYBODY? ASHLEY. >> THANK YOU FOR THAT. >> REALLY WONDERFUL WONDERFUL. SO SOME OF THE THINGS YOU SAID TO ME, SO WE ALSO DO SOME WORK WITH PATIENTS WHO ARE LIKE IN EARLY FEASIBILITY STUDIES FOR VISUAL BCI SYSTEMS, HAVING VISUAL CORTICAL PROSTHESIS DEVICE AND REALLY COMMON THEMES WHAT YOU SHARE AND SOME OF THE THINGS WE SEE LIKE EXPECTATIONS, MAYBE THAT THIS IS KIND OF LIKE A TRANSFORMATIVE EXPERIENCE IN SOME WAY WHERE YOU CAN KIND OF UNDERSTAND WHAT IT IS LIKE UNTIL YOU DO IT. I'M WONDERING WHETHER YOUR THOUGHTS ARE, ON THE BENEFITS OF CROSS TALK, ACROSS THE VARIOUS BCI STUDIES. WHAT YOU THINK MIGHT BE THE BENEFIT OF BEING ABLE TO SHARE THOSE COMPARE THOSE EXPERIENCES. WE HAVE BEEN THINKING THERE'S SIGNIFICANTLY DIFFERENT BUT I'M WONDERING YOUR THOUGHTS ON THAT GIVEN MOVEMENT AND VISION AND SPEECH AND ALL THE THINGS HAPPENING IN THE SPACE. >> WE HAVE TO PAY ATTENTION TO THOSE DIFFERENCES. BUT I GUESS THIS IS WHERE I THINK THE EMPIRICAL WORK MATTERS WE NEED TO TALK TO PEOPLE IN THE STUDIES TO KNOW BETTER WHETHER OR NOT THE ISSUES AND THE PHENOMENAL EXPERIENCES REALLY SIMILAR AT LEAST IN BROAD STROKES OR VERY DIFFERENT. I THINK DIFFERENT STUDIES SOME IN YOUR HOME, SOME INTO THE LAB, IT IS NOT ONLY THE MODALITY THAT WE ARE TALKING ABOUT BUT HOW THEY ARE ORGANIZED AND STRUCTURED. THIS IS WHAT I THINK, SO INTERESTING THAT THE PEOPLE WE TALK TO SAID YEAH, I JUST -- I WOULDN'T HAVE EVEN KNOWN WHAT QUESTIONS TO ASK. I FEEL LIKE I UNDERSTAND AS BEST I COULD BEFORE I HAVE THE EXPERIENCE. BUT NOW THAT WE HAVE THE EXPERIENCE, LET'S USE THE EXPERIENCE TO FEEDBACK TO PERSPECTIVE PARTICIPANTS, AS YOU SAID IN MY QUESTION IN YOUR SESSION ASHLEY, NOT TO JUST PICK ONE OR TOKEN HERE TOKEN THERE BUT TO SORT OF SAY THIS IS A RANGE OF EXPERIENCES THAT PEOPLE HAVE HAD DOING THIS AND YOU JUST WANT TO KNOW SOMETHING ABOUT THAT. BEFORE YOUR SIGNING UP FOR IT TO MAKE SURE YOU ARE WELL INFORMED. SOME OF THE THINGS I DIDN'T TALK ABOUT BUT SOME PARTICIPANTS SAID IS THERE ARE ALSO LOST OPPORTUNITIES, IF YOU ARE IN THIS STUDY YOU ARE NOT GOING TO BE IN THE STEM CELL STUDY. SO YOU WANT TO BE CLEAR ABOUT THE POSSIBILITIES FACING WHAT YOU ARE DOING, I THINK WE WILL STILL DO IT, I WILL SAY OUR PARTICIPANTS I THINK ALL OF THEM SAID EVEN THE PEOPLE VERY CRITICAL, SAID THEY REALLY LIKED BEING IN THIS STUDY. BUT WE ARE NOT JUST DONE THERE, THERE ARE SIGNIFICANT CONCERNS WE WANT TO PAY ATTENTION TO THOSE AND THINK ABOUT WAYS ESPECIALLY AS THIS WORK EXPANDS THAT WE CAN DO IT WITH BETTER SUPPORT FOR THEM AND THEIR NEEDS. >> STEVE. >> SO LET ME JUST FIRST SAY AMAZING STUDY STUDY. I THANK YOU AND AND THANK ON OUR BEHALF ALL OF YOUR TRAINEES AND SO FORTH WHO PARTICIPATED. THIS IS INCREDIBLE. BUT NOW TO ASK SOMETHING PRAGMATIC AND NOTHING YOU WOULD FIND IN PHILOSOPHY OR DARKER PAGES, WHICH IS HOW DO YOU REDUCE THIS TO PRACTICE? YOU HAVE DONE THIS EMPIRICAL STUDY, IT IS ONE STUDY, IT IS VERY CONVINCING. YOU JUST SAID WE SHOULD LEARN FROM PEOPLE'S EXPERIENCE, WOULDN'T IT BE NICE IF THEY KNEW THESE THINGS AHEAD OF TIME. THE PROBLEM IS THIS IS COMING FROM DIFFERENT FUNDING AGENCIES AND DINT UNIVERSITIES. ASIDE FROM ALL THE NOT A HUGE NUMBER BUT SCHOLAR PAPER IF YOU HEARD ONE ABOUT ANOTHER ONE TODAY ON ETHICAL COMMITMENTS, THESE VERY IMPORTANT PAPERS. IS THERE A WAY OF LITERALLY TURNING THIS INTO A BEST PRACTICE THAT WOULD BE EXPECTED ACROSS FUNDING APE GYPSIES, WHEN THEIR PROJECTS SUCH AS THIS? IT SHOULD BE A LIVING DOCUMENT. BECAUSE I AGREE ENTIRELY, THIS IS BASED ON PEOPLE'S EXPERIENCE. THAT WILL CHANGE OVER TIME OR THERE WILL BE NEW POINTS BUT CURIOUS, MAYBE IT IS UNFAIR THE ASK YOU, BUT HOW WOULD WE -- HOW WOULD WE MAKE THE VOLUNTEERS THE BENEFICIARIES, THE TRUE BENEFICIARIES OF YOUR EMPIRICAL WORK? >> IT IS A GREAT QUESTION. PHILOSOPHERS DOING WORK FOR THE NIH ARE GOING TO HAVE TO HAVE THAT PRACTICAL TURN. THIS IS OUR THIRD AIM IN OUR GRANT AND ONE OF THE THINGS THAT WE HAVE LOOKED AT WITHIN THERAPEUTICS SO CANCER CARE, THERE IS A THING CALLED A QUESTION PROMPT LIST. WHICH IS A SET OF QUESTIONS THAT MIGHT GUIDE YOUR DISCUSSION AROUND INFORMED CONSENT AGAIN IN THE THERAPEUTIC CONTEXT BUT WE THINK THERE ARE WAYS TO PIVOT THAT TO THINKING ABOUT INFORM CONSENT PROCESS AND THOSE QUESTIONS I THINK BY AND LARGE WOULD COME FROM PREVIOUS PARTICIPANTS. NOW IT IS A MOVING THING. SO WE ARE GOING TO -- AREAS, THE DEVICE IS GOING TO BE DIFFERENT BUT THAT COULD BE UPDATE -- IF THERE IS A -- >> A LIVING DOCUMENT, NOT A MOVING THING BUT A LIVE DOCUMENT. >> SOMETHING WE CAN KEEP UPDATING AND TO ASHLEY'S POINT THINKING ABOUT VIDEO THAT IS REMOVED FROM THE INDIVIDUAL CLINICIAN RESEARCHER, THAT CONTAINS INFORMATION THAT MIGHT HAVE TO BE SLIGHTLY ADJUSTED IF IT IS ABOUT A VISUAL PROSTHETIC VERSUS A MOTOR -- BECAUSE THE EXPERIENCE IS -- >> THAT IS WHY TREATING THIS AS BEST PRACTICE, NOT AS A SET OF REGULATORY GUIDELINES IS IMPORTANT. THE OTHER THING, LET ME JUST SAY IS, I'M WARY OF INCLUDING THIS IN INFORMED CONSENT BECAUSE I GOT THE SENSE FROM YOUR DISCUSSION OF YOUR EMPIRICAL WORK THAT PEOPLE MAY HAVE FELT THERE WAS SO MUCH INFORMATION, OR MORE THAN THAT, THEY COULDN'T IMAGINE WHAT THEY WERE GETTING INTO. AND IT SOUNDS LIKE THERE SHOULD BE SOME WRITTEN EVIDENCE OF THIS FOR SUBJECTS AND THEIR FAMILIES. >> WRITTEN EVIDENCE WOULD BE GOOD. . FOR THE COMING INTO IT. I THINK WE -- INTO THE STUDY, I THINK WE ALSO THINK IT IS -- CONSENT IS AN ONGOING PROCESS, PARTLY ONCE THE PERSON IS IN THE STUDY MAYBE THE ONUS SHIFTS TO THE RESEARCHER TO BE ASKING CERTAIN KINDS OF QUESTIONS ABOUT SENSE OF AGENCY, THEIR FELT RECOGNITION, DO YOU FEEL HOW ARE THINGS GOING CHECK IN, BACK TO ASHLEY'S CONCERN ABOUT CLINICIAN RESEARCHER MIGHT NEED TO BE SOMEBODY WHO IS A LITTLE INDEPENDENT BECAUSE WE ALL KNOW E MORE VULNERABLE IN THE POSITION RESEARCH YOU DON'T WANT TO BE THE SQUEAKY WHEEL. >> IRBs INONGOING INFORMED CONSENT IS A PROCESS, NOT A LOT, MAYBE ZERO. >> IT IS OFTEN A IDEAL WE ASPIRE TO AND MAYBE DON'T PUT INTO PRACTICE WELL ENOUGH. IT TENDS TO BE EPISODIC. RATHER THAN ONGOING. >> SAMIR. I WAS GOING TO CALL ON YOU BEFORE BUT THEN YOU DISAPPEARED. LOOKS LIKE YOU HAD SURGERY. >> I DID I (INAUDIBLE) IN THE DISCUSSION BUT THIS WILL BE SHORT. THANKS SO MUCH REALLY INTERESTING. WONDERING I WAS INTERESTED IN WHAT THE PARTICIPANT WHO IS TALKING ABOUT THIS RELATIVE MAGNITUDE OF DOLLARS SPENT, PROJECT OVERALL GIVEN $50 PARKING PERHAPS. AND TIMES WHAT WE DISCUSS IN THIS GROUP THERE IS THE LAST TIME WE MET HOW MUCH IS ENOUGH, TOO MUCH, SHOULD THERE BE ANY, NONE, COMPENSATION WISE FOR THESE PARTICIPANTS IN PARTICULAR FOR THESE BCI STUDIES. I WONDER IF THAT CONVERSATION WENT FURTHER AND WHETHER THE PARTICIPANT HAD IDEAS OR SUGGESTIONS, YOU GAVE THEM A TON OF MONEY AND IT IS UNDUE INFLUENCE, DID THEY HAVE ANY SUGGESTIONS FOR WHAT THEY THOUGHT WOULD BE THE APPROPRIATE BALANCE? >> NO, I WILL SAY ABOUT THIS ONE, UNFORTUNATELY NOT -- I THINK OUR INTERVIEWER WAS MOVED BY HOW VEHEMENTLY ABOUT HOW HE SPOKE ABOUT IT, IT WAS A LITTLE SURPRISED. ONE THING BACK TO INTERVIEW OR PLAN IS TO INTERVIEW THEM MULTIPLE TIMES SO WE CAN ADD THOSE THINGS IN AS WE GO. KEY QUESTION. IT IS SOMETHING THIS WHOLE GROUP SHOULD BE TALKING ABOUT. >> I HOPE WE CAN DISCUSS IT MORE AT THE PANEL DISCUSSION. KAREN DID YOU TAKE YOUR NAME, -- HAND DOWN. OKAY. SHOULD WE MOVE TO THE PANEL THEN? DID YOU WANT THE SAY SOMETHING KAREN? PANEL. OKAY. >> THANK YOU. SO I WOULD LIKE TO INVITE MR. JOHNSON AND DR. ZAGHLOUL TO JOIN US FOR THE PANEL, I WILL INTRODUCE THEM AND THEY CAN MAYBE SAY A WORD OR TWO. SO MR. JAMES JOHNSON, THANK YOU FOR BEING WITH US TODAY. IS A PATIENT PARTICIPANT IN RESEARCH STUDIES CONDUCTED AT THE TNC BRAIN MACHINE INTERFACE CENTER LED BY RICHARD ANDERSON AT CAL TECH. OVER THE LAST THREE YEARS, HE'S BEEN A LONG TERM ACTIVE PARTICIPANT IN STUDIES INVESTIGATING MOTOR ACTIVITY AND MOTOR PLANNING ACTIVITY TO UNDERSTAND HOW BRAIN PROCESS IT IS WORLD. THANK YOU FOR JOINING US, MR. JOHNSON. DR. KAREEM ZAGHLOUL IS A SENIOR INVESTIGATOR OF FUNCTIONAL RESTORATIVE NEUROSURGEON SECTION AT THE NINDS INTRAMURAL PROGRAM AT THE NIH. HIS LAB FOCUSES ON NEURAL MECHANISMS UNDERLYING HUMAN COGNITIVE FUNCTION, DR.S ZAGHLOUL RECEIVED HIS M.D. AND Ph.D. DEGREES FROM THE UNIVERSITY OF PENNSYLVANIA COMPLETED A RESIDENCY IN NEUROSURGERY AT PENN AND COMPLETED CLINICAL FELLOWSHIP IN EPILEPSY SURGERY AND DBS SURGERY. THANK YOU SO MUCH FOR JOINING US TODAY. I WANTED TO START BY ASKING MR. JOHNSON IF YOU WOULD LIKE TO SAY A FEW WORDS OF INTRODUCTION BECAUSE OUR OTHER TWO SPEAKERS OF DR. GOERING AND FEINSINGER HAD A CHANCE TO SPEAK SO I WILL LET DR. JOHNSON AND ZAGHLOUL SAY A FEW WORDS AND SEE IF ANYONE WOULD LIKE THE ASK QUESTIONS AND BEGIN THE DIALOGUE. MR. JOHNSON, WOULD YOU LIKE TO START? >> WE CAN HEAR YOU FINE. THANK YOU. >> MY NAME IS JAMES, AND ACTIVE PARTICIPANT IN THE STUDY BMI, BRAIN MACHINE INTERFACE. MY BACKGROUND IS RESPIRATORY THERAPISTS AND I WAS INJURED IN A ROLL OVER ACCIDENT IN 2017. I WAS WENT THROUGH A LOT OF THERAPY AND TOWARDS THE HINT IF I STAY AT REHAB FACILITY, I WAS APPROACHED BY ONE OF THE PHYSICAL THERAPISTS WHO HAPPENED TO BE COORDINATOR FOR TECHNOLOGIES THAT INJURED PATIENTS COULD USE, TO GET ALONG IN THE WORLD. AND SHE ASKED IF I WOULD BE INTERESTED IN PARTICIPATING AT STUDY. KNOW MUCH ABOUT STUDIES SO I ASK INFORMATION ON -- ABLE TO INTRODUCE ME TO TEAM AT CAL TECH WORKING WITH DR. RICHARD ANDERSON. BASICALLY TOLD ME ABOUT STUDY, WHAT IT INVOLVED. AND VERY MUCH WAS INTERESTED IN THE STUDY BECAUSE AS A RESPIRATORY THERAPIST, RN, I WORKED IN NEUROLOGY DEPARTMENT. SO I WAS MADE AWARE OF SOME THINGS THAT ARE BEING DONE WITH PATIENT WHO GOT INJURIES. SO I THOUGHT WHY NOT. IT WOULD BE A GREAT WAY FOR WHOM? TO CONTRIBUTE STILL NOT ONLY AS WHICH I IN ADDITION BUT AS REGULAR JOE. >> GREAT. WONDERFUL. AS WE GET INTO THE DISCUSSION I WOULD LOVE TO HEAR HOW SOME OF SARA'S FINDINGS RESONATED WITH YOU IN YOUR EXPERIENCE. DR. ZAGHLOUL TELL US ABOUT YOUR PERSPECTIVE HERE. >> SURE. FIRST I WANT TO THANK YOU GUYS FOR PUTTING THISSING TO AND THIS HAS BEEN WONDERFUL SO FAR AND REALLY GREAT. GREAT TALKS AND IMPORTANT TOPIC. I KNEW ABOUT ASHLEY'S PAPER BUT SARA YOUR STUDY WAS QUITE FASCINATING TO HEAR JUST THAT PERSPECTIVE. SO JUST GIVE YOU A SENSE OF WHO I AM, I'M A NEUROSURGEON IN THE NIH INTRAMURAL PROGRAM OF THE NIH MOST OF MY SORT OF INVOLVEMENT IN THIS PARTICULAR AREA REVOLVES AROUND PATIENTS WHO ARE GETTING INTRACRANIAL ELECTRODES AROUND SEE INSURE MONITORS PATIENTS WITH EPILEPSY AND OUR RESEARCH THIS IS ONE OF THE FOUR DIFFERENT AREAS THAT I THINK ASHLEY MENTIONED OUR RESEARCH WAS SPECIFICALLY ON INVESTIGATING NEURAL SIGNALS WE CAPTURE FROM ELECTRODES WHILE PATIENTS ARE HERE IN THE MONITORING PERIOD SO STANDARD CLINICAL CARE TO ADDRESS QUESTIONS WE THINK MIGHT BE IMPORTANT FROM NEUROSCIENCE. SO WE THINK ABOUT ISSUES QUITE A BIT, WE HAVE NOT BEEN HEAVILY INVOLVED IN BCI TECH BOARD BUT WE HAVE TALK ABOUT AND THINK ABOUT THOSE ISSUES AS WELL. WE THINK THESE THINGS ARE VERY IMPORTANT ISSUES AND I THINK REALLY THE MAIN EMPHASIS WE TRY TO AT LEAST CARRY WITH US THROUGHOUT OUR WORK IS PUTTING THE CLINICAL CARE AND PATIENT FIRST. EVERYTHING ELSE BECOMES SECONDARY TO THAT. SO WE TRY AS MUCH AS POSSIBLE TO REVISIT THOSE QUESTIONS OVER AND OVER AGAIN FOR EVERY PATIENT IN TERMS OF WHO WE ARE. >> THANK YOU SO MUCH AND THANKS FOR BEING WITH US. SO I WOULD LIKE TO INVITE ANYONE TO RAISE THEIR HAND AND TO BEGIN TO RAISE QUESTIONS THERE WAS FODDER FOR DISCUSSION THAT BOTH ASHLEY AND SARA GAVE US AND I KNOW WE HAVE SOME GENERAL QUESTIONS THAT I'M GOING TO ASK NINA TO MAKE SURE THEY GET PUT UP SO PEOPLE CAN SEE THEM, GENERAL QUESTIONS THAT MIGHT GUIDE OUR DISCUSSION BUT WE DON'T HAVE TO STICK TO THOSE. SO OF COURSE ONE GENERAL QUESTION IS, DID -- IS ANYTHING BEING MISSED? WE HAVE ALREADY TALKED ABOUT A WHOLE BUNCH OF ISSUES BOTH IN INTRACRANIAL INTEROPERATIVE RESEARCH AND ALSO IN THE BCI INTERACTIVE LONG TERM STUDIES, DID WE MISS ANY ISSUES ARE THERE ISSUES THE REST OF YOU THINK OR THOSE WHO SPOKE THINK WE DIDN'T -- WE HAVEN'T HEARD THAT. >> CAN I JUST TOUCH ON SOMETHING -- >> PLEASE. >> SARA MENTIONED. WITH REGARDS TO COMPENSATION FOR PARTICIPANTS I REALLY DO FOR NEW PERSON, DIDN'T GET INTO THE STUDY FOR ANY TYPE OF COMPENSATION, SO THAT WAS JUST ADDED PLUS MONEY, REALLY FOR ME IT WAS MORE ALONG THE LINES OF WHAT CAN I DO ABOUT THE PLACE I'M IN HOW CAN I BE SOMEONE WHO HAS WORK OR VALUE, ESPECIALLY HAVING A CAREER SUCH AS MINE IN MEDICAL FIELD AND UNDERSTANDING WHAT COMES NEXT FROM THE BEGINNING OF THE INJURY ALL THE WAY UP UNTIL NOW EVEN, I UNDERSTOOD EVERY STEP COMING TO -- EVERY STEP OF THE WAY. WHEN THAT QUESTION WAS PRESENTED TO ME WHETHER OR NOT I WOULD BE INTERESTED IN A STUDY, I TOOK IT AS MY OPPORTUNITY TO CONTINUE TO CONTRIBUTE TO MEDICINE IN GENERAL AND TO THE WELL BEING OF PEOPLE OTHER THAN MYSELF WHO GOING THROUGH SIMILAR CRISES. SO AS FAR AS COMPENSATION THAT IS GREAT, I UNDERSTAND WHAT THAT PARTICULAR PERSON WAS TALKING ABOUT IN TERMS OF MULTI-MILLION DOLLAR PROJECTS AND SEEMS WHAT AMOUNTS TO BE PENNIES ON THE DOLLAR THAT THE PARTICIPANTS ARE GETTING. AND I GET THAT VERY MUCH. BUT FOR ME PERSONALLY LIKE I SAID, IT WAS MORE ALONG THE LINES OF WHAT CAN I DO IN MY STATE OF ME HOW CAN I CONTRIBUTE LIKE I WAS CONTRIBUTING BEFORE OR GRATIFYING LEVEL. I FIND RESEARCH TO BE HAPPENING FOR ME. >> THANK YOU SO MUCH FOR THAT COMMENT. I WANT TO ASK YOU FOLLOW-UP QUESTION AN MAYBE SARA HAS SOME THINGS TO SAY ABOUT THIS. I THINK A LOT OF PEOPLE FEEL LIKE THEY ARE -- AND THEY ARE, MAKING A HUGE CONTRIBUTION TO SCIENCE BY PARTICIPATING IN STUDIES OF THIS NATURE. I WONDER ABOUT THE -- AN COMPENSATION IS A PART OF IT BUT SARA MENTIONED SOMETHING BIGGER THAN COMPENSATION. I THINK YOU CALLED IT FAIR RECIPROCITY WHICH INCLUDED RECOGNITION, RECOGNITION OF YOUR CONTRIBUTION. MR. JOHNSON HOW IMPORTANT IS THAT? >> VERY IMPORTANT BECAUSE EVERYBODY WANTS TO BE RECOGNIZED FOR WHAT THEY DO. THAT IS JUST WHO WE ARE AS HUMAN BEINGS. WHAT I APPRECIATED FROM DR. ANDERSON'S TEAM WAS THAT WAS ACTUALLY INCLUDED AND CONTRACT DID I WANT TO BE RECOGNIZED FOR MY CONTRIBUTION ANY STUDIES OR PAPERS OR OR IF THERE ARE ANY JOURNALS OR ANYTHING OF THE NATURE, THEN I WANT TO BE RECOGNIZED, I SAID ABSOLUTELY YES AND I FEEL THAT ANYBODY MANY MY SITUATION WOULD WANT TO BE RECOGNIZED. YEAH. >> GREAT. SARA OR OTHERS ANYONE SAY ANYTHING ABOUT THAT? >> I SO APPRECIATE WHAT YOU ARE SAYING, JAMES. AND I THINK SOMEBODY ELSE THAT WE TALK TO INTERESTING THE PRONOUNS. WE PUBLISHED A PAPER WE DID THIS BECAUSE SHE FELT LIKE SHE WAS PART OF THAT TEAM, RECOGNIZED AS A EQUALLY CONTRIBUTING MEMBER WHO HAD DONE SOMETHING REALLY IMPORTANT IN THE WORLD. I GUESS I THINK ONE OF THE CONCERNS WOULD BE HOW WE MAKE SURE HA THAT KIND OF RELATIONSHIP IS ALWAYS GOING TO BE PART OF THE BAY, ESPECIALLY FOR THESE LONG TERM VERY INTENSIVE HIGHLY INTERACTIVE STUDIES THAT IT IS ALWAYS THERE. I GUESS ON THE COMPENSATION QUESTION I DO THINK PEOPLE ARE GOING TO BE DIFFERENTLY POSITIONED RELATIVE TO THIS. ONE OF THE THINGS THAT COMES TO MIND I WAS HAVING THIS CONVERSATION WITH THE PAST GRAD WHO HAS BEEN ADJUNCTS TEACHING AND APPARENTLY OUR INSTITUTION HAS MADE A RULE THAT YOU ARE NOT ALLOWED TO TEACH FOR FREE. SHE WANTS TO TEACH FOR FREE BECAUSE SHE HAS A RELATIONSHIP WITH CERTAIN STUDENTS THAT WANT INDEPENDENT STUDY IN HER AREA OF EXPERTISE. BUT I UNDERSTAND THE UNIVERSITY POSITION AS WELL, THERE IS A KIND OF EXPLOITATION THAT GOES ON EVEN IF YOU HAVE VOLUNTEERS WHO ARE WILLING TO DO THAT. SO I WANT TO RECOGNIZE INCREDIBLE VALUE OF DOING SOMETHING FOR THE SAKE OF MEANINGFUL PARTICIPATION AND FEELING LIKE YOU ARE MAKING A DIFFERENCE. THAT SHOULD NEVER BE -- I DON'T WANT IT TO BE JUST A JOKE. BUT I ALSO THINK THERE IS A WAY WHICH FAIR COMPENSATION FOR THE TIME IS PROBABLY SOMETHING WE SHOULD TALK ABOUT BECAUSE OF INTERACTIVITY AND EXTENT OF IT IT FEELS MUCH MORE LIKE A KIND OF PART TIME JOB THAN OTHER CLINICAL STUDIES. >> THREE HANDS. GO I A HEAD, JAMES, DID YOU WANT TO RESPOND? >> WHAT I HAVE TO SAY TO THAT IS EVERYONE IS COMING FOR A DIFFERENT -- I GUESS FINANCIAL SITUATION WOULD BE UNFORTUNATE ALL THE THINGS I DO OR I PAID FOR BY MY CAREER NOW AS A BUSINESS OWNER. I CAN UNDERSTAND HOW OTHERS WOULD FEEL THAT WAY, BECAUSE PARTICIPATING IN THESE STUDIES IS EXTREMELY TAXING ON THE PARTICIPANTS. LITERALLY WHEN I LEAVE A SESSION, I JUST WANT TO SLEEP. I JUST WANT TO HIT THE BED. IT IS LIKE EXERCISING A MUSCLE THAT HASN'T WORKED OUT IN MONTHS. I THINK YOU GO BACK TO THE GYM -- AND THEN YOU GO BACK TO THE GYM. YOU HAVE TO BUILD UP YOUR STAMINA WITH EACH SESSION TO THE POINT WHERE YOU CAN ACTUALLY DO TASKS WITHOUT IT BEING SO DIFFICULT WHILE DOING SOMETHING SO DRAINING. I GET THAT, IT IS HARD -- IT IS DIFFICULT SOMETIMES BECAUSE WE DO RELY ON -- HEAVILY ON OUR CAREGIVERS. AND WE DO HAVE TO COMPENSATE OUR CAREGIVERS. FOR THEIR TIME. AND FOR US TO -- THE STUDIES. FOR ME PERSONALLY, PUT IT THIS WAY WAY. WE HAVE BEEN DOING THIS FOR THREE YEARS PLUS NOW AND THERE ARE THINGS THAT WE DISCOVERED WHILE DOING THIS IS JUST ABSOLUTELY AMAZING. I WANT VERY MUCH TO BE PART OF THAT. ONE EXAMPLE IS THEY WANT TO SEE HOW I WOULD BE ABLE TO MANAGE CONTROLS, AND SAY LIKE A VIDEO GAME. ASKING WHAT KIND OF VIDEO GAMES DO YOU LIKE. I SAID WELL, I LIKE FIRST PERSON SHOOTER GAMES LIKE CALL OF DUTY AND THOSE TYPE OF TITLES, RIGHT? SO THEY WERE ABLE TO GET IN THE GAME THAT WAS -- THAT HAD AN OPEN SOURCE CODE TO WHERE THEY COULD WRITE CODE THAT I WOULD BE ABLE TO USE IN MY THOUGHTS. SO I LITERALLY BLAME VIDEO GAME LIKE CALL OF DUTY FIRST PERSON SHOOTER, JUST BY COMPLETELY CONTROLLING THAT WITH MY THOUGHTS. AND THOSE GAMES ARE PRETTY INTENSE, THEY ARE VERY INTRICATE WITH THE GRAPHICS AND MOVEMENT AND CONTROL, IF ANYONE HERE HAS EVER PLAYED THOSE GAMES. SO THE FACT THAT I'M ABLE TO IMAGINE I'M HOLDING A PLAYSTATION CONTROLLER IN MY HAND AND THEN THE COMPUTER IS ABLE TO DIFFERENTIATE WHICH NEURAL PATHWAYS ARE BEING USED, IN MY THOUGHTS OR IN MY BRAIN TO ALLOW ME TO MAKE THAT -- USE THOSE CONTROLS. HERE IS ANOTHER THING. I DON'T KNOW IF I'M ALLOWED TO SAY THIS, BUT A PARTICULAR MOTOR COMPANY, CAR COMPANY, APPROACHED THE PROJECT AND THEY ARE INTERESTED IN HAVING ME DRIVE A VEHICLE, GETTING MY THOUGHTS THEY WERE ABLE THE SEE HOW WELL MY CONTROL WAS IN THE GAMING ENVIRONMENT SO THEY DEVELOPED A SIMULATOR AND SENT IT DOWN TO THE LAB AND I WAS ABLE TO CONTROL THE CAR, CONTROL THE VEHICLE AND SIMULATOR AS WELL. DURING OUR FIRST STAGES THREE YEARS IS NOT A LOT OF TIME, BUT IN THAT THREE YEARS WE HAVE ACCOMPLISHED A LOT. I SAID WE OFTEN BECAUSE THEY REALLY DO MAKE ME FEEL LIKE I AM PART OF THAT TEAM. THAT IS EVERYTHING TO ME. >> GREAT. THANK YOU. I SEE WINSTON AND THEN SAMIR. >> PERSONALLY I WANT TO SAY HAVING THIS PERSPECTIVE OF RESEARCH PARTICIPATION HERE IS REALLY WONDERFUL AND GREAT TO HEAR, JUST DIRECT EXPERIENCE. I WANTED TO GO BACK, I WAS THINKING ABOUT THE RELATIONSHIP BETWEEN ASHLEY AND SARA'S DISCUSSIONS. IN OUR WORK WE HAVE A DISTINCT THAT MIGHT BE HELPFUL BECAUSE IT SEEMS LIKE THERE'S CERTAIN CONSIDERATIONS APPLIED TO THE STUDIES ASHLEY WAS DISCUSSING THAT DON'T APPLY TO SOME OF THE STUDIES SARA IS DISCUSSING VICE VERSA. IN SOME OF OUR WORK WE DISTINGUISH BETWEEN OPPORTUNITIES STUDIES WHERE SOMEBODY IS RECEIVING NEUROSURGERY FOR CLINICAL INDICATION, THEN THERE IS AN OPPORTUNITY TO USE MORE BASIC NEUROSCIENCE IN THE COURSE OF PROCEDURE OR USING DEVICE IMPLANTED FOR CLINICAL INDICATION, FOR ESTABLISHED CLINICAL INDICATION AND DISTINGUISHING THOSE FROM STUDIES WHICH THE NEUROSURGERY IS OPTIONAL FROM A CLINICAL POINT OF VIEW AND IT IS DONE FOR THE SAKE OF DOING WHAT IS IN MANY CASES LONG TERM RESEARCH STUDY. SO I'M OFFERING THIS DISTINCT WE WORKED ON, I'M WONDERING WHO MIGHT BE USEFUL HERE BECAUSE CONCERNS ASHLEY RAISED H NEAR PAPER IN THE GROUP PAPER ABOUT PRESERVING THE INTEGRITY OF CLINICAL SPACE OR PARTICULAR CONCERNS ABOUT VOLUNTARINESS ARE ESPECIALLY HUGE WHEN PATIENT PRESENTING FOR INDICATED NEUROSURGICAL PROCEDURE AND SOMEBODY IS OFFERING TO IN ADDITION CONDUCT BASIC NEUROSCIENTIFIC RESEARCH AS A COURSE. AND THOSE KINDS OF CONSIDERATIONS COME UP A LITTLE BIT DIFFERENTLY LIKE SARA WAS DISCUSSING IN CASE OF PATIENT WHO MADE THE DECISION TO SIGN UP ENTIRELY VOLUNTARY WAY FOR BRAIN SURGERY, THEIR FAMILY WAS A LITTLE SKEPTICAL ABOUT. PRECISELY BECAUSE IT WASN'T A CLINICALLY INDICATED SURGERY. SIMILARLY SOME OF THE CONCERNS RELATED TO COMPENSATION OR ACCESS TO DEVICE AFTER TRIAL THOSE DON'T COME UP IN THE SAME WAY FOR THESE KINDS OF BASIC SCIENCE OPPORTUNITY STUDIES WHERE IT IS NOT NECESSARILY SOMETHING PEOPLE ARE USING. JUST A POINT THAT OCCURRED IN TERMS OF PLACES WHERE CONSIDERINGS ARE A LITTLE BIT DIFFERENT AND DON'T HAVE TO USE MY DISTINCT WE CAN COME UP WITH A DIFFERENCE WORD, BUT THESE DIFFERENT RESEARCH SETTINGS THAT SOME WAYS RAISE THE DIFFERENT KINDS OF CONCERNS. >> HELP. , WINSTON. ONE QUESTION BEFORE I TURN TO SAMIR. IS THERE EVER COMPENSATION IN INTRACRANIAL -- THE ONES THAT ARE DONE IN THE MIDDLE OF A CLINICAL SITUATION? >> I THINK THERE ARE ONES THAT SHARE SOME FEATURES OF BOTH. A LOT OF ONES THAT ARE DONE MANY THE CLINICAL SETTING ARE VERY SHORT TERM SO IT IS JUST IN -- WHEN SOMEBODY IS IN THE OPERATING ROOM OR EPILEPSY MONITORING UNIT ASHLEY MENTIONED VERY INTERESTING STUDIES THAT ARE BEING DONE WITH THE NEUROPIECE DEVICE WHERE PEOPLE ARE IMPLANTED WITH CLINICALLY INDICATED DEVICE FOR EPILEPSY BUT BECAUSE THIS DEVICE IS THERE BECOMES AN OPPORTUNITY FOR LONGER TERM STUDIES. SO IT HAS SOME OF THE FEATURES THAT SARA WAS TALKING ABOUT IN TERMS OF THE DEVICES IMPLANTED FOR CLINICAL INDICATION BUT SOMEBODY MIGHT BE COMING AT LAB MULTIPLE TIMES A WEEK, IN LONG TERM BASIS. SO IT DOES HAVE THAT LONGER TERM COMPONENT COMPONENT. I DON'T KNOW THE DETAILS OF THAT STUDY, BUT THAT WOULD BE AN EXAMPLE OF AGAIN DEVICE IMPLANTED FOR CLINICAL INDICATION THAT PROVIDES OPPORTUNITY TO ASK RESEARCH QUESTIONS THAT ARE IN MANY CASES COMPLETELY INDEPENDENT OF THE CLINICAL REASON IMPLANTING DEVICE. >> SORRY I WANT TO JUMP IN, I REALLY LIKE THE OPPORTUNITY AND BUNS THAT ARE ADDITIONAL, AND WONDER IF WE CAN THINK THE SAME FOR VISITS. IF YOU ARE HERE IN THE MONITORING UNIT WE ARE HERE FOR CLINICAL INDICATION AND STAYING THAT PERIOD OF TIME FOR CLINICAL REASONS WHEREAS RNS OR DEVICE, PLACE FOR CLINICAL INDICATION MAYBE COMING BACK FOR RESEARCH VISITS THAT ARE EXTRA SO MAYBE WE SHOULD ALSO THAT DISTINCT NOT JUST TO THE IMPLANT OR THE DEVICE BUT ALSO TO THE VISITS THEMSELVES. >> GREAT DISTINCTION. >> FOLKS RESPONDED TO THE LAST ONE, THE QUESTIONING HAD -- I THINK IT IS UNCOMMON FOR RESEARCH THAT HAPPENS IN THE OR DURING DBI OR TO BE COMPENSATED OUR IRB DOESN'T DO THAT. I THINK IT IS UNCOMMON BUT THE DISTINCT WHERE SPECIFICALLY FOR RESEARCH THAT ARE NOT PART OF CLINICAL CARE THOSE OFTEN ARE, SO I USE THE EMU FOR TRIAL, DOING PATIENTS WITH DEPRESSION, THEY ARE ONLY THERE FOR THE TRIAL THEY GET PAID FOR VISIT AND EMU STATES, LONGER THEY GET PAID MORE. SO THAT DISTINCT WORKS WELL FOR THAT. MY QUESTION OR I'M NOT QUESTION BUT I GUESS COMMENT IS FROM A COUPLE TRENDS AGO ON THIS ISSUE OF RECOGNITIONRECOGNITION. THAT MENTIONED AND WE CAN CHAT ABOUT. THANK YOU FOR YOUR PARTICIPATION. SOMEONE NOT INVOLVED IN THAT RESEARCH AT ALL AND I KNOW AND RESPECT THE WORK AND I THINK IT IS WONDERFUL THAT YOU AND FOLKS LIKE YOU ARE INTERESTED PARTICIPATING SO THAT WE CAN ALL LEARN. AS AN INTERESTED BYSTANDER I THANK YOU. >> ISSUE OF RECOGNITION IS IMPORTANT ONE AND CUTS BOTH WAYS. AS YOU SAID AS WE DICES CUD-- THEOTHER SIDE IS WE HAVE TO BE CAREFUL WITH HOW WE PORTRAY IT TO POTENTIAL PARTICIPANTS. SO I WONDER HOW IF WE TAKE IT BACK TO THE POINT OF TALKING TO A POTENTIAL CANDIDATE FOR BCI STUDY OR INPATIENT EPILEPSY STUDY, WE HAVE TO BE CAREFUL ABOUT WHAT WE TALK A BIT ABOUT AS BENEFITS OF PARTICIPATING IN THE STUDY. HOW DOES ONE TALK ABOUT RECOGNITION WITHOUT HIGHLIGHTING OR UNDERSCORING TOO MUCH TO MAKE IT SOUND LIKE A BENEFIT THAT COULD BE AGAIN SORT OF GIVEN MORE WAY OR BEING USED IN A WAY TO INFLUENCE BEYOND WHAT IS APPROPRIATE. COMPENSATION IS ONE THING, RECOGNITION IN GENERAL IN TERMS OF SO AND SO PARTICIPATED IN THIS STUDY. I THINK TOO MUCH AND IT COULD BE INAPPROPRIATE, TOO LITTLE AND PARTICIPANT FEELS USED. AS WE HEARD BOTH WAYS. IT IS CHALLENGE BECAUSE EVERYONE HAS EVERY INDIVIDUAL PERSON HAS DIFFERENT LINE WHERE THAT TRANSITION MIGHT OCCUR. AND I THINK THAT IS WHAT MAKES IT CHALLENGING. I WONDER IF ONE SOLUTION IS TO FOR ANY INDIVIDUAL WHO IS BEING CONSIDERED FOR ENROLLMENT IN THESE STUDIES TO TRY TO BROADEN THEIR OWN UNDERSTANDING OF THIS WORLD OUT THERE, ALL THE PEOPLE ON THE ZOOM BOXES, ALL THE PARTICIPANTS WHO HAVE BEEN IN THESE STUDIES TO LET THEM KNOW THEY ARE PART OF THIS ECOSYSTEM, OF CLINICIANS AND SCIENTIST, PARTICIPANTS, AND LET THEM KNOW THERE'S DIFFERENT PERSPECTIVES THAT EACH OF THESE PEOPLE HAVE INDIVIDUALLY. T IT GETS BACK TO QUESTION OF THIS VIDEO, HOW SPECIFIC OR GENERAL CAN IT BE. WE DISCUSS THIS IN THE ROH MEETINGS AND THE IDEA BEEN TO CREATE A FEW RADIOS, ONE FOR PEOPLE THAT PARTICIPATE IN BCI LIKE THINGS WHERE SURGERY IS JUST FOR RESEARCH AND HAVING MET MULTIPLE BUSINESS VERSUS ANOTHER ONE WHERE SURGERIES IN CLINICAL AND YOU SEE IN EMU AND PARTICIPATE IN THESE STUDIES. BUT FOR THEM TO BE ABLE TO UNDERSTAND THAT THEY ARE NOT THE ONLY PERSON AND WILL SAY THIS HAS BEEN GOING ON AND HOW LONG BUT THEM TO KNOW THEY ARE NOT THE ONLY ONE, ALL OF THIS HAS GONE ON BEFORE AND CONTINUE AFTER, -- SORRY. PAUSE. FOR THE AUDIO. BUT TO LET THEM KNOW THEY ARE PART OF THIS CONTINUUM THAT HAS PRODUCED THIS -- THESE RESULTS BEFORE AND WILL CONTINUE PRODUCING RESULTS IN THE FUTURE. MAYBE THAT COULD DO IT IN SOME GENITAL APPROPRIATE WAY THEY KNOW PART OF THE FAMILY THIS ECOSYSTEM OF PARTICIPANTS, TO GIVE THEM THE OPPORTUNITY TO DECLINE IF THEY WOULD LIKE TO BUT IF THEY PARTICIPATE THANE THEY ARE PART OF A BIGGER PROJECT. AND THAT MAYBE A WAY TO PROVIDE THEM WITH THE BROAD UNDERSTANDING THAT -- BUT STILL APPROPRIATE IN TERMS OF NOT BEING UNDULY INFLUENTIAL. >> GREAT. THANK YOU. I SEE FIVE HANDS UP. ASHLEY FIRST. >> I WANTED TO RESPOND TO SOME OF THE THINGS THAT SAMEER WAS SAYING. I WANT TO -- MAYBE THIS WILL COMPLICATE THINGS MORE BUT PHILOSOPHERS LIKE TO DO THIS. IN A DIFFERENT PROJECT THAN I'M PART OF WE HAVE BEEN TALKING WITH ORGAN DONORS AND GRAPPLING WITH THIS CHALLENGE OF HOW TO ENHANCE INFORMED CONSENT FOR PEOPLE WHO WANT TO DONATED ORGANS AND THINKING HOW THAT EXPERIENCE IS TRANSFORMATIVE, A LOT OF PEOPLE SAY THEY DON'T REALLY KNOW WHAT IT WOULD BE LIKE TO GIVE A EVERYBODY TO SOMEONE ELSE AND SAVE HAIR LIFE SO WHAT THEY HAVE DONE IS MADE A REPOSITORY OF STORIES THEY HAVE COLLECTED FROM POTENTIAL DONORS RECIPIENTS, PEOPLE WHO HAVE DONE IT. AND OFFERED IT AS A KIND OF PROPOSE IT AS A RESOURCE FOR PATIENTS BUT NOT PUT FORWARD OR PLUCKED ANY PARTICULAR NARRATIVES TO OFFER WITH ANY PARTICULAR VALENCE. THAT HAS ITS OWN SET OF CHALLENGES SO RAISES HOST OF OTHER CONCERNS. YOU WILL GET THE STORIES THAT PEOPLE WANT TO SHARE. I THINK SOME OF THE STUFF WE ARE TALKING ABOUT TODAY GRAPPLING WITH THESE QUESTIONS. SO HOW DO WE -- IT NOT ONLY MATTER WHAT IS IS IN THOSE STORIES BUT WHO IS PUTTING FORWARD AND WHAT REASON SO YOU CAN PUT FORWARD THE SAME SET OF EXPERIENCES BUT THERE WOULD BE A DIFFERENT INTENTION BEHIND OFFERING THOSE STORIES AND I THINK THE APPROPRIATE USE IN A WAY THAT RESPONDS TO PATIENT RECOGNIZES THE PARTICIPANTS AS PEOPLE WITH INTEREST AND STAKE AND DESIRE TO PARTICIPATE BUT ALSO CAREFUL ABOUT WHETHER THAT IS BEING USED IN BAYS THAT ARE RAISING QUESTIONS ABOUT INFLUENCE AS SAMEER SUGGESTED SO I WANTED TO THROW MORE COMPLICATION OUT THERE. >> NICE TO HEAR ABOUT THE REPOSITORY. HANK. >> LAWYERS LIKE ADDING COMPLICATIONS TOO. I'M NOT SURE IF THIS IS REALLY ADDING COMPLICATION BUT IT OCCURRED TO ME TO WONDER LISTENING TO THIS, HOW BROAD OR NARROW OF SCOPE OF KINDS OF TRIALS ARE WE TALKING ABOUT? THE FIRST PRESENTATION WAS INTRACORTICAL WORK. BUT THERE IS A HUGE DIFFERENCE BETWEEN BCI RESEARCH AND SAY PUTTING AN ECOG ON A PATIENT IN THE HOSPITAL WAITING FOR EPILEPTIC SEIZURE, MAYBE ONE TIME IN THEIR LIFE EXPERIENCE, SARA TALKED ABOUT WHAT WAS YOUR TITLE? LONG TERM HIGHLY INTERACTIVE STUDIES WHICH I THINK MAYBE CAPTURE SOME OF THIS BETTER BUT THERE WILL BE LOTS OF VARIATIONS AND EVERYTHING BCI IS A LONG TERM HIGHLY INTERACTIVE STUDY, MAYBE CARRYING AROUND A CELL PHONE AND DOING SOMETHING ONCE OR TWICE A DAY ON THE CELL PHONE IS A LONG TERM HIGHLY INTERACTIVE STUDY. AND OF COURSE THERE IS A WHOLE ISSUE THAT DOES THIS HOW TO WHAT EXTENT THIS EXTENDS BEYOND NEUROSCIENCE AND NEUROSTUDIESSTUDIES. SO CURIOUS THE PEOPLE HAVE THOUGHTS WHAT THE CONTOUR, WHAT THE SHAPE OR SCOPE OF KINDS OF STUDIES THAT THIS GIVES US, THAT ARE ENCOMPASSED IN THE LESS SONS THAT WE HAVE BEEN TALKING ABOUT SO FAR. >> YOU WANT TO CALL ON SOMEBODY SPECIFICALLY TO ANSWER THAT? OR JUST WANT GENERAL DISCUSSION? >> I JUST PUT THAT OUT THERE. KRISTINA, IF YOU WANTED TO ANSWER THAT, THAT'S OKAY WITH ME. >> I ACTUALLY THINK WHAT WINSTON OFFERED A WHILE AGO IS A NICE WAY TO DICHOTOMIES, SOME ARE OPPORTUNISTIC AND SOME ARE OPTIONAL. IT IS NOT THE ONLY DISTINCTION BUT A USEFUL DISTINCTION, DR. ZAGHLOUL ADDED TO THAT. >> HI, DO I GET TO GO NEXT? I THINK IT IS REALLY INTERESTING QUESTION FROM HANK. WHEN WINSTON WAS OFFERING THE DISTINCTION, I THOUSAND WE HAVE THAT -- IN THE TWO PRESENTATIONS, VERY DIFFERENT KINDS OF THINGS. AS PEOPLE SAID THERE'S SO MANY THINGS IN THE MIDDLE, GROUP IS WORKING WITH -- HERE AT UDUB ON INTRACORTICAL DBS FOR POST STROKE STUDY. THAT IS A RESEARCH STUDY THAT DOESN'T REQUIRE A NEUROSURGERY FOR THE PERSON WOULDN'T NEED IT FOR NORMAL REHAB POST STROKE BUT AIM IS THERAPEUTIC IN THE WAY SPONSOR BCI STUDIES TALK ABOUT, IT IS A QUALITY OF LIFE ENHANCER AIM BUT NOT THERAPEUTIC IN THE SAME SENSE THAT WE TYPICALLY THINK OF IT. I DO THINK AS WE EXPAND THESE STUDY, IN DIFFERENT DIRECTIONS, I DON'T KNOW THAT THAT BROAD DISTINCTION IS GOING TO CAPTURE. THINGS FULLY. BUT I LIKE IT AS A LITTLE HANDLE TO HOLD ON TO LEAST FOR RIGHT NOW. I DO THINK THE INTEROPERATIVE ONES ARE QUITE DIFFERENT. ASHLEY'S POINTS WHICH WE HAVEN'T TALKED ABOUT YET, ABOUT POSSIBILITY OF REFUSAL WHEN YOU ARE IN AN INCREDIBLY VULNERABLE POSITION AWAKE MAYBE WITH YOUR HEAD IN THE STEREO TACTIC FRAME. HOW CAPABLE ARE YOU IN THAT STATE OF REALLY UNDERSTANDING, I WORKED WITH ANNA WEXLER ON A STUDY OF PEOPLE DOING INTEROPERATIVE BASIC NEUROSCIENCE STUDIES AN PEOPLE THAT SHE TALKED TO DIDN'T FULLY UNDERSTAND LIKE THEIR MEMORY OF WHAT WAS HAPPENING IN THAT TIME FRAME WAS NOT VERY CLEAR. SO I THINK THERE ARE INTERESTING QUESTIONS THERE THAT ARE VERY DIFFERENT. LAST THING I WANT TO SAY, THIS IS SOMETHING KAREN HAS SAID IN MANY OCCASIONS. I WANT TO ECHO IT, ONE OF THE KEY THINGS ABOUT RECOGNITION IS ENSURING THAT THE PERSON WHO IS A PARTICIPANT ALWAYS FEELS LIKE THEY ARE TREATED AS A SUBJECT AN AGENT, NOT THE OBJECTIVE STUDY WHO IS JUST PASSIVELY CONTRIBUTING SOME NEURAL DATA. ESPECIALLY FOR THE LONG TERM INTERACTIVE ONES SO THEY ARE RECOGNIZED AS A HIGHLY IMPORTANT CONTRIBUTING TEAM MEMBER. I THINK IT IS AN OPEN QUESTION, EXACTLY HOW WE DO THAT TO GO BACK TO SAMEER'S POINT, WITHOUT SOMEHOW OVEREMPHASIZING THAT BENEFIT TO LURE PEOPLE INTO THE STUDY. >> SORRY, KEEP GOING. >> I WAS JUST GOING TO SNEAK IN AND SAY I COMPLETELY AGREE AND I WOULD ALSO SAY THIS QUESTION OF RECOGNITION IS NOT A MOOT POINT EVEN IN THE INTEROPERATIVE STUDY SO SOME OF THE THINGS WE HEARD PATIENTS SAY LONG TERM HIGHLY INTERACTIVE STUDY CARING ABOUT RESEARCH INTEREST AND PARTICIPATION HOW CAN WE RESPOND TO INTEREST AND TREAT THOSE PARTICIPANTS AS PEOPLE AS AGENTS AS WELL. EVEN THOUGH WHEN PARTICIPATING IN THE STUDY, THERE'S ALL SORTS OF COMPLICATING FACTORS IN THE OR. THIS IS A FANTASTIC POINT AS WELL AND CAN APPLY THOSE STUDIES. >> KAREN IN A SECOND BUT ALSO RESPOND TO WHAT SARA SAID, I THINK THERE ARE SO MANY -- THERE IS A DISTINCT THAT CAN START US AND THEN WE GO DOWN THE ROAD AND THERE'S OTHER DISTINCTIONS ALONG THE WAY. YOU MADE THAT POINT BEAUTIFULLY THAT YOU CAN'T JUST SAY OPPORTUNISTIC VERSUS OPTIONAL BECAUSE THERE'S SO MANY OTHER CONSIDERATIONS. ONE THING THAT IS INTERESTING IS WHAT ARE THE DINTSES THAT MATTER FOR THE ETHICAL CONSIDERATIONS WE NEED TO THINK ABOUT SO WE HAVE TALKED ABOUT COMPENSATION AND RECOGNITION BOTH OF YOU SPOKE ABOUT IN YOUR PRESENTATIONS AND WE HAVEN'T SPOKEN ABOUT IT YET MUCH ON THIS PANEL, THIS WHOLE QUESTION OF WHAT IS CONSENT, AS STEVE MENTIONED EARLIER, NOT JUST CONSENT BUT DISCUSSION ALL THE WAY THROUGH. AND BEING PART OF THAT DISCUSSION ALL THE WAY LIEU SO THOSE ARE OTHER THINGS TO GET BACK TO. KAREN. >> I REALLY APPRECIATED PERSPECTIVE BROUGHT UP SEVERAL TIMES AND I'M GRATEFUL TO JAMES FOR BEING HERE. IT MADE ME WONDER SOMETHING SIMILAR TO WHAT EVA PUT IN THE CHAT WHERE SHE ASKS FOR SUPPORT GROUPS OR RESEARCH PARTICIPANTS AND CAREGIVERS AND I WAS WONDERING IF JM -- MAYBE SARA AN ASHLEY COULD MENTION, IF THERE WERE ALREADY EXISTING COMMUNITIES OF PARTICIPANT RESEARCHERS IN THE BCI SPACE, IF THERE AREN'T ANY IS WILL A DESIRE TO HAVE ONE? AND MAYBE THAT COULD HELP US WITH OUR ONGOING PROCEDURES FOR -- ONGOING PROCEDURES FOR CONSENT. SEE IF YOU CAN STILL HEAR ME. >> WE CAN. >> SO -- I'M SORRY, GO AHEAD JAMES. >> UNFORTUNATELY THERE AREN'T ANY SUPPORT GROUPS FOR PEOPLE WHO ARE PARTICIPATING IN STUDIES. I THINK PARTLY TO DO WITH -- THEY MAY BE INVOLVED IN DIFFERENT ASPECT OF THE STUDY. I KNOW FOR PARTICIPANTS UNDER DR. ANDERSON, AT CAL TECH THERE ARE DIFFERENT ASPECTS OF THIS STUDY, FOR EXAMPLE IMPLANTS ARE IN DIFFERENT AREAS OF THE BRAIN. FOR EACH INDIVIDUAL PARTICIPANT. BUT IN TERMS OF A COMMUNITY TYPESET UP WHERE WE CAN COMMON KATE WITH EACH OTHER, I BELIEVE THAT EXISTS. >> OKAY. GO AHEAD SARA. >> JAMES, DO YOU THINK IT WOULD BE HELPFUL OR VALUABLE AND I THINK IN RESPONSE TO KAREN, I WOULD THINK ABOUT THIS STUDY WE DID NOW A WHILE BACK WITH PEOPLE USING AN EXPERIMENTAL DBS, FOR TREATMENT RESISTANT DEPRESSION AND/OR OCD. THAT GROUP OF PEOPLE WE DID A FOCUS GROUP RATHER THAN INDIVIDUAL INTERVIEWS. THEY WERE EXCHANGING CONTACT INFORMATION AFTERWARD THINKING SOMEBODY ELSE WHO HAS THIS EXPERIENCE AND CAN TALK TO ME ABOUT JUST ONE OF THE THINGS WE FOUND WAS INTERESTING CHANGES IN RELATIONSHIPS ON THE BASIS OF KNOWING YOU HAD THIS DEVICE THAT COULD ALTER SOMETHING ABOUT YOUR MOOD OR BEHAVIOR ESPECIALLY WITH THE PATIENT CONTROLLER WHETHER YOU COULD BE SHIFTED IN RESPONSE TO THINGS THAT OTHER FAMILY MEMBERS WERE SAYING SO IT WAS REALLY IMPORTANT FOR THAT GROUP TO SEEMINGLY THROUGH THIS EXPERIENCE OF FOCUS GROUP HAVE ACCESS TO OTHER PEOPLE. I DON'T KNOW. CURIOUS FROM JAMES, DO YOU THINK IT WOULD BE INTERESTING, HELPFUL, ONE FOR YOU WHO IS IN THE STUDY AND THINKING ABOUT PROSPECTIVE PEOPLE COMING INTO A STUDY TO BE ABLE TO JOIN A CHAT GROUP WITH YOU AND OTHERS WHO ARE ALREADY IN IT. >> ABSOLUTELY. IF I WAS ABLE TO SPEAK WITH PEOPLE WHO ARE INVOLVED IN THE SAME STUDY, THAT WOULD BE GREAT. I WOULD LOVE TO SWAP STORIES AND HEAR SOME OF THE CHALLENGES THEY EXPERIENCE. SO AND SOME OF THE SOLUTIONS THEY MIGHT HAVE. NOT ALL FUTURES AND ROSES, IT IS QUITE CHALLENGING. I MEAN, WE HAVE TO WALK AROUND WITH OUR PHYSICAL APPEARANCE ALTERED. WE HAVE THESE ELECTRODES STUCK ON THEIR -- OUR HEADS. I USE TO NEVER WEAR HATS BEFORE, NOW I WEAR HATS BECAUSE IT IS EASIER TO WHERE WEAR A HAT THAN HAVE THE STARES WHEN PEOPLE ASK WHAT IS THAT ON YOUR HEAD. SO YEAH, THERE IS A DEGREE OF DEPRESSION THAT IS ASSOCIATED WITH WHAT WE HAVE TO GO THROUGH. TO HAVE FOCUS GROUP OR INTERACTION WITH OTHERS THAT WOULD BE BENEFICIAL. >> GO AHEAD SARA. YOU WANT TO RESPOND? >> MY HAND. >> I WANTED TO SAY, THINKING HANK'S QUESTION MAYBE SOME OF -- ONE OF THE THINGS THAT IS RELEVANT TO HOW INTERACTIVE -- SO ONE OF THE THINGS I WAS TRAINED TO ADDRESS IN MY SLIDES IS TIME CONSUMING NATURE OF IT AND INVASIVENESS IN THIS NON--- NOT FOCUSED ON SURGICAL RISK BUT ON THE INVASIVENESS IN YOUR LIFE KIND OF WHICH I THINK MATTERS THERE IS A WAY IN WHICH THE CELL PHONE STUDY THAT YOU DESCRIBED HANK, IT IS MULTIPLE TIMES DURING THE DAY YOUR PHONE BUZZES AND YOU HAVE TO DO SOMETHING BUT IF YOU ARE DONE IN FIVE MINUTES YOU ARE NOT TAXED MENTALLY AND PHYSICALLY, YOU DON'T HAVE TO GO SOMEWHERE TO DO IT, THAT SEEMS COMPLETELY DIFFERENT FROM -- THE JOB YOU DO THAT IS VERY TIRING IN YOUR AS JAMES SAID YOU ARE TIRED WHEN YOU GO HOME, IT IS NOT JUST THE TIME IN THE LAB BUT WHAT FOLLOWS FROM THAT. I THINK THAT IS ONE RELEVANT FEATURE. I DON'T HAVE A TAXONOMY PREPARED. >> I WOULD LIKE TO SHIFT OUR DISCUSSION A LITTLE BIT, ALL THE THINGS WE HAVE BEEN TALKING ABOUT MIGHT BE RELEVANT HERE, I WANT TO ASK EVERYBODY IF THEY CAN THINK ABOUT AND OPINE ON WHAT ETHICAL CHALLENGES HAVE BEEN IDENTIFIED IN THESE DISCUSSIONS OR RELATED ONES, THAT MIGHT BENEFIT FROM ADDITIONAL RESEARCH, ADDITIONAL GUIDANCE OR DISCUSSION BY THE NEUROETHICS WORKING GROUP OR SOME COMBINATION THEREOF. SO YOU HAVE TO THINK ABOUT ALL THE THINGS WE HAVE BEEN TALKING ABOUT, WHAT DO WE NEED MORE RESEARCH ON? WHAT DO WE NEED MORE GUIDANCE ON? WHAT CAN THE NEWG DO AS A -- FOR ANY OF THESE ISSUES IN TERMS OF FORWARDING THE DISCUSSION. ANY IDEAS ON THAT? I CAN CALL ON EVERYBODY, OR I CAN LET YOU VOLUNTEER. SAMEER. GO FOR IT. >> WONDER WE TALKED ABOUT THIS ASHLEY IN YOUR -- YOU TALKED ABOUT THIS, THE DUAL ROLE ISSUE AND AS SOMEONE STUCK IN DUAL ROLE I WONDER HOW BEST TO DO THIS. WE TALKED ABOUT VARIOUS MODELS, IN EXTREMES ARE THAT ON THE ONE HAND THE QUESTION SCIENTIST DOES THE ENTIRE CONSENT, THAT IS IT. ON THE OTHER HAND THEY GIVE IT UP ENTIRELY TO SOMEONE ELSE. AND THE OTHER PERSON DOES IT. THEN MAYBE THERE IS VARIOUS HYBRID MODELS WHERE THE DUAL ROLE PERSON HAS SOME PARTICIPATION IN IT. JUST SPEAKING OF MYSELF THAT IS WHAT WE DO, I WILL PARTICIPATE IN IT JUST TO A CERTAIN POINT THEN HAND OFF FOR SOMEONE ELSE TO PICK UP AND FINISH. IT IS NOT PERFECT, DOESN'T WORK EVERY TIME BUT THE REASON FOR THAT I FEEL LIKE IS JUST THE DISCUSSION OFTEN INVOLVE NOT JUST RESEARCH TOTALLY SEPARATE FROM THE SURGERY BUT FOR POTENTIAL PARTICIPANT, THEY ARE ALL INTERTWINED. IT IS HARD NOT TO BE THERE WHEN THEY START ASKING ABOUT -- WHAT IF THIS HAPPENS, RESEARCH COORDINATORS SO I WOULD LIKE TO KNOW, I MEAN FROM THE CANDIDATE ENROLLED PARTICIPATE PERSPECTIVE, WHICH OF THESE HAY THINK WOULD BE USEFUL IN TERMS OF GETTING INFORMATION THEY NEED, BEING ABLE TO MAKE A DECISION THAT IS INFORMED, TOTALLY WITHOUT INFLUENCE FROM CLINICIANS, SUCH AS MYSELF WHO THEY TRUST BUT TRUST FOR THE SURGERY, SEPARATE THING, WHERE THEY TRUST WHAT WE ARE DOING ON RESEARCH SIDE OF THINGS. I DON'T KNOW HOW BEST TO DO IT. A CROSS SECTION THROUGH WHAT IS HAPPENING NOW BECAUSE EVERYONE IS DOING IT DIFFERENTLY, YOU GET A SNAP SHOT AND IF YOU SORT OF HAVE IT DETAILED ENOUGH OF HOW THE PROCESS WAS DONE, IF THERE IS AN ACCOUNT MAYBE HAVE SOME SENSE WHAT WORKED WELL AND WHAT DIDN'T. IN A CROSS SECTIONAL WAY. MAYBE FROM THAT YOU CAN HOBBLE TOGETHER TO PITCH THIS THING TO WORK BEST. >> SO YOU ARE TALKING RESEARCH, DOING RESEARCH IN THAT ISSUE ESPECIALLY FROM THE PERSPECTIVE OF PARTICIPANTS. >> RIGHT. >> GREAT. GREAT IDEA. OTHERS. ANYBODY ELSE HAVE IDEAS ABOUT RESEARCH GUIDANCE OR NEWG UPTAKE? ON ISSUES WE HAVE DISCUSSED TODAY? JIM. >> THANKS, CHRISTINE, SOMETHING I HAVE BEEN STRUCK BY FROM DISCUSSION TODAY IS THIS IDEA OF CONSENT FOR STUDIES YOU PRESUMPTIVELY NOT HAVE THERAPEUTIC BENEFIT AND IDEA CONTINUING CONSENT THROUGHOUT THE STUDY. TRY TO THINK ABOUT HOW DEVELOP GUIDANCE WITH RESPECT TO THAT, WHETHER OR NOT THERE IS A GENERAL TYPE OF GUIDANCE DONE OR IS IT ALL HAVE TO BE SPECIFIC TAILORED TO THE PARTICULAR INDIVIDUAL OR PARTICULAR STUDY. I THINK THAT WOULD BENEFIT THE COMMUNITY PATIENTS AND RESEARCH IN GENERAL. >> GREAT. YOU ARE SUGGESTING WE NEED GUIDANCE AND WE NEED -- THAT MIGHT BE SOMETHING THE NEWG COULD AT LEAST DISCUSS? >> EXACTLY. THERE ARE NUMBER OF THINGS THAT CAN BE DONE TO TRY TO FLUSH THAT OUT A LITTLE BIT. >> GREAT. WINSTON. >> >> IT WAS NINA THAT DISTRIBUTED TALKING AND THINKING POINTS. I AM STRUCK BY THIS ONE ABOUT THE BRINGING INVESTIGATORS TOGETHER PUTTING TOGETHER THESE KINDS OF GUIDELINES AND THINKING A LITTLE BIT ABOUT WHERE RESPONSIBILITY LIES FOR ESTABLISHING STANDARDS, IT IS IMPORTANT THE WAY ASHLEY SAID THESE ARE PRESENTED FOR DISCUSSION. OBVIOUSLY WE NEED INVESTIGATORS TO PARTICIPATE IN THAT DISCUSSION AND BRING THOSE EXPERIENCES. BUT I JUST THOUGHT THE THE WAY NINA POSED THE QUESTION WAS INTERESTING. I DON'T HAVE AN IMMEDIATE RESPONSE TO IT. BUT -- I THINK IT IS NOTEWORTHY THAT THE NEURON PAPER IS PRESENTED BY THE COMMUNITY INVESTIGATORS DOING THE WORK. WHICH I THINK IS WHAT GIVES IT THE POWER AND WHAT MAKES IT SO SIGNIFICANT. BUT AT THE SAME TIME THERE IS A WHOLE BUNCH OF OTHER STAKEHOLDERS THAT OUGHT TO HAVE SOME SAY, IT IS HARD TO KNOW EXACTLY HOW TO OPERATIONALIZE THAT SO FORTH. SO THAT'S SOMETHING THAT YEAH, A PERSON -- OCCURS TO ME AS SOMETHING THAT'S WORTH CONSIDERING FROM OUR PERSPECTIVE, ALSO UNDERSTANDING WE ARE ALSO DEEP INSIDE, AS BEING PART OF FUNDING AGENCY THAT IS FUNDING THIS WORK. HOW TO THINK ABOUT SORT OF BROADER PARTICIPATION, MAYBE PART IS HAVING STUDY AND PUTTING THESE THINGS OUT THERE, AND HAVING MORE OPEN DISCUSSION THAN I THINK IS AVAILABLE BEFORE. >> GREAT. THANK YOU, WINSTON. STEVE. >> THIS I THINK IS A CHALLENGING ONE, BUT I THINK IN SARA AND ASHLEY RAISE THE ISSUE OF PARTICIPANTS AS BOTH SUBJECTS AND OBJECTS, THE REASON IT IS HARD IS BECAUSE EVEN IN ORDINARY CLINICAL MEDICINE EVERYBODY IS BOTH. EVEN ORDINARY CLINICAL MEDICINE IT IS A STANCE THAT IS OFTEN NOT HANDLED WELL. AND WHEN YOU ARE MAKING A DIAGNOSIS AND THINKING OF A PERSON AS A MEMBER OF A CLASS THAT GETS A CERTAIN DRUG OR WHEN YOU ARE PUTTING FINDING THE RIGHT PLACE FOR THE ELECTRODE IN PERSON'S BRAIN THAT ARE OBJECTS. THEN YOU WANT TO SWITCH AND SAY THAT THESE PARTICIPANTS ARE -- WE WANT THOSE AGENTS AS BASICALLY SUBJECT. AND I'M NOT POSITIVE HOW ONE GOES ABOUT IMPROVING THAT -- ANYBODY WHO IS A CLINICIAN HAS SEEN FAILED ATTEMPTS TO TREAT PEOPLE AS SUBJECTS WHICH IS JUST PATRONIZING FOR EXAMPLE. SOMEWHAT DISTANT EXAMPLE. THE REASON I THINK ABOUT THIS, WHEN I WAS NIH DIRECTOR IN THE '90s A LONG TIME AGO, I -- FOR OUR CLINICAL TRIALS AND HEALTH SERVICES PORTFOLIO, I INCLUDED PATIENTS AND ADVOCATES AND FAMILIES AND NUMBER ON STUDY SECTIONS, WITH THE ROLE NOT OF JUDGING STATISTICS BUT WITH THE ROLE OF TALKING ABOUT WHAT MEASURE, WHAT MATTERS TO THEM. WHAT OUTCOMES THEY CARE ABOUT. AND THE DEGREE TO WHICH THE MEMBERS OF THE STUDY SECTION HATED THAT, WAS EXTRAORDINARY, A FEW PEOPLE CAME AROUND. IT WAS THE FIRST THING THAT DISAPPEARED WHEN I HAD LEFT TO GO BACK TO ACADEMIA. SO I THINK WE -- I THINK THAT SARA AND ASHLEY AND OTHERS HAVE HIT ON A REALLY IMPORTANT AND NAUGHTY PROBLEM, HOW WE HAVE BOTH -- BOTH OF THESE MIND SETS, THEY HATE IT SO MUCH BECAUSE HARP THE EXPERTS AND THEY WOULDN'T SAY THIS OUTLOUD, THEY WERE AFRAID THEY WOULD BE TOLD WHAT TO DO AND JUST BECAUSE YOU HAVE THIS LIVED EXPERIENCE DOESN'T MAKE YOU EXPERT BUT RULES ARE I THINK WELL LAID OUT. IN FACT WE LEARNED A LOT. THEY WERE NOT MOST PARTICIPANTS WERE RATHER UNINTERESTED IN THE SYMPTOM REDUCTION SCALES THAT WE USE FOR PHASE 3 TRIALS, THEY WERE INTERESTED IN FUNCTION, WILL I BE ABLE TO GO BACK-TO-SCHOOL, WORK, HOW CAN I BE USEFUL IN SOCIETY. IT'S AN ECHO WHAT WE HEARD HERE AGAIN I DON'T WANT TO GO ON TOO LONG IT IS JUST THAT IF THERE WAS A WAY OF THINKING ABOUT GUIDELINES WORKSHOPS FOR INVESTIGATORS, THIS IS ONE OF THOSE THINGS, IT IS LIKE GRASPING JELL-O. I CAN'T EVEN GIVE YOU PERFECT FORMULATION. BUT IT IS SO IMPORTANT. T SO IMPORTANT HOW THE PARTICIPANTS WILL FEEL. AND ENGAUGE. >> GOOD POINT STEVEN. IN MY OWN MIND THE DIFFERENCE BETWEEN WORKING WITH WORKING WITH SOMEBODY AND LONG TERM INTERACTIVE STUDY SEEING THEM ONCE OR COLLECTING THEIR DATA FROM SECONDARY SOURCE IS VERY DIFFERENT IN TERMS OF HOW WE THINK ABOUT THE -- WHO THEY ARE AND WHAT THE COLLABORATION IS. >> AND ASHLEY JUST MENTIONED THE DISTINCT BETWEEN OBJECTIVE STANCE AND INVOLVED STANCE BUT WHAT I WOULD SAY IS GOOD CLINICIANS SWITCH STANCES NOT WITH CONSCIOUS INTENTION, THEY PICK UP THE SOCIAL SIGNALS AS THEY SWITCH MIND SETS AND TWO ARE PRETTY INCOMPATIBLE I BELIEVE. I THINK THEY WERE DISTINCT WHICH IS WHY IT IS SO CHALLENGING. >> ALL RIGHT. THANK YOU. HANKS. >> I THINK IT MIGHT BE FUN TO TRY TO FIGURE OUT A TAX ON MINI i-- TAXONOMY OF THE ISSUES AND THE TAXONOMY TIED TO DIFFERENT INTERVENTION BUS DIFFERENT KINDS OF THINGS WHETHER IT IS SUPPORT SESSIONS, FOR THE RESEARCH PARTICIPANTS, WHETHER COMPENSATION, WHETHER IT IS RECOGNITION WHETHER SOMETHING ELSE, THAT IS SOMETHING HA COULD BE DONE BY SOMEBODY AMBITIOUS ASSOCIATED WITH NEWG THAT COULD THEN END UP BEING A NEWG DISCUSSED AND POLISHED PAPER WITH COMMENTARY FROM INVESTIGATORS AS WELL. >> AND DO YOU MEAN AS A RESEARCH PROJECT OR AS A DISCUSSION? ITEM? >> I THINK ULTIMATELY AS A PUBLICATION. WHETHER IT IS WHAT DO YOU CALL IT RESEARCH EXACTLY I'M NOT SURE. YES. >> OKAY. I WOULD SAY JUST TWO THINGS THEN TURN TO JOHN FOR FEW CLOSING REMARKS. >> STEVE DID YOU HAVE SOMETHING ELSE TO SAY? >> NO, NO. I WAS READING THE EXCELLENT CHAT COMMENTS. >> A LOT OF GREAT CHAT COMMENTS FOR THOSE WHO HAVEN'T HAD A CHANCE TO LOOK AT THEN, PLEASE DO. I WANT TO FIRST OF ALL THANK THE PANELISTS, ALL FOUR OF THEM. DR. GOERING, DR. FEINSINGER, DR. ZAGHLOUL AND MR. JOHNSON. WE REALLY APPRECIATED YOUR PERSPECTIVES AND YOUR -- THE TIME YOU TOOK TO SHARE YOUR EXPERTISE WITH US. AND SOME OF THE GREAT THINGS YOU RAISED FOR US TO THINK ABOUT. IT DOES SEEM CLEAR TO ME FROM THIS DISCUSSION THAT THERE ARE DISTINCTIONS BETWEEN THESE KINDS OF RESEARCH THAT ARE RELEVANT TO HOW WE THINK ABOUT THEM ETHICALLY AND THAT WE DO NEED TO SORT OF PAY ATTENTION TO THOSE DISTINCTIONS. BUT ACROSS ALL OF THE DISTINCTIONS THERE'S STILL SOME COMMON FEATURES. THERE ARE PEOPLE THAT WE ARE WORKING WITH AND WE NEED TO TREAT THEM RESPECTFULLY, WE NEED TO THINK ABOUT HOW WE GIVE THEM INFORMATION AND HOW THEY CAN OR CANNOT UNDERSTAND IT AND WHETHER OR NOT THEY FEEL LIKE THEY CAN MAKE A CHOICE, WHAT THAT CHOICE IS. HOW WE RECOGNIZE THEM FOR THAT. AND HOW WE TALK TO THEM THROUGHOUT THE ENTIRE STUDY. THEN THERE WERE OTHER THINGS THAT PEOPLE BROUGHT UP THAT WE DIDN'T TALK ABOUT MUCH, TRUST I THINK ASHLEY BROUGHT UP TRUST WHICH IS SUCH AN IMPORTANT ISSUE. SARA BROUGHT UP THE POST TRIAL ISSUES WHICH ARE RELEVANT TO SO MANY OTHER KINDS OF RESEARCH THAT WE DIDN'T TALK ABOUT TODAY. AS I HEARD YOU SAY YOU HAD A WORKSHOP WE ARE HAVING A WORKSHOP, NEWG IS HAVING A WORKSHOP THIS YEAR ON THAT TOPIC TOO SO THERE ARE OTHER ISSUES THAT ARE CIRCULATING IN THE AIR HERE BUT IT WAS A RICH DISCUSSION AND I APPRECIATE ALL THE CONTRIBUTIONS PEOPLE MAKE. NOW I'M GOING TO TURN IT OVER TO JOHN AND TAKE IT FROM THERE. >> THANKS VERY MUCH. I WANT TO ECHO CHRISTINE'S THANKS TO ALL THE PANELISTS HERE. AND EVERYBODY WHO PARTICIPATED IN THIS ILLUMINATING CONVERSATION. MR. JOHNSON WE APPRECIATE YOUR PARTICIPATION IN DR. ANDERSON'S STUDY YOU HELPED ADVANCE THE SCIENCE AND WE ARE APPRECIATIVE OF THAT AND YOUR WILLINGNESS TO GIVE US YOUR PERSPECTIVES. I ALSO THINK ASHLEY AND SARA'S PRESENTATIONS ALSO HIGHLIGHT FOR ME TWO IMPORTANT THINGS THAT WE WILL I THINK HELP US IN THE LONG RUN ADVANCE ALONG SOME OF THESE ISSUES THAT STEVE MENTION AD GRASPING AT JELL-O APTLY. ONE IS EMPIRICAL RESEARCH IMPORTANCE. WE HAVE TO BE DATA DRIVEN UNDERSTAND WHAT THE ISSUES ARE, THE PROBLEMS ARE, BOTTLENECKS BEFORE WE THINK ABOUT SOLUTIONS. THE OTHER PIECE EMBODIED BY THE RESEARCH OPPORTUNITIES HUMANS CONSORTIUM AND ASHLEY DID WONDERFUL PAPER THAT YOU FOLKS PUT TOGETHER, WAS SO CLEARLY FRAMING WHAT THE ISSUES ARE. BUT ALSO COMING UP WITH I THINK SOME VERY REASONABLE -- MORE THAN REASONABLE ACTIONABLE SOLUTIONS. AND I THINK HERE REALLY UNDERSCORES THE POWER OF HAVING THE INVESTIGATORS WHO ARE DOING IT. AND ARE AWARE OF THE ISSUES TO BE COMING UP WITH BEST PRACTICES. WHETHER THESE BECOME GUIDELINES OR NOT, I THINK IT IS ALWAYS BETTER THAT THE FOLKS DOING THE WORK COME UP, IDENTIFY PROBLEMS AND PROPOSE SOLUTIONS RATHER THAN HAVING SOMEBODY TELLS THEM WHAT THE SOLUTION SHOULD BE. SO RATHER THAN BEING PRESCRIPTIVE FROM THE NIH POINT OF VIEW IT IS BETTER IF WE ASSIST INVESTIGATORS AND RESEARCH PARTICIPANTS COME UP WITH SOLUTIONS THAT WILL WORK REALLY WELL, PROTECT INTERESTS OF OUR HUMAN SUBJECTS, HUMAN PARTICIPANTS, WHILE ALSO ADVANCING THE SCIENCE. SO THIS IS GRASPING AT JELL-O, I THIS I ALSO THE PATH TO GETTING FROM POINT A TO B WHERE WE HAVE BEST PRACTICES DEFINED, MAYBE THEY WILL BECOME GUIDELINES OR NOT, THAT IS ALSO MURKY BUT I THINK WITH THIS CORE GROUP OF FOLKS THAT ARE BEING SUPPORTED NOT JUST BY BRAIN BUT ALSO OTHERS SECTORS OF NIH AND OTHER RESEARCH GOING ON, I THINK YOU FOLKS KNOW GOOD PRACTICE WHEN YOU SITE AND ONCE ACCEPTED BY RESEARCH COMMUNITY THE CLINICAL COMMUNITY, I THINK IT WILL BE EASY TO SPREAD THE GOOD WORD GOOD PRACTICE FROM THERE. SO ANYTHING THAT BRAIN CAN DO TO ASSIST CATALYZE THESE DISCUSSIONS TO SUPPORT THEM WHETHER IT BE SUPPORTING CONSORTIA OR WORKSHOPS ENCOURAGING YOU FOLKS TO SIT DOWN AND WRITE ANOTHER SET OF PAPERS, BUT I H I THIS POSITION PAPERS HAVE VERY -- I THINK THIS POSITION PAPERS ARE IMPORTANT IN FRAMING DIRECTING WHERE THE CONVERSATION NEEDS TO BE. THANK YOU ALL FOR A GREAT DISCUSSION. THIS HAS REALLY BEEN ILLUMINATING AT LEAST FOR ME. >> NOW IT IS TIME FOR A BREAK. WELCOME BACK. I'M IN CHARGE OF MODERATING THE LAST COUPLE OF SESSIONS OF TODAY'S MEETING. BUT BEFORE I DO I WANT TO NOTE TWO PERSONAL THINGS. AS -- I WENT BACK AND LOOKED THE FIRST DOCUMENT I CAN FIND IN MY COMPUTER MEMORY THAT HAS NEWG ON IT IS FROM MAY OF 2016. IT REFERS TO A MEETING IN FEBRUARY OF 2016 AND I VAGUELY REMEMBER THERE MAY HAVE BEEN EARLIER TALKS ABOUT FOUNDING OF THE NEWG BACK IN 2015 BUT BASICALLY WE HAVE BEEN AROUND FOR SIX YEARS. PLUS OR MINUS, A LITTLE BIT. ALL THAT TIME STEVE HYMAN HAS BEEN A MEMBER OF THE NEWG. JUST AS STEVE HYMAN HAS BEEN A MEMBER -- A FORCE IN THE MODERN ERA OF NEUROETHICS SINCE IT STARTED, JUST ABOUT 20 YEARS AGO THIS YEAR, I DATED TO THE MAY 2002 DATA FOUNDATION SPONSORED CONFERENCE IN SAN FRANCISCO WHICH STEVE HAD A HUGE ROLE IN. WITH STEVE OVER THE LAST 20 YEARS ON THESE KINDS OF ISSUES AND HE'S BEEN REALLY IMPORTANT FOR THE NEWG. I'M SORRY TO SEE HIM ROTATE OFF. SECONDLY, KHARA RAMOS HAS BEEN PART OF THE NEWG SINCE THE BEGINNING AND PROBABLY ONE OF THE MOST IMPORTANT PARTS OF NEWG IN TERMS OF BEING THE PERSON WHO MADE IT WORK. AND SO I DON'T KNOW -- I HAVEN'T SEEN HER ON THE PARTICIPANT LIST, I DON'T KNOW WHETHER SHE'S LISTING OR NOT, BUT I HOPE SHE'S FEELING GOOD PROVIBRATIONS BEING SENT HER WAY, THIS IS OUR FIRST MEETING WITHOUT HER, AND DOESN'T FEEL THE SAME I'M SURE IT WILL GO -- WE WILL TO GOURD FINE AS I'M SURE SHE WILL GO FORWARD FINE IN HER FUTURE ENDEAVORS BUT AS A PERSONAL LEVEL I WANT TO NOTE MY GREAT APPRECIATION FOR ALL THE WORK SHE'S DONE WITH THE NEUROETHICS WORKING GROUP OF THE MULTI-COUNCIL WORKING GROUP OF THE NIH BRAIN SERVICE MARK INITIATIVE. WHAT HAS THE NEWG DONE? WHAT ARE WE SUPPOSED TO BE TALKING ABOUT IN THE REMAINDER OF TODAY'S MEETING? THAT IS REALLY WHAT WE SHOULD BE DOING GOING FORWARD. WHAT WE SHOULD BE DOING THIS YEAR AND GOING FORWARD AND A LITTLE BIT OF BACKGROUND. SO I HOPE TO SAY VERY LITTLE IN THIS. THIS IS REALLY TO HEAR FROM PEOPLE ON THE NEWG AND OTHERS ON THE CALL. THINGS THAT YOU SHOULD DO, I WANT TO START OUT BY DOING A LITTLE REVIEW ABOUT WHAT WE HAVE DONE. WE PROVIDE INPUT BUT NEVER QUOTE ADVICE CLOSE QUOTE TO BRAIN OFTEN THROUGH THESE MEETINGS VEHICLED GENERALLY TWICE A YEAR. WE PROVIDE INPUT ON THE TEAM AND NEUROETHICS PAY PLAN AND ON NON-NEUROETHICS PLAY PLAN WHEN APPROPRIATE, WE GIVE INPUT ON CONCEPTS WITH ANTICIPATED NEUROETHICS ISSUES, AND INPUT ON APPLICATIONS FOR PROGRAM STAFF, CONSULTATION FOR BRAIN GRANTEES THAT IS ONE THAT I THINK IS MOST INTERESTING WORK AND SOMETHING I WOULD LIKE TO SEE HAPPEN EVEN MORE MORE. WE DO AN ANNUAL PORTFOLIO ANALYSIS OF BRAIN INITIATIVES GRANTS AND HOW HAY MAY HAVE WHERE AND HOW THEY MAY HAVE THEIR NEUROETHICS IMPLICATIONS. WE PUBLISHED AT LEAST FOUR THINGS FOR THE NEWG, POINTS TO CONSIDER FOR THE FIELD OR WE HAVE INFORMED PUBLISHED PIECES, WE CONDUCTED RESEARCH ON RESEARCH WITH NEURAL TISSUE ETHICS WITH INVASIVE AND NON-INVASIVE DEVICES IN HUMANS AN TWO WORKSHOPS COMING OUT THAT HAVE HAD TOPICS IDENTIFY FROM NEWG INPUT WHILE POST TRIAL RESPONSIBILITIES AND ONLINE DATA SHARING BOTH PLAN FOR 2022. ALL THAT IS NICE. ALL THAT IS IN THE PAST OR SOON BE IN THE PAST. THE QUESTION NOW IS WHAT IS NEXT? ON THAT I'M JUST GOING TO OPEN THE FLOOR TO COMMENTS FROM PEOPLE ABOUT WHAT THEY THINK WE SHOULD BE DOING, WE HAVE GOT A SLIDE UP ABOUT SOME OF THE THINGS WE MIGHT THINK ABOUT IF WE ARE TRYING TO DO TAXONOMY FUTURE NEWG ACTIVITIES, WITHIN THAT FRAMEWORK OR OUTSIDE THEM WHAT SHOULD WE BE THINKING ABOUT WHAT SHOULD WE BE WORRYING ABOUT, WHAT DO YOU WANT US TO CONSIDER? THAT IS IS NOT A RHETORICAL QUESTION. KICKING IT OVER TO ANYBODY WHO WANTS TO CONTRIBUTE THROUGH RAISING YOUR YELLOW OR OTHERWISE COLORED HAND. WINSTON. >> YOU ARE MUTEDDED WINSTON. >> TURNED ON THE VIDEO. SOMETHING I THINK WITH CONVERSATIONS ABOUT SCIENCE AND SOCIAL JUSTICE LAST YEAR AND ALSO RELEVANT TO THE CONVERSATION WE WERE JUST HAVING HAS TO DO WITH PUBLIC ENGAGEMENT AND NEUROSCIENCE AND WHAT THAT MIGHT MEAN AND LOOK LIKE. SO I WAS JUST THINKING ABOUT KAREN'S POST ON THE CHAT HAVING TO DO WITH HOW TO ENGAGE WITH DIFFERENT COMMUNE THES THAT ARE AFFECTED BY NEUROSCIENCE AND I THINK IT WOULD BE INTERESTING TO THINK A LITTLE BIT ABOUT WHAT THAT MIGHT LOOK LIKE AND MODELS THAT ENGAGEMENT THAT GO BEYOND COMMUNICATION DISSEMINATION AND THAT GET INTO SOME OF THESE 30 QUESTIONS STEVE WAS TALKING ABOUT BEFORE ABOUT HOW TO INVOLVE, WHAT IS APPROPRIATE TO INVOLVE IN PUBLIC OR PEOPLE AFFECTED BY SCIENTIFIC RESEARCH, INTO AGENDA SETTING AND INTO THINKING ABOUT THESE ETHICAL QUESTIONS. >> ANY PARTICULAR THOUGHTS ABOUT HOW TO GO ABOUT THAT SET OF QUESTIONS? >> IT WAS KIND OF HOPING THAT I WOULD BE SERVING SOMETHING UP FOR KAREN TO RESPOND TO BUT I DIDN'T WANT TO PUT HER ON THE SPOT, SHE'S PROBABLY THE PERSON WHO I THINK OF HAS THOUGHT DEEPLY ABOUT THESE ISSUES. THESE MODELS ABOUT COMMUNITY ADVISORY BOARDS OR SOMETHING WE TRYING TO INCORPORATE TO OUR WORK THOUGH I'LL SHARE THAT I THINK IT HAS BEEN TRICKY TO THINK HOW THIS REALLY FITS IN, AND SOME IS WITHIN NIH AND MORE BROADLY YOU HAVE MORE INVESTIGATOR INITIATED RESEARCH. I THINK EVEN THINKING ABOUT HOW TO FIT IN COMMUNITY PARTICIPANT PERSPECTIVES INTO AGENDA SETTING RESEARCH CAN BE CHALLENGING IN TERMS OF HOW TO GENUINELY DO THAT WITHIN THE INVESTIGATOR INITIATED MODEL THAT WE HAVE. >> OKAY. WE'LL LEAVE OPEN POSSIBILITY OF KAREN'S YELLOW HAND OR OTHERWISE COLORED HAND GOING UP BUT NOT SEEING IT RIGHT NOW. >> SORRY. I HAD EYE SURGERY SO I CAN'T REALLY SEE. I THINK ONE OF THE THINGS THAT ACTUALLY HAD A LITTLE BIT OF A CHAT WITH YASMEEN WHO HAS PARTICIPATED IN ALL OF US WORK AND I THINK ALL OF US IS BROUGHT UP SEVERAL TIMES IN THINKING ABOUT HOW TO -- THAT ARE ENGAGED IN COMMUNITY OF PARTICIPANTS AND FAMILIES AND THEIR ADVOCATES, FAMILY ADVOCATES AND INDIVIDUALS WHO LIVE, HAVE THESE LIVED EXPERIENCES TO SHARE. RIGHT NOW IT SEEMS LIKE WE RELY ENTIRELY -- NOT ENTIRELY, BUT A LOT ON OUR NEUROETHICS RESEARCHERS TO BRING US THESE INSIGHTS FROM THE PARTICIPANTS, WHICH IS REALLY GREAT BECAUSE THEY CERTAINLY OFFER A IMPORTANT FILTER IN SKILL SET, SYNTHESIZING THAT INFORMATION. I WONDER AS WE TRY TO ASSIST IN DEVELOPING GUIDANCE IF WE MIGHT CREATE SOME STRONGER MORE SUSTAINABLE IMPACTFUL TYPES OF GUIDANCE IF WE SYSTEMATICALLY ENGAGE SYSTEM OF THOSE GROUPS AND PLUG INTO WHAT ALREADY KISSES AND CARVE OUT SOMETHING FOR ALL OF US, I DON'T UNDERSTAND ALL THE COMPONENTS BUT PEOPLE AT NIH WHO COULD HELP. THE OTHER BIGGER QUESTION BEFORE JOINING PUBLIC ENGAGEMENT EXERCISE OR EXITING TO THEM WOULD BE WHETHER BRAIN, I BROUGHT THIS UP BEFORE IS INTERESTED IN THE POSSIBILITY OF HEARING CURRENT NARRATIVES WHAT THEY ARE ALREADY DOING. THERE MAYBE TRUE OPENNESS TO THAT, THERE MAYBE OPENNESS TO PARTS OF IT VERSUS OTHERS. I DON'T THINK WE CAN -- WITH AUTHENTICALLY DO A PUBLIC ENGAGEMENT EXERCISE THAT IS DEFINED BY -- AS STATE OF THE ART AS BIDIRECTIONAL COMMUNICATION AT MINIMUM. WITHOUT BEING ANSWER TO THAT FIRST AND I DON'T KNOW IF WE PLAN TO HAVE THAT CONVERSATION NOW OR IN THE FUTURE. >> INTERESTING, KAREN, DO YOU HAVE AN EXAMPLE OF COUNTER NARRATIVE THAT YOU THINK MIGHT BE PARTICULARLY USEFUL? >> THE RESEARCH MAYBE THE WAY IT'SING THBEING DONE IS NOT ACCEPTABLE. MAYBE PARTICIPANTS DON'T THINK THAT RESEARCH SHOULD HAPPEN, DON'T THINK A CERTAIN USE IS ACCEPTABLE, SOMETHING THAT FEELS IMPRACTICAL TO SCIENTIST BUT FEELS NECESSARY FOR PARTICIPANTS. >> DO YOU HAVE SPECIFIC EXAMPLES OF SOMETHING THAT MIGHT FALL INTO THAT CATEGORY. MAYBE SOME ORGANOID RESEARCH WOULD LEAD TO COUNTER EXAMPLES, THROUGH SOME CHIMERA RESEARCH? >> I GUESS I'M THINKING MORE SPECIFICALLY ABOUT -- THE CASES IT SEEMED SENSITIVE IS WITH HUMAN PARTICIPANTS STUDIES. AND GETTING PERSPECTIVES ON WAYS IN WHICH THAT FROM DETAILS WE HAVE HEARD FROM RESEARCHERS LIKE SARA AND ASHLEY IF THERE ARE CERTAIN THINGS WE HEAR WE ARE WILLING TO UPDATE ADJUST IN OUR PRACTICES ARE WE WILLING DO HEAR FOR EXAMPLE, WE TALKED ABOUT VALUE PROPOSITION AND COMPENSATION AND ARE WE WILLING TO LISTEN TO AND INTEGRATE VARIETY OF PERSPECTIVES AN LIVED EXPERIENCES THAT DETERMINE PROPORTION OF RISK OF THOSE INDIVIDUALS. >> STEVE. >> I HAVE TWO THINGS AND BY THE WAY THEY POINT TO THE FACT THAT REALLY TIME FOR ME TO MOVE ON BECAUSE I PERSEVERATE ON SOME OF THESE THINGS. BUT ONE IS PREDICTION. THERE ARE NOW SEVERAL COMPANIES THAT ARE OFFERING TO USE POLYGENIC SCORES FOR EDUCATIONAL ATTAINMENT OR COGNITIVE ABILITY, SO NOT JUST DISEASE RISK LIKE TYPE TWO DIABETES BUT COGNITIVE ABILITY FOR EMBRYO SELECTION, PEOPLE WHO UNDERGO IVF AND THERE IS A COMPANY BASED AT STANFORD CALLED ORCHID THAT WANTS TO EXTEND THESE APPROACHES WE ALL KNOW THAT THERE ARE AD ROW VOW KATES FOR POLYGENIC SCORES FOR COGNITIVE ABILITY, PERSONALIZED EDUCATION BUT OLD DAYS CALLED TRACK AND IT WASN'T A VERY GOOD THING. AND WHILE THIS IS REALLY MORE GENETICS WHEEL HOUSE, WE IMAGINE INTEGRATING DATA TYPES AND IMAGINE INTEGRATING POLYGENIC SCORES WITH ADVANCED NEUROIMAGING TECHNOLOGIES, OR WHAT WE ARE GOING TO LEARN FROM SINGLE CELL ATLASES. AND YOU CAN IMAGINE PRETTY POWERFUL PREDICTIVE MECHANISMS WHICH COULD LEAD TO PROBLEMATIC -- THEY -- IT LEADS VERY GOOD THINGS, RIGHT, WITH RESPECT TO PREVENTION OF DISEASE BUT THEY CAN ALSO LEAD TO FORECLOSING PEOPLE'S OPPORTUNITIES AND SOCIETY TRAGICALLY OFTEN TIPS TOWARD THE LATTER. SO I THINK THIS IDEA OF PREDICTION IS IMPORTANT. THE OTHER ONE IS UNDER THE FOR ME THE SUBJECT TO IT OF WE LIKE TO MEASURE THE WRONG THINGS VERY, VERY WELL. BECAUSE THEY ARE EASILY MEASURED. IN MEDICINE IN NEUROLOGY AND PSYCHIATRY, IN NEUROSURGERY WE NOW ARE WHAT WE CAN MEASURE JUST TAKE METAPHOR REFLEXES THOSE ARE EASY TO MEASURE. BUT WE DON'T LIKE TO TO MEASURE THINGS LIKE -- WHAT IS AT THE TOP OF THE LIST THAT CHRISTINE GAVE OUT CAME FROM BRAIN 2.0 REPORT WHICH ARE THINGS LIKE PERSON HOOD IDENTITY AGENCY MORAL AGENCY AND AUTONOMY. THESE CONCEPTS OFTEN FEEL FOREIGN TO BRAIN SCIENTISTS AND CLINICAL INVESTIGATORS BUT IN FACT MAYBE AS A RESULT WE DON'T SPEND ENOUGH TIME ON. AND THEY DO HAVE PRACTICAL IMPLICATION, THINGS LIKE ADVANCE DIRECTIVES. OR LEGAL CULPABILITY UNDER NARROW CIRCUMSTANCES THAT NEED IT DESCRIBED TO US BECAUSE SHE'S STUDIED NEUROSCIENCE AND THE LAW. OR THE QUESTION OF AUTONOMY OR WHAT IS NOW APPEARING MORE AND MORE IN THE NEWSPAPERS EXPLAINING AWAY WELL PUBLICIZED NEGATIVE BEHAVIORS OR CRIMES BASED ON MENTAL ILLNESS, THIS IS MAKING A COME BACK. I THINK ALL OF THESE THOUGH THEY TEND TO BE OUT OF THE WHEEL HOUSE OF NEUROBIOLOGY ARE GOING TO BE VERY IMPORTANT -- HAVE VERY IMPORTANT IMPLICATIONS AGAIN FROM BOSS BASIC SIDE OF THE BRAIN BUT ALSO FROM THE KINDS OF INTERVENTIONS THAT WE HEARD ABOUT TODAY AND THAT WE HEARD REFLECTIONS ON FROM ASHLEY AND SARA. SO THOSE WOULD BE MY SUGGESTIONS, NOT TO -- ESPECIALLY PREDICTION AND OTHER GROUPS OF IDEAS SHOULDN'T SLIP AWAY AND BE IGNORED. >> I DO WANT TO PUSH BAGGEN THE IDEA THAT ORCHID IS BASED OUT OF STANFORD THOUGH -- >> I DID THAT FOR YOU, HANK. >> I KNOW YOU DID. BUT ACTUALLY YOU TOUCHED A NERVE YOU MAY NOT HAVE REALIZED YOU WERE GOING TO HIT, IT'S FOUNDER WAS ACTUALLY A -- AS A SOPHOMORE WAS A STUDENT IN MY LAW AND BIOSCIENCES SEMINAR WHERE SHE EITHER -- SHE SEEMED AT THE TIME TO DO WELL THOUGH IN RETROSPECT I'M NOT SURE I GAVE HER THE RIGHT GRADE BUT I DO THINK THE PREDICTION STUFF IS IMPORTANT AND THOUGH BRAIN HAS NOT BEEN -- HAS NOT FOCUSED ON GENETIC ISSUES SUBSTANTIALLY, THE PREDICTION INVOLVES ALL SORTS OF THINGS THAT GO FAR BEYOND GENETICS FROM STRUCTURAL AND FUNCTIONAL SORTS OF MEASURES, BIOMARKERS, MEASURES, ALL SORTS OF THINGS. >> INTEGRATION ALSO MULTIPLE DATA TYPES THAT WILL MAKE IT SO POWERFUL. >> YEAH. CHRISTINE. >> SO I WANTED TO PICK UP ON ACTUALLY BOTH WHAT WINSTON AND KAREN WERE TALKING ABOUT AND A LITTLE BIT WHAT STEVE WAS TALKING ABOUT SO IN TERMS OF THE PUBLIC ENGAGEMENT AND INVOLVING PARTICIPANTS, I THINK THERE'S TWO REALLY IMPORTANT WAYS THE PUBLIC CAN BE ENGAGED. ONE IS ENGAGING MEMBERS OF PUBLIC ARE NOT NECESSARILY PARTICIPANTS IN STUDIES BUT HAVE VIEWS HOW RESEARCH OUGHT TO GO AND MIGHT WANT TO UNDERSTAND WHAT RESEARCH IS ALL ABOUT. THERE'S SOME REALLY INTERESTING MODELS OF DEMOCRATIC DELIBERATION AND OTHER KINDS OF EXERCISES TO ENGAGE GENERAL MEMBERS OF THE PUBLIC IN UNDERSTANDING KINDS OF SCIENCE AND THE VALUE OF CERTAIN SCIENCE AND SORT OF PITFALLS OF CERTAIN SCIENCE, SO HA IS A REALLY INTERESTING WAY THE GO. I ALSO THINK IT IS VERY DIFFERENT THAN THE IDEA OF BRINGING PEOPLE IN TO THE SYSTEM. ANOTHER MODEL THAT MIGHT BE WORTH LOOKING AT OR THINKING ABOUT IS THE HIV MODEL, WHERE I SORT OF GREW UP AND THERE ARE IN THAT RESEARCH ENTERPRISE, THERE ARE VERY ACTIVE CABS, MEMBERS OF THE COMMUNITY ON SCIENTIFIC REVIEW BOARDS, PLANNING BOARDS, ON -- AT EVERY LEVEL SO THEY HELP IN THE PRIORITY SETTING, IN THE DESIGN, IN THE EXECUTION OF RESEARCH, THAT IS A VERY UNIQUE MODEL THAT IS WORTH AT LEAST THINKING ABOUT IN THIS CONTEXT. I THINK KAREN'S VIEW THOUGH IS WHAT -- KAREN'S CAUTION ABOUT WHAT ARE WE WILLING TO DO HERE, DO WE WANT VERY IMPORTANT THING TO KEEP IN MIND. WITH RESPECT TO WHAT STEVE SAID ABOUT PREDICTION, I THINK IT RAISES ALSO A WHOLE SET OF OTHER QUESTIONS LIKE USE OF NEUROSCIENCE OUTSIDE OF THE CLINIC. YOU SAID EDUCATION AND OTHER AREAS OF LIFE WHERE SOME OF THE FINDINGS THAT MIGHT BE COMING FROM THE STUDIES THAT BRAIN IS DOING OR THINKING OF DOING IN THE FUTURE COULD BE USED BOTH INTEGRATE WITH OTHER DATA AND NOT, TO MAKE DECISIONS OUTSIDE OF THE CLINIC. SO THE QUESTION, HOW MUCH DOES BRAIN GET INVOLVED WITH THOSE KINDS OF DECISIONS. AND INTERESTK IDEA OF O IN THIS WHOLE WORLD OF PREDICTION, HOW MUCH PUBLIC ENGAGEMENT MIGHT BE USEFUL THERE TO SORT OF THINK ABOUT LIMITS ON THOSE PREDICTIVE ALGORITHMS IF LIMITS ARE ON THE TABLE. AND ONE LAST THING. STEVE MENTIONED WE DON'T DO WELL MEASURING AGENCY AND AUTONOMY IN THOSE ISSUES. I AGREE, STEVE, WE DON'T AND I HAVE IMPRESSED BY SARA'S STUDY WHERE SHE PART OF WHAT THEY ARE TRYING TO DO IS UNDERSTAND AGENCY SO FUND MORGUE RESEARCH LIKE THAT, THAT CAN HELP US REALLY DELVE INTO SOME OF THOSE COMPLICATED CONCEPTS AND PHENOMENON AND UNDERSTAND THEM FROM PERSPECTIVE OF PEOPLE WE ARE WORKING WITH, IS A REALLY VALUABLE WAY TO GO FORWARD. >> SO I DO THINK SOME OF WHAT STEVE BROUGHT UP RAISES A DEEP QUESTION ABOUT THE NEWG AND THAT IS ARE WE LOOKING, IT HAS BEEN CLEAR WE ARE NOT A GENERAL NEUROETHICS GROUP. WE ARE GIVING INPUT TO THE BRAIN INITIATIVE. WE ARE PART OF THE BRAIN INITIATIVE, ARE WE LIMITED TO ONLY THINGS THAT THE BRAIN INITIATIVE DOES. THAT ARE DIRECTLY AFFECTED OR SOMEWHAT INDIRECTLY AFFECTED BY THE BRAIN INITIATIVE. IT IS AN IMPORTANT QUESTION GOING FORWARD. HOW CLOSE THE NEWG NEEDS TO BE TIED TO THE BRAIN INITIATIVE WHICH HASN'T BEEN DOING A LOT OF THIS PREDICTIVE WORK THOUGH I SUSPECT THERE IS SOME OUT THERE. BUT CERTAINLY THE TOOLS THE BRAIN INITIATIVE IS WORKING ON COULD PLAY A ROLE IN SOME OF THAT. I WOULD SAY STEVE ALSO IT IS NOT JUST PREDICTIVE BUT EARLY DIAGNOSTIC. SO THINGS LIKE BLOOD SERUM BIOMARKERS FOR ALZHEIMER'S DISEASE ALSO HAVE SUBSTANTIAL EFFECTS IF THEY BECOME VALIDATE AND WIDELY AVAILABLE. IT IS SOMETHING THE NEWG SHOULD BE TAKING ON OR NOT, THE QUESTION ABOVE MY PAY GRADE. >> I'M MORE CONCERNED ABOUT THE NON-MEDICAL. I THINK WHEN IT WAS POSSIBLE TO PREDICT HUNTINGTON'S DISEASE BEGINNING AROUND 1990, SOME OF THE QUESTIONS LIKE SERUM -- AN EASIER SERUM TEST FOR ALZHEIMER RISK STARTED TO GET RAISED BUT I DO THINK -- I THINK SOME OF THE IMAGING TECHNOLOGIES THAT HAVE AT LEAST BEEN FACILITATED BY BRAIN HAVE BEEN -- HAVE REASONABLE CORRELATIONS WITH COGNITIVE ABILITIES AND PUNITIVELY WITH IQ. I HAVEN'T READ THAT LETTER CAREFULLY. AGAIN, EVEN THOUGH BRAIN ISN'T DOING THE KIND OF POPULATION GENETICS CERTAINLY THE GENETICS OF COGNITIVE ABILITY AND PUNITIVELY OF EDUCATIONAL ATTAINMENT IF INTEGRATED WITH SOME OF THAT IMAGING WORK AND POTENTIALLY SINGLE CELL WORK WHICH WE WILL GET TO IN BIOLOGY, I THINK IF NOT THE NEWG THEN WHO. SOMEBODY SHOULD BE TAKING THIS UP FROM A VERY SOPHISTICATED POINT OF VIEW. AND NOT JUST TRASH ALL OF IT AHEAD OF TIME BUT TO UNDERSTAND WHAT ACTUALLY HOW GOOD IS PREDICTION AND ALSO HOW PROBABILISTIC AND WHAT ARE -- AND IF YOU APPLY THAT TO POLICIES OUTSIDE OF MEDICINE, WHAT -- ARE THERE BENEFITS? I ALWAYS SEE THE RISKS BUT YOU KNOW, THERE MAYBE BENEFITS AS WELL. >> SO I THINK THE ORDER THE HANDS WENT UP A LITTLE DIFFERENTLY THE WAY THEY DISPLAYED ON MY SCREEN. NITA NEXT THEN CHRISTINE, JOHN AN JIM. >> THANKS, HANK. SO I WANT TO COMMENT ON KIND OF WHERE I HOPE WE GO IN THREE DIFFERENT WAYS. ONE IS TOPICALLY WHICH IS I DO THINK LOOKING AT AREAS OF INTERSECTION WITH NEUROETHICS INCLUDING GENETICS BUT ALSO ARTIFICIAL INTELLIGENCE, IS AN AREA REALLY VALUABLE FOR US TO MOVE INTO, THERE'S SO MANY ISSUES THAT OVERLAP THAT WE HAVEN'T REALLY TOUCHED UPON. I ALSO WOULD LIKE FOR US TO FOCUS MORE ON MISINFORMATION BOTH AT EFFECT ON BRAIN BUT ALSO HOW MISINFORMATION SPREADS, MISINFORMATION IN AGE OF COVID, WHAT WE MIGHT BE ABLE TO DO IN ASSISTING WITH THAT, WHICH BRINGS ME TO SOME WHAT I HOPE WE DO, PART I HOPE WE HOLD MORE WORKSHOPS, THAT WOULD BE TANGIBLE WORKSHOPS FOR PEOPLE WHO ARE INVESTIGATORS IN THE BRAIN AND OTHERS AND THAT INCLUDE THINGS LIKE SCIENCE COMMUNICATION WORKSHOPS. I'M VERY IMPRESSED WITH PROJECT HALO ENGAGEMENT TRAINING SCIENCETISES TO DEVELOP TIKTOK VIDEOS TO SPREAD INFORMATION TO COMBAT MISINFORMATION AND I WOULD LOVE FOR US TO SEE, LOVE TO SEE US ENGAGED IN MORE SKILLS BASED WORKSHOPS. WHICH INCLUDES STRATEGIES FOR INTEGRATION OF ETHICS INTO RESEARCH PROGRAMS. HOW -- WHAT ARE DIFFERENT MODELS THAT RESEARCH TEAMS USE, WHAT REQUEST THAT LOOK LIKE FOR REAL WORLD INTEGRATION. ALSO THINGS LIKE HOW TO UNDERTAKE A GOOD PROCESS DEMOCRATIC DELIBERATION. WHAT ARE GOOD MODELS FOR DEMOCRATIC DELIBERATION SO THINGS THAT ARE THE TEACHING ROLE IN SOME WAYS, A BIDIRECTIONAL CONVERSATION IN OTHER WAYS. THINGS THAT COULD ALLOW US TO REALLY BE ABLE TO BE ABLE TO PROVIDE MORE OF A SERVICE AND PRO SEAL DO YOU RECALLLY I HOPE THERE'S SOME THINGS THAT PAST EXPERIENCES WE START TO SHORE UP LIKE ONE OF THEM IS I THINK ETHICS CONSULTATIONS HAVE TAKEN DIFFERENT FORMS OVER TIME NEWG IS CONSTITUTED, LOVE FOR US TO COME UP WITH WHAT IS MEANT BY ETHICS CONSUL STATION, WHAT IS THE GOAL, WHAT IS THE PRODUCT EXPECTED. WHAT DOES THE PROCEDURE LOOK LIKE AND FOLLOWING THROUGH ON PRODUCTS IF WE ARE GOING TO PROVIDE ADVICE AND COUNCIL, I KNOW WE DON'T TECHNICALLY, IS THERE A MEMO WRITE UP, IS THERE GOING TO BE WHAT WHAT IS T IT THAT INVESTIGATORS HOPE FOR OR EXPLAIN. I ALSO WOULD LIKE PROCEDURALLY FOR US TO BE MORE ENGAGED WITH OTHER GROUPS THAT ARE DOING NEUROETHICS. SO IF FOR EXAMPLE WE DO SKILLS BASED WORKSHOP, WORKING WITH OTHERS WHO ARE DOING THE SAME, WORKING MORE EXPLICITLY WITH IEEE AS THEY ARE DEVELOPING THEIR GUIDELINES WORKING MORE EXCLUSIVELY WITH THE INTERNATIONAL NEUROETHICS SOCIETY, WITH OTHER ORGANIZATIONS THAT ARE UNDERTAKING THESE SIMILAR IDEAS TO REACH OUT AND BE PART OF INNER TRADITIONAL COMMUNITIES THAT IS OUT THERE. THOSE ARE SOME OF THE THINGS WE HOPE WE'LL DO AS NEWG AS WE MOVE FORWARDS. >> THANK YOU. JOHN. >> I SEE JIM AND KAREN HAD THEIR HANDS UP, IF YOU ALLOW ME TO HAVE THE LAST WORD THAT WOULD BE FINE. >> I'LL ALLOW YOU TO HAVE AT LEAST THE NEXT TO LAST WORD BUT MAY KEEP THE LAST WORD FOR MYSELF. >> THANKS, HANK. THREE POINTS THAT I WANT TO COMMENT ON COUPLE HAVE BEEN MENTIONED BY OTHERS. ONE IS SEVERAL THINGS DISCUSSED TODAY. WE ARE PART OF NEUROETHICS REPORT THAT CAME OUT ABOUT A YEAR AND A HALF AGO NOW SO THERE IS SOME BACKGROUND WITH ASPECT OF THAT, THAT DRIVE ASPECTS OF THIS. ONE IMPORTANT THING THAT CAME OUT OF THAT REPORT WAS IDEA OF CONSCIOUSNESS. AND I DO THINK ONE CAN THINK ABOUT NEWG BEING MORE INVOLVED IN DOING WHAT THE BRAIN ANYWHERETIVE HAS DONE SO WELL IN THE PAST. ONE REASON THE SINGLE CELL INITIATIVE AND OTHER COMPONENTS OF THE WORKING GROUP EFFORTS HAVE WORKED IS BECAUSE IT ENGAGED PEOPLE FROM DIFFERENT DISCLINES AND CHEMISTS ENGINEERS MOLECULAR BIOLOGISTS. AND I THINK THE NEWG COULD POTENTIALLY DO A WORKSHOP OR SPONSOR GROUP OF SCIENTIST TALK ABOUT CONSCIOUSNESS FROM BIOLOGICAL PERSPECTIVE TO ETHICAL PERSPECTIVE PHILOSOPHICAL PERSPECTIVE AND TRY TO COME TO SOME IDEA ABOUT HOW TO APPROACH THIS IDEA FROM ETHICAL AND POTENTIALLY SCIENTIFIC PERSPECTIVE TO HELP MAYBE GIVE GUIDANCE TO MULTI-COUNCIL WORKING GROUP SO I THINK THERE IS ROOM FOR DOING THAT. ONE OTHER THING THAT'S PROBLEMATIC IN THIS SORT OF GOES STEVE'S COMMENTS IN OFFHAND WAY, IS ONE OF THE ISSUES WITH HUMAN STUDIES PARTICULARLY IN BRAIN IS POWER. HOW MANY SUBJECTS PATIENTS USED TO GENERATE DATA PEOPLE ARE CLAIMING TO HAVE GENERATE SOD THIS IS WHERE THE IDEA USING DIFFERENT TAPES OF DATA SETS MAYBE VERY IMPORTANT. MAYBE I CAN DECREASE POWER WITH MULTIPLE DATA SETS THAT ARE WORKING TOGETHER TO INFORM POTENTIAL TYPE OF OUTCOME. SO I DO THINK THAT SOME DISCUSSION AND WORK RELATED TO HOW TO THINK ABOUT HOW TO GET HARD CORE DATA THAT GUIDES ETHICAL DISCUSSIONS AND MOVE ETHICAL CONSULTATION FORWARD WOULD BE USEFUL SO THERE'S INNER MIXING THAT WOULD BE IMPORTANT. FINALLY NITA MENTIONED THIS IDEA OF WORKING WITH OTHER GROUPS, AND I WANTED TO AGREE PARTICULARLY WITH RESPECT TO THE INTERNATIONAL COMMUNITY, HOW KAREN'S LED AN EFFORT IN THIS, OR BEEN INVOLVED IN EFFORT IN THIS FOR THE LAST FEW YEARS. I DO THINK THAT IF THE NEWG WERE MAYBE TO HAVE ONE MEETING A YEAR, NOT OUR STANDARD -- BUT ADDITIONAL MEETING A YEAR, PERHAPS WHERE INTERNATIONAL COMMUNITY AND INTERNATIONAL BRAIN GROUPS GET TOGETHER DISCUSS FOR AN AFTERNOON OR DAY THINGS THEY ARE WORKING ON TO SEE IF THERE MIGHT BE POTENTIAL INTERACTIONS OR COLLABORATION TO COME FROM THAT, WE CAN CERTAINLY LEARN FROM EACH OTHER AND I THINK CODIFY THAT INTO POTENTIAL MEETING AT LEAST ONCE A YEAR MIGHT BE USEFUL. SO THOSE ARE THE THINGS I WANT TO HIGHLIGHT. >> THANKS, JIM. THE INTERNATIONAL MEETING IS INTRIGUING, NOT JUST NATIONAL OR REGIONALLY ORGANIZED PRODUCTS REVOLUTIONIZED OR GROUP THINGS LIKE IEEE OR OECD WHICH ARE PARTICULAR NATIONAL BRAIN PROJECTS BUT IT MIGHT BE FUN TO HOST -- VIRTUALLY HOST, A MEETING OF LOTS OF DIFFERENT PARTICIPANTS. SO REPRESENTATIVES OF LOTS OF DIFFERENT GROUPS. KAREN. >> I REALLY LIKED ESPECIALLY NITA'S AND JIMS COMMENTS, SEEMS LIKE -- AND I LIKE THE SKILLS BASED WORKSHOPS, I LIKE THE IDEA OF BEING INTENTIONAL ABOUT ETHICS CONSULTATIONS AND ALSO HOW WE ENGAGE WITH OTHER GROUPS AND WONDER IF IT MIGHT BE A GOOD FILE TO DO A SELF-ASSESSMENT NOT SURE WE HAVE TO SEE HOW WELL WE DELIVERED ON WHAT WE SAID WE WOULD DO AND ALSO IF WE HAVE CHANGE GOALS AND METRICS WE CAN USE, WE KEEP TALKING ABOUT HOW EVERYONE ELSE NEEDS TO BE EMPIRICAL AND MIGHT BE WORTH DOING A ROUGH SKETCH OF HOW WE HAVE BEEN DOING. MAYBE HAVE MORE INFORMED APPROACH HOW TO BE MORE IMPACTFUL LATER OR AREAS WE HAVE IMPACTFUL AND IMMEDIATE TO KEEP GOING. I DON'T KNOW P ANYONE IS COLLECTING THAT INFORMATION OR IF SOME OF THAT IS HAPPENING OFFLINE. ALSO WANT TO REITERATE WHAT JIM SAID ABOUT CONNECTING AND NITA TOO WITH THE BROAD COMMUNITY, A LOT OF THINGS THAT WERE PROPOSED LIKE SKILLS BASED WORKSHOPS AND NEUROETHICS EDUCATION, THERE'S SEVERAL GROUPS WHO BUILT THAT AND ARE COLLABORATING TOGETHER LIKE EBRO AND HPB AND INS RECENTLY SOME CONNECTIONS TO THAT WITH THE BOARD THERE. AND ALSO AS FAR AS ENGAGEMENT PIECES HBP HAS VERY ELABORATE PROCESS THEY WOULD I'M SURE BE WILLING TO SHARE. THEN THERE ARE TWO BROADER LANDSCAPE QUESTIONS THAT I HAVE WONDERED, WHETHER WE WANT TO BE PART OF AND ONE IS LECD, MENTIONED BY HANK, IT IS IMPLEMENTATION OF NEURAL RESPONSIBLE RECOMMENDATION ON RESPONSIBLE INNOVATION AND NEURAL TECHNOLOGY WHICH IS A LEGAL INSTRUMENT DECEMBER 2019 AND NOW ALL MEMBER COUNTRY ALSO HAVE TO REPORT BACK BY 2024 HOW THAW IMPLEMENTED THAT. IT MIGHT BE INTERESTING FOR US TO BE PART OF THAT CONVERSATION OR THINKING ABOUT AREAS OF ALIGNMENT FOR HOW WE CAN IMPLEMENT WITHIN BRAIN, AND THEN THE OTHER IS EVEN WITH THE DATA SHARING PIECE THAT WAS MENTIONED E BRAINS THIS MORNING PARTICIPATED IN EXPERT CONSULTATION ON ITS VISION HOW THEY PLAN TO DEVELOP STRATEGY FOR THAT VISION LATER AND MAYBE THAT'S SOMETHING WE SHOULD ALSO BE CONSIDERING. BUT I THINK IT MATTERS FROM PIR SPECKTIVE OF BRAIN BECAUSE WE AREN'T DECISION MAKERS IN OUR GROUP HERE, WHAT WE SHOULD BE DOING AND IF THAT WOULD BE -- WOULD EVEN ENGAGING IN THE BROADER COMMUNITY LIKE THAT BE PART OF A SUCCESS METRIC FOR US OR IS THAT GOING TO DIFFUSE OUR EFFORTS TOO MUCH AND THERE'S A LOT OF SPECIFIC THINGS TO DO TOO. SO IT WOULD BE GOOD IF -- DOES HAVE THE SECOND TO LAST WORD TO ELABORATE. >> GREAT SEGUE LAST PART IN PARTICULAR, OVER TO JOHN. >> APPRECIATE ALL THESE COMMENTS AND THOUGHTS. MANY -- ACTUALLY ALL RESONATE DEEPLY WITH ME. IN THINKING BIG PICTURE ISSUES, THEY HAVE ALL BEEN MENTIONED TOP OF MY LIST WAS THE ISSUE OF AGENCY, WE HAVE BEEN TALKING ABOUT THAT FOR A WHILE. UNLIKE OTHER INTERVENTION IN HUMANS ONCE YOU START MODULATING OR PLAYING WITH PERSON -- A PERSON'S BRAIN YOU ARE ACTUALLY RUNNING REAL RISK NOT JUST IMAGINARY RISK OF INTERFERING OR CHANGING THEIR AGENCY AND THEIR AUTONOMY SO THAT IS A BIG ONE. WE TALKED ABOUT DATA USE AND DATA MISUSE WHICH ALSO TOUCHES ON PRIVACY ISSUES THAT -- I HOPE WE WILL GET TO WORKSHOP OF OUR OWN ON THAT AND THESE ARE WORKSHOPS BUBBLING UP ELSEWHERE. A BIG ISSUE WE HAVE BEEN GRAPPLING WITH TOGETHER WITH REST OF THE WORLD ARE ISSUES OF EQUITY AND ACCESS AND ENGAGEMENT AND DOING BETTER JOB ENGAGEMENT UNDERSTANDING NOT JUST WITH WHOM TO ENGAGE BUT HOW TO ENGAGE WILL BE VERY, VERY IMPORTANT. SO I THINK THE NEWG CAN HELP PLAY -- CONTINUE TO PLAY A ROLE IN ADDRESSING ISSUES LIKE THAT. ONE THING I JUST WANT TO BRING THIS BACK TO AND I WILL COME BACK TO THE LAST YEAR AS AN EXAMPLE OF THIS, IS THAT BRAIN IS SMALL. BRAIN IS TINY IN COMPARISON TO THE REST OF NIH AND EVEN SMALL IN COMPARISON TO REST OF NEUROSCIENCE COMMUNITY FUNDED RESEARCH BY NIH. BUT WE ARE DOING THINGS IF NOT AT CUT EDGE OFTENTIMES THE LEADING EDGE, AS WE GET INTO MANY ISSUES HERE TODAY WE DO NEED TO BE CAREFUL AND BE AHEAD OF THE GAME ON THIS, IN TERMS OF NEWG REMIT OF NEWG IS TO ADVISE BRAIN IN THESE AREAS. AND I WILL BE FIRM ON THAT. THAT'S NOT TO SAY THAT BRAIN AND NEWG AND THEREFORE BRAIN CANNOT HAVE MUCH LARGER OUTSIDE SIZED IMPACT ON REST OF THE FIELD. WE ARE SEEING THAT ALREADY. WE HAVE PLENTY OF THINGS TO WORRY ABOUT THAT ARE AT THE LEADING EDGE THAT WE SHOULD STAY FOCUSED ON THAT WILL IN FACT HELP GENERAL FIELD OF NEUROSCIENCE AND HUMAN NEUROSCIENCE RESEARCH AS WELL AS BIOMEDICAL RESEARCH IN GENERAL I WOULD THINK. AND I JUST WANT TO BRING UP TWO EXAMPLES THAT I WORK QUITE WELL THAT BENEFITED ME AS DIRECTOR, THE PROGRAM IN GENERAL. THAT IS THE EFFORTS THAT WE UNDERTOOK OVER THE LAST YEAR, YEAR AND A HALF, AT THE START OF THE BLACK LIVES MATTER MOVEMENT, THE FINAL RECOGNITION THAT WE DO HAVE A PROBLEM WITH RACISM IN PARTICULAR ANTI-BLACK RACISM AND HOW NOBODY CAN REALLY FILAREE LEAVED OF ADDRESSING IT IN ALL THE WORK THAT WE DO. THIS COMES DOWN TO THE PEOPLE DOING THE RESEARCH, DECIDING WHAT THE STUDY -- WHAT TO STUDY AND GIVING ACCESS DEMOCRATIZING ACCESS ACROSS THE BOARD. SO I THINK WE HAVE TWO VERY IMPORTANT ADVANCES THAT CAME OUT OF BRAIN THIS PAST YEAR. ONE OF THOSE WAS DEMAND FOR HAVING DIVERSE PERSPECTIVES AND OUR RESEARCH TEAMS THAT WILL IMPACT THE RESEARCH YOU DO OVER THE LONG HAUL. BRAIN IS TINY BUT WE ARE SEEING UPTAKE ON PLAN FOR ENHANCING DIVERSE PERSPECTIVES REQUIREMENT ACROSS THE NIH AND THAT'S DOVE TAILING WITH THE FINAL RECOGNITION AND PEOPLE WALKING THE WALK OF DEALING WITH THIS IN A PROACTIVE AND CONSTRUCTIVE WAY. THIS IS AN AREA THAT FRANKLY WE RECEIVED A LOT OF GREAT FEEDBACK AND SUPPORT FROM NEWG AND SWG. THE OTHER IS SETTING OF LARGE HUMAN CELL ATLAS PROJECT WHICH WILL BE LAUNCHING -- WHICH WILL BE LAUNCHING IN THE NEXT YEAR OR SO, AND WE APPROACH THE VERY CRITICAL ISSUE OF WHO ARE WE GOING TO STUDY AND THE IMPORTANCE OF DIVERSITY IN OUR HUMAN SUBJECT POPULATION THE MAKE THESE TOOLS AND RESOURCES TRULY USEFUL, THIS CAME OUT DIRECTLY FROM CONVERSATIONS AT NEWG AND IN PARTICULAR A PAPER THAT STEVE HYMAN SENT THE NIGHT BEFORE THE MEETING WHILE HAVING THIS VERY INTENSE EMAIL EXCHANGE AND I THINK THIS REALLY WAS A WATER SHED MOMENT FOR MYSELF AND I HOPE FOR THE FIELD AND SOMETHING THAT'S BEING ADOPTED ACROSS THE DOMAIN, INCLUDING BY OTHER FUNDERS WHO ARE INTERESTED IN DEVELOPING COMPREHENSIVE HUMAN CELL ATLASES. SO I HOPE THESE KINDS OF APPROACHES CONTINUE TO HELP INFORM HOW TO PROCEED IN THESE TRICKY AREAS WHERE WE MAY NOT ACTUALLY KNOW WHERE ALL THE PROBLEMS ARE. AND I THINK THEY WILL HELP US NOT ONLY SOLVE OUR OWN ISSUES AND PREVENTING US FROM GETTING IN TROUBLE BUT SERVE AS EXAMPLE FOR THE REST OF THE FIELD SO BRAIN CAN HAVE OUTSIZE IMPACT IF WE FOCUS ON THINGS IN FRONT OF US AND AS I THINK WAS IT KAREN ANITA SAID IF WE FOCUS ON DEVELOPING SKILLS AND SOLUTIONS AND THINGS PEOPLE CAN ACT ON WE CAN HAVE OUTSIZE IMPACT ON THE FIELD IN GENERAL GENERAL. SO THOSE ARE MY TWO CENTS AND COMMENTS AND I WILL PASS IT BACK TO YOU. >> I DON'T HAVE WAY IN THE MUCH OF COMMENTS OTHER THAN TO SAY I THINK THIS IS A GOOD THING IT IS BEING RECORDED BUT HERE WE ARE INTO THE FOURTH HOUR OF ZOOM MEETING NOT SURE HOW MANY GREAT IDEAS I JUST HEARD HAVE STUCK IN MY BRAIN BUT HAPPILY RECORD AND TRAN SCIENCED AN DISCUSSED AS NEWG TRIES TO FIGURE HOW TO MAXIMIZE USEFUL IMPACT FOR BRAIN INITIATIVE NEUROSCIENCE AND TO BE REALLY GRANDIOSE FOR HUMANITY AS A WHOLE. SO THANKS TO EVERYBODY WHO SPOKE UP ABOUT THEIR THOUGHTS. ABOUT WHAT NEWG SHOULD BE DOING. WE MOVE INTO THE LAST SEGMENT OF TODAY'S MEETING. WHICH IS THE ROUND TABLE WHERE I INVITE PEOPLE ON THE NEWG TO TALK ABOUT LET US KNOW ANYTHING THAT YOU KNOW OF THAT'S GOING ON THAT MIGHT BE A GENERAL INTEREST. I ACTUALLY WILL START WITH A QUESTION. THIS IS SOMETHING I KNOW ABOUT BUT I WONDER IF THERE IS ANY SUCH THING, AFTER I REALIZE WE ARE COMING UP ON THE 20TH ANNIVERSARY OF THE DANA MEETING MAY OF 2002 WHICH I DO THINK WAS THE BEGINNING OF WHAT I CONSIDER MODERN NEUROETHICS, DOES ANYBODY KNOW OF ANYTHING GOING ON TO TRY TO COMMEMORATE IT AND REMEMBER IT NEE MOREIALIZE IT IN ANYWAY? NOT SEE -- MEMORIALIZE IT IN ANY WAY? >> NITA HAS HER HAND UP. >> HI, NITA. >> SINCE NOBODY KNOWS ANYTHING ABOUT THAT, PROBABLY TOO LATE TO ORGANIZE ANYTHING FOR THAT, MAYBE WE WILL LOOK FOR THE 25TH ANNIVERSARY. ROUND TABLE CONTRIBUTIONS. RAISE YOUR HANDS, NITA. >> I THINK I HAVE UPDATED FOLKS ON THIS IN THE PAST BUT I WANTED TO UPDATE PARTICULARLY SINCE JIM MENTIONED CONSCIOUSNESS. I'M SERVING AS THE REPORTER WHICH IS LIKE THE OUTSIDE EXPERT. FOR THE UNIFORM LAW COMMISSIONS DRAFTING EFFORT ON RECONSIDERING THE UNIFORM DECLARATION OF DEATH ACT WHICH IN PARTICULAR FOCUSES ON THE NEUROLOGICAL CRITERIA FOR DEATH. SEVERAL ARE SERVING ISING AS OBSERVERS ON THAT PROCESS, OTHERS HAVE DIRECTED PEOPLE MY WAY WHO SHOULD BE PARTICIPATING IN THE PROCESS LIKE FOR EXAMPLE TRANSPLANT COMMUNITY OR OTHER FOLKS WHO SHOULD BE AT THE TABLE FOR THOSE CONSIDERINGS. THOSE OF YOU WHO DON'T KNOW THE UNIFORM LAW COMMISSION, IS A COMMISSION WHERE EVERY STATE HAS REPRESENTATIVES WHO ARE COMMISSIONERS WHO ADOPT DIFFERENT STATUTES THAT SERVE AS MODEL LEGISLATION FOR STATES FOR UNIFORMITY OF LAW WOULD BE USEFUL. AND OBVIOUSLY DEFINITION OF DEATH THAT IS A USEFUL PLACE TO HAVE UNIFORMITY OF LAW AND HOW THE COUNTRY DEFINES BOTH WHAT HOW DEATH IS DEFINED BUT ALSO THE CRITERIA FOR ESTABLISHING DEATH. WE HAD A YEAR LONG STUDY COMMITTEE WHICH STUDIED THE ISSUE IT WENT FORWARD INTO WHAT IS NOW A DRAFTING COMMITTEE SO WE ARE WORKING ON REDRAFTING OR UPDATING THE DRAFTING WITH RESPECT TO EMERGING NEUROSCIENCE AND OTHER ISSUES THE EUDA, WE ARE ABOUT TO START THE PROCESS OF REVIEWING POSSIBLE DRAFTS SO I WELCOME ANYONE TO CONTRIBUTE TO SEND ME NAMES TO PEOPLE WHO YOU THINK OUGHT TO BE AT THE TABLE IF THEY ARE NOT ALREADY BECAUSE THERE ARE POSSIBILITIES FOR PEOPLE TO SERVE AS OUTSIDE OBSERVERS WHO ARE EXPERTS THAT COME TO THE TABLE FOR CONVERSATION BUT OBVIOUSLY AN IMPORTANT ISSUE FOR NEUROETHICS AND QUESTIONS OF CONSCIOUSNESS AND HOW WE MEASURE CONSCIOUSNESS TURN OUT TO BE QUITE IMPORTANT FOR HOW WE ARE THINKING ABOUT DRAFTING AS WELL. >> THANK YOU. SAMEER. >> THANKS. TWO QUICK THINGS. ONE IS WE TALKED ABOUT ACTUALLY GROUPS IN PAPER NEURON EARLIER FOOD, THERE WAS A ARTICLE SCIENCE PIECE ON THAT WHO MANY MAY HAVE ALREADY SEEN. ON SOCIAL MEDIA AND VARIOUS THINGS BUT I CAN PUT THEM IN CHAT IF PEOPLE LIKE TO READ IT BUT THERE IS AN WELL WRITTEN PIECE THAT BRINGS UP INTERESTING POINTS. AS THEY RELATE TO TRUST, TRUST ABOUT SURGICAL PROCEDURE SHOUT AUTOMATICALLY CARRY OVER TO TRUST ABOUT RESEARCH. NOT INTENTIONALLY, THERE'S INTENTIONAL POINTS ABOUT MICE BUT UNINTENTIONAL THINGS A BASED ON WHAT PATIENTS SAID, THAT ARE THOUGHT PROVOKING. I CAN PUT THAT IN THERE IN CASE PEOPLE HAVEN'T SEEN IT. ASSN MEETING, NEUROSURGERY DEALS WITH THINGS THEY ARE TALKING ABOUT IN TERMS OF RESEARCH PIGGY BACKED TO NEUROSURGERY OPPORTUNITIES, MEETING IN JUNE, THIS WHOLE SECTION AT LEAST -- ON NEUROETHICS SO PEOPLE WHO ARE INTERESTED IN THAT CAN CERTAINLY (INAUDIBLE) -- >> IT'S BECOME A FAIRLY COMMON FEATURE OTTOMITEING BUT THE PICK UP IS INCREASING STEADILY FOR ALL THE REASONS THAT YOU WOULDN'T EXPECT. I WILL PUT A LINK INTO THE CHAT ON THAT TOO. >> THANK YOU. SID. >> HI, EVERYBODY. MY MAIN ANNOUNCEMENT IS MY BOOK ON DISORDERS OF CONSCIOUSNESS NOW YOU CAN'T SEE IT BECAUSE OF MY WEIRD CAMERA, EXISTS AS A THING OUTSIDE MY BRAIN NOW. WHICH I'M VERY HAPPY, THERE YOU GO. YOU CAN KIND OF SEE IT THERE. IT HAS A NICE COVER. I'M VERY HAPPY TO BE DONE WITH THAT. I HOPE WE DO MORE WORK ON CONSCIOUSNESS OBVIOUSLY. >> THE PEN STRUCTURE IN ENGLISH SO USEFUL, IT IS HARD TO SAY THAT IT IS FUN -- IT IS GOOD TO BE WRITING A BOOK BUT IT IS CERTAINLY EASY TO SAY IT IS GOOD TO HAVE WRITTEN A BOOK. TO HAVE PUBLISH AD BOOK. CONGRATULATIONS. >> THANK YOU. >> OTHER COMMENTS. OTHER THINGS GOING ON PEOPLE SHOULD KNOW ABOUT? >> WELL LOOKS LIKE WE HAVE GOT SOMETHING IN CHAT. FROM WALTER. NEUROCRITICAL CARE SOCIETY HAS A CAMPAIGN ON CURING COMA PREDICTING RECOVERY OR NON-RECOVERY FROM COMA. INTERESTING. THAT A NEW HAND OR OLD HAND NITA? AN OLD HAND. ALL RIGHT. LET'S CONCEIVABLE WE MIGHT ACTUALLY GIVE YOU A FEW MINUTES OF FOUND TIME. CHRISTINE, JOHN, ANY LAST WORDS? >> ONLY TO THANK EVERYBODY FOR THEIR CONTRIBUTIONS AND ENGAGEMENT AND GREAT DISCUSSION AND GOOD IDEAS. IT IS NICE TO SEE Y'ALL ON THE SCREEN, WISH I COULD SEE YOU IN PERSON SOME DAY. >> SOME DAY. >> DITTO. THANK YOU ALL SO MUCH FOR GREAT -- FOR US IN CALIFORNIA MORNING DISCUSSION LOOKING FORWARD TO DOING MUCH MORE MOVING AHEAD ON SOME OF THESE ISSUES AND HOPEFULLY SOONER RATHER THAN LATER SEEING EVERYONE IN PERSON AGAIN, NICE TO DO. ALL RIGHT. ENJOY YOUR FOUND SIX MINUTES AND WE WILL SEE YOU SOMETIME. BYE-BYE ALL.