MY NAME IS JEFFREY KAHN, I HAVE THE PLEASURE AND HONOR OF CO-CHAIRING THIS SUBGROUP WITH DR. JAMES EBERWINE WHO WILL INTRODUCE HIMSELF AFTER OPENING REMARKS. IF YOU ARE INTERESTED IN SENDING REMARKS PLEASE DO SO AT THE EMAIL ADDRESS SHOWN BNS@NIH.GOV. WE'LL ENTERTAIN QUESTIONS IN THE ROOM. WITH THAT, LET ME DO A VERY LITTLE BIT OF BACKGROUND ABOUT WHAT OUR SUBGROUP IS CHARGED WITH DOING AND WHAT THIS WORKSHOP IS MEANT TO SUPPORT. AS THE SLIDE NOTES, THE GOAL OF OUR SUBGROUP IS TO DEVELOP A NEUROETHICS ROADMAP FOR THE NIH BRAIN INITIATIVE. WE ARE ADVISORY TO THE BRAIN 2025 SUBGROUP OF THE ADVISORY COMMITTEE TO THE DIRECTOR. TO DO THE WORK OF DRAFTING NEUROETHICS ROADMAP, WE HAVE BEEN ASKED TO REVIEW PRIORITY AREAS IN THE BRAIN 2025 REPORT. INCORPORATING UPDATES AS THEY COME FROM THE BROADER WORKING GROUP 2.0 WHICH I MENTIONED AND IN SO DOING CHARACTERIZE NEUROETHICAL IMPLICATIONS THAT MAY ARISE. I WON'T SAY ANYTHING MORE ABOUT BRAIN 2025 BECAUSE JIM WILL BE THE NEXT PART OF OUR PROGRAM, AGENDA. WE WILL BE WORKING ON TWO MAIN AREAS, THOUGH TO BE EXPANDED AS THE SUBGROUP SEES FIT. FOCUSING ON TOOLS AND NEUROTECHNOLOGIES AS THEY COME OUT OF BRAIN 2025 IN THE RESEARCH BEING DONE NOW AND WHAT WE FORESEE IN THE FUTURE AND HOW THOSE TOOLS ARE BEING APPLIED TO ADVANCE THE BRAIN INITIATIVE OVERALL. JIM WILL DO OVERVIEW OF BRAIN 2025 MOMENTARILY. I WANTED TO SHOW THIS SLIDE TO SAY THIS IS THE ROSTER OF THE MEMBERS OF THE NEUROETHICS SUBGROUP. JIM AND I ARE CO-CHAIRS AS YOU NOTE THERE, ANYBODY WITH AN PROS IS ALSO MEMBER OF THE BRAIN MULTI-COUNCIL ETHICS WORKING GROUP AND ANYBODY WITH STAR OR ASTERISK IS MEMBER OF THE ACD BRAIN 2.0 WORKING GROUP SO WE HAVE CROSS FERTILIZATION OVERLAP BETWEEN THESE THREE GROUPS. THE INDIVIDUALS WHO ARE SPEAKING WILL HAVE A LONGER BIOS AND YOU HAVE THOSE IN YOUR PACKETS DISTRIBUTED WHEN YOU CAME INTO THE ROOM. AVAILABLE TO THOSE ONLINE. YOU SEE THIS THE NAMES AND INSTITUTIONAL AFFILIATIONS FOR THE MEMBERS OF THE SUBGROUP. I DON'T THINK I WANT TO DO ANYTHING MORE EXCEPT TO SAY WE OWE A DEBT OF GRATITUDE ALREADY TO THE GREAT STAFF OF THE NIH HELPING US IN THIS PROCESS LED BY EXECUTIVE SECRETARY TO THE SUBROUP. SO WITH THAT I'M GOING TO ASK JIM TO COME UP AND HE WILL TAKE US THROUGH THE NEXT PART. >> THANKS, JEFF. I WANT TO ADD MY WELCOME TO THOSE THAT JEFF CONVEYED, WE'RE PLEASED YOU ARE ABLE TO COME AND JOIN US AND SHARE YOUR THOUGHTS AND INSIGHTS INTO THE ISSUES NEUROETHICS RELATED TO THE BRAIN INITIATIVE. I DID WANT THE POINT OUT THAT IN ADDITION TO PEOPLE SPEAKING TODAY AND B NEXTS MEMBERS THERE'S ALSO MEMBERS OF THE NIH BRAIN INITIATIVE, INCLUDING WALTER KOROSHETZ AND JOSH GORDON, NINDS WHO HAD N IMH WHO OVERSEE THE BRAIN INITIATIVE AND NUMBER OF PROGRAM PEOPLE AS WELL SO WE'RE LOOKING FORWARD TO HAVING EVERYONE HERE. ALSO WANT TO POINT OUT WE HAVE CAROLYN AND JAY CHURCHHILL LEADING THE NEUROETHICS EFFORTS FOR THE BRAIN INITIATIVE SO IT'S GREAT TO HAVE EVERYONE HERE. SO I WAS ASKED TO PRESENT ABOUT BRAIN 2025. I'M HAVE TO SAY I'M CHAGRINED TO DO THIS IN FRONT OF WALTER BECAUSE HE USUALLY DOES THIS, HE DOES A PHENOMENAL JOB. HE CAN CORRECT ME ON ANYTHING I SAY WRONG. ALSO THANKS TO SAMANTHA WHITE FOR HELP PREPARING THE SLIDES AND GETTING THEM TO PRESENT TODAY. SO IN TERMS OF BRAIN 20 TA, YOU ARE FAMILIAR, OUR SUBCOMMITTEE HAS THIS IN DETAIL AND TRIED TO RECOGNIZE VARIOUS ASPECTS OF NEUROETHICAL CONCERN AND LAY THE FOUNDATION FOR DELIBERATIONS. SO MOST IMPORTANT COMPONENT OF THE BRAIN INITIATIVE THAT DERIVES RESEARCH IS THIS PHRASE, CHALLENGES TO MAP THE SURFACE OF THE BRAIN, ELECTRICAL AND CHEMICAL ACTIVITY FOLLOWING THESE CIRCUITS AND UNDERSTAND HOW INTERPLAY CREATES UNIQUE COGNITIVE BEHAVIORAL CAPABILITIES. THIS TELLS US THAT THE ARGUMENT THE BRAIN FUNCTIONS THROUGH CIRCUITRY, HOW CELLS INTERACT AND COMMUNICATE, ELABORATING THE SYSTEMS, COGNITION, MEMORY, ALL THE THINGS THAT MAKE US WHO WE ARE, AGENCY CONSCIOUSNESS AN THOSE ASPECTS OF HUMAN BEHAVIOR AND HUMAN IDENTITY WE ARE ALL INTERESTED IN TERMS OF ETHICAL (INAUDIBLE). THE BRAIN 2025 WAS SET UP AS TWO PHASE EFFORT, FIRST FIVE YEARS EMPHASIZING TECHNOLOGY, SECOND FIVE YEARS EMPHASIZING DISCOVERY USING THAT TECHNOLOGY. THERE'S BROAD OVERLAP, TECHNOLOGY BEING DEVELOPED LATER FIVE YEARS AND SOME OF THE DISCOVERY SCIENCE BEING DONE EARLIER BUT THAT WAS HOW IT WAS LAID OUT TO BEGIN WITH. THIS WAS A GREAT DOCUMENT, IF ANY ARE USED TO READING GOVERNMENT REPORTS, THIS IS A GREAT ONE, IF YOU AREN'T USED TO READING IT THIS IS THE ONLY ONE YOU SHOULD READ. THERE ARE SEVEN PRIORITY RESEARCH AREAS DEFINED IN BRAIN 2025 DRIVEN THE EFFORT THUS FAR. DISCOVERING DIVERSITY, BASICALLY CHARACTERIZING BRAIN CELL TYPES IN THE BRAIN, TOOLS FOR MAPPING CIRCUITS WAYS OF MONITORING NEUROACTIVITY AND DEMONSTRATING CAUSALITY BRAIN ACTIVITY AND BEHAVIOR. DISCOVERING DIVERSITY IS DONE IN SYSTEMS AS WELL AS HUMAN CELL SO STRONG HUMAN COMPONENT TO THIS. THOSE PARTICULAR AREAS ARE SKILL PRY AIR MAY RECALLLY IN SYSTEMS DEMONSTRATING CAUSALITY AS WELL REMAINING RESEARCH AREAS PRINCIPLE UNDERLYING FUNCTIONING ADVANCING NEUROSCIENCE AND INTEGRATING APPROACHES TO UNDERSTAND BRAIN FUNCTION AND THOSE TWO ARE CLEARLY ASSOCIATED WITH RESEARCH IN DISCOVERY AND TYPES BEING INTERESTED IN DISCUSSING THROUGHOUT THE DAY. SO THERE IS SIGNIFICANT FUNDING PROJECTED FOR THE BRAIN INITIATIVE, CLOSE TO $5 BILLION OVER LIFETIME OF THE BRAIN INITIATIVE. YOU CAN SEE HOW THIS PLAYS OUT OVER COMING YEARS. WITH THIS INCREASE FUNDING AND TIME LINE FOR FUNDING, THE BRAIN 2025 REPORT HAS COVERED TEN YEARS, A FEW YEARS INTO THIS NOW, BRAIN 2025 DID ANTICIPATE WITH RAPID SCIENTIFIC PROGRESS WE NEEDED TO REVIEW THE PRIORITY AREAS. SO WALTER AND JOSH ABOUT A YEAR OR SO AGO DECIDED TO PUT TOGETHER WORKING GROUP FROM THE ACD BRAIN INITIATIVE WORKING GROUP REVIEW PRIORITIES OF BRAIN 2025, PUT THOSE IN JUXTAPOSITION WITH WHERE WE ARE IN THE SCIENCE, PROGRESS MADE AND SEE IF ANYTHING CAN BE -- DEFINE WHETHER OR NOT ANYTHING IS CHANGED IN TERMS OF PRIORITIES OR ENHANCED AND TRY TO MAKE SURE THAT PROGRESS CONTINUES TO BE MADE. SO THAT'S SUGGESTED IS THIS WORKING GROUP IS DEVELOPED AND CHARGED TRUE THE ACD WORKING GROUP TO REVIEW BRAIN INITIATIVE ACTIVITIES AND PROGRESS. FOR NEW OPPORTUNITIES AND CONSIDER OPPORTUNITIES FOR TRAINING. THE ACD WORKING GROUP IS COMPOSED OF LARGE GROUP OF SCIENTISTS CO-CHAIRED BY CATHY AND JOHN. WE ALSO HAVE ON OUR COMMITTEE TWO MEMBERS, (INDISCERNIBLE) AND CHRISTINE GRADY, EXO FISH YOU MEMBER. -- EX-OFFICIO. THAT'S GOOD BECAUSE WE'RE SUPPOSED TO ANTICIPATE NEUROETHICAL ISSUES THEY ARISE FROM ADVANCING RESEARCH SO HAVING MEMBERS OF THE GROUP IS GREAT. I WANT TO GO BACK TO NEUROETHICS. IN BRAIN 2025 NEUROETHICS I THINK IT'S SETS THE TONE FOR WHAT WE'RE INTERESTED IN. SO I APOLOGIZE FOR MY READING 11.8 MYSTERIES THROUGH THE BRAIN INITIATIVE AND THROUGH NEUROSCIENCE IN GENERAL ARE LIKELY TO CHANGE HOW WE PERCEIVE OURSELVES AS INDIVIDUALS AND INDIVIDUALS OF SOCIETY. MANY RAISE MORE QUESTIONS, WE MAYBE TO CONSIDER AS SOCIETY HOW DISCOVERIES IN BRAIN PLASTICITY AND COGNITIVE DEVELOPMENT MAXIMIZE LEARNING IN CLASSROOM, NEUROSCIENCE MEASUREMENTS JUDGING INTENT OR ACCOUNTABILITY IN OUR ALMOST SYSTEM. PROCESS IN ANY AGE INCREASINGLY SOPHISTICATED NEURAL DECODING AND MANY OTHER QUESTIONS. QUESTIONS OF THIS COMPLEXITY WILL REQUIRE INSIGHT AND ANALYSIS MULTIPLE PERSPECTIVES, YOU SHOULD NOT BE NEUROSCIENTISTS ALONE. SO WITH THAT COMMENT IN BRAIN 2025, WHEN IT GOT STARTED, THE HEADS OF THE BRAIN INITIATIVE DEVELOPED THE MULTI-COUNCIL WORKING GROUP WHICH IS GROUP OF PEOPLE SCIENTISTS, AND OTHERS WHO ADVISE ON BRAIN INITIATIVE AND PROGRESS TO BE MADE. AS A COMPONENT OF MULTI-COUNCIL WORKING GROUP WE HAVE A SUBCOMMITTEE, NEUROETHICS SUBDIVISION, (INAUDIBLE) IS ON THAT, THIS IS CHRISTINE AND CAROL LYNN AND MYSELF ARE ON THIS. THIS IS A GROUP HEADED BY HANK -- IT'S BEEN A GREAT GROUP THAT'S MADE SIGNIFICANT PROGRESS THINKING IS NEUROETHICAL ISSUES WITH BRAIN RESEARCH TODAY. MANY ACTIVITIES THAT HAVE GONE ON THROUGH THAT NEUROETHICS SUBDIVISION, A PAPER ON NEUROETHICAL GUIDELINES, BRAIN RESEARCH IS TO REVIEWING GRANT APPLICATIONS FUNDED THROUGH NEUROETHICAL ISSUES TO BE ADDRESSED. AGAIN, WITH THIS IN MIND, HAVING PROGRESS IN BRAIN INITIATIVE, WE WERE CHARGED THEN TO DEVELOP A BRAIN NEUROETHICS SUBGROUP AND DEVELOP THIS NEUROETHICS GROUP THAT JEFF MENTIONED AND ANTICIPATION RAPID GROWTH AND KNOWLEDGE WITH APPLICATION TO NEUROTECHNOLOGIES AND WE'RE KEEN ON UNDERSTANDING HOW THESE ISSUES IMPACT HUMANS AND NON-HUMAN PRIMATES AND YOU'LL HEAR MORE ABOUT THAT LATER. THE BRAIN NEUROETHICS SUBGROUP HAS THIS COMPOSITION YOU HEARD ABOUT FROM JEFF. THEN THE TIME LINE FOR THE NIH ACD BRAIN WORKING GROUP AS WELL AS ACD IS SHOWN HERE. THE ACD WORKING GROUP STARTED BEFORE WE DID. WE WERE CONSTITUTED AFTER THEY WERE CONSTITUTED SO WE ARE A LITTLE BEHIND THEM IN DELIBERATIONS BUT THAT'S FINE. THEY HAVE TO MAKE PROGRESS FIRST TO TRY TO ELABORATE THOSE ISSUES AND CHANGING DEVELOPING AS GREAT DEVELOPS AND WE'RE GOING TO TRY TO ASSESS THOSE PARTICULAR ASPECTS OF PROGRESS AND OTHER ASPECTS OF NEUROETHICS RESEARCH ASSOCIATED WITH BRAIN TO DEVELOP OUR REPORT. ED FROM SO YOU CAN SEE WE'RE JANUARY 23 BNS PUBLIC WORKSHOP AND LATER TODAY WE'LL HAVE A CLOSED SESSION TO TALK ABOUT ASPECTS OF WRITING OUR RECOMMENDATIONS AND ELABORATING SOME OF THE IDEAS THAT WE HAVE BEEN THINKING ABOUT AND DEVELOPING. ON APRIL 11 THERE IS A TOWN HALL FOR THE BRAIN INVESTIGATORS MEETING. THAT WILL BE OPEN SESSION FOR ACD WORKING GROUP AND OUR BRAIN NEUROETHICS GROUP, JEFF AND I AND KATHERINE AND JOHN WILL BE THERE TO ANSWER ANY QUESTIONS IF THAT YOU HAVE ABOUT THESE PARTICULAR ISSUES. ACD WORKING GROUP, THE SCIENTIFIC GROUP HAS HAD THREE PUBLIC WORKSHOPS AND HOST OF OTHER WAYS TRYING TO GAIN INFORMATION AND INSIGHT WHERE BRAIN 2025 SHOULD GO. THE WORKSHOPS DEAL WE MERGING SCIENCE, MERGING OPPORTUNITIES AND EXPERIENCE WITH THEORY AND BACK, EXCUSE ME I DID NOT ATTEND THESE BUT MANY DID AND THEY WERE PRODUCTIVE ACD WHOLE HOST OF QUESTIONS AND DIRECTIONS PEOPLE ARE INTERESTED IN DEVELOPING. THERE WAS A PUBLIC REQUEST FOR INFORMATION. WE HAD NOT HAD MANY EMAILS OR COMMENTS WITH RESPECT TO THIS. WE HAD 69 THUS FAR. THROUGH NOVEMBER. I WANT TO EMPHASIZE TO THOSE PEOPLE WATCHING, THIS IS GOING TO STAY OPEN TO MARCH 2019. SO PLEASE IF YOU WOULD LIKE TO COMMENT ON RFI IT'S OPEN AND ANY COMMENTS YOU MIGHT HAVE WILL BE WELCOME AND WILL BE READ. AND EVALUATED. WITH RESPECT TO BRAIN NEUROETHICS, THERE HAS BEEN A LOT OF WORK AS I HAVE SAID FROM THE BRAIN COUNCIL WORKING GROUP SUBCOMMITTEE INCLUDING LOOK AT THE BOTTOM NEUROETHICS GUIDING PRINCIPLES FROM THE NIH BRAIN INITIATIVE HANK AND CHRISTINE AND KARA, PRIMARY PEOPLE WHO PUT THIS TOGETHER. THOUGH THE SUBCOMMITTEE HAD SOME INPUT. SO THIS CAME OUT IN DECEMBER IN JOURNAL NEUROSCIENCE. ABOVE THAT IS NEUROETHICS QUESTIONS RESEARCH YOU WILL HEAR MORE ABOUT LATER. CAROL AND HER GROUP AND THE INTERNATIONAL GROUPS HAVE BEEN INTERESTED AND INVOLVED IN DEVELOPING THOSE. I PRESENTED THIS EARLIER BUT I WANTED TO POINT OUT ONE ASPECT OF THIS WITH COLOR CODING. THAT'S AT THE/TOP IS NEUROETHICS RESEARCH FUNDING. THIS CAME ON LATE IN THE PROCESS BUT GETTING THE PROJECTS GOING WHAT YOU CAN SEE IS NEUROETHICS FUNDING HAS INCREASED AND ANTICIPATE WILL INCREASE MORE AS PEOPLE BECOME INTERESTED, DEMANDS EMPHASIS. KARA AND JAY HAVE BEEN DEVELOPING THE RFAs AND PUSHING THEM FORWARD. BRAIN AWARDS OVER THE YEARS HAS SPANNED UNITED STATES BUT ALSO INTERNATIONAL. THIS IS THE BRAIN INITIATIVE IS THE U.S. BRAIN INITIATIVE IN CONTEXT OF INTERNATIONAL INITIATIVE, MANY AROUND THE WORLD PEOPLE ARE INTERESTED IN DEVELOPING BRAIN RESEARCH. WITHIN EACH ETHICAL COMMITTEES AN CONCERNS THAT ARE DISCUSSED IN THEIR PARTICULAR INTEREST SO THERE'S INTERNATIONAL COMPONENT YOU WILL HEAR MORE PROBABLY FROM ARLEEN SALLES WHEN SHE TALKS BUT BRAIN NIH HAS BEEN GREAT BRINGING PEOPLE AROUND THE WORLD WITH PARTICULAR EXPERTISE TO THIS PARTICULAR INITIATIVE WHICH WILL THOUGH THIS WORK IS BEING FUNDED THROUGH NIH, (INDISCERNIBLE). AT THE LAST ANNUAL MEETING PEOPLE SELF-IDENTIFY NEURO-- THE BRAIN RESEARCH COMMITTEE DIFFERENT THINGS. DISCIPLINES THINK ABOUT ETHICS AND THIS IS A GREAT FOR US TO THINK ABOUT HOW TO REACH OUT AND BRING ALL THESE PEOPLE TOGETHER IN TERMS OF RESEARCH BUT ALSO ETHICAL ISSUES ASSOCIATED WITH IT. THIS IS INTERESTING AND IMPORTANT TASK FOR US. IN TERMS OF THE BRAIN INITIATIVE, TO SEED AND FUND CREATIVE EXCITING NOVEL INFORMATIVE IMPORTANT NEUROSCIENCE RESEARCH. SO TO DATE, I DON'T KNOW THIS SLIDE IS UP TO DATE. WALTER AND JOSH, THERE'S 625 PUBLICATIONS OVER THE FIRST FEW YEARS AGO. PEOPLE GET FUNDED PRODUCTIVE. GIVE PUBLICATIONS OUT THERE, IT IS AVAILABLE TO THE PUBLIC. BY VIRTUE OF BEING AVAILABLE TO THE PUBLIC, PEOPLE CAN LOOK AT THE DATA AND ASSESS FOR THEIR OWN USE, HOW THE THAT DATA USED, IS IT USED IN WAYS THAT ARE APPROPRIATE. AMONG SCIENTIFIC ADVANCES. GO THROUGH COUPLE OF THESE QUICKLY. SAM THESE TOGETHER. APPRECIATE THAT. THIS IS A RECENT PAPER WHERE THEY VIEW 3-D CELL TYPES. THIS IS THE HYBRIDIZATION SEQUENCING BASED IDEOLOGY. TO LOOK AT RNA CONTENT OF WHERE THE CELLS ARE INTERACTING WITH THE OTHER CELLS, BACK TO CIRCUITRY IDEA. CELLS AND CIRCUITS ARE IMPORTANT FOR BEHAVIOR IF YOU UNDERSTAND WHAT CAPACITY THOSE CELLS POTENTIALLY MAKE PROTEINS REGULATE THINGS THROUGH RNA, THIS IS WAY OF BEING ABLE TO ASSESS THAT IN THREE DIMENSIONAL COMPONENT. AS OPPOSED TO TAKING CELLS OUT OF BRAIN WHERE CONNECTS ARE GONE. THIS IS AN IMPORTANT ADVANCE. WHERE EVERYONE WANT TO GO GO. HOW CIRCUITS FUNCTION, ONE WAY TRYING TO ASSESS THOSE RNAs IN THOSE INDIVIDUAL CELLS IN MAP WHERE THEY'RE STILL CONNECTED. ONE COMMITTEE MEMBERS, ELIZABETH TILMAN IS WORKING ON MICROSCOPY FOR AWE A FEW YEARS, FIRST HEARD IT IN IGG IS SHYING THREE YEARS AGO, SHE MIGHT BE ON THE PHONE, IF SHE WERE HERE SHE COULD EXPLAIN BETTER THAN I AND I WON'T GRUE THROUGH THE DETAILS BUT THE IDEA IS TO USE IMAGING TO ASSESS NEUROAL ACTIVITY IN LIVE BRAIN. CAN YOU SEE NEURONS IN OTHER CELL TYPES FUNCTIONING, YOU CAN SEE INTERACTING AND TALKING TO ONE ANOTHER. IF THEY'RE TALKING TO ONE ANOTHER THAT'S A CIRCUIT DEVELOPED AN THOSE CIRCUITS THAT ARE INVOLVED IN ASPECTS OF CONTROLLING BEHAVIOR AND OTHER ASPECTS OF ORGANISMAL FUNCTIONING AND TO BE ABLE TO DO THIS, PROVIDING SENSITIVITY TECHNOLOGY, PHENOMENAL TECHNOLOGY URGE YOU TO LOOK INTO THIS MICROSCOPY. THIS ALLOWS US TO GET TO HOW CIRCUITS ARE FUNCTIONING IN VIVO, IF YOU CAN DO THAT, YOU CAN MANIPULATE THE FUNCTIONS CIRCUITS. IF YOU MANIPULATE THOSE CIRCUITS YOU HAVE POTENTIAL QUESTIONS NEUROETHICAL ISSUES SUBSEQUENT. THERE'S A PAPER THAT CAME OUT FROM ED BOYDEN THIS MONTH WHERE THEY WERE ABLE TO USE TECHNOLOGY TO EXPAND THE BRAIN SOME OTHER AREAS IMAGING PROCEDURES ACTUALLY TREMENDOUS DETAIL HOW CIRCUITS AND CELLS ARE INTERCONNECTED, LOOKING AT INDIVIDUAL SYNAPSES AND DENDRITIC SPINES. THAT TYPE OF DETAIL AND CIRCUITRY ALLOW US TO SEE HOW CELLS INTERCONNECT. THAT'S BRAIN 2025, LOOK AT CIRCUITRY AND THESE TECHNOLOGIES COMING ON BOARD TO I ALLOW US TO DO THIS NOW SO THE TYPES OF THINGS WE'RE CONSIDERING ARE NOT FANTASY AND WE'RE ABLE TO START THINKING THROUGH SOME OF THESE IN DETAIL THROUGH ANALYSIS. THEN NOT FORGET THE ENGINEERS IN THIS PARTICULAR PAPER THEY ARE MAGNETIC NANOPARTICLES TARGETED IN PARTICULAR STRUCTURES WITHIN THE LIVE BRAIN OR WITHIN THE LIVE ORGANISM. USING THIS TECHNOLOGY YOU CAN TAKE NANOSTRUCTURES THAT ARE TARGETED TO PARTICULAR AREA AND WARM THEM UP, HEAT THEM UP. IN PARTICULAR WAY THREE DIMENSIONAL SO THOSE NANOPARTICLES STRUCTURES WE'RE INTERESTED IN AT THAT LOCATION ARE HEATED SO THIS MIGHT HAVE THERAPEUTIC BENEFIT IN HUMANS FOR DISRUPTION BETA AMYLOID ACT GRATE AND OTHER THINGS TO THINK ABOUT SO THE ENGINEERS ARE CERTAINLY DISTRIBUTING TO THIS. THIS MIGHT BE A NEUROTECHNOLOGY APPLIED TO HUMANS, CERTAINLY IS ONE TYPE OF DIRECTION PEOPLE ARE GOING. SO I WANTED TO PUT MY PLUG IN, THIS IS A OLDER SLIDE BUT SCIENTIFIC AREAS WE ARE CONCERNED ABOUT NEUROETHICAL OVER THE COMING YEARS, THAT'S BIOSENSE PROBE DEVELOPMENT BEING ABLE TO PROBE AND SENSE MANY BIOLOGICAL PROCESSES WITHIN INDIVIDUAL CELL TYPE CHEMICAL PROCESSES. COMPUTATIONAL ANALYSIS, TAKING THE DATA TRYING TO UNDERSTAND WHAT THEY MEAN AND PUTTING THEM INTO SOME TYPE OF CONTEXT ARTIFICIAL INTELLIGENCE, COMPUTING AND OTHER COMPUTATIONAL FOCUSES PEOPLE ARE DEVELOPING ARE MAJOR AREAS TO DISCOVER AND METHODS FOR INTRODUCING MOLECULES IN SPECIFIC CELLS TO MANIPULATE THOSE CELLS. AREA IMPACT HOW WE THINK ABOUT MANIPULATION OF CELLS WHAT'S HAPPENING. I END MY SCIENTIFIC TALKS WITH THIS QUOTE, COMPLEXITY OF THINGS WITHIN THINGS SEEMS TO BE ENDLESS, NOTHING IS EASY OR SIMPLE. THIS IS ALLISON MONROE QUOTE, ONE OF MY FAVORITE WRITERS, SHORT STORY WRITER WON THE NOBEL PRIZE IN 2013, THIS IS INTERVIEW TO NEW YORKER. AND I THINK THIS IS CLEARLY TRUE WITH SCIENCE, NOTHING AS SIMPLE S ONE THINKS INCLUDING SINGLE CELL EFFORTS AND WORKING AS OTHERS DO. WHILE IT'S TRUE OF SCIENCE, TREMENDOUS COMPLEXITY ANSWERING QUESTIONS WE'RE TRYING TO ADDRESS AND IT'S MY HOPE DURING THE WORKSHOP SOME OF THAT COMPLEXITY IS SORTED THROUGH AND CODIFY SOME IDEAS AND THOUGHTS INTO IDEAS WE CAN PRESENT AND WORK WITH IN OUR ROADMAP. WE HAVE A NUMBER OF PEOPLE FROM OUTSIDE OF OUR COMMITTEE TO PRESENT, WE ASKED THEM PRESENT BECAUSE OF INSIGHTS AN PERSPECTIVE ON NEUROETHICS WORK THEY HAVE BEEN CONSIDERING. SO LET ME JUST QUICKLY GO THROUGH OUR SPEAKERS FOR TODAY AND THEN PROCEED TO THE SYMPOSIA PERCENT OUTSIDE SPEAKER WILL BE CAROLYN MONTOJO, CARE LIP IS DIRECTOR OF BRAIN INITIATIVES AND SCIENCE PROGRAMS FROM THE KAVLI FOUNDATION. YOU CAN SEE FROM HER BIOGRAPHY YOU HAVE WRITTEN AS WELL AS WHAT'S HERE, SHE HAS WORKED IN NEUROSCIENCE MANY YEARS AS RESEARCHER HERSELF AND NOW THE KAVLI FOUNDATION, KAVLI FOUNDATION IS A PRIVATE FOUNDATION, ONE OF THE MAJOR SUPPORTERS OF INNOVATIVE NEUROSCIENCE. SO THEY SEEK OUT INNOVATIVE NEUROSCIENCE TO TRY TO STIMULATE SCIENTIFIC DISCOVERY. SO WE'LL HEAR FROM CAROLYN LATER ABOUT MAPPING THE GLOBAL (INDISCERNIBLE) OUR SECOND SPEAKER WILL BE ARLEEN SALLES, ARLEEN IS DIRECTOR OF NEUROETHICS PROGRAM AND SHE WAS TELLING ME EARLIER SHE LIVES PART TIME IN ARGENTINA, PART TIME IN SWEDEN, PART TIME IN NEW JERSEY. I DON'T KNOW THOSE THREE WHERE I WOULD RATHER LIVE PROBABLY NOT NEW JERSEY. SHE'S VERY INVOLVED IN NEUROETHICS ASPECTS OF HUMAN BRAIN PROJECT, I FIRST HEARD ARLEEN TALK ABOUT GLOBAL NEUROETHICS SUMMIT THAT KAREN ROMMELFANGER ORGANIZED. THAT WAS GREAT IN THAT MEETING IN. SHE'S BEEN INVOLVED DOING NEUROSCIENCE RESEARCH MOSTLY FROM PSYCHOLOGICAL PERSPECTIVE I BELIEVE AND SHE WILL TALK TODAY ABOUT HUMAN BRAIN PROJECT AND RESEARCH NEUROETHICAL CONSIDERATIONS THEY HAVE BEEN ENTERTAINING. JEFFREY KAHN, MY CO-LEAD FOR THIS BRAIN NEUROSCIENCE WORKING GROUP. JEFF IS THE DIRECTOR OF THE INSTITUTE AT JOHNS HOPKINS, IT'S BEEN FUN TO INTERACT WITH JEFF FOR THIS PARTICULAR INITIATIVE. YOU CAN NEVER KNOW WHERE JEFF IS. THE EMAILS, CHINA, EUROPE, ALL OVER. JEFF HAS BEEN INVOLVED IN A NUMBER OF THINGS WORKING WITH NIH ON A NUMBER OF DIFFERENT ISSUES. MOST RECENTLY HE CO-CHAIRED WORKSHOP AT THE NATIONAL ACADEMIES ON NON-HUMAN PRIMATE RESEARCH. JEFF WILL TALK ABOUT ETHICS OF NON-HUMAN PRIMATES OF HUMAN BRAIN DISEASE. THIS AFTERNOON PROFESSOR OF PSYCHIATRY, STANFORD. LAURA WILL BE SPEAKING TO US ABOUT ETHICS IN NEUROSCIENCE PSYCHIATRY, STAKEHOLDER PERSPECTIVE. SHE AND HER COLLEAGUES NUMBER OF COMMITTEE, HAVE WORKED ON TRYING TO UNDERSTAND THE NEUROETHICS ASSOCIATED WITH RESEARCH ONGOING TRYING TO EVALUATE ASPECTS OF ISSUES WITH THOSE TYPES OF RESEARCH ENDEAVORS. YOU WILL HEAR MORE FROM HER ABOUT THAT. QUANTITATIVE ASPECT, QUANTITATIVE ASPECTS. INSOO HYUN, ASSOCIATE PROFESSOR CASE WESTERN UNIVERSITY INVOLVED IN A NUMBER OF THINGS RELATED PRIMARILY TO ORGANOID RESEARCH, SHE PUBLISHED INFLUENTIAL PAPER ON THE ETHICAL ISSUES ASSOCIATED WITH ORGANOID RESEARCH WITHIN LAST COUPLE OF MONTHS. AND INSOO WILL TALK ABOUT THE ETHICAL CONSIDERATIONS FOR HUMAN ORGANOID RESEARCH. FRANCIS SHEN IS LAW PROFESSOR AT UNIVERSITY OF MINNESOTA. SHE'S BEEN INTERESTED IN NEURAL LAW FOR A NUMBER OF YEARS. I DID NOT KNOW THIS DISCIPLINE EXISTED BUT IT'S BEEN FUN TO INTERACT WITH FRANCIS TO EMAIL AND PHONE CALLS AND MEETINGS ONLINE, PERSPECTIVE HOW NEUROSCIENCE IMPACTS LAW AND HOW LAW SHOULD BE THINKING NEUROSCIENCE DISCOVERIES WILL BE ELIMINATING FOR ALL OF YOU, CERTAINLY HAS BEEN FOR ME. WE'LL TALK ABOUT BRAIN 2025 AND FUTURE IN NEURAL LAW. CHRISTINE GRADY, MOST OF YOU KNOW, CHRISTINE IS CHIEF OF THE NIH CLINICAL CENTER DEPARTMENT OF BIOETHICS IN REVIEWING CHRISTINE'S BACKGROUND I DIDN'T REALIZE SHE HAD WORKED WITH AIDS PATIENTS A NUMBER OF YEARS AND INVOLVED WITH DIFFERENT ASPECTS OF DELIVERY AND EVALUATION AND ASPECTS OF ETHICAL WORK. ALWAYS FUN TO INTERACT NEUROETHICS SUBCOMMITTEE MULTI-WORKING GROUP SUBCOMMITTEE, SHE ALWAYS HAS COMMENTS AND INSIGHTS THAT ARE HELP FOCUS DISCUSSIONS. CHRISTINE WILL BE TALKING ABOUT DOES EXISTING GUIDANCE SUFFICE FOR BRAIN VERGE. -- RESEARCH. KAREN ROMMELFANGER IS PROGRAM DIRECTOR EMORY UNIVERSITY NEUROETHICS PROGRAM, ASSISTANT PROFESSOR DEPARTMENT OF NEUROLOGY AND PSYCHIATRY. KAREN IS KEENLY INTERESTED IN ASPECTS OF INTERNATIONAL NEUROETHICS AND ROLE OF ETHICS IN BRAIN RESEARCH AROUND THE WORLD. KAREN WILL TALK ABOUT A NUMBER OF HI, IN HER TALK. WE TALK DEEP BRAIN STIMULATION, ALSO OTHER ASPECTS OF NEURAL DEVICES. THIS IS IMPORTANT PART OF DELIBERATIONS THAT GO INTO OR INTERACT WITH HUMANS ON INTIMATE LEVEL. GOOD MORNING. I WANT TO THANK THE NEUROETHICS SUBGROUP OF BRAIN INITIATIVE 2.0 WORKING GROUP TO THE ACD, DIRECTOR OF NIH FOR INVITING ME TO SPEAK TODAY. IT IS A PLEASURE TO BE HERE AND LOOKING FORWARD TO ALL TALKS TAKING PLACE THE REMAINDER OF THE MORNING. FOR THOSE WHO DON'T KNOW ME, MY NAME IS CAROLINE MONTOJO, DIRECTOR OF THE KAVLI FOUNDATION, SPOKESPERSON FOR THE INTERNATIONAL BRAIN INITIATIVE ALONG WITH A COLLEAGUE FROM AUSTRALIA, LINDA RICHARDS. SO FULL DISCLOSURE, I'M NOT A NEUROETHICIST, I'M A NEUROSCIENTIST BY TRAINING. SO MY TALK TODAY WILL BE FOCUSED ON A HIGHER LEVEL THAN OTHER TALKS YOU WILL HEAR TODAY IN THE SENSE I'LL PROVIDE AN OVERVIEW OF SOME OF THE NEUROETHICS RELATED EFFORTS WE HAVE BEEN SUPPORTING RECENTLY. SOP WHY DOES THE FOUNDATION SUPPORT NEUROETHICS? WE TRY TO LISTEN CLOSELY TO OUR COMMUNITIES, OUR SCIENTIFIC COMMUNITIES. ONE THING WE HAVE BEEN HEARING FROM MANY FOLKS OVER THE PAST FEW YEARS IS IMPORTANCE OF INTEGRATING NEUROETHICS IN INTENTIONAL WAY TO NEUROSCIENCE ENTERPRISE SO I WILL TALK MORE ABOUT THAT AS WELL DURING MY TALK. TO PROVIDE AN OVERVIEW WHAT I'M SPEAK ABOUT TODAY I WILL INTRODUCE ABOUT THE KAVLI FOUNDATION. OUR INSTITUTES AS WELL AS IGNITING AND CATALYZING ACTIVITIES. THENLY GO INTO THE GLOBAL LANDSCAPE OF NEUROETHICS. SO I THINK ONE OF THE MOST USEFUL THINGS THAT I CAN DO FOR YOU TODAY IS TO PROVIDE SOME INFORMATION ABOUT EFFORTS WE HAVE BEEN SUPPORTING IN NEUROETHICS AS MENTIONED EARLIER. THESE ARE THINKING ABOUT BEST PRACTICES IN NEUROETHICS, THINKING ABOUT RESPONSIBLE RESEARCH INNOVATION, VARIOUS LEVELS. SO INCLUDING INTERNATIONAL, THE NATIONAL INITIATIVE LEVEL, INTERNATIONAL INITIATIVE AS WELL AS GOVERNMENTAL LEVELS, AS WELL AS SCIENCE AND TECHNOLOGY DEVELOPMENT LEVEL. I'LL TALK WITH REGARD TO COLLABORATION WITH IEEEE BRAIN INITIATIVE. WHAT WE ARE TALKING ABOUT IS NOT EXHAUSTIVE LIST OF THE FANTASTIC NEUROETHICS WORK OCCURRING AROUND THE WORLD INCLUDING THE INTERNATIONAL NEUROETHICS SOCIETY WE SUPPORT BUT IT IS MEANT TO PROVIDE IMPLEMENTATION OF RESEARCH SUPPORTS WE HAVE BEEN SUPPORTING IN THIS SPACE TO KEEP THE SUBGROUP ABREAST OF AND ENGAGED IN CONTINUOUSLY ENGAGED IN WITH THESE EFFORTS AS DEVELOPING IN REAL TIME. FINALLY I WILL TALK ABOUT CONSIDERATIONS FOR THE NEXT PHASE OF THE BRAIN INITIATIVE. FOR THOSE NOT FAMILIAR WITH THE KAVLI FOUNDATION, OUR MISSION IS TO ADVANCE SCIENCE FOR BENEFIT OF HUMANITY. ALSO TO INCREASE PUBLIC UNDERSTANDING OF SCIENCE. WE DO THIS THROUGH TWO PRIMARY FLAGSHIP PROGRAMS, ONE IS OUR KAVLI INSTITUTES, THE OTHER IS KAVLI PRIZE. FOR THE KAVLI INSTITUTES WE HAVE 20 INSTITUTES SPREAD AROUND THE WORLD. ACROSS FOUR FIELDS. ONE IS -- TWO THEORETICAL PHYSICS SIX IN ASTRO PHYSICS FIVE IN NANOSCIENCE AND SEVEN IN NEUROSCIENCE. IN ADDITION TO OUR KAVLI INSTITUTES, WE ALSO ENGAGED IN IGNITING CATLIZING ACTIVITY. WHAT DO I MEAN BY THIS? THERE ARE MANY STEPS IN ORDER TO GO FROM IDEA TO DISCOVERY. ONE COMPONENT ALONG THE PATH IS THE RULE OF THUNDERS WHO ENABLE HYPOTHESIS TESTING AND EXPERIMENTS TO I CAN TA PLACE. THESE FUNDERS INCLUDE GOVERNMENT, FEDERAL FUNDING AGENCIES, PRIVATE FOUNDATIONS, INDUSTRY AS WELL AS UNIVERSITIES. WHERE DOES KAVLI FIT? ONE AREA IS THAT WE TRY TO IGNITE IDEAS TO SUPPORT SCIENTISTS TO EXPLORE FRONTIER OUT OF THE BOX IDEAS WHO ARE FUNDING IN. PRAY. SOMETIMES WE TRY TO HELP IGNITE IDEAS. WHEN MANY MEMBERS OF THE COMMUNITY, THERE'S A CRITICAL OPPORTUNITY OR GAP FACING THE FIELD WE TRY TO CATALYZE AND CONVENE AND FACILITATE VARIOUS STACK HOLDER GROUPS THE PATH FORWARD TO FILL THAT GAP. ONE CONCRETE EXAMPLE COMES FROM OUR WORK IN SUPPORTING SCIENTISTS TO DEVELOP EARLY IDEAS THAT INSPIRE U.S. BRAIN INITIATIVE. SO I'LL TAKE YOU THROUGH THIS QUICK EXAMPLE. SO BACK IN SEPTEMBER 2011 WE GATHERED INSTITUTE NUMBERS FROM OUR NANOSCIENCE AND NEUROSIGN KAVLI INSTITUTES AT KAVLI WORLD SOCIETY OUTSIDE OF LONDON TO EXPLORE IDEAS AT THE INTERFACE OF NANOSCIENCE AND NEUROSCIENCE. THIS IS WHERE THE IDEA FOR WHAT WAS CALLED THE BRAIN ACTIVITY MAP WAS BORN AND AFTER THAT, WE STARTED TO CONVENE MORE MEETINGS TO HELP SCIENTISTS MATURE IDEAS FOR THIS. SO THIS WAS DONE FOR KAVLI MEETINGS PROGRAM AS WELL AS SCIENTIFIC SOCIETIES COLLABORATION. SFN, ANOTHER SOCIETY THAT WE SUPPORT. THROUGH THIS PROCESS AFTER 18 MONTHS CONVENING WITH VARIOUS PARTNERS INCLUDING THE INSTITUTE FOR BRAIN SCIENCE, GET BY CHARITABLE TRUST AS WELL AS FUNDING AGENCIES THE U.S. FUNDING AGENCY WAS LAUNCHED IN 2013. THIS TAKES ME TO THE INTERNATIONAL BRAIN INITIATIVE. AS EXTENSION OF OUR WORK WITH THE U.S. BRAIN INITIATIVE IT WAS NATURAL FOR US TO PARTNER WITH THE U.S. NATIONAL SCIENCE FOUNDATION AS WELL AS U.S. STATE DEPARTMENT TO THINK ABOUT EMERGING GLOBAL LANDSCAPE OF NEUROSCIENCE, THE LARGE SCALE INITIATIVES COMING ONLINE, AND WE ARE INTERNATIONAL FOUNDATION, SO ALSO MAKES SENSE HOW TO REACH ACROSS TO OUR INSTITUTES AROUND THE WORLD. BY WAY OF BACKGROUND GLOBAL BRAIN PROJECTS, YOU WILL SEE WHERE I'M GOING IN TERMS OF NEUROETHICS. SINCE 2013 THERE'S E MANIER GENERALS OF GLOBAL BRAIN PROJECTS, WE MENTIONED THE BRAIN INITIATIVE, ARLEEN SALLES WILL TALK HUMAN BRAIN PROJECT. AND THERE'S SEVERAL OTHER BRAIN INITIATIVES THAT ARE COMING ONLINE. THOSE INCLUDE THE AUSTRALIAN BRAIN ALLIANCE, THE CHINA BRAIN PROJECT, THE CANADIAN BRAIN RESEARCH STRATEGY AND KOREA BRAIN INITIATIVE. ONE OF THE CONCERNS OR OPPORTUNITIES WE WERE HEARING FROM THE SCIENTIFIC COMMUNITY AS THESE LARGE SCALE NATIONALLY SPONSORED PROJECTS WERE LAUNCHED IS THAT BETTER COORDINATION WAS NEEDED TO MAXIMIZE IMPACT AND EFFICIENCY AND PRODUCE POTENTIAL REDUNDANCY ACROSS THE GLOBAL BRAIN PROJECTS. SO WE PARTNERED WITH THE NATIONAL SCIENCE FOUNDATION STATE DEPARTMENT AS WELL AS SCIENTISTS AT KAVLI INSTITUTES JOHNS HOPKINS, ROCKEFELLER COLUMBIA UNIVERSITY TO CONVENE SCIENTIFIC AND HIGH LEVEL MEETINGS. SO THE FIRST OF THOSE WAS IN APRIL 2016, GLOBAL BRAIN WORKSHOP AT JOHNS HOPKINS& UNIVERSITY ABOUT 80 SCIENTISTS FROM AROUND THE WORLD. THAT WAS THE PREDECESSOR, THE PREPARATION TO COUPLE OF EVENTS THATK TOO PLACE IN SEPTEMBER 2016, THIS WAS THE COORDINATING GLOBAL BRAIN PROJECTS CONFERENCE HOSTED, ORGANIZED BY RAFAEL AND CORY BARKMAN, AS WELL AS UN GENERAL ASSEMBLY HIGH LEVEL DIALOGUE, YOU CAN SEE A PICTURE OF ONE OF THE PANELS THAT WAS MODERATED BY FRANCE CORDOVA. FRANCIS COLLINS PARTICIPATED IN THE EVENTS ON SEPTEMBER -- IN SEPTEMBER 2016 AS WELL, HAPPY TO HAVE HIS PARTICIPATION. SO ONE OF THE THINGS WE ASKED THE ORGANIZERS, IS IF THEY COULD PROVIDE SOME OF THE KEY HIGH PRIORITY TOPICS THAT EMERGED DURING THAT COORDINATING GLOBAL BRAIN PROJECTS CONFERENCE, OVER 400 ATTENDEES FROM OVER A DOZEN COUNTRIES WANTED TO KNOW THE EMERGING TRENDS. SO THEY PUBLISHED A PAPER CALLED GLOBAL BRAIN INITIATIVE, A COMMENTARY IN CELL. ONE THING THEY HIGHLIGHTED IS NEUROETHICS AND SOCIETAL OUTREACH IDENTIFIED HIGH PRIORITY TOPICS. SO PULLING A COUPLE OF QUOTE OUT OF THE PAPER. ETHICAL QUESTIONS BY USE DEVELOPMENT AND AMPLYCATION OF NEUROTECHNOLOGIES, INTERNATIONAL QUESTIONS. MONITORING OR MODIFYING HUMAN BRAIN ACTIVITY MUST BE ADDRESSED WITHIN AN INTERNATIONAL HUMANISTIC MIND SET. AND ETHICAL SOCIETAL QUESTIONS WILL AFFECT POPULATION AS A WHOLE SO OUTREACH AND COMMUNICATION MUST BE ASPECTS OF BRAIN PROJECT. SO AFTER THAT 2016 MEETING WE STARTED TO EXPLORE WITH THE LEADERS IN NEUROETHICS FIELD WHERE THIS IS AN EMERGING TREND, WHAT CAN BE DONE ABOUT IT? SO WE REACHED OUT TO FOLKS LIKE HANK, STEVE HIGH LAND, KAREN ROMMELFANGER WHO IS HERE. WHAT CAN WE DO TO IMMEDIATELY HELP THIS GIVEN HIGH PRIORITY AROUND THE WORLD. SO WE WILL TALK MORE ABOUT THAT, WHICH IS WHERE THE IDEAS FOR GLOBAL NEUROETHICS SUMMIT STARTED IN GERMANY. IN DECEMBER 2017, AFTER SEVERAL MONTHS OF CONTINUING TO CONVENE LEADERS OF GLOBAL BRAIN PROJECT TO UNDERSTAND WHAT AN INTERNATIONAL BRAIN INITIATIVE COULD BE, WHETHER IT COULD BE USEFUL, IN DECEMBER 2017 THEY MADE A PUBLIC DECLARATION OF INTENT. AT THIS TIME THEY WERE WORKING TOGETHER BUT THEY WERE FORMING AN ALLIANCE SO THEY MADE THIS ONE THING THEY NOTED IN THE DECLARATION IS NEUROETHICS IS A KEY CONCERN OF CITIZENS POLICY MAKERS AND COMMUNITIES INCREASINGLY CONFRONTED WITH VARIOUS SIGNIFICANT ADVANCES. AND THE INITIATIVES COMMIT TO COLLABORATE IN THE FIELD OF NEUROETHI. -- NEUROETHICS. THIS BRINGS TO OUR VISION, WE HAVE BEEN WORKING QUITE A BIT DEVELOPING THE FOUNDATION AND FRAMEWORK FOR THE IBI TO CONTINUE TO MOVE FORWARD. YOU CAN SEE THE NEUROETHICS IS REPRESENTED IN THE VISION ITSELF. SOME OF THE ASPIRATIONAL GOALS INCLUDE I APOLOGIZE FOR THIS GRAPHIC HERE. OVERLAPPING. PROMOTING COORDINATION AND LEADERSHIP TRANSCENDING BOUNDARIES SHARING AND DISSEMINATING KNOWLEDGE AND SHAPING THE FUTURE. IN TERMS HOW NEUROETHICS IS TACKLED, AS I MENTIONED EARLIER WE HAVE BEEN TALKING WITH LEADERS IN THE NEUROETHICS SPACE WHAT'S CATALYZED EARLY ON. THIS IS IDEAS FOR THE GLOBAL NEUROETHICS SUMMIT WERE BORN. WE ARE LUCKY TO HAVE KAREN ROMMELFANGER THINKING ABOUT INTERNATIONAL SPACE IN A CROSS CULTURAL -- INTERESTED IN BEING PART OF THIS PROJECT AS WELL AS COLLEAGUE FROM THE KOREA BRAIN PROJECT, THIS IS SUM JONG FROM BRAIN RESEARCH NEUROETHICS. (INDISCERNIBLE) TWO SO FAR, NEUROETHICS SUMMITS. AND ARLEEN SALLES WILL TALK ABOUT THIS AS WELL IN HER TALK. SO THIS WAS SHOWN. ONE OUTPUT FROM THAT WORKING GROUP WAS THIS NEUROPERSPECTIVE ARTICLE THAT CAME OUT IN OCTOBER LAST YEAR. I ENCOURAGE YOU TO CHECK IT OUT N NEUROETHICS QUESTIONS TO GUIDE RESEARCH IN THE INTERNATIONAL BRAIN INITIATIVES. THERE WERE OTHER FORTHCOMING ACTIVITIES, ONE OF THEM TO LOOK FOR NEXT MONTH IS NEURON SPECIAL ISSUE ON PRACTICING NEUROETHICS. SO THIS IS THE FIRST SPECIAL ISSUE ON NEUROETHICS IN A HIGH IMPACT JOURNAL. IBILITY WHAT'S EXCITING IS WE HAVE PAPERS FROM EACH OF THE ESTABLISHED EMERGING BRAIN PROJECTS HOW THEY INTEGRATE NEUROETHICS WITHIN THEIR OWN PROJECTS. OTHER OUTCOMES FROM THIS NEUROETHICS GROUP OF THE IBI, SUMMER SCHOOL MODULE TESTING A MODULE WITH SUMMER SCHOOLS AS WELL AS PUBLIC ENGAGEMENT IN NEUROETHICS WORKSHOP AND I'LL COME BACK TO THIS AT THE END OF MY TALK. SO HOW DOES THE IBI WORK? I'LL WALK YOU THROUGH THE ORGANIZATIONAL STRUCTURE TO MAKE IT CLEARER ABOUT HOW THIS HAS BEEN PROGRESSING. THIS IS SOMETHING WE HAVE BEEN WORKING ON QUITE A BIT OVER THE PAST YEAR. WHAT IT IS IS THE CORE OF INTERNATIONAL BRAIN INITIATIVE ARE REPRESENTATIVES FROM THE GLOBAL BRAIN PROJECT. AND IN ADDITION TO THAT, THERE ARE WORKING GROUPS, THESE WORKING GROUPS ARE INTENDED TO BE FAST ACTING FOCUSED TEMPORARY GROUPS TO ADDRESS COMMON CHALLENGES THAT ARE EMERGING AMONG THE BRAIN INITIATIVES AND ALSO TO THINK ABOUT DELIVERABLES THAT CAN BE DISSEMINATED TO THE BROADER COMMUNITY. ONE OF THE IMPORTNT IDEAS, COUPLE OF IDEAS HERE IS THESE WORKING GROUPS ARE -- INCLUDE SCIENCE AND SUPPORT OF COMMUNITIES SO FOLKS WHO KNOW WHAT'S HAPPENING IN THESE SPECIFIC AREAS. THE OTHER IDEAS IS THE VISION IS BOTTOM EFFICIENT SO DEVELOPED BY THE SCIENTISTS WHO ARE ON THESE WORKING GROUPS. FINALLY, ALSO THE BRAIN INITIATIVE, THE U.S. BRAIN INITIATIVE IS REPRESENTED HERE BY SOME REPRESENTATIVES FROM THE NIH AND NSF WHO I WILL SHARE WITH YOU IN A SECOND. THE OTHER COMPONENTS IS IT WAS BROUGHT UP IT WOULD BE HELPFUL TO HAVE A VENUE FOR THE FUNDERS ASSOCIATED WITH BRAIN PROJECTS FOR INTERNATIONAL NEUROSCIENCE AS WELL ADS STAKEHOLDERS SUCH AS INCF, EBRO INTERNATIONAL BRAIN LAB AND OTHERS TO COMMUNICATE WITH EACH OTHER. SO THAT'S THE OTHER ASPECT OF THIS ORGANIZATIONAL STRUCTURE. SO AS FAR AS THE PEOPLE WHO ARE ON THE STRATEGY COMMITTEE, THE REPRESENTATIVES FROM THE VARIOUS BRAIN PROJECTS WE HAVE JIM FROM NSF, AMY ADAMS NIH AND YOU MAY RECOGNIZE OTHER SCIENTISTS FROM HVP, JAPAN BRAIN MINDS, KOREA BRAIN INITIATIVES, KOREA BRAIN STRATEGY AND THE AUSTRALIAN BRAIN ALLIANCE, YOU CAN SEE 2019 CO-CHAIRS. WE ARE CHECKING TO SEE HOW THE ORGANIZATIONAL STRUCTURES WORKS AND HOW DIFFERENT ROLES WORK SO IT'S ALL EXPERIMENT TAKING PLACE REAL TIME, ONE THING I WOULD LIKE TO MENTION IS CORE OF THE IBI IS A VENUE FOR BRAIN PROJECTS TO TALK TO EACH OTHER AND SECONDARILY HELP ADDRESS COMMON CHALLENGES, THAT'S BETTER. ONE RECOMMENDATION FOR THE NIH BRAIN INITIATIVE IS I WOULD ENCOURAGE THE BRAIN INITIATIVE CONTINUE THE STAY INTENTIONALLY CONNECTED TO THIS GROUP. NOT JUST IN THE NEUROETHICS COMPONENT BUT ALSO IN THE VISION CONTRIBUTION VISION SETTING. FOR IBI. THIS BRINGS ME TO THE NEUROTECHNOLOGY SOCIETY PROJECT. SO WITH THE ORGANIZATION FOR ECONOMIC COOPERATION AND DEVELOPMENT, THEY HAVE BEEN PARTICIPATING IN THE IBI DISCUSSIONS ON TO PROVIDE A BROADER POLICY PERSPECTIVE BUT BECAME QUICKLY CLEAR THAT THINKING ABOUT AN EFFORT AT HIGHER POLICY LEVEL COULD BE AN IMPORTANT WAY FOR GOVERNMENTS ACROSS THE WORLD TO RECOGNIZE THE IMPORTANCE OF NEUROETHICS IN RESPONSIBLE RESEARCH AND INNOVATION. WE PARTNERED WITH THIS PROJECT AND NEUROTECHNOLOGY SOCIETY PROJECT. THOSE NOT FAMILIAR WITH EECD IS AN INTERGOVERNMENTAL ORGANIZATION WITH 34 MEMBER COUNTRIES THAT SPECIALIZES IN CREATING POLICY CREATION AN PRINCIPLES. THIS IS A FORMAL STEP WISE PROCESS BY INPUT FROM NATIONAL DELEGATES AND OTHER EXPERTS. THEY HELD THEIR FIRST MEETING FOR THIS PROJECT IN SEPTEMBER 2017. AND YOU CAN CHECK OUT A PAPER THAT CAME OUT OF THAT MEETING. PUBLISHED LAST YEAR IN 2018. AS A NEXT STEP THEY HELD A WORKSHOP IN SEPTEMBER 2018 IN SHANGHAI. THIS WORKSHOP, IT WAS BROAD RANGING DISCUSSION INCLUDING TRANSLATION OF NEUROTECHNOLOGY, AS WELL AS BEST PRACTICES AND FRAMEWORKS IN RESPONSIBLE INN INVESTIGATION IN THE PRIVATE SECTOR. -- INNOVATION. NOW DRAFTING PRINCIPLES FOR RESPONSIBLE INNOVATION IN NEUROTECHNOLOGY, IDEA HERE IS TO HELP GOVERNMENT BETTER ASSESS THE IMPACT OF TECHNOLOGIES PAN POLICY RESPONSES. AND ALSO TO HELP SUPPORT RESPONSIBLE ADVANCEMENT OF EMERGING NEUROTECHNOLOGIES. IF YOU ARE INTERESTED STAY TUNED. THERE'S 11 PRINCIPLES INWHAT THEY ARE DRAFTING. MOSTLY TO NEUROTECHNOLOGY FOR HELP, TO IDENTIFY NON-MEDICAL APPLICATIONS AND IMMEDIATE AND LONG TERM IMPACT ON INDIVIDUALS AND SOCIETY. FROM SO AS MY FINAL PROJECT I'LL MENTION IN NEUROETHICS SPACE, THIS BRINGS ME TO THE IEEE BRAIN INITIATIVE SO MANY OF YOU MAYBE FAMILIAR WITH IEEE BECAUSE OF THEIR FOCUS ON TECHNOLOGY STANDARDS AS WELL AS ETHICS. YES PARTNERED WITH THE BRAIN INITIATIVE BECAUSE OF COMMUNITY OF SCIENTISTS WHO THINK DEEPLY ABOUT ROAD MAPS FROM TECHNOLOGY, STANDARDS AS WELL AS NEUROETHICS. WE SPONSORED THEM TO HAVE A BRAIN THINK TANK, THAT WAS FOCUSED ON CLOSE LOOP CONTROL OF NEURAL ACTIVITY THIS TOOK PLACE LAST YEAR. THERE WERE MANY BRAIN INITIATIVE FUNDED SCIENTISTS THERE INCLUDING (INDISCERNIBLE) AND THEY WERE DISCUSSING MANY ASPECTS OF CLOSED LOOP CONTROL OF NEUROACTIVITY BUT THERE WAS AN ETHICAL CONSIDERATION SESSION. THAT INCLUDED JUDY WHO WAS INVITED TO SPEAK AS WELL AS SARA BORING. AMONG CONCERNS AND RECOMMENDATIONS FROM PARTICIPANT, ONE OF THE RECOMMENDATIONS WAS IEEE SHOULD CONSIDER GUIDELINES FOR EVALUATING RISK AROUND NEUROTECH. NOW THEY ARE IN THE PROCESS OF CREATING A WHITE PAPER AND TECHNOLOGY ROADMAP TO GUIDE RND FOR CLOSED LOOP BRAIN STIMULATION. THIS IS ANOTHER EFFORT TO BE AWARE OF. THE IEEE CO-CHAIRS IF NOT FAMILIAR WITH PAUL SHIDA ANDY DOES AND THEY HAVE A PROJECT MANAGER WORKING ON THIS AS WELL. THAT BRINGS ME TO THE CLOSING OF MY TALK WHICH IS CONSIDERATIONS FOR THE NEXT PHASE OF THE U.S. BRAIN INITIATIVE. SO ONE OF THE THINGS I WAS ASKED TO TALK ABOUT IS TO THINK ABOUT OPPORTUNITIES/ISSUES FOR NIH BRAIN INITIATIVE 2.0. ONE OF THE THINGS I HOPE YOU WILL TAKE FROM MY TALK IS THE IDEA THAT IT WOULD BE FANTASTIC FOR THE NIH BRAIN INITIATIVE TO MAINTAIN INTENTIONAL CONNECTION TO INTERNATIONAL NEUROSCIENCE EFFORTS INCLUDING THE INTERNATIONAL BRAIN INITIATIVE. ONE OF THE RESOUNDING MESSAGES THAT WE WERE RECEIVING FROM THE SCIENTIFIC COMMUNITY IS THAT THE QUESTIONS RAISED BY USE, DEVELOPMENT APPLICATION OF NEUROTECHNOLOGY ARE TRULY INTERNATIONAL QUESTIONS. WE OBSERVE SHARING BEST PRACTICES IN NEUROETHICS AND RESPONSIBLE RESEARCH INNOVATION CAN HAVE A POSITIVE EFFECT. HOPE WHEN YOU SEE THE PAPERS NEXT MONTH WILL HELP FURTHER THE UNDERSTANDING HOW CROSS CULTURAL PERSPECTIVES PLAY AN IMPORTANT ROLE THINKING ABOUT NEUROETHICS ROAD MAPS. FINALLY I THINK THAT THIS HIMSELF TO COMPLIMENT EXISTING NEUROETHICS EFFORTS IN INTERNATIONAL SPACE INCLUDING THAT OF INTERNATIONAL NEUROETHICS SOCIETY AND CENTERS AND UNIVERSITIES AROUND THE WORLD ENGAGING IN NEUROETHICS WORK. THE SECOND POINT I WOULD LIKE TO LEAVE YOU WITH, THINKING ABOUT NEUROETHICS AS A GATEWAY TO PUBLIC ENGAGEMENT. IN THE DIFFERENT CONVERSATIONS WE HAVE BEEN HAVING, NEUROETHICS OR PUBLIC ENGAGEMENT HAS BEEN HIGHLIGHT AS HIGH PRIORITY THE IDEA ISSUES OF NEUROETHICS ARE IMPORTANT TO ALL MEMBERS OF SOCIETY. COGNITIVE ENHANCEMENT, BRAIN PRIVACY, PERSONAL RESPONSIBILITY, THOSE TYPES OF QUESTIONS ARE NATURAL ENTRY POINTS TO PUBLIC ENGAGEMENT. I WOULD LIKE TO POSE, COULD THIS BE ONE MOON SHOT FOR NEUROETHICS? VERY DIFFICULT TASK TO THINK ABOUT MEANINGFUL PUBLIC ENGAGEMENT IN SCIENCE BUT PERHAPS HAVING THIS AS ENTRY POINT. COULD HELP TO MAKE THAT MEETING CONCRETE. I WAS AT A PUBLIC ENGAGEMENT NEUROSCIENCE WORKSHOP FEW MONTHS AGO AND THIS WAS A GROUP OF PEOPLE WHO COME FROM THE SPACE OF SCIENCE MUSEUMS AND CENTERS AROUND THE WORLD, BRAIN FACTS SCIENCE COMMUNICATION OUTLETS AND ONE OF THE SLIDES THAT WAS POSED WAS FROM MUSEUM YOU THINK ABOUT THE SPECTRUM OF INTERACTION WITH PUBLIC EXPERT INTERACTION RANGE IN DEPTH FROM PUBLIC UNDERSTANDING TO PUBLIC ENGAGEMENT SO WE THINK ABOUT VARIOUS TYPES OF ENGAGEMENT SO FROM THE PUBLIC UNDERSTANDING SIDE ADVISING INFORMAL EDUCATORS MAKING PREGNANTS TO THE PUBLIC, WORKING TO BUILD COMMUNICATION SKILLS. WORKING AND VALUING PUBLIC INPUT OR ACTING IN SOME WAY BIDIRECTIONAL DIALOGUE IS HOLY GRAIL IN SCIENCE, I WILL LIKE TO POSE THAT IN THE BRAIN ANYWHERE ACTIVE. WITH THAT I WOULD LIKE TO CLOSE MY TALK. THANK YOU FOR INVITING ME A NON-NEUROETHICIST TO SPEAK TODAY. I WISH YOU BEST OF LUCK TO THE SUBGROUP AS YOU THINK ABOUT THE ROADMAP FOR NEUROETHICS NEXT PHASE. HAPPY TO TAKE ANY QUESTIONS. PAUSE PLUS [APPLAUSE] >> OTHER QUESTION FOR CAROLYN? >> THE IDEA OF NEUROETHICS AND PUBLIC ENGAGEMENT IS A VERY GOOD IDEA. THINKING INTERNATIONALLY THOUGH, PUBLIC ENGAGEMENT MIGHT BE PERFORMED IN DIFFERENT COUNTRIES DIFFERENT BRAIN INJURIES HOW DO YOU VIEW THAT INTERACTION? >> THANK YOU VERY MUCH, JIM, EXCELLENT QUESTION. ONE OF THE THINGS WE HAVE BEEN WORKING ON INSPIRED BY GLOBAL NEUROETHICS SUMMIT HELD IN OCTOBER. IS THINKING ABOUT HOW DO WE START IN KNEW ETHICS PUBLIC ENGAGEMENT IN THE INTERNATIONAL SPACE? AND ONE OF THE INTERESTING THINGS WE HAVE BEEN LEARNING AS WE HAVE BEEN STARTING TO THINK ABOUT LANDSCAPE SURVEY FOR PUBLIC ENGAGEMENT NEUROETHICS IS THERE ARE INTERNATIONAL ORGANIZES THAT FOCUS ON PUBLIC ENGAGEMENT SO THIS INCLUDES ORGANIZATIONS WITH THE HUMAN BRAIN PROJECT, THEY HAVE THIS DANISH BOARD OF FOUNDATION TECHNOLOGY THAT DOES INCREDIBLE& WORK BUT BEYOND THAT, NETWORK OF SCIENCE MUSEUMS AND CENTERS AROUND THE WORLD PROVIDES NETWORK TO DRAW FROM IN TERMS OF THINKING DIFFERENCES ACROSS COUNTRIES HOW THEY ENGAGE WITH PUBLIC. SO THAT'S A STARTING POINT BUT BEYOND THAT, THE OTHER STEP HERE IS TO INTERACT SO I MENTIONED INTERNATIONAL BRAIN INITIATIVE AS VENUE FOR DIFFERENT LEADERS TO TALK TO EACH OTHER. HAVING THIS AS CASE STUDY OR MODEL TO START PUTTING THREATS INTO PUBLIC ENGAGEMENT AROUND THE NEUROETHICS SPACE TO TEST OUT WHAT WORKS AND WHAT DOESN'T. ONE OF THE THINGS I HAVE BEEN HEARING IS WHAT IS CRITICAL TO THINK ABOUT IS HAVING METRICS AND EVALUATION FOR UNDERSTANDING HOW IMPACTFUL THESE DIFFERENT APPROACHES ARE. >> IF YOU DON'T MIND, SECOND QUESTION. PUBLIC ENGAGEMENT IS ONE THING. THE OTHER THING IS WE NEED TO ENGAGE RESEARCHERS WITH ETHICISTS AND THINKING MORE EXTENSIVELY ABOUT THAT. AS A FUNDING ENTITY, HOW DO YOU TRY TO STIMULATE NEUROETHICISTS OR ETHICISTS INVOLVED IN THE WORK YOU GUYS FUND? >> THANK YOU VERY MUCH FOR THAT QUESTION. SPEAKING ON BEHALF OF THE KAVLI FOUNDATION AS I MENTIONED EARLIER IN MY TALK ONE ASPECT OF OUR MISSION IS INCREASING PUBLIC UNDERSTANDING OF SCIENCE. THAT SIDE OF OUR MISSION FOCUS ON SCIENCE SUPPORT BUT STARTING TO BUILD OUT THINKING HOW WE CAN HELP PUBLIC UNDERSTANDING OF SCIENCE PIECE. AS A START TO THAT, IN PREVIOUS YEARS WHAT WE HAVE BEEN HELPING TO SUPPORT ARE SCIENCE COMMUNICATION WORKSHOPS AND VARIOUS UNIVERSITIES AROUND THE COUNTRY. THIS IS WITH ALLEN ALDA CENTER FOR COMMUNICATION SCIENCE. THERE'S OTHER COMMUNICATION SCIENCE COMMUNICATION TRAINING GROUPS AS WELL WHICH IS VERY INTERESTING SO ONE OF THE THINGS WE HAVE BEEN DOING IS TRYING TO -- THIS IS OUR PUBLIC UNDERSTANDING SIDE OF THE FOUNDATION, TRYING TO GET TOGETHER THESE DIFFERENT ORGANIZATIONS, DIFFERENT NETWORKS OF FOLKS TO MORE SYSTEMATICALLY UNDERSTAND HOW DIFFERENT ORGANIZATIONS TRAIN SCIENTISTS TO COMMUNICATE ABOUT SCIENCE. BY DEVELOPING THIS NETWORK YOU CAN EXPAND IT BEYOND SCIENCE COMMUNICATION ORGANIZATION LEVEL TO HELPING TO ENGAGE UNIVERSITIES WHICH OFTEN DON'T FEEL SUPPORT, THE ENGAGEMENT TO HELP SUPPORT SCIENTISTS TO COMMUNICATE ABOUT SCIENCE, AND THINKING ABOUT THIS LARGER LANDSCAPE, THAT ALSO INCLUDES PRIVATE FOUNDATION. [APPLAUSE] >> SO OUR NEXT TALK IS ENTITLED RESPONSIBLE RESEARCH IN NEUROETHICS THE CASE OF THE HUMAN BRAIN PROJECT, ARLEEN SALLES, AND IN PARTICULAR ADDRESSING ARLEEN'S WORK ON THOSE THINGS THAT MAKE US HUMAN I WANT TO THANK SUBGROUP FOR INVITING ME TO THIS EVENT. I'M NOT GOING TO DESCRIBE THE HUMAN BRAIN PROJECT. I ASSUME MOST OF YOU KNOW WHAT WE'RE TRYING TO DO. TO CONTRIBUTE TO MORE UNDERSTANDING OF BRAIN AND DISEASES AN CONSCIOUSNESS. WHAT I WOULD LIKE TO DO IS FOCUS HOW WE HAVEN'T TRIED TO INTEGRATE RESPONSIBLE RESEARCH INNOVATION ETHICS AND NEUROETHICS INTO THE PROJECT. IN ORDER TO DO THAT I'LL PROVIDE A GENERAL DESCRIPTION OF ETHICS STRUCTURES AND ROLES WITHIN THE HPV, THEN BRIEFLY EXPLAIN RESPONSIBLE RESEARCH AND INNOVATION AN AREA FRAMEWORK, THAT IS SO IMPORTANT HPV THEN FOCUS ON DISTINCTIVE FEATURES, OF THE PROJECT, FINALLY, OR SPECIFICALLY ETHICS IN THE PROJECT. FINALLY BRIEFLY ADDRESS TOPICS, CHALLENGES AND THE ROAD AHEAD. I WOULD LIKE TO START BY PROVIDING A DESCRIPTION. WHAT YOU SEE HERE IS STAKEHOLDER BOARD, SCIENCE INFRASTRUCTURE BOARD THAT HAS REPRESENTATIVES, THESE ARE SUBPROJECTS SO THERE IS ALSO A REPRESENTATIVE OF SUBPROJECT WHICH IS ETHICS AND SOCIETY. THEN SUBPROJECTS ONE THROUGH 11 ARE THE HPV RESEARCH LABS, MANAGE. AND ETHICS AND SOCIETY. SUBPROJECT 12. NOT GOING TO IF CUSS YET, I WILL TALK ABOUT ETHICS AND SOCIETY IN THE REST OF THE TALK BUT NOW I WOULD LIKE TO TELL YOU BRIEFLY, IN ADDITION TO WHAT I JUST SHOWED YOU WE HAVE ETHICS ADVISORY BOARD, EXTERNAL, THE ETHICS ADVISORY BOARD IS FORMEDDED BY GROUP OF EXPERTS ADVISE DIRECT TRAIT ON THE ETHICAL LEGAL SOCIAL PHILOSOPHICAL ISSUES RAISED BY RESEARCH EITHER UNDERTAKEN OR PLANNED. THEY ACT -- COULD BE REQUEST BY SOME HPV RESEARCHERS OR MAYBE ON THEIR OWN INITIATIVE. WE ALSO HAVE WORKING GROUP CREATED IN 2016. THIS IS TO RESPOND TO CHALLENGES OF SUPPORTING DATA PROTECTION. IN FACT BECAUSE OF THOSE CHALLENGES NUMBER OF INTERCONNECTED WORK GROUP IS NOT IN SB 12, NOT IN ETHICS AND SOCIETY THAT IS CLOSELY CONNECTED TO ETHICS AND SOCIETY. ALSO WORKS WITH DIFFERENT SUBPROJECT AND DEVICES SCIENCE AND INFRASTRUCTURE BOARD. IN ADDITION TO THAT, WE HAVE A NEW WORKING GROUP, THAT'S THE DUAL USE WORKING GROUP THAT WAS CREATED TWO MONTHS AGO, THEY DIDN'T HAVE THE FIRST MEETING YET. THEY WILL IN FEBRUARY ACTUALLY. AND WORKING GROUP IS DIRECT REACTION TO THE OPINION RESPONSIBLE DUAL USE WHICH I WILL MENTION BRIEFLY LATER ON. IN ANY CASE, WHAT THIS GROUP IS TASKED WITH DOING IS DEVELOP AND IMPLEMENT AN ACTION PLANNED FOLLOW-UP TO THE OPINION MENTION LATER AND TO ENSURE THE HUMAN BRAIN PROJECT ACTS RESPONSIBLY WITH REGARD TO POTENTIAL DUAL USE OF CONCERN OF RESEARCH AND INNOVATION. WE ALSO HAVE A GENDER ADVISORY COMMITTEE (INDISCERNIBLE) TRIES TO RAISE AWARENESS AND TRIES TO PROMOTE DIFFERENT AREAS OF RESEARCH. FINALLY WE HAVE INDEPENDENT (INDISCERNIBLE) THIS IS AS I SAID BEFORE TOTALLY INDEPENDENT ROLE, THE ONLY BUDS PERSON IS TASKED WITH REPORTING AND HELPING TO RESOLVE CONFLICTS OF INTEREST. CASES SIMILAR PERSON IF PARTICULAR INVESTIGATION AND SO ON. SO THIS IS TO GIVE YOU A GENERAL IDEA OF ETHICS AND HPV, NOW FOCUS ON SPECIFICALLY ETHICS AND SOCIETY. THE MAIN MISSION OF ETHICS AND SOCIETY IS TO PROMOTED RESPONSIBLE RESEARCH AND INNOVATION PRACTICE AND CAPACITYINGS IN THE HPV. SO TO GREAT EXTENT IN ORDER TO UNDERSTAND WHAT WE DO, WE NEED TO UNDERSTAND RESPONSIBLE RESEARCH AND INNOVATION. DEFINED AS ONGOING PROCESS OF ALIGNING RESEARCH AND INNOVATION TO THE VALUES NEEDS AND EXPECTATIONS OF SOCIETY. THIS IS AN INTERACTIVE PROCESS THAT TAKES STARTING POINT, THE FACT THAT INNOVATION HAS PROFOUND GLOBAL AND INTERGENERATIONAL IMPACT ON SOCIETY. SECOND, POLICY APPROACHES THAT FOCUS HON RISK ASSESSMENT ARE LIMITED. THIRD, THERE IS A NEED TO ADDRESS WHETHER KNOWN SOCIETAL GRAND CHALLENGES, EMPLOYMENT, SENSE OF WELL BEING, ECONOMIC AND SO ON, SOCIAL INCLUSIVENESS AND OTHERS. IN THE ROI FRAMEWORK LEGAL ETHICAL AND SOCIAL ISSUES FORM THE TRAJECTORY OF THE WORK AND FIT INTO THE SCIENTIFIC AGENDA. IT IS ALSO WORTH NOTING THE NOTION OF RESPONSIBILITY UNDERLYING RESPONSIBLE RESEARCH AND INNOVATION IS NOT LIMITED TO RESPONSIBLE BEHAVIOR OF SPECIFIC SCIENTISTS. RATHER, THE NOTION OF RESPONSIBILITY IS SUPPOSED TO FOCUS ON PROCESSES AND RESEARCH ENVIRONMENT AND EXTENT THEY ENCOURAGE OR LIMIT CAPACITY OF THOSE INVOLVED TO IDENTIFY ETHICAL ISSUES REFLECT UPON THEM, CONSIDER POTENTIAL SOCIAL IMPLICATIONS AND SO ON. IN THE HPV, THE AREA FRAMEWORK, IS USED TO IMPLEMENT RESPONSIBLE RESEARCH AND INNOVATION. THE AREA FRAMEWORK COVERS FOUR ELEMENTS. ANTICIPATION, ANTICIPATION MEANS IDENTIFYING DESCRIBING EXPLORING INTENDED AND EVEN AND EVEN INTENDED ECONOMIC SOCIAL ETHICAL IMPACTS OF THE RESEARCH. THERE ARE DIFFERENT METHODOLOGIES USED WITHIN THE AHPP FORCES SCENARIOS THAT ARE DESIGNED TO TO IDENTIFY IMPLICATIONS OF HPP RESEARCH AT THE EARLY STAGE. IN FACT, THE RESEARCH OF THE LAB HAS RESULTED IN THREE REPORTS, ONE OF MEDICINE, OTHER ON NEUROSCIENCE AND THE LAST ON ICD AND (INAUDIBLE). THE SECOND ELEMENT OF THE AREA FRAMEWORK IS REFLECTION. REFLECTION ON WHAT, REFLECTION ON UNDERLYING PURPOSES, MOTIVATIONS, IMPACTS, POTENTIAL UNCERTAINTIES. ASSUMPTIONS. QUESTIONS. IN THE HPP SUCH REFLECTION IS CARRIED OUT BUT ALL OF US THERE IS A SPECIFIC PHILOSOPHICAL REFLECTION I WILL SAY MORE ABOUT THIS LATER, THAT IS CARRIED OUT BY OUR GROUP WHICH IS NEUROETHICS AND PHILOSOPHY, THE THIRD ELEMENT IS ENGAGEMENT. ENGAGEMENT MEANS OPENING UP, THIS IS SOMETHING THAT CERTAINLY CAROLINE HAS FOCUSED ON QUITE A BIT. ENGAGEMENT IS OPENING UP, INCLUSIVELY AS POSSIBLE. TO BROADER AUDIENCE, TRYING TO INVITE WHAT DIFFERENT PUBLICS HAS TO SAY AND TAKING THE DIFFERENT PERSPECTIVES INTO ACCOUNT WHEN TRYING TO DETERMINE THE IMPACTS OF THEIR RESEARCH. IN THE HPP THE DANISH BOARD OF TECHNOLOGY IS IN CHARGE OF SUCH PUBLIC ENGAGEMENT AND DO SO IN A VARIETY OF WAYS, DIFFERENT METHODOLOGIES USED. QUALITATIVE, QUANTITATIVE RESEARCH, SO ON. FINALLY, THE LAST ELEMENT IS ACTION. ACTION AND RESPONSIVENESS. THE MAIN IDEA IS THE ANTICIPATION REFLECTION ENGAGEMENT NEED TO BE USED AT SOME POINT, IN ORDER TO SHAPE THE RESEARCH. AND TO GREAT EXTENT THIS IS WHAT ETHICS SUPPORT IS GOING TO -- ACTUALLY DOING WITHIN THE HPP. TAKING INTO ACCOUNT ANTICIPATION REFLECTION ENGAGEMENT TO HELP RESEARCHERS ETHICAL AWARENESS TO COME UP WITH COMPLIANCE AND TOOLS AND SO ON. SO IN FACT, WE CAN SEE WHAT ETHICS SOCIETY IS. WE HAVE IT ANTICIPATION, NEUROETHICS AND PHILOSOPHY. ENGAGING WITH DIFFERENT PUBLICS. THEN WE HAVE ETHICS SUPPORT AND ETHICS SUPPORT FOCUSES ON COMPLIANCE AND ALSO IS HELPED IN THIS BY TWO THINGS. WHAT IS KNOWN AS ETHICS PROGRAM I CAN EXPLAIN LATER IN THE Q&A AND WE ALSO HAVE A DATA PROTECTION OFFICER EPO, THIS IS A RESPONSE TO THE OPINION. FINALLY WE HAVE SCIENTIFIC COORDINATION WHICH HAS TO DO WITH OUR COMMUNICATION. AND HOW RELATE TO OTHERS AND SO ON. SO WHAT ARE THE CHARACTERISTICS OR SOME INTERESTING FEATURES OF THE HPP? ETHICS IN THE HPP, HPP WAS QUICK TO RECOGNIZE AND ENDORSE IMPORTANCE OF ADDRESSING ETHICAL CONCERNS FROM THE VERY BEGINNING. APPLYING THE STAGES IN 2010 THERE WAS TALK ABOUT WHAT OR HOW ARE WE GOING TO APPROACH THE DIFFERENT ISSUES PHILOSOPHICAL, ETHICAL AND SO ON RAISED BY RESEARCH AND EVEN THOSE EARLY STAGES THE CONCLUSION WAS THAT IT WAS IMPORTANT THERE WAS A PORTION OF THE PROJECT DEVOTED TO RESEARCH IN HUMANITIES AND SOCIAL SCIENCE. SO IN THE HPP, ETHICS AND SOCIETIES PART OF THE CORE PROJECT. NOT EXTERNAL BODY OR PART OF THE PROJECT. THE SECOND IMPORTANT INTERESTING CHARACTERISTIC IS THAT WHEN WE TALK ABOUT REFLECTION WE INCLUDE ETHICAL REFLECTION, APPLIED ETHICS APPROACH, WE ARE TALKING SOCIOLOGICAL REFLECTION AND ALSO PHILOSOPHICAL REFLECTION SO THAT'S WHY WITHIN THE, HPP AS I SHOWED BEFORE, ONE LINE OF -- IS NEUROETHICS AND PHILOSOPHY, THAT MEANS TRYING TO ADDRESS DIFFERENT PHILOSOPHICAL ISSUES THAT ARE RAISED BY BRAIN RESEARCH. SO TO THIS EXTENT WE CAN SAY THAT WITHIN THE HPP, THERE IS A BROAD UNDERSTANDING OF NEUROETHICS NOT JUST A KIND OF APPLIED NEUROETHICS BUT CONCEPTUAL AND PHILOSOPHICAL. WIDE IS THAT? BECAUSE FROM THE VERY BEGINNING, AND AGAIN TALKING ABOUT FIRST IN TEN, WHEN THEY WERE HAVING THE FIRST CONVERSATIONS WHAT THE HUMAN BRAIN PROJECT WAS GOING TO BE LIKE AND THE IDEA WAS THAT EMPIRICAL DIMENSION IS EVIDENTLY EXTREMELY IMPORTANT BUT SO IS CONCEPTUAL DEVELOPMENT AND THAT HAS SHAPE BY PHILOSOPHICAL RESEARCH. WE HAVE ACTUALLY A FRAMEWORK OF OUR THAT CALLS FOR ADDRESSING A NUMBER OF FACTORS, IMPACT BY WAY WHICH WE TAKE INTO ACCOUNT SOCIAL BENEFITS, BACKGROUND RESEARCH PROCESS, SO WE ARE DOING THIS IN A CONCEPTUALLY CLEAR WAY, WE ARE DOING THIS ALSO ENGAGING IN PHILOSOPHICAL REFLECTION AS WELL. WHAT ARE THE TOPICS THAT FOCUS ON? I JUST PROVIDED A LIST OF TOPICS, CONSCIOUSNESS CERTAINLY IS AN AREA THAT HAS RECEIVED A LOT OF ATTENTION WITHIN THE HPP. NOT ONLY FROM NEUROSCIENTISTS BUT FROM THE PHILOSOPHY GROUP T. DATA PROTECTION AS WELL, AND ACTUALLY GOING TO SAY MUCH ABOUT PROTECTION NOW BECAUSE WE ARE TALKING ABOUT THE OPINION IN A MINUTE. DO I USE THE SAME. THESE ARE ALL TOPICS, FIRST FOUR TOPICS WE HAVE IDENTIFIED AND ACTIVELY ADDRESSED ACTUALLY. WE HAVE PRODUCTS, WE HAVE PAPERS, WE HAVE THE OPINIONS, ON MANY OF THESE TOPICS. OTHER ADDITIONAL ISSUES VERY IMPORTANT. WE ARE ADDRESSING AS WELL. COMMUNITY BUILDING, IDENTITY, HUMAN IDENTITY JUST BACK TO SOMETHING TIM SAID F RESEARCH HUMAN ENTITY HAS TO DO WITH TWO THINGS, FIRST ONE OF THE GOALS OF HPP IS TO -- THIS APPEARS IN THE FRAMEWORK IS TO UNDERSTAND BETTER WHAT MAKES US HUMAN. SO WE HAVE THIS DESIRE TO THINK THAT NEUROSCIENCE WILL ALLOW US TO KNOW WHAT BEING HUMAN IN IN MORE COMPLETE WAY. IN ADDITION TO THAT, IN OUR PUBLIC ENGAGEMENT WORK WE HAVE NOTICED ONE OF THE MAIN PREOCCUPATIONS OF DIFFERENT PUBLICS IS EXTENT TO WHICH CERTAIN NEUROTECHNOLOGIES WILL SET IN OUR HUMANITY, BE HUMANIZED AS, THIS APPEARS CONSTANTLY, THE NOTION OF DEHUMANIZATION. SEEMS TO US THOUGH, WHAT WE ARE TALKING ABOUT POSSIBILITY OF KNOWING WHAT MAKES US HUMAN. ON THE OTHER HAND WE ARE ADDRESSING CONCERNS ABOUT DEHUMANIZATION, WE NEED FIRST TO UNDERSTAND WHAT HUMAN IDENTITY IS. SO GROUP OF PHILOSOPHERS AND NEUROSCIENTISTS WITHIN THE HPP TRYING TO ADDRESS THIS ISSUE AS WELL. I HAVE INCLUDED A LIST OF -- SOME PAPERS WE HAVE WRITTEN, DIFFERENT MEMBERS OF SB 12 WRITTEN ON OUR EXPERIENCE TRYING TO INTEGRATE ETHICS AND NEUROETHICS INTO THE PROJECT. THESE PAPERS FOCUS BASED UPON OUR EXPERIENCE TRYING TO DO THIS. THESE ARE NOT THE ONLY THING WE HAVE WRITTEN IN FACT IN ORDER TO CONCEAL YOU CAN GO TO OUR WEBSITE AND YOU WILL SEE THAT YOU HAVE DESCRIPTION OF EACH OF THE WORK PACKAGES AND IF YOU CLICK ON THE PACKAGES YOU WILL BE ABLE TO ACCESS THE BIBLYOGRAPHY IN EACH OF THE WORK PACKAGES. EVERYTHING IS IN THE WEBSITE. NOW I WOULD LIKE TO FOCUS ON THIS. ON ETHICS AND SOCIETY ETHICS AND SOCIETY OPINIONS. ETHICS AND SOCIETY OPINIONS ARE WORDS WE UNDERTAKE JOINTLY. THEY ARE THE PRODUCT OF WORK OF THE WHOLE -- IN FACT WE HAVE ACTUALLY WRITTEN TWO OPINIONS, ONE OPINION DATA PROTECTION AND PRIVACY. IT IS FEST DATA PROTECTION AND PRIVACY EXTREMELY IMPORTANT FOR THE HPP. DATA GOVERNANCE IS AN ABSOLUTE MUST. COUPLE OF YEARS AGO WE WROTE OPINION SHAH SHAPED GOVERNANCE WITHIN THE HPP. THE STRUCTURE OF OPINIONS IS SIMILAR. WE START BY IN THE CASE OF THIS OPINION IN PARTICULAR STARTED BY TRYING TO UNDERSTAND THE DIFFERENT PRIVACY RELATED CONCERNS WITHIN THE HPP. AND AGAIN WITHIN THE HPP WE HAVE A NUMBER OF -- DOING DIFFERENT THINGS SO SOME CASES DATA COLLECTORS. IN OTHER CASES DATA USERS. THE CONCERNS MAYBE COMPLETELY DIFFERENT IN MANY RESPECTS SO WE FIRST TRY TO UNDERSTAND, WHAT WERE CONCERNS IN HPP. THEN WE DID SOME CONCEPTUAL WORK HOW TO UNDERSTAND PRIVACY DATA AND DEVELOPMENT CONCEPTS. THEN WE FOCUSED ON ETHICAL PRINCIPLES USUALLY EMPLOYED TO ADDRESS THOSE CONCERNS. ALSO WE FOCUS ON THE REGULATORY SITUATION PARTICULARLY IN EUROPE. WE DID PUBLIC ENGAGEMENT AND THE OPINION FINISHES WITH SOME RECOMMENDATIONS TO THE HPP. AS A RESULT OF THE OPINION SAID BEFORE WE HAVE TODAY DATA GOVERNANCE WORKING GROUP AND WE HAVE DATA PROTECTION OFFICER AMONG OTHER THINGS. WE ALSO PUBLISHED RECENTLY, A MONTH AGO PUBLISHED THE OPINION RESPONSIBLE DUAL USE IN NEUROSCIENCE AND NEUROTECHNOLOGY. WE FOCUSED ON POTENTIAL DUAL USES THAT HAVE NEGATIVE IMPACT ON SOCIETY. WHAT WE DID IN THIS CASE IS FIRST PROVIDE COMMON UNDERSTAND OR TRY TO UNDERSTAND HOW PEOPLE INTERPRET DUAL USE WHERE THEY THINK, WHETHER THE EUROPEAN UNION OPINION OF DUAL USE. WHAT IS RESPONSE POSSIBLE HUMAN USE WE TRIED TO DO IN THIS OPINION IS USE PRINCIPLES OF RESPONSIBLE RESEARCH AND INNOVATION TO ASSESS POTENTIAL DUAL USE CASES. AGAIN WE PROVIDE RECOMMENDATIONS, IT IS BECAUSE OF THOSE RECOMMENDATIONS THAT HPP GOVERNANCE, GAVE US MANDATE TO CREATE DUAL USE WORKING GROUP WE START GOING TO START IN FEBRUARY WORKING ON DEVELOPMENT OF THIS. SO WHAT IS THE ROAD AHEAD? AND CHALLENGES. ONE OF THE CHALLENGES IS THAT WAIT TO COLLABORATE IN THE HPP WE HAVE A IN NUMBER OF DIFFERENT DISCIPLINES. AND CROSSING THE DISCIPLINARY BOUNDARIES IS ALWAYS A CHALLENGE. AND IS A CHALLENGE WE CONTINUE -- WE CONTINUOUSLY AWARE OF. AND CERTAINLY WILL WORK ON. RESEARCH IS EXTREMELY IMPORTANT BUT AGAIN SOMETHING THAT IS -- WITH CONCEPT TRYING TO IMPROVE WAY TO DO SO AND TO REACH TO THE DIFFERENT SCIENTISTS DIFFERENT WAYS TO PROMOTE THIS RESEARCH AWARENESS CONSIDERED TO BE KEY. WE CAN BE HAPPY WITH COMPLIANCE. WE BELIEVE IT IS IMPORTANT TO PROMOTE ETHICAL SENSITIVITY. THAT IS BOUND TO BE COMPLICATED. I THINK IT'S ANOTHER CHALLENGE. THIS IS AN IMPORTANT POINT GOES BACK TO CERTAIN EXTENT SOMETHING SAID BEFORE, PUBLIC ENGAGEMENT, PUBLIC ENGAGEMENT IS KEY. BUT IT'S IMPORTANT TO KEEP IN MIND OR BE AWARE THE RISK THAT IS SOME SCIENTISTS MIGHT THINK NEUROETHICS IS JUST PUBLIC ENGAGEMENT AND COMPLIANCE. I AM VERY AWARE OF THAT POSSIBILITY. SO WE DO BELIEVE IN PUBLIC ENGAGEMENT, WE DO IT ACTIVELY AND WE HAVE AN EXCELLENT TEAM, WE ALSO HAVE TO KEEP IN MIND NOT JUST COMPLIANCE, NOT JUST CHECKING IN THE ETHICS LIST OR ENGAGING WITH THE PUBLIC, IT'S REFLETING, SUCH REFLECTION NEEDS TO BE MUCH MORE THAN JUST OKAY, LET'S APPLY A COUPLE OF PRINCIPLES SO THIS IS SOMETHING THAT FOR US WE KEEP IN MIND. WE THINK IT CAN ALWAYS BE ENHANCED. FINALLY, I WANT TO VERY BRIEFLY -- BECAUSE I HAVE -- VERY BRIEFLY, NOTE ANOTHER THING WE CONSIDER TO BE VERY IMPORTANT IS FIRST EFFORTS. ONE OF THE THINGS, AGAIN AS SAID BEFORE WE ARE TRYING TO DO IS RAISE RESEARCHERS AWARENESS AND DOING SO ALSO -- WE THINK NEEDS TO ACKNOWLEDGE THE FACT THAT HOW ETHICAL ISSUES ARE IDENTIFIED AND ADDRESSED AND VALUES UNDERLINE SOME OF THE RESEARCH, CHANGE ACCORDING TO CULTURE, WE NEED TO BE AWARE OF THAT. WITHOUT ARGUING FOR A RELATIVE POSITION WHICH I THINK WE NEED TO BE INFORMED OF THE FACT DIFFERENT CULTURE MAY SEE THINGS IN DIFFERENT WAYS, MAY EVEN USE DIFFERENT CONCEPTS TO ADDRESS SOME ISSUES. TO THAT EXTENT WE ARE EXCITED TO BE ABLE TO BE PART OF THE NEUROETHICS SUMMIT, WE'RE PARTICULARLY EXCITED WITH THIS PAPER BY NOW SHOWN THREE TIMES, THIS SHOWS WE ARE HAPPY WITH THIS PAPER BECAUSE WE HAVE BEEN ABLE TO ACTUALLY IDENTIFY ARTICULATE NUMBER OF QUESTIONS WE BELIEVE SHOULD BE TAKING INTO ACCOUNT BY NEUROSCIENTISTS AND ARE ADAPTABLE TO DIFFERENT CULTURES SO ON. TO THAT EXTENT I'M PARTICULARLY HAPPY TO BE ABLE TO HELP AS PART OF THE INTERNATIONAL BRAIN INITIATIVE AND THE WORKING GROUP BECAUSE WE BELIEVE IT IS IMPORTANT TO HELP MAKE NEUROETHICS STRONGER, NEUROETHICS AS SAID BEFORE NOT JUST APPLIED ETHIC, SOMETHING MUCH MORE -- MUCH RICHER AND REFLECTIVE. LOOKING FORWARD TO YOUR QUESTIONS. THANK YOU VERY MUCH FOR YOUR TIME. >> THIS TOPIC IS OPEN FOR DISCUSSION. >> NOW I CAN TALK. THANK YOU VERY MUCH. WONDER IF YOU COULD TELL US MORE ABOUT THE ETHICS, AS YOU CAN EXPLAIN IT. SECOND QUESTION, DOES ETHICS AND SOCIETY HUMAN BRAIN PROJECT FUND NEUROETHICS RESEARCH? >> THANK YOU FOR THOSE TWO QUESTIONS. THE ETHICS REPERTOIRE PROGRAM IS A VERY INTERESTING AND NOVEL APPROACH. WHAT WE HAVE IS ONE PERSON IN EACH SP WHO IS A SCIENTIST FROM THAT SP AND WHO IS ETHICALLY AWARE OF SOME OF THE ISSUES RAISED BY THE SP. THIS PERSON, BEGIN -- COULD BE SCIENTIST, AN ACADEMIC, IS IN CONTACT BOTH WITH ETHICS ADVISORY BOARD AND WITH ETHICS SUPPORT SB 12. WHAT THAT IS, IS IN PRACTICE, WE HAVE NOT ONLY WE HAVE FEEDBACK FROM PEOPLE DOING RESEARCH IN THEIR THEMES BUT ALSO WE ARE ABLE TO REACH OUT TO THEM AND AT THE SAME TIME REPERTOIRES BRING TO EACH SP SOME KNOWLEDGE ABOUT ETHICS, SOME EMPHASIS ON THE NEED TO COMPLY, WITH CERTAIN REGULATIONS AND SO ON, SO THE ETHICS REPERTOIRE PROGRAM IS VERY IMPORTANT TO US BECAUSE IT ALLOWS US TO KNOW FIRSTHAND WHAT ARE SOME OF THE ISSUES THAT SCIENTIST ARE FACING WHEN IN THE MIDDLE OF THESE PROJECTS AND IT HAS BEEN SO FAR VERY SUCCESSFUL. NOW WE HAVE APPROXIMATELY 4.35% AWARD TO ETHICS AND SOCIETY AND ETHICS AND SOCIETY HAS AN AREA ON ETHICS AND PHILOSOPHY ALSO FUNDING. >> COUPLE OF QUESTIONS FOR YOU AS WELL. IT IS INCREDIBLE THE STRUCTURE IN PLACE IS REMARKABLE. YOU CONSIDER THE DIFFERENT THINGS DATA YOU PRESENTED AND SLIDES PRESENTED. SO IF YOU ARE INTERESTED IN INTENDED AND UNINTENDED CONSEQUENCES OF RESEARCH,, SCIENCE CAN DRIVE THE INTENDED CONSEQUENCES BUT REALLY PUBLIC HYPE FOR UNINTENDED. HOW DO YOU SEPARATE THAT? HOW DO YOU DEAL WITH THE CONSEQUENCES AND SCIENTIFIC ROBUST? >> THANK YOU FOR THE QUESTION. IT IS INTERESTING. THE UNINTENDED CONSEQUENCE. LET ME PUT IT THIS WAY. HPP ETHICS SOCIETY GROUP STARTING POINT IDEA, THERE IS NOT ONE GROUP THAT CAN NECESSARILY DETERMINE WHAT ARE INTEND AND UNINTENDED CONSEQUENCE. CERTAINLY THE INTENDED CONSEQUENCES YOU MIGHT MORE OR LESS KNOW BUT UNINTENDED CONSEQUENCES OR WHAT IS UN INTENDED CONSEQUENCE AND PROBLEMATIC UNINTENDED CONSEQUENCE HAS TO BE RESULT OF BROAD COLLECTIVE INTEGRATION. THAT'S WHY THERE CEASE SO MUCH ONLYSIS ON ANTICIPATION CONNECTED TO PUBLIC ENGAGEMENT AS WELL. TO THAT EXTENT, THAT IS A REASON I REFER IN MY TALK BY LAB. FANTASTIC JOB CREATING SCENARIOS. THAT MAKE PEOPLE START THINKING WHAT IF. THE WHAT IF. IS A QUESTION MANY TIMES NOT CONSIDERED TO BE IMPORTANT IN CERTAIN CONCEPTS IN CERTAIN CONTEXT, WE BELIEVE IT IS A VERY IMPORTANT QUESTION SO ON THE BASIS OF THAT WHAT IF, NUMBER OF PEOPLE REFLECT ISSUES OTHERWISE WOULDN'T REFLECT. AND WHAT WE'RE TRYING TO DO IS EXACTLY TO PROMOTE THAT KIND OF REFLECTION WHICH USUALLY LEADS TO SITUATIONS WHICH THERE ARE NO EASY ANSWERS. BY NOW IT SEEMS CLEAR TO ME THAT SOMETHINGS CANNOT BE -- YOU CANNOT FIND SOLUTION TO SOME ISSUES, YOU CAN MANAGE THEM BUT FINDING SOLUTION TO THEM, THERE IS A LOT TO THAT AND THAT RECOGNITION, VERY PRESENT IN THE HPP, THAT'S WHY SUPPORT IN THIS GOAL TO TRY TO ACHIEVE BEST POSSIBLE PRACTICES. SO WHEN IT COMES TO UNINTENDED COP QUEENSES HOW DO WE DEAL WITH THEM, HOW DO WE IDENTIFY WITH THEM, IT HAS TO BE JOINT EFFORT, IT'S EXTREMELY DIFFICULT. ARE WE SUCCESSFUL WHERE WE HOPE WE ARE MOST OF THE TIME BUT AGAIN, THIS IS AN ONGOING PROCESS. >> THE SECOND QUESTION I HAD, I WISH WE HAD MORE TIME TO TALK ABOUT HUMAN CONSCIOUSNESS. BUT ONE WORRY WAS DEHUMANIZATION AND TRYING TO UNDERSTAND THAT, YOU HAVE TO UNDERSTAND HUMANS. SO IF YOU DON'T UNDERSTAND HUMANS,, THEN CAN YOU ACTUALLY DO RESEARCH FUND RESEARCH IN THAT AREA, IF THAT'S REQUIRED BEFORE YOU ACTUALLY -- >> THAT'S A REALLY INTERESTING PHILOSOPHICAL QUESTION. WHAT WE FIND IS IN OUR EXPERIENCE WORKING WITH ETHICS AND SOCIETY WE FIND MANY TIMES PEOPLE USE THE SAME CONCEPT AND THEY MEAN DIFFERENT THINGS. SOME WHAT WE WANT, TO BE CLEAR ABOUT WHAT WE ARE TALKING ABOUT, EVEN WHAT WE GOING TO SAY, I'M NOT SURE WHAT THE HUMAN IS, THEN LET'S SAY IT, LET'S KEEP THAT IN MIND WHEN TALKING ABOUT DEHUMANIZATION FOR EXAMPLE. SO WHAT WE ARE TRYING TO ACCOMPLISH IS SOME CLARITY REGARDING NOTION, USUALLY USED AND UNFORTUNATELY MANY TIMES AFFECT PEOPLE TO EXTENT WHICH THEY MIGHT HAVE RELUCTANT TO HAVE NEUROSCIENTIST UNDERGO RESEARCH BECAUSE OF THE HUMANIZATION. FOR EXAMPLE. SO WHAT WE ARE TRYING TO DO, TRY TO SAY LET'S BE CAREFUL, WE ARE IN A DELL KIT AREA HERE -- DELICATE, WE ARE IN A DELICATE AREA HERE. AT LEAST BE CLEAR WHAT WE ARE TALKING ABOUT AND WHAT WE KNOW AND WHAT WE DO NOT KNOW. AND THERE ARE CONCEPTS THAT ARE CONTROVERSIAL, LET'S BE CLEAR THESE ARE CONTROVERSIAL CONCEPTS. THAT'S WHAT WE ARE TRYING TO DO. >> THANK YOU. >> THANK YOU. [APPLAUSE] >> OUR NEXT SPEAKER IS JEFFREY KAHN, AND USE OF NON-HUMAN PRIMATES AS WELL AS HUMAN DISEASE. I WISH I HAD SOME STORIES I COULD TELL YOU ABOUT JEFFREY BUT DON'T HAVE ANY YET. >> THERE ARE IN. -- ARE MANY. THANKS. SO IF YOU DIDN'T KNOW ME IN COLLEGE, I GUESS I SHOULD SAY IN RESPONSE TO THAT. SO I WAS TRYING TO THINK HOW TO MAKE CONNECTION BETWEEN PREVIOUS TWO PRESENTATIONS AND WHAT I'M GOING TO RAISE, NOT GOING TO ANSWER QUESTIONS BUT START THE CONVERSATION. I THINK THE MOST OBVIOUS CONNECTION IS PUBLIC ENGAGEMENT AND WHAT IT MEANS TO BE HUMAN INTERESTINGLY ENOUGH. BEFORE I LAUNCH INTO THE CONTENT OF MY SLIDES, GIVE MAYBE A LITTLE BIT OF CONTEXT FOR THIS PARTICULAR TOPIC. I HAVE NOT SPENT A HUGE AMOUNT OF MY PROFESSIONAL LIFE WORKING ON ETHICS AND THE USE OF ANIMALS. OR ETHICS ANIMAL RESEARCH. OR THE USE OF NON-HUMAN ANIMALS BY HUMANS. I CAME TO BE INVOLVED IN THIS THROUGH REQUEST FROM THE NIH WHEN THERE WAS A QUESTION ABOUT FUTURE OF THESE WHICH I CHIMPANZEES IN RESEARCH. THE QUESTION CAME TO NATIONAL RESEARCH COUNCIL NATIONAL ACADEMIES HERE IN WASHINGTON TO HELP PROVIDE GUIDANCE TO THE NIH DIRECTORS OFFICE ABOUT THE FUTURE USE OF CHIMPANZEE IN 2011, 2010, WHEN PROCESS BEGAN. BECAUSE I HAD NOT BEEN ON THE RECORD ABOUT VIEWS RELATED TO THE ETHICS OF USE OF NON-HUMAN ANIMALS, I WAS ASKED TO BE MEMBER OF INSTITUTE OF MEDICINE COMMITTEE AND CHAIRED THAT COMMITTEE THAT MADE RECOMMENDATIONS ABOUT FUTURE USE OF CHIMPANZEES IN RESEARCH WHICH LED TO A REPORT THAT ESTABLISHED CRITERIA IN ANSWER TO THAT QUESTION, I'M SURE MANY IN THE ROOM OR WEBCAST KNOW A DECISION WAS TAKEN IN 2015 BY DR. COLLINS TO NO LONGER FUND CHIMPANZEE RELATED BIOMEDICAL RESEARCH AT THE NIH SO I BECAME PART OF THE DEBATE AND DISCUSSION OF THE USE OF THESE CHIMPANZEES AND MORE RECENTLY JIM SAID EARLIER TODAY, PART OF THE PLANNING COMMITTEE FOR WORKSHOP AROUND THE USE OF NON-HUMAN PRIMATES IN A VERY PARTICULAR FOCUS AREA OF NEUROSCIENCE. SO THAT HELPS INFORM WHAT I'M GOING TO SHARE WITH THE GROUP TODAY SO TO SAY THE TITLE IS A BIT TOO NARROW. ONLY TO SAY SOME OF THE USE OF USE AND PROPOSED USES OF NON-HUMAN PRIMATES IN RESEARCH IS NOT ONLY FOR HUMAN BRAIN DISEASE BUT ALSO FOR TRYING TO UNDERSTAND HUMAN PROCESSES. DISEASE MAYBE NARROWER BUT I THINK YOU GET THE PICTURE. TO CONNECT THE PREVIOUS TWO COMMENTS, PUBLIC ENGAGEMENT, PUBLIC COMMUNICATION AND PUBLICLY RESPONSIVE SCIENCE IS A VERY IMPORTANT ASPECT OF WHAT WE ALWAYS NEED TO BE THINKING ABOUT ADS WE TALK ABOUT SCIENCE POLICY AND FUNDING IN THE FUTURE OF SCIENCE. CERTAINLY THE USE OF NON-HUMAN PRIMATES HAS BEEN A VERY EMOTIONAL TOPIC. FOR MANY PEOPLE. I WILL SAY AS A FUNCTION OF THE WORK THAT I WAS ENGAGED IN WITH THE IOM AROUND CHIMPANZEES TO GIVE A SENSE HOW ENGAGED PARTICULAR SUBSET OF THE PUBLIC WAS, THAT COMMITTEE ESTABLISHED A WEB PORTAL AND EMAIL ADDRESS FOR FEEDBACK FOR MESSAGES TO COME TO INFORM THE ECONOMY'S WORK. -- THE ECONOMY'S WORK AND IN THE -- THE COMMITTEE'S WORK AND IN THE COURSE OF THE YEAR THE COMMITTEE MET WE RECEIVED MORE EMAIL AND WEB PORTAL MESSAGES ABOUT THAT ONE STUDY THAN ALL PREVIOUS IOM COMMITTEE CONSENSUS HAD UP TO THAT POINT COMBINED. IT WAS MANY THOUSANDS AND THOUSANDS OF MESSAGES MANY THROUGH ORGANIZED PROCESS BY ANIMAL WELFARE AND RIGHTS COMMITTEE. NONETHELESS VERY ENGAGED PUBLIC AROUND ISSUES OF USE OF ANIMALS. AND MORE THEY SEEM LIKE US THE MORE INTEREST SEEMS TO BE SO THAT IS A CONTEXT SETSING FOR WHAT I AM ABOUT TO TALK ABOUT AND HOPE WE CAN CONTINUE TO DISCUSS THIS AS A SUBCOMMITTEE AND OF COURSE DURING THE DISCUSSION TIME IF PEOPLE ARE INTERESTED. SO I DON'T HAVE A LOT OF SLIDES SO DON'T WORRY TAKE TOO LONG. I'M GOING TO FOCUS ON HIGH LEVEL FIRST ETHICS CONSIDERATIONS AND THEN SOME OF THE POLICY APPROACHES TO DEALING WITH THEM. THE FIRST QUESTION TO GRAPPLE WITH IS WHY USE NON-HUMAN ANIMALS AT ALL. IN THIS CONTEXT WHY USE NON-HUMAN PRIMATES IN THE CONTEXT OF RESEARCH. AND THE ANSWER OF COURSE IS ABOUT THE SCIENCE WE NEED TO USE NON-HUMAN ANIMAL MODELS IN ORDER TO UNDERSTAND BETTER SOMETHING ABOUT HUMANS, HUMAN HEALTH, HUMAN DISEASE, HUMAN DEVELOPMENT, HUMAN PROCESSES BIOLOGICAL PHYSIOLOGICAL PROCESSES. AND THE MORE SIMILAR THE ANIMAL MODEL IS TO HUMANS, MORE RELEVANCE IT WILL HAVE TO HUMAN TRANSLATION, AT LEAST SO GOES THE ARGUMENT. THERE'S OTHER THINGS TO BE CLEAR ABOUT WHETHER THE MODEL IS ACTUALLY INSTRUCTIVE. THAT'S NOT WHAT I'M GOING TO ARGUE FOR OR AGAINST BUT TO SAY OUTLOUD, TO SAY CLOSER TO HUMANS IN ALL RESPECTS WE THINK ABOUT AS BEING IMPORTANT, THE MORE RELEVANT ARGUES FOR USE OF NON-HUMAN PRIMATES BECAUSE THEY ARE PHYSIOLOGICALLY GENETICALLY CLOSER TO US THAN OTHER NON-HUMAN ANIMALS, WHY WE WANT TO USE THEM. THAT ARGUES IN A POSITIVE SENSE FOR THEIR USE. IT ALSO ALLOWS RESEARCH TO BE PERFORMED ON NON-HUMAN ANIMALS THAN HUMAN SUBJECTS. THAT MAY NOT NECESSARILY BE A GOOD THING, WE MAYBE BETTER OFF DOING RESEARCH ON HUMANS TO UNDERSTAND HUMAN HEALTH BUT SOMETIMES NOT POSSIBLE TO DO SO WHERE NOT ETHICALLY PERMISSIBLE TO DO SO. NOT SUGGESTING THAT IS FOR OR AGAINST BUT THAT IS THE REASON WHY, WHY WE USE NON-HUMAN ANIMALS. BIOMEDICAL QUESTION TO BE ANSWERED AND OTHERWISE RESEARCH IMPOSSIBLE OR UNETHICAL ON HUMANS. THE REASONS IMPORTANT TO USE NON-HUMAN PRIMATES ALSO CONTRIBUTE TO ETHICS CONSIDERATIONS. SO IN THE CONTEXT OF THIS PARTICULAR FOCUS QUESTION ABOUT MAKING NON-HUMAN PRIMATES MODEL OF HUMAN DISEASE OR BEHAVIOR, GOAL MAKES THEM MORE SIMILAR TO US THAN OTHERWISE WOULD BE. SOFT USING GENETIC TECHNIQUES, TRANSGENIC TECHNIQUES. WE KNOW RESEARCH IS DONE TO CREATE NON-HUMAN ANIMAL MODELS. THAT REMY DATE SYMPTOMS AT LEAST OF HUMAN DEISM SO THE BETTER WE ARE AT DOING THAT, -- HUMAN DISEASE. SO THE BETTER WE ARE DOING THAT, THE MORE IMPACT THOSE SYMPTOMS WILL BE FELT BY THE ANIMAL MODEL. AND THE MORE WE ARE MAKING THEM SUFFER LIKE DISEASE HUMANS WOULD HAVE. BETTER WE ARE DOING THE SCIENCE, THE MORE ETHICAL ISSUES BECOME APPARENT OR PRONOUNCED AND BECOME MORE PRONOUNCED. IT SAYS IN THE SUBBULLET, IF WE ARE CONCERNED ABOUT EFFECT OF THOSE, THE SYMPTOMS OF THOSE DISEASE IN HUMANS SHOULDN'T WE BE CONCERNED ABOUT THE EFFECT AND THE ANIMALS MODELING THEM AND IF SO, WHAT WE SHOULD DO ABOUT THAT. SHOULD IT MATTER ABOUT THE WORK THAT IS PERMITTED IN OVER SIGHT AND WHAT CAN BE CARRIED OUT. THAT'S NOT ANSWERING THE QUESTION BUT RAISING IT. I WILL SAY HAVE BEEN AT WORKSHOP A FEW MONTHS AGO THE NATIONAL ACADEMIES HOSTED, IT WAS QUITE COMPELLING TO LOOK AT ANIMAL MODELS BEING DISCUSSED DESCRIBED WITH SOME FLIES AND VIDEOS OF SYMPTOMS THOSE ANIMALS WERE SHOWING AND HOW CLOSE TO HUMAN DISEASE THEY WERE MEANT TO MIMIC. ONE QUESTION, WHETHER THOSE SYMPTOMS ARE MEANINGFUL IN TERMS OF WHETHER THAT'S DISEASE OR THE SAME SYMPTOMS AS INDIVIDUAL HUMAN MIGHT HAVE SHOWING UP IN ANIMAL. WHAT CAN WE SAY ABOUT THE LIVED EXPERIENCE OF THE ANIMAL EXPERIENCING THOSE SYMPTOMS. MIGHT ASK AS WAY OF TRYING TO ANSWER WHEN ACCEPTABLE TO GO FORWARD IN AREA LIKE THIS, WHETHER PARTICULAR DISEASE MATTER. HOW SIGNIFICANT, SERIOUS, HOW IMPORTANT AND HOW WE ANSWER THAT QUESTION ABOUT CRITERIA OR QUESTIONS THAT WOULD BE MEASURED OR ASSESSED TO DECIDE WHAT'S ACCEPTABLE, WHAT'S SUFFICIENTLY IMPORTANT TO GO FORWARD IN THIS AREA. MAYBE TO SAY OUTLOUD, OBVIOUS BUILDING UP TO THIS AMOUNT OR TYPE OF MAKING THE ANIMAL MORE LIKE THE HUMAN MATTER. I PUT HUMANIZATION THERE ARE FOR OBVIOUS REASONS. WE HAVE TALKED IN SCIENCE OR SCIENTISTS HAVE TALKED ABOUT HUMANIZED RODENT MODEL, HUMANIZED MOUSE MODEL DURING THE COURSE OF THE CHIMPANZEE DISCUSSION, ONE OF THE BIG QUESTIONS WAS ABOUT WHETHER THERE WERE OTHER ANIMAL MODELS THAT COULD BE USED IN IN AREAS WHERE CHIMPANZEES WERE IMPORTANT SUCH AS HEPATITIS VIRUS RESEARCH. AMONG CHALLENGES OF NON-HUMAN ANIMAL RESEARCH INVOLVING HEP C IS ONLY CHIMPANZEES AND HUMANS ARE INFECTIBLE, CAN BE INFECTED BY HEPATITIS VIRUS. BUT A NON-HUMAN MOUSE MODEL THAT HAD A HUMANIZED LIVER IS NOW DEVELOPED BY GROUP AT ROCKEFELLAR UNIVERSITY. SO YOU WOULD SAY THAT'S A HUMANIZED MOUSE WITH A LIVER MORE LIKE A HUMAN THAN WHAT WOULD OTHERWISE BE IN A MOUSE. THAT DOESN'T SEEM TO MATTER SAME WAY AS NOTION OF HUMANIZATION IN THE NEUROSCIENCE CONTEXT. THAT'S AMONG THE THINGS THAT I THINK WE NEED TO BE CLEAR ABOUT. SO HUMANIZED LIVER, VERSUS HUMANIZED BRAIN OF ANIMAL SEEMEDDED TO HAVE VERY DIFFERENT CONSIDERATIONS. FROM SO WHAT CAPACITIES OF HUMANIZATION MATTER. HOW CAN WE ASSESS, HOW WE CAN KNOW A BRAIN HUMANIZED MORE THAN OTHERWISE EXIST IN THAT SPECIES. AND HOW MUCH MATTERS WHAT PARTICULAR FEATURES OF THAT HUMANIZATION MAKE A DIFFERENCE. HOW WE THINK ABOUT THE ETHICS OF SUCH MODEL MAKING AND USE. AND OBVIOUS QUESTION TO ANSWER THOUGH NOT AMONG THE THINGS IN OUR ROAD MAP DISCUSSION IS QUESTION NOR NON-HUMAN PRIMATES DIFFERENT THAN OTHER SPECIES. WE SEEM TO BE BEHAVING THAT ANSWERS THAT QUESTION AFFIRMATIVE, MAYBE WE SHOULD TALK ABOUT WHY THAT'S THE CASE. IF DOING BRAIN MODIFICATIONS THAT MAKE NON-HUMAN PRIMATE MORE LIKE HUMAN THAN WOULD HAVE BEEN BEFORE, WHAT'S SPECIAL IN THAT CONTEXT. ONE WAY NOT OUT OF BUT HELP THINK WHEN RESEARCH INVOLVING NON-HUMAN PRIMATES IN THIS CONTEXT TO CONSIDER JUSTIFICATION. HOW DO WE JUSTIFY, MEAN IN THE SENSE OF SCIENTIFIC JUSTIFICATION, ETHICAL JUSTIFICATION AND CONTEXT FOR ME ADDS UP TO PUBLIC JUSTIFICATION. DO THAT IN A WAY THAT'S TRANSPARENT WE NEED TO ANSWER SOME BASIC OBVIOUS QUESTION, HOPE WE DO THIS ALREADY BUT REITERATE WE NEED TO BE CLEAR ABOUT THE REASONS TO CREATE AND USE MODELS THAT ARE MORE HUMANIZED OTHERWISE WOULD BE IN NEUROSCIENCE CONTEXT. AND WHAT THE RELEVANT REASONS ARE FOR THAT AND WHETHER THOSE REASONS HAVE BEEN SATISFIED IN A PARTICULAR EXAMPLE. FROM WE NEED ESTABLISH CRITERIA WHICH SUCH USE WOULD BE JUSTIFIED. I WOULD SAY THIS IS NOT UNIQUE TO ME ECHOING OTHERS T PRETTY CLEAR WE NEED TO MATCH APPROPRIATE MODEL WITH RESEARCH QUESTION TO BE ANSWERED. THAT'S TRUE, IN THE WAY WE THINK ABOUT BIOMEDICAL RESEARCH INVOLVING NON-HUMAN ANIMALS ANYWAY BUT TO SAY IT'S OBVIOUSLY IMPORTANT AND CRITICAL IN THIS CONTEXT AS WELL. DRAWING FROM IOM COMMITTEE REPORT IN 2011 ON USE OF CHIMPANZEES, THE TWO THINGS THAT SEEM TO MATTER TRANSLATABLE OR CARRIED OVER TO THE CONVERSATIONS THAT WE'RE HAVING TODAY, IS THAT WE CAN USE OTHER NON-HUMAN PRIMATES MODELS WHEN THERE'S WHEN THERE'S SIGNIFICANT APPROPRIATE LIMITATIONS ON RESEARCH APPROACHES INVOLVING HUMAN SUBJECTS. THEY WANT TO KNOW MORE ABOUT HUMAN, LOOK AT HUMAN BUT SOMETIMES WE CAN'T. SOMETIMES WE CAN'T BECAUSE WE CAN'T DO RESEARCH IN QUESTION ON HUMAN AND IT ENDS UP IN ANIMAL THAT HAS TO BE SACRIFICE TO SAY THAT YOU HAVE ACCESS TO BRAIN TISSUE, CANNOT BE DONE IN HUMANS OR EXPOSING HUMANS TO TOO MUCH RISK IN A WAY NOT PERMISSIBLE FROM ETHICS PERSPECTIVE, NO IRB ALLOW THAT RESEARCH TO GO FORWARD. FROM SAY IN THE CHIMPANZEE CASE THE EXAMPLE WAS HUMAN CHALLENGE STUDIES TO CREATE A PROPHYLACTIC VACCINE OR HEPATITIS C. YOU COULD NOT DO CHALLENGE STUDY WHERE YOU VACCINATE WITH EXPERIMENTAL VACCINE AND INTENTIONALLY IN VACCINE COULD NOT DO THAT, COULDN'T DO IN NON-HUMAN ANIMAL, THE QUESTION IS WHERE THE QUESTION IS BETWEEN HUMAN SUBJECT FROM ETHICS PERSPECTIVE. IN COMBINATION WITH LIMITATION ON RESEARCH INVOLVING HUMANS TO SAY THERE'S NO OTHER MODEL BY WHICH WE WOULD BE ABLE TO GAIN THIS KNOWLEDGE. BUT NON-HUMAN PRIMATE MODIFIED IN THIS WAY. SO SET THE BAR IN A VERY CLEAR WAY. THIS MIGHT BE TOO RESTRICTIVE BUT AS A STRAWMAN SHOWING YOU SOME WAYS TO THINK JUSTIFICATION AND HOW IT WORKS IN THIS CONTEXT. SO THIS IS MY LAST SLIDE, I WILL BE RELATIVELY QUICK HERE. I WANT TO SAY TWO WORDS ABOUT OVERSIGHT BEING ADDED ON TO OR SPECIAL ADDITIONAL OVER SIGHT IN THIS PARTICULAR AREA NON-HUMAN PRIMATES FOR NEUROSCIENCE WHERE THERE'S MODIFICATIONS FOR WAYS THAT I HAVE ALLUDED TO. ONE WE MIGHT THINK ABOUT, NOT SUGGESTING THESE ARE THE ONLY BUT RATHER AS A WAY TO START A CONVERSATION, THERE BE SPECIALIZED EXPERTISE BROUGHT IN FOR REVIEW. SO AMONG THE THINGS PEOPLE WHO SERVE ON INSTITUTIONAL ANIMAL CARE AND USE COMMITTEE SOMETIMES FEEL THEY DON'T HAVE THE RIGHT EXPERTISE TO ASSESS WHAT IS BEING PROPOSED FROM A SCIENTIFIC PERSPECTIVE TO UNDERSTAND SUFFICIENTLY TO MAKE A JUDGMENT ABOUT ETHICS OVERSIGHT AND POLICY. THERE NEEDS TO BE VERY CLEAR UNDERSTANDING AND ARTICULATION OF SCIENTIFIC RATIONALE IN ADDITION TO WHATEVER PARTICULAR ANIMAL CARE USE NEEDS TO EXIST. SO IN A DIFFERENT CONVERSATION, STEVE HYMAN MANY OF YOU KNOW, MENTIONED THERE NEEDS TO BE WORK DONE BY THE COMMUNITY OF RESEARCHERS WITH INPUT FROM RELEVANT STAKEHOLDERS WHICH INCLUDE INTERESTED ASPECTS OF THE PUBLIC TO CREATE CONSENSUS BASED CRITERIA. WHAT SHOULD BE THE RULES IN TERMS OF JUSTIFICATION AN ANIMAL CARE USE FOR RESEARCH INVOLVING NON-HUMAN ANIMALS IN THIS AREA. WE ALSO HAVE PUT ON THE TABLE IDEAS THAT ARE NOW PART OF HOW HUMAN SUBJECTS RESEARCH IS BEING CARRIED OUT AS PRODUCT OF THE NEW UPDATED REVISED COMMON RULE. CENTRALIZED REVIEW. SO RATHER THAN LEAVING ALL TO INSTITUTIONAL OVERSIGHT REVIEW COMMITTEES HAVE SOME CENTRALIZE PROCESS WHICH EXPERTISE CAN BE BROUGHT TOGETHER AND APPLIED. WHETHER THERE OUGHT TO BE CARE FOR ANIMALS MODIFIED IN WAYS WE ARE TALKING ABOUT, I DON'T KNOW THE ANSWER BUT WORTH FACING. THESE TWO BIG QUESTIONS TO LEAVE US WITH. SHOULD OVERSIGHT I'M SUGGESTING IF IT'S ADOPTED, ADAPTED, ACCEPTED TO NON-HUMAN PRIMATE MODELS OTHER NON-HUMAN ANIMAL SPECIES USED IN SIMILAR WAYS, THE KINDS OF THINGS THINKING ABOUT IN NEUROSCIENCE CONTEXT. AND MAYBE LAST BIG HANGING QUESTION, ARE THERE SOME KINDS OF RESEARCH WE THINK OUGHT NOT BE PERMITTED, MODIFYING NON-HUMAN ANIMALS, PRIMATES IN SOME PARTICULAR WAY THAT SEEMS BEYOND THE PALE, WHATEVER THE PALE IS, THE CRITERIA WE NEED TO IDENTIFY TO SAY IT'S NOW BEEN CROSSED. AND WHAT THE FEATURES WOULD BE THAT SHOULD MAKE IT OFF LIMITS. IS THERE A LINE WE OUGHT NOT CROSS. WITH THAT I THINK THAT'S END OF MY SLIDES. HAPPY TO TAKE QUESTIONS OR COMMENTS BEFORE OUR BIGGER DISCUSSION. THANKS. [APPLAUSE] >> PARDON ME. THANK YOU FOR THAT PRESENTATION. I HAD A QUESTION ABOUT SCOPE OF RECOMMENDATIONS YOU -- THE SCOPE OF RECOMMENDATIONS YOU POSITED. HOW WOULD -- HOW WOULD IT APPLY TO INDUSTRY SPONSORED RESEARCH AND PRIVATELY SPONSORED RESEARCH, WHAT ABOUT ENTER-- INTERNATIONALLY? >> GOOD QUESTION. FIRST MAYBE EASIER. OF COURSE INDUSTRY FUNDED RESEARCH OFTEN IS IN THE INTEREST OF FDA LICENSE APPLICATIONS AT SOME POINT, FDA HAS PARALLEL RULES AS YOU KNOW TO NIH. ONE WAY OF CAPTURING THE BUSINESS, NON-GOVERNMENT FUNDED SIDE OF THINGS. I WILL SAY THIS IS A BIG QUESTION IN CHIMPANZEE CONTEXT AS WELL. THERE WAS CONCERN IT'S FINE AND GOOD FOR THE NIH TO ADOPT THESE RULES AND APPLY THEM AND END UP PROHIBITING THE USE. WHAT ABOUT PRIVATE FUNDED RESEARCH. TURNED OUT PRIVATE SECTOR NOT VERY LONG DECIDED TO ADOPT STATEMENT CRITERIA. SO WE SAW PRECIPITOUS DROP OFF OF USE OF CHIMPANZEES BY PHARMACEUTICAL COMPANIES IN PARTICULAR BIOTECH. SO THEY FOLLOWED ON VOLUNTARILY TURNED OUT LITTLE BIT OF SURPRISE, THAT IS A POSSIBILITY IN THIS CONTEXT AS WELL. INTERNATIONALLY IS HARDER AND I'M A LITTLE -- IF NOT DESPONDENT, DEPRESSED ABOUT INTERNATIONAL GOVERNANCE IN LIGHT OF NOT THIS TOPIC BUT HUMAN GENOME EDITING AND THE RECENT DISCLOSURE OF TWINS BORN IN CHINA AND WHAT WHAT POSSIBILITY THERE IS FOR INTERNATIONAL GOVERNANCE CONTROVERSIAL LEADING AREAS OF SCIENCE. I DON'T THINK WE HAVE THE QUESTION. PRODUCT OF MITOCHONDRIA REPLACEMENT. THAT'S NOW I THINK THREE OR FOUR DEPENDING ON WHOSE COUNT YOU BELIEVE, THEY ARE POPPING UP ALL OVER THE WORLD. MOSTLY IN PLACES WHERE THERE IS NOT STRONG GOVERNANCE. PART OF THE ANSWER I THINK IS YOU CAN HAVE STRONG GOVERNANCE IN PLACES LIKE THE U.S., UK, EUROPE, JAPAN, OTHER PARTS OF ASIA. BUT THERE WILL BE PLACES WHERE THERE ISN'T STRONG GOVERNANCE, THAT'S WHERE PEOPLE TEND TO GO WHEN THEY WANT TO DO THINGS OUTSIDE OF TYPICAL CONVENTIONAL SCIENCE. NOT AN ANSWER, THAT'S A WORRY. >> I HAVE A QUESTION WHICH HAS TO DO WITH IMPACT THAT YOU JUST DESCRIBED. THE -- YOU HIT THE PRIVATE SECTOR. THE IMPACT OF THIS REPORT STRIKES ME AS THE DREAM OF EVERY COMMITTEE, YET REALITY, THESE REPORTS SIT ON A SHELF AND NO ONE PAYS ATTENTION. WHAT DO YOU THINK WAS DIFFERENT ABOUT THE WORK YOU DID, WAS IT THE MOMENT RIGHT, CRYSTALIZED IT, THAT COULD SPEAK TO THE WORK IN BRAIN GOING FORWARD. WHAT WERE SUCCESS FACTORS FOR YOUR COMMITTEE? >> GOOD QUESTION. I DIDN'T MEAN TO FOCUS THE CONVERSATION ON THE IOM REPORT AND ITS AFTER MATH BUT THERE'S SOME INSTRUCTIVE LESSONS. IT MAY HAVE BEEN THE RIGHT MOMENT AND RIGHT ANSWER AT THAT MOMENT. BUT I THINK PART OF IT WAS THE QUESTION WAS VERY CLEAR, QUESTION ASKED WAS VERY CLEAR AND THE COMMITMENT FROM COMMITTEE WAS WE WILL FOLLOW THE FACTS AND ANSWER THE QUESTION WHEREVER THE FACTS LEAD. AMONG ASPECTS OF CONTROVERSIAL AREA WAS REQUEST THAT EVERY MEMBER BEFORE THEY WERE AS NOMINATED BUD BEFORE THEY WERE FINALIZED WHETHER THEY WERE OPEN TO THE IDEA OF RESEARCH INVOLVING CHIMPANZEES. IF YOU ANSWERED NO, YOU MADE UP YOUR MIND BEFORE, YOU ANSWER EITHER WAY, THAT MADE YOU INELIGIBLE TO PARTICIPATE. SO THERE HAD TO BE OPEN MINDEDNESS, LOOK AT THE FACTS, WE WROTE A REPORT THAT WAS PRETTY TIGHT IN ITS ARGUMENTS AND CONCLUSIONS. AND I THINK THE TIME WAS RIGHT FOR RECEPTION, THERE WAS RECEPTIVITY ON THE PART OF THE DISCUSSION MAKERS. SO PIT MAYBE A KIND OF ONE OFF EXAMPLE. I DON'T WANT TO DRAW GENERALLIZABLE CONCLUSIONS FROM IT AND SAY THEREFORE WE CAN APPLY ALL OF THESE LESSONS IN THIS CONTEXT AND IT WILL BE EQUALLY SUCCESSFUL. BUT THERE'S SOME CLARITY OF PROCESS AN RECOMMENDATIONS THAT HELP MAKE THE RESULT ACCEPTABLE AND IMPLEMENTABLE AND USEFUL. TO THE POLICY MAKERS. >> JEFFREY, I HAD A QUESTION. SO THERE'S NON-HUMAN PRIMATE RESEARCH IN LOTS OF DIFFERENT AREAS BUT WITH RESPECT TO BRAIN 2025 AND MOVE MUCH MORE TO THE HUMAN SYSTEM, I I THINK WE BELIEVE THE HUMAN WITH RESPECT TO CENTRAL NERVOUS SYSTEM, WITH RESPECT TO BRAIN MAKES US -- IF THAT'S ONE'S BELIEF, THEN IT'S ETHICAL IMPERATIVE MOVE EXPERIMENTALLY LOWER VERTEBRATES THROUGH KNOP HUMAN PRIMATES TO THE HUMAN GIVEN UNIQUENESS OF WHAT WE THINK HUMAN BRAIN DOES. >> THAT'S OF COURSE THE CHALLENGE. IF AS YOU SAY THAT CASE CAN BE ARTICULATED IN CLEAR WAY, THAT IS A GREAT WAY TO DEFEND, JUSTIFY REASONS ANIMAL RESEARCH IS NOT ONLY IMPORTANT AND USEFUL BUT NECESSARY. I DIP USE THE WORD NECESSARY IN THESE SLIDES. THAT WAS AMONG THE QUESTIONS THAT CHIMPANZEE COMMITTEE WAS ASKED, WHEN IS IT NECESSARY? NECESSARY IS HIGH BAR. WE CAN'T GET THREW WITHOUT DOING THIS. I DON'T THINK THAT'S APPROPRIATE CRITERIA IN CONTEXT WE TALK ABOUT WITH BRAIN. IT IS TOO EARLY TO KNOW WHAT'S NECESSARY. THAT'S PART OF SCIENCE DO THINGS YOU DON'T KNOW WHAT THE ANSWER WILL BE OR WHY IT'S IMPORTANT NECESSARILY. BUT WE HAVE TO MAKE THE KIND OF AFFIRMATIVE CASE THAT YOU JUST DID OR THE STEINS NEEDS TO MAKE THE AFFIRMATIVE CASE YOU DID. THERE IS A QUESTION THAT NEEDS TO BE ARTICULATED WHICH ANIMALS NEED TO BE USE AND WHY TO GET TO THE INSIGHTS THAT YOU SUGGESTED. DO WE NEED TO GO THROUGH THESE STEPS AND WHY. I THINK IF THE ANSWER IS YES, IT CAN BE ARTICULATED AND DEFENDED BUT TO JUST SAY IT'S IMPORTANT TO DO, I DON'T THINK IS ENOUGH. MAKING JIM GET HIS WORK OUT FOR THE DAY. >> SO BASED ON EXPERIENCE WITH CHIMPANZEES, CAN YOU HEAR ME? >> I HAVE A HEARING THING SO IT'S PROBABE JUST ME BUT IF YOU CAN TALK LOUD THAT WOULD HELP. >> BASED ON EXPERIENCE WITH CHIMPANZEE, IS THERE SOME LINE YOU CAN DRAW? THERE'S CURRENTLY OR THERE WAS THE LAST CONGRESS, A BILL BY CORY BOOKER TO LIMIT OR BAN ALL NEW NON-HUMAN PRIMATE RESEARCH AND IS THERE DEFENSIBLE PHILOSOPHICAL ETHICAL LINE YOU SAY HERE IS WHY CHIMPANZEES ARE SPECIAL BUT OTHER NON-HUMAN PRIMATES ARE ACCEPTABLE OR DECISION TREE BASED ON YOUR NEEDS ON YOUR STUDY. IS THERE SOMETHING SPECIAL ABOUT THE CHIMPANZEES WE CAN DRAW? >> GOOD QUESTION. MAYBE TWO WORDS WHAT YOU SAID BY WAY OF INTRODUCTION OF YOUR QUESTION. SENATOR BOOKER FROM NEW JERSEY INTRODUCED LEGISLATION THAT WENT UNDER THE RADAR, THOUGH YOU KNOW ABOUT IT. ASKING FOR NATIONAL ACADEMIES REVIEW LIKE WHAT WAS PERFORMED FOR CHIMPANZEES FOR OTHER NON-HUMAN PRIMATES, YOU ARE RIGHT WITH THE GOAL OF LEADING TOWARDS ENDING RESEARCH. I THINK IT'S REALLY IMPORTANT TO SAY THAT IOM CRITERIA WERE NOT ABOUT PROHIBITION. THESE ARE CRITERIA THAT NEED TO BE METHOD. TO JUSTIFY AS MATTER OF NECESSITY USE OF THIS PARTICULAR SPECIES. THE EVALUATION WAS NO FUNDED RESEARCH AT THAT TIME AND GOING FORWARD PEOPLE'S PERSPECTIVE MEET THOSE CRITERIA. YOU CAN DO SAME WITH OTHER ANIMAL SPECIES, MAYBE EASIER WITH OTHER NON-HUMAN SPECIES THAN WITH CHIMPANZEES BUT SOMEBODY NEEDS TO DO A BETTER JOB ABOUT ARTICULATING WHAT MAKES THEM SPECIAL. FROM TRUTH IS WE IN THE IOM COMMITTEE PROCESS WERE NOT ASKED TO OPINE ABOUT CHIMPANZEE VERSUS OTHER SPECIES ONLY ASKED ABOUT WHICH I AM CHIMPANZEES. IF YOU ASK OTHERS IN THE ROOM THEY WILL GIVE YOU'RE ANSWERS, THEY'RE CLIMATOLOGISTS THAT CAN GO ON FOR HOURS WHAT MAKES THEM SPECIAL AMONG NON-HUMAN PRIMATES. NOT TO SAY THEY ARE ALL SPECIAL AS CHIMPANZEES, I'M NOT ENDORSING OR NOT THAT VIEW BUT NEED TO DO THAT WORK. BEFORE YOU GET TO CRITERIA FOR JUSTIFY RATION OF THE USE OF JUSTIFICATION OF FILL IN THE BLANK SPECIES. PEOPLE REACT DIFFERENTLY, THE PUBLIC, TO THE USE OF RODENTS THAN USE OF NON-HUMAN PRIMATES. DOESN'T TAKE GREAT INSIGHT TO UNDERSTAND WHY THAT IS. THEY LOOK FOR LIKE US. THEY RESPOND IN WAYS THAT LOOK LIKE US. I CAN GO ON AND ON YOU CAN TELL ABOUT THE KINDS OF THINGS YOU LEARN ABOUT NON-HUMAN PRIMATES DOING RESEARCH LIKE THIS BUT I DON'T KNOW THAT'S GOOD ENOUGH REASON FOR SAYING THEY SHOULD BE TREATED DIFFERENTLY THAN OTHER NON-HUMAN ANIMAL MODELS. THAT WAS A BIT OF RAMBLE. >> THANK YOU. >> >> SOME OF THIS DISCUSSION REMIND ME OF THE CUSHION -- DISCUSSION A FEW YEARS AGO AND NIH HELD WORKSHOP ON HUMAN ANIMAL CRIMEIA RESEARCH, STATE OF THE SCIENCE AND THERE WAS SOME DIS-- CHIMERA RESEARCH AND THERE WAS REGULATORY OVERSIGHT AND POLICY OPTIONS. THERE WERE SEVERAL SPEAKERS WHO ARGUED WITH REGARDS TO NEURAL CHIMERAS THERE WAS WORRY HUMAN STEM CELLS MIGHT CONTRIBUTE EARLY TO BRAIN DEVELOPMENT. WHAT WOULD MAKE US WORRY ABOUT HUMANS CELLS IN ANIMAL BRAIN, SEVERAL ARGUED THAT THAT SHOULD BE LOOKED AT ESSENTIALLY ANIMAL WELFARE PERSPECTIVE AND CONSIDER WHETHER THERE WOULD BE ENHANCED SUFFERING OR SOCIAL ISOLATION OR OTHER NEGATIVE EFFECTS FROM THE ANIMALS PERSPECTIVE AND WORRY LESS ABOUT WHAT THIS MEANS, CELLS IN THE BRAIN. I WANT TO MENTION THAT IT WAS LOOKING AT SOME RELATED THINGS FROM A LITTLE BIT OF DIFFERENT ANGLE. BUT SOME FOLKS THOUGHT THE EXISTING REVIEW AT LEAST NIH FUNDED RESEARCH PEER REVIEW EXPERIMENTAL DESIGN WAS SUFFICIENT TO GRAPPLE WITH THAT. WONDERING IF YOU HAVE ANY THOUGHTS ON THAT. >> THINK YOU MADE A -- YOUR OBSERVATION IS CORRECT, PEOPLE HAVE SUGGESTED THESE ARE THE ISSUES THAT NEED TO BE CONSIDER, NOT TO THAT IS THIS LINE HERE ABOUT ADDITIONAL FEATURES FOR ANIMAL CARE. THE CHALLENGE, HOW DO WE KNOW. WHAT THEY ARE EXPERIENCING. THIS IS THE PROBLEM OF OTHER MINDS FILL PHILOSOPHERS SAY, OTHER SPECIES THAT DON'T COMMUNICATE SO HUGE CHALLENGE HOW TO THINK ABOUT AREA OF RESEARCH GOING FORWARD. FROM I DON'T HAVE GREAT INSIGHT TO HELP YOU ANSWER, I KNOW THAT WORKSHOP IS THERE WAS A LOT OF DISCUSSION OF THOSE ISSUES AND DIDN'T COME OUT TO ANY STRONG POLICY RECOMMENDATION AS A RESULT. DRAFT. OKAY. THE OTHER THING IS THERE HAS BEEN IN BETWEEN THOSE, THE CHIMPANZEE DISCUSSION AND ANIMAL HUMAN CHIMERA DISCUSSION, A WORKSHOP HERE IN THIS BUILDING ABOUT USE OF NON-HUMAN PRIMATES AND ETHICS AND POLICY ISSUES RELATED TO THAT. MOSTLY WHICH WAS ALONG THE LINES JIM ARTICULATED, THERE'S GOOD SCIENTIFIC REASON, WE HAVE TO BE CLEAR WHAT THAT IS. WHEN APPROPRIATE, AND HOW TO DEFEND USE, I DON'T MEAN THAT IN A DEFENSIVE WAY, TO JUSTIFY USE OF NON-HUMAN PRIMATES, THERE'S A KIND OF LINE BETWEEN ANSWERS GIVEN AROUND CHIMPANZEES FROM AN INSTITUTIONAL ORGANIZATIONAL STAND POINT, OTHER NON-HUMAN PRIMATES. TO HEAR MORE ORGANOIDS AND SOME OF THE CHIMERAS GENERATED THAT WAY. >> WOULD YOU BLIND COMING TO THE FRONT? >> WHAT WE WANTED TO DO IS OPEN DISCUSSION GENERALLY. YOU HAD AN OPPORTUNITY TO ASK SPEAKERS INDIVIDUAL QUESTIONS WHEN THEY DO THEIR PRESENTATION BUT NOW THAT YOU HEARD THEM, YOU HAVE OTHER QUESTIONS COME TO MIND THAT MIGHT BE DISCUSSED BY SEVERAL SPEAKERS TODAY. THIS IS AN OPPORTUNITY TO GET TOUGH QUESTIONS ANSWERED. ANYONE HAVE ANY QUESTIONS FOR THIS PANEL? >> LOVE TO HEAR FROM THE TWO OF YOU ABOUT YOU BOTH HAD PRETTY STRONG THREADS OR PIECES OF PRESENTATION RELATED TO PUBLIC ENGAGEMENT AND PUBLIC DISCUSSION COMMUNICATION. WHICH HAS BEEN A BIG CHALLENGE THAT IN SCIENCE, HOW DO WE DO THAT WELL AND I WOULD SPEAK FROM MY OWN EXPERIENCE IN THE UNITED STATES WE DON'T DO IT TERRIBLY WELL. WHAT SUGGESTIONS HOW TO DO GOOD PUBLIC ENGAGEMENT IN THIS BRAIN SCIENCE AREA? MECHANISMS EXPERIENCES SUGGESTIONS, SEEMS REALLY CRITICAL. PUSH THE BUT TOP UNTIL IT TURNS GREEN. >> REALLY CLOSE. THANK YOU. SO JUST SPEAKING FROM THE INITIAL FOR RAY INTO THIS AREA OF PUBLIC ENGAGEMENT THAT WE HAVE BEEN LOOKING AT THE FOUNDATION AND I'M ALSO SPEAKING WITH THE HAT OF HAVING OUR PUBLIC ENGAGEMENT AND PRIZES TEAM STARTING TO DEVELOP RIGHT NOW. I THINK ONE OF THE IDEAS THAT WE HAVE, THAT WE LOOK TO, IS LEARNING FROM OTHER FIELDS. SO THE KAVLI FOUNDATION SUPPORTS NOT ONLY NEUROSCIENCE BUT NANOSCIENCE ASTRO PHYSICS AN THEORETICAL PHYSICS. ONE OF THE INTERESTING THINGS WE WERE LEARNING IS THAT SEVERAL -- A FEW DECADES AGO THE NATIONAL NANOTECHNOLOGY INITIATIVE WAS EMERGING BACK IN THE '90s WITH GUIDANCE WITH SUPPORT OF -- ONE OF THE QUESTIONS THAT CAME UP FROM SEVERAL WHO ARE THINKING ABOUT THE EMERGENCE OF THAT INITIATIVE WAS HOW CAN WE ENGAGE WITH THE PUBLIC IN A MEANINGFUL WAY, TO I THINK ONE OF THE CONCERNS WAS SORT OF FEAR BASED, THAT NANOBOTS WILL COME AND ALL THESE DIFFERENT THINGS, ALL THESE DIFFERENT SCENARIOS COULD PLAY OUT AND WHAT WOULD THAT MEAN FOR SCIENCE? HOW FAR BACK COULD THAT TAKE SCIENCE IF NOT HANDLED WELL? SO THEY TOOK A BIT OF AN ANTICIPATORY RESPONSE WITH THAT. FOR EXAMPLE THE NATIONAL SCIENCE FOUNDATION, HELPED COMMISSION WORK OF THIS GROUP THAT ENDED UP BECOMING A NATIONAL INFORMAL SCIENCE EDUCATION NETWORK. THAT GROUP WAS ESSENTIALLY A NETWORK OF INDIVIDUALS WHO THOUGHT DEEPLY ABOUT PUBLIC ENGAGEMENT IN SCIENCE, SOME ARE COMING FROM MORE PUBLIC ENGAGEMENT AND SOCIAL SCIENCES WORLD. WHEREAS OTHERS ARE COMING FROM THE SCIENCE WORLD, TURN PUBLIC ENGAGEMENT OR SCIENCE COMMUNICATION. THEY FORM THIS BROAD NETWORK IN THE US. AND STARTING TO ENGAGE DEEPLY IN TERMS OF THINKING ABOUT EXHIBITS, TRAVELING EXHIBITS, SCIENCE FAIRS, OF COURSE YOU'RE GETTING ONE OF THE CHALLENGES ALWAYS WITH PUBLIC ENGAGEMENT IS THINKING ABOUT DIFFERENT AUDIENCES AND DIFFERENT PUBLICS AND THAT'S ALWAYS A CHALLENGE. BUT LEARNING FROM THAT, EXPERIENCE, I HEARD A LOT OF SIMILARITIES IN TERMS OF INTENTIONS, THE DESIRE TO TRY AND TACKLE SOME OF THESE ISSUES ISSUES WITH THE PUBLIC AT THE FOR FRONT OPPOSED TO RESPONSE TO SOMETHING HAPPENING. SO THAT'S WHERE WE HAVE BEEN LEARNING FROM THESE NETWORKS OF INDIVIDUALS. BUT I THINK IT IS A CHALLENGE, ONE OF THE OTHER THINGS WE ARE SENSITIVE TO, THINKING AS I MENTIONED EARLIER ABOUT EVALUATION METRICS. HOOKING ACROSS THE DIFFERENT BROAD SCALE RANGE PROJECT, THAT'S ONE OF THE POINTS OPENING UP TO DIFFERENT EXTENT LARGE SCALE BRAIN PROJECT ARE ENGAGING IN PUBLIC ENGAGEMENT WORK, WHETHER IT'S FROM THE PUBLIC UNDERSTANDING SIDE LIKE MENTIONING EARLIER, IT'S MORE -- OR SCIENCE COMMUNICATION, AND SOME ARE TRYING TO REACH OUT TO THE PUBLIC AND GAIN UNDERSTANDING, AUSTRALIA HAS THIS BRAIN CHAMPIONS PROGRAM. TRYING TO ESTABLISH DIRECT CONNECTIONS BETWEEN SOME MEMBERS OF THE PUBLIC TO GOVERNMENT REPRESENTATIVES. SO REALLY RANKS BUT THINKING HOW TO DETERMINE WHETHER THESE PUBLIC ENGAGEMENT EFFORTS ARE MAKING THE IMPACT THEY NEED TO, ARE -- THOSE ARE IMPORTANT SO IT'S NOT SO MUCH AN ANSWER, WE'RE GOING THROUGH A LEARNING PROCESS. ALONG WITH OTHERS IN THE FIELD. >> IN OUR CASE THIS IS EASIER. ONE OF THE PARTNERS IN SOCIETY IS THE DANISH BOARD OF TECHNOLOGY. THEY HAVE BEEN DOING PUBLIC ENGAGEMENT, I HAVE A SOLID TRAJECTORY ON PUBLIC ENGAGEMENT SO EVERY TIME WE NEED ANY KIND OF PUBLIC ENGAGEMENT ACTIVITY WE KNOW THEY ARE THE ONES WHO ARE GOING TO ADD BUT WE -- I DO KNOW THEY USE DIFFERENT METHODOLOGIES NOT ONLY DO THEY ORGANIZE WORKSHOPS AND WEBINAS ON NUMBER OF ISSUES THEY ALSO HAVE CITIZENS MEETINGS, THEY PICK SURVEYS SEND QUESTIONERS SO IN THE CASE OF OPINIONS THAT I MENTIONED EACH OPINION TOWARD WRITING OPINION WE ALREADY HAD. AND IN THE WEBSITE YOU CAN FIND BRIEFS AND REPORTS ON THE ENGAGEMENT ACTIVITIES. ONE OF THEM I THINK IS IN OUR RECENT NEW SECTION BECAUSE IT IS A VERY LONG REPORT ON WHAT THEY DID, HOW THEY DID IT WHEN IT CAME TO THE VIEWS OF DIFFERENT PUBLICS AND DUAL USE SO THEY HAVE METHODOLOGY, VERY CLEARLY EXPLAINED, HOW THEY ANALYZE AND ASSESS IMPACT AND SO ON. SO WE HAVE BEEN LUCKY THAT WE HAVE A GROUP SOLELY DEVOTED TO UNDERTAKING PUBLIC ENGAGEMENT. MY RECOMMENDATION WOULD BE TRY TO WORK WITH SOMEBODY WHO IS REALLY, YEAH. >> CAN YOU HEAR ME? SO JIM SAID ASK A HARD QUESTION SO THIS WILL BE A HARD ONE. I HAVE BEEN THINKING ABOUT IF PUTTING TOGETHER A NEUROETHICS ROADMAP IS AN OPPORTUNITY. THAT WE CURRENTLY HAVE. IT'S THE BRAIN 2025 IS GUIDANCE FOR THE NIH BRAIN INITIATIVE BUT IT HAS IMPACT BEYOND THAT. SO MY QUESTION TO EACH OF YOU WHO HAVE BEEN INVOLVED IN DOING NEUROETHICS IN A NUMBER OF WAYS FOR A LONG TIME, IS WHAT DO YOU WANT TO SEE IN THIS ROADMAP THAT WOULD BE HOW IMPORTANT TO KINDS OF EFFORTS YOU HAVE BEEN SPEARHEADING, WHAT WOULD SYNERGIZE THEM, WHAT WOULD ADD TO THEM, WHAT WOULD COMPLIMENT THEM? WHAT SHOULD WE NOT MISS THE OPPORTUNITY TO INCLUDE I GUESS IS THE QUESTION. TOLD YOU IT WOULD BE HARD. (OFF MIC) >> I WOULD ENCOURAGE THE NEUROETHICS WORKING GROUP TO COVER, NOT ONLY APPLY ETHICS ISSUES BUT ALSO UNDERTAKE PHILOSOPHICAL REFLECTION SO CALL FOR MORE INVOLVEMENT OF HUMANITIES IN THE SOCIAL SCIENCES AND WOULD PROBABLY RECOMMEND PUTTING SOME DISTANCE WITHIN BRAIN APPLIED ETHICS APPROACH THE DISCUSSION OF MANY ETHICAL ISSUES. BECAUSE I BELIEVE SUCH APPROACH IS LIMITED. AND MISSES A HOT OF IMPORTANT ISSUES RAISED, EVEN ACKNOWLEDGED BY RESEARCH AND DEFINITELY ACKNOWLEDGED BY PUBLIC AS WELL. I THINK THAT THE HYPE MANY TIMES AND FIERCE MANY TIMES HAVE TO DO WITH AGAIN, THE LACK OF REFLECTION SOME OF THESE ISSUES. THAT WOULD BE MY RECOMMENDATION. >> NEUROETHICS APPLIEDED TO DEVELOPMENT OF PROPOSAL SUBMITTED FOR FUNDING. AND THE PROPOSAL IS ALWAYS BETTER BECAUSE PEOPLE THOUGHT ABOUT UNINTENDED CONSEQUENCES AND LIKELY WILL HAVE GREATER IMPACT. THAT PROPOSAL CAN PASS IRB AND IAKUK AND IRB APPROVALS THEN IT COMES TO FUNDING PROPOSALS LIKE KAVLI AND HUMAN BRAIN PROJECT. ARE THERE GRANTS THAT COME TO YOUR DISEASE THAT YOU LOOK AT AND THOUGHT ETHICALLY APPROPRIATE AND FUNDABLE? ARE THERE THINGS YOU PROHIBITED BECAUSE OF ETHICAL CONCERNS? WE DON'T NEED DETAILS BUT ARE THERE THINGS LIKE THAT THAT HAPPEN AND IN GENERAL WHAT THEY MIGHT BE. >> VERY BRIEFLY. THE EUROPEAN COMMISSION IS VERY STRICT WITH REGARDS TO WHAT CAN BE DONE AND WHAT CANNOT BE DONE. CERTAIN REGULAR RAYINGS HAVE TO BE FOLLOWED. AND -- REGULATIONS HAVE TO BE FOLLOWED. I'M NOT IN CHARGE COMPLIANCE, I'M NOT COMPLIANCE OFFICER, HOWEVER, I DO KNOW THAT WITH THE COMPLIANCE OFFICER DOES, WITHIN THE HPP, ETHICS SOCIETY AND HPP IS GET ALL RELEVANT ETHICS APPROVALS, IT MAYBE LOCAL, THEY HAVE TO ABIDE BY EUROPEAN LEGISLATION AS WELL. HE DETERMINES WHETHER HE HAS THE RIGHT RECOMMENDATION. IF THERE ARE ANY DOUBTS ABOUT HUMAN SUBJECTS, HE SENDS THE APPROVALS TO A SPECIALIST IN HUMAN RESEARCH. BUT I COULDN'T TELL YOU YES, HE HAS FOUND SOMETHING THAT CANNOT BE FUNDED BUD I CAN TELL YOU IT IS VERY STRICT WHAT SCIENTIST CAN AND CANNOT DO. >> IT WASN'T SO MUCH THAT. I WAS PRESUMING PROPOSAL HAD THOSE APPROVAL BUT WHEN YOU SEE THE PROPOSAL YOU THINK UNINTENDED CONESS QUEENSES NO THOUGHT OF BY EITHER REGULATORY AGENCIES OR INVESTIGATOR AND YOU THOUGHT THEN THAT IT CONSEQUENCES AND YOU THOUGHT IT SHOULD BE SOMETHING YOU COULD BE CAUTIOUS ABOUT BECAUSE THAT'S WHAT WE ANTICIPATE, AS RESEARCH PROGRESSES THERE'S THINGS LIKE THAT NOT THOUGHT OF BEFORE SO THERE ARE THINGS LIKE THAT THAT HAVE COME UP. >> I'M NOT THE BEST PERSON TO ASK BECAUSE I'M NOT ETHICS SUPPORT SO I CANNOT THINK OF -- I WOULDN'T KNOW HOW TO ANSWER THAT QUESTION. I DO KNOW THERE ARE MANY THINGS WE ARE CAREFULLY PAYING ATTENTION TO, ONE IS DUAL USE WHICH IS QUITE CONTROVERSIAL. AND OPINION TOOK TIME AND EFFORT. WE WANTED TO BE FAIR. TO RESEARCH BEING DONE WITHIN HPP BUT ACKNOWLEDGE THERE MAYBE PROBLEMS. WE ARE HAPPY TO KNOW THEY HAVE DECIDED TO FOLLOW-UP ON THIS AND SAY OKAY NOW WE NEED THE IMPLEMENTATION PLAN AND WE NEED A DUAL USE WORKING GROUP WE PROVIDE, ASSESS SOME POTENTIAL USE. SO WE ARE DEFINITELY CAREFUL AND AWARE OF THAT POSSIBILITY BUT THE FUNDING -- WE ARE NOT THE ONES WHO CAN SAY THAT, IT WOULD BE THE REVIEWERS. WE CAN -- EUROPEAN UNION, WE CANNOT PROVIDE FUNDING FOR THIS RESEARCH. BECAUSE OF A B C, WHATEVER >> CAROLYN. >> SO FOR US IN TERMS OF SCIENTIFIC FUNDING, THE MAJORITY OF OUR SCIENCE PROGRAM FUNDING GOES THROUGH KAVLI INSTITUTES, WHICH ARE QUITE STAND ALONE IN THE SENSE THAT THEY HAVE THEIR OWN DIRECTORSHIP, ADVISORY BOARDS SET UP IN A WAY THEY THINK MOST USEFUL FOR COMMUNITIES. SO AS PROGRAM OFFICERS AND CENTRALLY THINKING ACT THE KAVLI FOUNDATION ITSELF VERSUS KAVLI INSTITUTES, WE PLACE TRUST NEE NOT ONLY LEADERSHIP OF THOSE INSTITUTES BUT ALSO IN THE UNIVERSITY WE PUT THE KAVLI INSTITUTES SO THINKING ABOUT THE HISTORY OF EXCELLENCE AND ESTABLISHMENT OF THOSE UNIVERSITIES IS ONE OF THE THINGS THAT BECOMES A CRITERIA. WITH REGARD TO THINKING ABOUT THE ETHICS OVERSIGHT AND COMPLIANCE, WE DON'T ACTIVELY LOOK AT THAT BUT AGAIN TRUSTING IN THE DIRECTORS AND SCIENTIFIC LEADERSHIP IS IMPORTANT BUT ONE THING THIS DOES BRING UP IS THAT WITHIN EACH UNIVERSITY THEMSELVES, HAVING SOME LAYER OF ETHICS EXPERTISE, IS REALLY IMPORTANT AND IS SOMETHING TO THINK ABOUT. >> CAN I ADD SOMETHING? I THINK THAT ALSO POINTS TO SOMETHING FOR US IS KEY, WHICH IS RESEARCHERS AWARENESS. YOU SAID LET'S SAY EVERYTHING IS FINE FROM COMPLIANCE PERSPECTIVE, NOW IT'S A QUESTION TRYING TO UNDERSTAND AND ADDRESS AND REFLECT UPON UNINTENDED WE TRY TO TO PROMOTE THAT THINKING IN SCIENTISTS AS WELL, SO MANY SCIENTISTS ARE WORKING WITHIN THE HPP WE COULDN'T TELL PERSONAL HI WITH EACH AND EVERY ONE OF THEM BUT THE IDEA IS TO REMOTE DIFFERENT ATTITUDE IN THOSE DOING THE SCIENCE. SO THEY WILL BE CONCERNED AND HAVE SPECIAL ETHICAL SENSITIVITY, SO THAT'S -- AS WELL. >> FOLLOWING ON THAT QUESTION -- >> OKAY. ARLEEN, WONDER IF YOU COULD TALK A LITTLE BIT ABOUT HPP TRYING TO BUILD DATA SHARING PLATFORM AND THERE ARE CERTAIN VALUES ABOUT THE KIND OF DATA AND PRECIOUSNESS OF DATA AND WHAT ANIMAL -- WHAT MODELS WERE USED, I WAS THINKING NON-HUMAN ANIMAL MODELS. I KNOW IN THINKING ABOUT DATA SHARING, PUTTING DATA INTO THAT CONCERNS ABOUT STANDARDS FOR CONDUCTING RESEARCH. CAN YOU TALK ABOUT THE THE STATE OF THAT AND HOW THOSE ETHICAL CONVERSATIONS HAVE EVOLVED? >> ACTUALLY WHEN IT COMES HOW THE STATE OF THAT HAS TO DO WITH DATA PROTECTION GOVERNANCE WORKING GROUP, I'M NOT PART OF THAT WORKING GROUP. SO THAT -- THIS IS A WORKING GROUP THAT FOCUSES ON THOSE ISSUES THAT COME UP AS WE TRY TO IMPLEMENT GOOD GOVERNANCE DATA GOVERNANCE SYSTEM. WHAT I CAN TELL YOU IS ETHICS SUPPORT IS ACTIVELY WORKING WITH A DIFFERENT SPs TO SOLVE POTENTIAL PROBLEMS. ONE, ONE PROBLEM THAT IS RESILIENT IS THE FACT THAT SOME -- WITHIN H PP YOU HAVE THOSE WHO GATHER INFORMATION OR DATA AND THOSE WHO USE INFORMATION THE USERS. WHEN IT COMES TO USERS THEY WILL USE INFORMATION PROVIDED BY HOSPITALS. THIS IS INFORMATION PATIENTS PROVIDE IN A CLINICAL CONTEXT. THIS IS -- THIS DATA IS USED FOR RESEARCH PURPOSES NOT CLINICAL PURPOSES SO THAT'S SOMETHING ETHIC SUPPORT CONTINUES TO ADDRESS TO BE AS OPEN AS POSSIBLE WITH REGARDS TO CONSENT THEY SHOULD USE IN THOSE CASES. BUT WHEN IT COMES TO DETAIL, I COULDN'T PROVIDE THAT BECAUSE I'M NOT PART OF THAT GROUP. WE DO HAVE WHICH I KEEP THINKING YOU WERE TALKING NON-HUMAN PRIMATES WE HAVE AN ISSUE WITH IT. NOT AN ISSUE BUT THE EUROPEAN UNION HAS A VERY STRICT STRINGENT LEGISLATION WHEN IT COMES TO NON-HUMAN PRIMATE USE. THE TERM THEY USE IS NOT NECESSARY BUT HAS TO BE ESSENTIAL. WHICH AGAIN BEGS THE QUESTION WHEN IS ESSENTIAL, WHAT IS ESSENTIAL? BECAUSE WHETHER NON-HUMAN PRIMATES CAN BE USED OR NOT DEPENDS ON THEIR ESSENTIAL CHARACTERISTICS OF RESEARCH. SO ONE THING THAT -- ONE ISSUE U THAT HAS COME UP HAS TO DO WITH THE FACT THAT OF COURSE TODAY, MORE THAN EVER WE WANT INTERNATIONAL COLLABORATION. FROM THERE'S SOME COUNTRIES WHERE STANDARDS ARE NOT AS STRINGENT WHEN IT COMES TO USE OF NON-HUMAN PRIMATES AS EUROPEAN STANDARDS. SO IF THE HUMAN BRAIN PROJECT WAS TO HAVE PLATFORMS THAT WILL BE WIDELY USED INTERNATIONALLY OPEN ACCESS AND WE'LL BE THE REPOSITORY, ALL KNOWLEDGE IN CERTAIN AREAS, BUT SOME OF THAT COMES FROM WHAT WE DO, WITH THAT INFORMATION COMES FROM COUNTRIES THAT DO NOT HAVE VERY STRICT GUIDANCE WHEN IT COMES TO USE OF NON-HUMAN PRIMATES. SO THIS IS SO FAR THE REGULATION IT CANNOT BE USED, THAT INFORMATION JUST CANNOT BE USED. AND SO FAR THAT APPEARS TO BE CASE, NOT BEING USED, IT RAISES THE ISSUE WHETHER A COLLABORATION IS POSSIBLE WITH THOSE COUNTRIES, B, WHETHER YOU CAN BE A PLATFORM THAT EXCLUDES INFORMATION. THIS IS AN ONGOING PROBLEM. SOME PROPOSE SCIENTIST LAB WORKS WITH A LAB IN A COUNTRY WHERE LEGISLATION IS NOT AS STRICT, HPP LAB PROBABLY PREPARE FORMS SAYING THAT HE IS RESPONSIBLE FOR DESIGNING OR SHE MAKES SURE THAT PEOPLE IN THE OTHER LAB IN THESE OTHER COUNTRY HAVE TAKEN ALL THE MOST STRINGENT -- THIS IS AN ONGOING PROBLEM. WHAT DO WE DO IN THOSE CASES, IT'S NOT AS -- USE IN HUMAN PRIMATES, WHETHER WE CAN USE INFORMATION THAT COMES FROM COUNTRIES WHERE THEY DON'T HAVE AS STRINGENT REGULATIONS. Q. THAT RESEARCH WOULD BE PUBLISHED, IT COULD BE PUBLISH IN JOURNAL SO AN INTERESTING LINE YOU ARE DRAWING. >> BUT AGAIN HAS TO DO WITH THIS IS VERY -- CONCERN. VERY STRICT. SO THE JOURNAL DECIDED ACCEPTABLE TO PUBLISH IN THE INTERNATIONAL COMMUNITY OF SCHOLARSHIP, THAT THE DATA CAN BE USED ON CERTAIN PLATFORMS. USE THE DISCONNECT. >> UNLESS YOU CAN JUSTIFY. >> I'M SORRY WE ARE BEHIND IN TERMS OF WHEN WE WANT TO TAKE A BREAK THOUGH WE'RE GOING TO MAKE UP FOR THE TIME LATER. WE ARE BACK TO THE SECOND PART OF THE WORKSHOP. MAYBE THIS IS A WAY OF SITUATING EVERYBODY THIS SESSION IS A SUCCESSION OF NUMBER OF SHORT TALKS, EACH TALK WITH FIVE MINUTES Q&A AFTER. IT'S ON RESEARCH THAT INDIVIDUALS WHO ARE MEMBERS OF THE SUBCOMMITTEE OR COLLEAGUES ARE CARRYING OUT THAT ARE INSTRUCTED IN THE AREA OF NEUROETHICS. WE ARE STARTING WITH LAURA DUNN, YOU CAN SEE PROFESSOR O PSYCHIATRY, BEHAVIORAL SCIENCES STANFORD TALKING ETHICS INNOVATION AND NEUROSCIENCES. >> THANK YOU. SO I'M HAPPY TO BE HERE. I'M REPRESENTING LAURA ROBERTS TODAY, MEMBER OF CO-INVESTIGATOR ON HER TEAM, WE HAVE BEEN WORKING TOGETHER FOR A LONG TIME. IN THE DEPARTMENT I'M KNOWN AS THE OTHER LAURA. T I CAN SAY I CAN CHANNEL HER. I DON'T KNOW IF THAT'S TRUE BUT I CAN -- SO I'LL DO MY PEST TO TELL YOU ABOUT OUR RESEARCH. THIS IS OUR TEAM. LAURA ROBERTS IS PI. NEUROETHICS FUNDED GRANTS FROM THE BRAIN INITIATIVE. WE ALSO HAVE AS YOU CAN SEE NUMBER OF OTHER CO-INVESTIGATORS INCLUDING CASEY HALPERN NEUROSURGEON STANFORD RESPONDED BY BRAIN INITIATIVE THIS RESEARCH IN A LITTLE BIT. JANE KIM, STATISTICIAN. MILDRED CHO, MANY OF YOU PROBABLY KNOW ETHICIST AT STANFORD AND CO-INVESTIGATOR ON A SUPPLEMENT WE GOT ON TO EXTEND WORK INTO ALZHEIMER'S DISEASE IN NEUROETHICS. LONG TIME COLLEAGUE OF MINE, BARTON PALMER UCSD. WE WOULD LIKE TO SITUATE FIRST OUR RESEARCH AND TALK ABOUT THE IMPACT OF NEUROPSYCHIATRIC DISEASE AND I THINK THIS IS OBVIOUS TO EVERYBODY IN THIS ROOM. BUT JUST TO EMPHASIZE THAT AS REASON FOR OUR WORK. I DO CLINICAL WORK, I TEACH AROUND THE GERIATRIC PSYCHIATRY FELLOWSHIP AND SEE MY OWN PATIENTS AS WELL AS SUPERVISING AND SO I WORK WITH VULNERABLE OLDER PATIENTS AND IT HAS A LOT OF MEANING PERSONALLY TO ME. AS YOU CAN SEE IF YOU COMBINE PSYCHIATRIC NEUROLOGICAL DISORDERS THEY ARE LEADING CAUSE OF DISABILITY ADJUSTED LIFE YEARS IN THE US. SURPASSING CARDIO CARDIOVASCULAR DISEASE IN CANCER. SO WE HAVE BEEN THINKING ABOUT HOW DOES WHAT WE ARE TRYING TO DO IN THE BRAIN INITIATIVE, HOW DOES IT PARALLEL AND EXTEND PERHAPS THE VISION OF THE LC WORK PART OF THE HUMAN GENOME PROJECT. SO WE KIND OF QUICKLY SIDE BY SIDE HUMAN GENOME PROJECT DISCUSSION OF THE PHILOSOPHICAL ETHICAL QUESTIONS IN BOLD THERE RAISED BY THAT WORK, AND THOSE BE CAREFULLY ASSESSED AND LED TO A LOT OF EXCELLENT INTERESTING RESEARCH AND PROBABLY SOME UNEXPECTED FINDINGS AND PERHAPS ALSO ABSENCE OF FINDINGS. SOME UNEXPECTED WAYS. WE PUT THAT NEXT TO BRAIN 2025 SCIENTIFIC VISION. WE ACTUALLY HOPING TO WRITE ABOUT -- WE ARE PLANNING TO WRITE ABOUT THIS TO THINK ABOUT SIMILARITIES AND DIFFERENCES BETWEEN ETHICAL -- CALLS FOR DISCUSSION OF ETHICAL IMPLICATIONS RELATED TO THE HUMAN GENOME PROJECT. VERSUS BRAIN INITIATIVE. PEOPLE HAVE TOUCH ON THIS, I WON'T BELABOR THAT. WE WILL HARE MORE IN A FEW MINUTES ABOUT SOME OF THE ETHICAL ISSUES RAISED BY REALLY INNOVATIVE WORK FOR ME AS PSYCHIATRIST WHO TRAINED I WON'T TELL YOU HOW MANY YEARS AGO, WAY BEFORE THISUP INVESTIGATIVE NEUROSCIENCE WAS REALLY ON THE SCENE, INTERVIEW NEUROSCIENTIST AT STANFORD AND GET TO LEARN ABOUT THESE THINGS, AS OUR OR, IT'S MIND BOGGLING TO THINK ABOUT IMPLICATIONS OF THIS WORK AND THEN DEVELOP A CONVERSATION WITH SCIENTISTS IRB MEMBERS ETHICISTS AND EVENTUALLY SHOW YOU IN A MINUTE, PATIENTS WITH ETHICAL IMPLICATIONS SO MY JOB IS PART OF THIS RESEARCH TEAM IS TO TRY TO THINK ABOUT SCIENCE AND GET OTHERS TO THINK ABOUT, DISCUSS ISSUES OF ETHICAL RELEVANCE WHICH IS TRICKY. NEUROSTIMULATION AND MODULATION AND HOW DO WE TRY TO TRANSLATE THE NEUROSCIENCE WORK GOING ON, THE NEUROTECHNOLOGY, THE TOOLS SO WE CAN HAVE A DISCUSSION WITH -- WE CAN TALK ABOUT HERE THIS MORNING ABOUT PUBLIC ENGAGEMENT, HOW DO WE BRING THESE TECHNOLOGIES AND POTENTIAL INTERVENTIONS INTO THE PUBLIC SPHERE AND DISCUSSION SO WE CAN REALLY ENGAGE ETHICAL ISSUES. THAT'S ONE OF THE WAYS THIS IS TRICKY. OUR TEAMS, LET ME GIVE AN OVERVIEW OUR TEAM APPROACH OVER MANY YEARS YOU CAN SEE GOING BACK TO 19 97. MOST IS LAURA ROBERTS. FUNDING FROM VARIOUS AGENCIES HAS BEEN ABOUT UNDER-REPRESENTED OR POTENTIALLY VULNERABLE POPULATIONS, AS YOU CAN SEE IN THE CLINICAL RESEARCH SETTING IN THE CLINICAL RESEARCH CONTEXT LOOK AT INFORMED CONSENT, SURROGATE DECISION MAKING, STIGMA, RURAL POPULATIONS, AND INTERSECTION OF VARIOUS VULNERABILITIES, IN THE CONTEXT OF DRUG ABUSE MENTAL ILLNESS, PSYCHIATRIC RESEARCH, WORKERS, PEOPLE WHO ARE EMPLOYEES, WHAT ARE -- IN RELATION TO GENETIC RESEARCH, WHAT ARE VULNERABILITIES THERE. RESIDENTS OF RESIDENTS IN HEALTHCARE AND THEIR PERSONAL HEALTH ISSUES, RURAL RUN AWAY YOUTH, THEN SHOW YOU LITTLE BIT OF DATA FROM THIS GRANT PSYCHIATRIC GENETICS RESEARCH. THIS WAS A STUDY THAT I DID THAT LAURA WAS A CO-INVESTIGATOR ON LOOKING AT HOW DO PEOPLE HOW DO CAREGIVERS OR OTHER LOVED ONES, PEOPLE WITH ALZHEIMER'S DISEASE MAKE DECISIONS ABOUT PARTICIPATION IN ALZHEIMER'S DISEASE RESEARCH DEPENDING ON VARYING THE RISK AND BENEFIT PROFILE THESE RESEARCH STUDIES. AND YOU CAN THINK ABOUT THESE STUDIES LEADING UP TO NOW WE'RE REALLY NEW EXCITING ERA OF INNOVATIVE NEUROSCIENCE RESEARCH ON THE BRAIN. WHERE INDIVIDUALS WHO MAY BENEFIT FROM THIS RESEARCH ARE ALSO ONES WE NEED TO PARTICIPATE IN RESEARCH BUT ALSO MAY HAVE THESE POTENTIAL VULNERABILITIES. SO OUR GOAL IS TO SEE IN THE TITLE OF OUR GRANT TO GATHER DATA THAT WILL ENABLE ETHICAL PARTICIPATION IN THIS INNOVATIVE NEUROSCIENCE RESEARCH. WE FOCUSED ON MENTAL ILLNESS AND ADDICTION. FROM BRIEF OVERVIEW. ONE EXAMPLE IS THIS GRANT CALLED THE PGRE WHICH STANDS FOR PSYCHIATRIC GENETIC RESEARCH ETHICS. WHICH -- THAT WAS FROM A WHILE AGO. FUNDED AND COMPLETED THE IN THE LATE -- ANOTHERS? IS THAT WHAT IT'S CALLED? WE ARE ANALYZING DATA FROM THE STUDY. THE GOAL OF THE PROJECT WAS TO LOOK AT DIFFERENT STAKEHOLDER GROUPS INCLUDING PEOPLE WITH MENTAL ILLNESS PEOPLE WITH MENTAL ILLNESS, FIRST DEGREE FARM I MEMBERS WITH MENTAL ILLNESS, HEALTHY COMMUNITY COMPARISON GROUP WHO DID NOT HAVE MENTAL ILLNESS OR FAMILY MEMBER WITH MENTAL ILLNESS, THAT'S GROUPS TOGETHER TOTALED -- THERE WERE 73 PEOPLE WITH MENTAL ILLNESS, APPROXIMATELY 50 FAMILY MEMBERS AND THEN 70 COMMUNITY CONTROLS. ANALYSES I'M ABOUT TO SHOW YOU WE GROUP THESE FIRST GROUPS TOGETHER BECAUSE THEY DIDN'T DIFFER SIGNIFICANTLY FROM ONE ANOTHER IN THEIR RESPONSES, I WILL SHOW YOU THAT IN A MINUTE. THEN COMPARE THEM TO PEOPLE ENGAGED IN DOING GENERAL TUCK RESEARCH SO FUNDED INVESTIGATORS AS WELL AS COLLABORATORS. BASED ON NIH FUNDING. THEN SAMPLE OF IRB CHAIRS. THIS IS LARGE IN PERSON INTERVIEW STUDY FOR THE FIRST THREE GROUPS THEN SURVEYS MAILED OR COULD BE COMPLETED ONLINE, THOSE LAST TWO GROUPS, FOURTH AND FIFTH GROUPS. THE GOAL BEING TO GATHER PERSPECTIVES OF THOSE ENGAGED IN THE RESEARCH OR AFFECTED BY THE RESEARCH OR POTENTIALLY PARTICIPANT IN RESEARCH. SO THIS IS AN EXAMPLE OF THE KINDS OF ANALYSES THIS IS UNPUBLISHED SO FAR. I BELIEVE THAT'S STILL TRUE. WE LOOK AT THINGS LIKE ASKING WITH REGARD TO DIFFERENT SCENARIOS, THOSE ARE ON THE X AXIS HERE. THAT ARE BRIEFLY DESCRIBE RESEARCH VIGNETTES OR SCENARIOS AND ASKING PEOPLE TO RATE HOW POTENTIALLY HARMFUL DO YOU BELIEVE THIS STUDY WOULD BE AND I CAN GIVE MORE DETAILS IF YOU WANT ABOUT THESE BUT ESSENTIALLY THOSE ARE ASKING FOR PERSONAL AND FAMILY MEDICAL HISTORY UNDERGOING GENETIC TEST, HAVING MEDICAL RECORDS EXAMINED ANNUALLY, AND THEN AS YOU GET HERE LAST TWO ARE THE MORE INTERVENTION STUDIES. USING A MEDICATION BASED ON GENETICS THEN GENE REPLACEMENT TRIAL. THESE ARE DESCRIBED IN FAIRLY BROAD TERMS THESE ARE NOT TEN PAGE CONSENT FORMS, THEY ARE ABOUT THIS LONG, THE VIN NETS. THEN USE 0 TO 10 RATING SCALE WITH TEN HIGHEST POTENTIAL FOR HARM. AS YOU CAN SEE AS THE COMPLEXITY OF THE TRIAL INCREASES, ALL THE GROUPS TEND TO INCREASE IN THEIR RATINGS OF POTENTIAL HARM. THE COMMUNITY MEMBERS, THIS INCLUDES PEOPLE WITH MENTAL ILLNESS, FAMILY MEMBERS,, AS WELL AS HEALTHY COMPARISON CONTROLS GROUPED TOGETHER FOR THIS ANALYSIS. THEY ARE ABOUT THE SAME FOR ALL THREE OF THESE, THEY DIFFER FROM THE RESEARCHERS AND IRB MEMBERS THE IRB MEMBERS TEND TO BE THE MOST CAUTIOUS. I WON'T GO INTO ALL BETWEEN GROUP COMPARISON HERE. BUT JUST GIVE YOU A GENERAL SENSE. AGAIN, ANOTHER ASPECT WE LOOK AT IS POTENTIAL FOR BENEFIT HOW DO POTENTIAL VOLUNTEERS INVESTIGATORS AND IRB MEMBERS SEE GENETIC RESEARCH WITH RESPECT TO POTENTIAL BENEFIT. THE LIKELIHOOD OF BENEFIT WITH TEN BEING HIGHEST PEOPLE IN THE COMMUNITY ARE MORE OPTIMISTIC OR HOPEFUL ABOUT POTENTIAL BENEFITS COMPARED TO EVEN INVESTIGATORS AND IRB MEMBERS THOUGH IT INCREASES AS COMPLEXITY OF TRIALS INCREASES. LOOKING HOW DOES WILLINGNESS TO PARTICIPATE PARTICIPATE, WOULD YOU WILL ARING TO PARTICIPATE IN RESEARCH AND ASKED IF THIS RESEARCH WERE REGARDING A PHYSICAL ILLNESS, MENTAL ILLNESS, AND OTHER DIFFERENT TYPES OF SCENARIOS WOULD YOU BE WILLING TO INVESTIGATE. INVESTIGATORS AND IRB MEMBERS ASK TO SPECULATE WHETHER PATIENTS WOULD BE WILLING TO PARTICIPATE. FOR COMPLEXITY SCENARIOS BUT ALSO THE DIFFERENCES BETWEEN THE COMMUNITY MEMBERS AND INVESTIGATORS AND IRB MEMBERS. SO ONLY RELIED ON INVESTIGATORS IRB MEMBERS WE'LL BE MISSING CURRENT STUDY INTERVIEW NEUROSCIENTIST WHETHER ETHICAL ISSUES INNOVATIVE NEUROSCIENCE WE WOULD MISS A REALLY IMPORTANT SET OF PERSPECTIVES ABOUT THIS RESEARCH. GIVE YOU A SENSE OF THE KIND OF WORK. THE CURRENT -- LET ME SWITCH GEARS, THIS IS THE CURRENT PROJECT AND RATIONALE, I WON'T READ IT TO YOU BUT WE HAVE BEEN TALKING ABOUT ANCHORING WORK MAINTAINING PUBLIC TRUST FOR RESEARCH PUBLIC SUPPORT FOR RESEARCH, THAT WILL BENEFIT WE HOPE PEOPLE SUFFERING FROM THESE VERY DISABLING CONDITIONS. SO OUR GOALS ARE TO AGAIN GATHER STAKEHOLDER DATA, PARTICULARLY FROM PEOPLE WHOSE VOICES MAYBE UNDER-REPRESENTED IN RESEARCH. THERE'S A MODEL, I CAN TALK MORE MAYBE DURING THE DISCUSSION. WE ARE CALLING THE ROBERTS ETHICAL VALENCE MODEL RELATED TO FACTORS THAT INFLUENCE WILLINGNESS TO PARTICIPATE IN RESEARCH AND THAT MODEL IS GUIDING OUR HYPOTHESES FOR THE STUDY. STRENGTHEN ETHICAL RIGOR OF NEUROSCIENCE RESEARCH. I'M GOING TO SHOW YOU SOME VERY EARLY DATA, WE HAVE TWO MAIN AIMS IN OUR GRANT, WE ARE PARTWAY THROUGH AIM ONE RIGHT NOW. AS WELL AS DOING PILOT WORK FOR AIM TWO. AIM ONE IS BASICALLY A QUALITATIVE STUDY THAT AIMS TO DESCRIBE ETHICAL LANDS SCAPE OF NEUROSCIENCE RESEARCH BROADLY DEFINED BY INTERVIEWING A NUMBER OF STAKEHOLDER GROUPS WHICH NOW AS I MENTIONED WITH SUPPLEMENT EXTENDED TO ALZHEIMER'S DISEASE INVESTIGATOR SO INTERVIEWING -- THESE INTERVIEWS ARE COMPLETED. ETHICISTS WERE DONE WITH THESE, IRB MEMBERS, THEN SOON TO INTERVIEWS WITH LIVED EXPERIENCE GROUPS, LIVING WITH MENTAL ILLNESS, ORB SUBSTANCE ABUSE AND FAMILY MEMBERS OF INDIVIDUALS, NOT NECESSARILY OF THOSE SAME INDIVIDUALS. THEN SIMILARLY WITH THE SUPPLEMENT PARALLEL SAMPLE INVESTIGATORS DOING ALZHEIMER'S RESEARCH, TRYING TO TARGET PEOPLE DOING INNOVATIVE RESEARCH. BROADLY, DON'T HAVE TO BE BRAIN INITIATIVE FUNDED RESEARCHERS, MAYBE DOING BASIC SCIENCE RESEARCH, TRANSLATIONAL RESEARCH OR ACTUAL CLINICAL RESEARCH WE ARE TRYING TO GET A VERY BROAD SPECTRUM. THEN THE SECOND PART WE WILL DO A LARGE SCALE ONLINE SURVEY. ONLINE USING THIS INTERESTING PLATFORM, MY TIME IS UP? I WILL SHOW YOU QUICKLY. I'M SORRY. THESE ARE SOME OF THE QUOTATIONS FROM THE FROM THE INVESTIGATORS. AND THINGS SURPRISING AS WE HAVE BEEN DOING THESE INTERVIEWS AND REALLY INTERESTING. KIND OF THE CAUTIONS OF THE INVESTIGATORS SEE IN TERMS OF ETHICAL ISSUES AND RESEARCH INNOVATION. WHAT WOULD IT TAKE TO -- IT WOULD TAKE TO TRANSLATE FROM ANIMAL MODELS TO HUMANS, AGAIN, THAT COMES UP HERE. ISSUES AROUND DATA SHARING. THEN INTERESTING ISSUES ABOUT NOT CONDUCTING RESEARCH AND WHAT WE'RE MISSING BY NOT CONDUCTING RESEARCH THAT MORE ECOLOGICALLY VALID WAYS. ONE OF THE BIGGEST THINGS THAT I WANT TO EMPHASIZE, IS THE PHRASE HERE OVERBLOWN HYSTERIA, WE HAVE BEEN TALKING HYPE A FEW TIMES. THIS IS COME OUT A LOT IN INTERVIEWS, BECAUSE I HAVE DONE MANY INTERVIEWS WITH NEUROSCIENTIST, I CAN SAY THIS ON QUALITATIVE LEVEL. ONE OF THE MAIN WORRIES THAT NEUROSCIENTISTS HAVE IS ABOUT HIGH -- ABOUT PREMATURE ADOPTION OR DISSEMINATION OF NEUROSCIENCE FINDINGS INTO THE PUBLIC SPHERE. WE -- IRB INTERVIEWS. I JUST THROUGH IN HA QUOTE HERE FROM ERIC KENDALL FROM HIS 2005 SOCIETY FOR NEUROSCIENCE, THE IMPORTANCE ASSESSING THESE ISSUES EVALUATING THEM. NOT JUST BY GROUP OF INDIVIDUALS DOING THE WORK. SO IMPORTANT HERE BUT ASSESSING THE ETHICAL SIGNIFICANCE MORE BROADLY FOR SOCIETY. HIS CAUTIONARY TALE WE NEED TO KEEP IN MIND FOR THIS WORK. SOON WE WILL BEGIN INDIVIDUALS WITH MENTAL ILLNESS OR ADDICTION. SORRY IT TOOK SO LONG. [APPLAUSE] >> LET'S TAKE ONE QUESTION AND WE CAN STAY CLOSE ON TIME. THANKS, LORI. ONE QUESTION. OR NOT. JIM. YOU WANT TO USE THAT ONE? IN THE DATA YOU ARE SHOWING, YOU LOOKED AT PATIENTS IRB INVESTIGATORS, THE DICHOTOMY BETWEEN EXPECTATIONS AND WORRY, WAS STRIKING. WERE THOSE PATIENTS DID THEY HAVE INFORMED CONSENT OR WHAT DID THEY KNOW ABOUT THESE TRIALS AND -- >> THIS DATA FROM PGRE STUDY. THESE WERE HYPOTHETICAL VERY LIMITED DESCRIPTIONS OF THESE STUDIES. BUT THEY WERE -- THIS WAS A VERY NARROW SLICE OF THE DATA, WE HAVE A LOT OF DATA ABOUT PERSPECTIVES ON RESEARCH SAFEGUARDS. INCLUDING INFORMED CONSENT, ALTERNATIVE DECISION MAKERS. THOSE DATA ARE PUBLISHED, BUT THIS WAS NOT IN IN REFERENCE TO AN ACTUAL TRIAL. >> ONE OF THE REASONS I ASK, WOULD BE ASHAME IF IT WAS. BUT SINCE IT'S HYPOTHETICAL, IT CAN POTENTIALLY BE USED BETTER INFORM CONSENT. >> I HOPE WE CAN TALK ABOUT THAT DURING THE DISCUSSION BUT ONE OF THE THINGS CASEY HARPERN, NEUROSURGEON DOING A INTERESTING STUDY USING IMPLANTS OF NEUROSTIMULATION SURGERY TO TREAT LOSS OF CONTROL IN PEOPLE WHO FAILED BARIATRIC SURGERY, MY ROLE ON HIS STUDY IS TO COME UP WITH WHAT TO ASSESS CAPACITY AND MAKE SURE INFORMED PROCESS IS AS ROBUST AS POSSIBLE. SO I WAS READING THROUGH THE VERY LENGTHY CONSENT FORM ON THE AIRPLANE AND I THINK WE'RE STILL REALLY STRUGGLING WITH THOSE ISSUES. [APPLAUSE] INSOO HYUN CASE WESTERN WILL TALK ETHICAL CONSIDERATIONS FOR HUMAN ORGANOID RESEARCH. >> GOOD MORNING. I'M GOING TO FIRST START BROAD AND THEN GET NARROW AND GO BACK OUT BROAD AGAIN. I'M GOING TO START BROADLY WITH WHAT ARE ORGANOIDS, HUMAN ORGANOIDS. THEY ARE 3-D STRUCTURES MADE FROM EITHER STEM CELL LINES OR HUMAN EMBRYONIC STEM CELL LINES, HUMAN PLURIPOTENT STEM CELL LINE THAT WILL SELF-ORGANIZE INTO VARIOUS STRUCTURES. IN CULTURE. THEY CAN BE MADE TO MODEL VARIOUS STRUCTURAL AND FUNCTIONAL PROPERTIES OF A WIDE VARIETY OF ORGANS SUCH AS GUT, KIDNEY, PANCREAS, LIVER, ET CETERA, AND THE BRAIN. BECAUSE THEY MODEL HUMAN DEVELOPMENT AND MAINTENANCE, THEY ARE USEFUL FOR BIOMEDICAL RESEARCH, STUDIES WHERE YOU HAVE CONTROL OR HEALTHY STEM CELL LINE, ONE TYPE OF ORGANOID, COMPARE THAT HEALTHY BONE TO (INAUDIBLE) DISEASE STATE. STEM CELL LINE DERIVED FROM A PATIENT. YOU CAN USE A DISEASE STATE ORGANOID DEVELOPMENT DEVELOP SCREENINGS SO THEY'RE USEFUL FOR DISCOVERIES UNDERSTANDING HOW ORGANS FORM AND PLATFORM FOR AS A PLATFORM FOR NEW DRUG TARGETS. AS I SAID, THERE ARE A VARIETY OF THEM, YOU HAVE BRAIN, LIVER, AIRWAY, YOU CAN SEE THEY ARE QUITE COMPLEX, WHAT IS AHASSING ABOUT THE ORGANOIDS, CAPACITY TO SELF-ORGANIZE AND GET A LITTLE NUDGE SIGNALING ALONG THE WAY, A LOT IS DONE BY CELLS THEMSELVES AND COMMUNICATION NOT GOING TO TALK TYPICAL ISSUE FIRST, THERE'S MANY TYPICAL ISSUES, I DON'T MEAN TYPICAL LIKE UNIMPORTANT, EASY. BUT FAMILIAR. FROM A SLIDE OR SCIENCE ARTICLE ORGANOID AND OTHERS IN 2017. SO THE VARIOUS ORGANOID MODELS, WE HAVE A RANGE OF ISSUES COMMON AMONG THEM. ONE IS AN EXAMPLE THE NEED FOR ANIMAL EXPERIMENTATION OR ORGANOIDS PROVIDE ALTERNATIVES FOR SCIENTIFIC EXPERIMENTS THAT DON'T USE ANIMALS. USE AS CELL SOURCE, FETAL TISSUE OR ADULT STEM CELLS, EMBRYONIC STEM CELLS, YOU HAVE BIOBANKING ISSUES, PATIENT CONSENT, MOTIVATION OF STEM CELL LINE. AND RESEARCH INTEGRITY PUBLIC COMMUNICATION. WE HAVE ALL THOSE ISSUES, THAT'S NOT WHAT I'M GOING TO TALK ABOUT. I WANT TO ZERO IN ON WHAT I THINK ARE SOME OF THE UNIQUE CHALLENGES AROUND BRAIN ORGANIZE -- ORGANOIDS. HUMAN ORGANOIDS CERTAINLY BRAIN ORGANOIDS COMPARED TO OTHERS EXTREMELY SENSITIVE. ONE WAY OF I LIKE TO THINK ABOUT THIS ISSUE IS WE NOR NORMALLY THINK HUMAN BEINGS ARE MORE -- PARTS OF HUMAN BEINGS. KIDNEYS ARE IMPORTANT, HEARTS ARE IMPORTANT, ALL THE VARIOUS MUCH WEIGHT ON THE OTHER ORGANS AS WE DO BRAIN. MODELS OF HUMAN PARTS. ARE THEY IMPORTANT? NOT TOO MANY ARGUE FOR MORAL IMPORTANCE AND WEIGHT BEHIND KIDNEYS AND KIDNEY MODELS, ORGANOIDS. SO IF THERE'S ANY ROOM FOR DISCUSSION, (OFF MIC) IF THERE'S IN THIS CASE THAT CAPTURES IMAGINATION IT'S GOING TO BE THE BRAIN AND MODELS OF THE BRAIN. SO TO EXPLORE THIS FURTHER, I HAVE A GRANT FUNDED BY THE BRAIN INITIATIVE BIOETHICS GRANT CALLED THE BRAINSTORM ORGANOID PROJECT, I'M PICS CRWU AND HARVARD. WE HAVE A COLLABORATING BRAIN ORGANOID LAB FROM HARVARD. THE CHURCH LAB AND -- LAB, PASCAL LAB STANFORD AND MY COLLABORATOR AT MIT. WHAT WE ARE LOOKING AT, TRYING TO DO IS COLLABORATE CLOSELY WITH RESEARCHERS IN REAL TIME AS THEY ARE CONDUCTING EXPERIMENTS TO TRY TO IDENTIFY EMERGING ETHICAL ISSUES AROUND HUMAN BRAIN ORGANOID WORK AND WHAT ARE THE CHALLENGES TECHNICALLY SCIENTIFICALLY AND ETHICALLY. SO I DO WANT TO MOVE THIS OVER FROM TALKING BRAIN ORGANOIDS TOM RATHER NEW EXCITING AREA CALLED BRAIN ASSEMBLY. FROM THE WORK WE HAVE BEEN DOING SO FAR IN COLLABORATION WITH LABS, THERE ARE SOME REALLY INTERESTING OVERLAPPING GOALS SCIENTIFICALLY WHATRY THAT TRYING TO ACHIEVE, ONE TRYING TO MAINTAIN BRAIN ORGANOIDS LONGER IN CULTURE. WHILE MAINTAINING TO GROW THEM LARGER SIZES. WE WANT TO ASSEMBLE THE FULL COMPLIMENT OF CELL TYPES YOU NORMALLY FIND IN HUMAN BRAIN AND ALSO TO TRY TO DO READING AND OUTPUT SIGNALING. ENCAPSULATE ALL THIS TOGETHER IS NEW AREA CAPTURING INTEREST IN ORGANOID FIELD, ASSEMBLY. SO THIS IS AGRIA GRAPHIC FROM A -- A REVIEW GRAPHIC IN SCIENCE, WHAT THEY ARE ASSEMBLIES ARE DIFFERENT SEPARATE BRAIN ORGANOIDS, DIFFERENT REGIONS OF THE BRAIN, ASSEMBLED TOGETHER OR TAKING OTHER CELL TYPES, YOU MAY HAVE DERIVED FROM OTHER CELL LINES AND ASSEMBLING THEM 3-D THIS WAY. YOU CAN FUSE T ORGANOIDS TOGETHER TO GET THIS, DOWN I GUESS -- YOU CAN SEE -- YOU CAN'T SEE THE ARROW. THE BOTTOM RIGHT WOULD BE ASSEMBLING -- FUSING TWO TOGETHER AND BOTTOM LEFT WOULD BE COMPLIMENTING WITH OTHER CELLS. EYE THEY ARE LARGER VERSIONS OF SINGLE ORGANOIDS. SO WHAT ARE THE MAIN ETHICAL CONSIDERATIONS? I ALREADY SAID YOU HAVE TYPICAL ISSUES WHICH ARE IMPORTANT BUT I'M GOING TO FOCUS ON THESE OTHER TWO. WHAT ARE THE MORAL STATUS OF ORGANOIDS AND ASSEMBLEOIDS AND OTHER CONSIDERATIONS. WHEN I FIRST STARTED THIS PROJECT THERE ARE PEOPLE INCLUDING MANY SCIENTISTS WHO SAID, I DON'T SEE WHAT ETHICAL ISSUES ARE AND IF THESE THINGS ARE CLOSE TO BEING CONSCIOUS OR EVEN ALL CELL TYPES REGION NECESSARY FOR CONSCIOUSNESS THERE'S NO INPUT AND OUTPUT, SO THERE'S NOTHING TO WORRY ABOUT. THINKING ABOUT THE ISSUE FURTHER, I TRY TO IMPRESS UPON THEM THERE ARE COMPLEXITIES HOW YOU MIGHT UNDERSTAND MORAL STATUS. I WILL WALK YOU THROUGH A TRAIN OF THOUGHT I FOUND USEFUL, HOPEFULLY YOU WILL AS WELL. MORAL STATUS, I LIKE THIS DEFINITION FROM THE STANFORD ENPSYCHOPEDIA PHILOSOPHY HAS VERY IMPORTANT COMPONENTS, ONE IS THAT ENTITY HAS MORAL STATUS ONLY IF INTEREST MATTER MORALLY SOME DEGREE SO MORAL STATUS MATTER OF DEGREE AND HAS TO BE FOR ENTITY OWN SAKE. THIS IS SOMETHING LOST IN PEOPLE'S DISCUSSION OF MORAL STATUS, FORGET ABOUT THE DEGREE ISSUE, FORGET ABOUT BEING FOR ITS OWN SAKE. SO MORAL STATUS IS NOT THE SAME ADS MORAL CONSIDERABILITY, LOT OF THINGS HAVE MORAL STATUS AND CONSIDERABILITY BUT NOT ALL THINGS HAVE MORAL STATUS BUT THEY HAVE MORE CONSIDERABILITY. AN EXAMPLE, MY SON HAD TO DO SOME HOUSE SITTING FOR A CAT. FOR OUR NEIGHBORS AND SUPPOSE HE DOESN'T BELIEVE THE CAT HAS MORAL STATUS. YOU CAN'T WRONG THE CAT. THE CAT DOESN'T HAVE MORAL INTEREST, HE DOESN'T BELIEVE, HE HAS THIS VIEW CATS ARE JUST FUZZY MACHINES OR FUZZY PLANTS. YOU MIGHT STILL SAY I HAVE TO TAKE CARE OF THIS CAT IF I DON'T BELIEVE IT HAS MORAL STATUS, I CARE ABOUT THE PROIS MANIES MADE TO MY NEIGHBOR. THE CAT IS MORALLY CONSIDERABLE THOUGH IT MAY NOT HAVE MORAL STATUS ON THIS ONE VIEW OF ANIMALS SO SOMETHING CAN HAVE MORAL CONSIDERABILITY BUT NOT MORAL STATUS. THIS THE POSITION TAKEN BY MANY PEOPLE IN STEM CELLS. FROM MS.YOU MIGHT SAY THE LINE -- YOU CAN'T WRONG IT, BUT YOU HAVE TO TREAT IT IN CERTAIN WAYS OR CERTAIN RESEARCH THINGS YOU CAN DO WITH THEM, THAT ARE APPROPRIATE, SOME ALSO FEEL THE SAME WAY ABOUT EX-VIVO EMBRYOS IN CULTURE DISH BUT CERTAIN THINGS IT SHOULDN'T SHOULD OR SHOULDN'T DO, CONSIDERABILITY. SO THAT'S A FAMILIAR TERMS USING EXAMPLES LIKE THAT. SO THE PICTURE IS QUITE COMPLICATED WHEN YOU TALK ABOUT MORAL STATUS. DEPENDS ON WHAT YOU MEAN BY MORAL STATUS. YOU HAVE FULL MORAL STATUS, MINIMAL, U YOU MIGHT THINK IAKUK RANGE, NON-HUMAN PRIMATES NEAR THE TOP, RODENTS, ZEBRAFISH AT THE BOTTOM. WHOLE RANGE IN BETWEEN. SOMETHING COULD HAVE MORAL STATUS BECAUSE IT HAS CAPACITY TO SUFFER BUT THEN THE REALLY INTERESTING QUESTION IS WHERE IS THAT THRESHOLD FOR NON-INTERFERONS OR EXPERIMENTATION. THAT'S PUSHING HIGH UP ALL THE WAY WHERE WE MIGHT CONSIDER TO BE MORAL STATUS. SO SOMETHING HAS MORAL STATUS THERE'S A BIG QUESTION WHETHER YOU CAN DO EXPERIMENTS OR NOT. WE HAVE MANY PEOPLE WHO BELIEVE THERE ARE SOME ANIMALS THAT HAVE SOME MORAL STATUS, NOT FULL AND YOU CAN DO EXPERIMENTS ON THEM, BUT MORAL STATUS OR NOT DOESN'T SETTLE ANYTHING. JUST WHOLE RANGE OF ARGUMENTATION. WHAT ARE THE GROUNDS FOR MORAL STATUS, WHAT'S REQUIRED? THIS IS GOING TO VARY FROM CULTURE TO CULTURE, AND BELIEF SYSTEM TO BELIEF SYSTEM. WHAT MAKES MORE COMPLICATED EVEN IN OUR GENERAL BELIEF SYSTEM AN WESTERN SOCIETY WE THINK YOU CAN HAVE VARIOUS -- SOMETHING HAS POTENTIAL FOR THE GROUNDS OR MAYBE YOU ACTUALLY HAVE THE GROUNDS SO YOU CAN SEE EMBRYO DEBASE, I DON'T THINK THAT EMBRYO AS A PERSON BUT HAS POTENTIAL TO BE A PERSON IN THE RIGHT CIRCUMSTANCES AND GIVEN THAT POTENTIAL HAS MORAL STATUS YOU SEE THIS LANGUAGE IN THE STEM CELL LANGUAGE IN EMBRYO DEBATE. MAYBE A MEMBER OF A GROUP AT LEAST IN THAT GROUP SOME PEOPLE HAVE MORAL STATUS. PEOPLE SAY HUMAN BEINGS ARE VERY SPECIAL BECAUSE WE HAVE CAPACITY FOR GREAT ARTISTRY AND POETRY, I DON'T. SOMEONE DOES. I THINK. RIGHT? AS LONG AS YOU ARE A MEMBER, SPECIES MEMBER OF THIS GROUP WHICH SOME PEOPLE DISPLAY THESE GREAT TRAITS OF MORAL WORTHYNESS, YOU ARE SOMEHOW IN THE CLUB. WHY AM I SAYING THIS? ALL THESE APPLY TO THE BRAIN ORGANOIDS AND ASSEMBLYOIDS. I THINK IT HAS THE GROUNDS FOR MORAL STATUS. IT MAYBE WE'RE NOWHERE NEAR THAT RIGHT NOW. YOU'RE NOT OFF THE HOOK. YOU MIGHT STILL SAY UNDER THE RIGHT CIRCUMSTANCES THIS CAN DEVELOP INTO SOMETHING THAT COULD HAVE ACTUALIZE AND INHERENT POTENTIAL FOR THIS. WE SAY THIS ABOUT EMBRYOS MIGHT SAY ABOUT ASSEMBLEOIDS. YOU CAN GET INTO FULL FUNCTIONING. OR MAYBE JUST A MEMBER OF THE GROUP. FOR WHICH THERE ARE OTHER BRAINS WORKING ONES IN PEOPLE'S BODIES THAT DO HAVE THE GROUNDS FOR MORAL TA STATUS, NOTHING SETTLED. THE ISSUE, WHEREVER YOU DRAW THE LAWN YOU ALSO HAVE THRESHOLD AS WELL. SO IT'S NOT OPEN AND SHUT CASE ON THE MORAL STATUS. I DON'T THINK THIS IS REALLY THE AREA THAT I FIND THE MOST INTEREST ETHICALLY IN DOING ORGANOID WORK. WHAT I'M REALLY INTERESTED IN IS MORAL CONSIDERABILITY. SO SET ASIDE MY SLIDES ON WHERE ARE WE ON THIS SCALE? AND JUSTIFICATION DO WE HAVE FOR ENTRY POINT FOR MORAL STATUS, POTENTIAL FOR MEMBERSHIP? LET'S SET IT ASIDE. THERE'S SO MUCH TO TALK ABOUT ON MORAL CONSIDERABILITY. WHICH IS AGNOSTIC WHETHER OR NOT THESE ASSEMBLEOIDS COULD HAVE MORAL STATUS AND YOU CAN WRONG THAT THING. IT HAS ITS OWN INTEREST. WHAT ARE -- HERE IS WHAT IS COMING UP. BESIDES ALL THE ISSUES THAT I MENTIONED BEFORE, SET ASIDE WITH BIOBANKING CENTER, WHAT IS COMING UP IN IN RESEARCH IS IT REQUIRES, THIS AREA OF STUDY REQUIRES PRETTY CONTROVERSIAL LAB PRACTICES. SO YOU HAVE TO USE FETAL BRAIN TISSUE AS CONTROLS. YOU HAVE TO ADD PRIMARY CELL TYPES TO THE MODEL SUCH AS MICROGLIA, YOU HAVE TO MAKE YOUR OWN MICROGLIA FROM CELL LINES, THE FASTEST WAY TO DO IT IS POSTMORTEM TISSUE AND YOU KNOW THAT'S THE REAL DEAL, IT ACTUALLY WORKS. SO YOU'RE ASSEMBLEOID USES CASES OF POSTMORTEM TISSUE. YOU MIGHT CONTROL POLARITY OF THE ARCHITECTURE, THAT HEAD TO TAIL BACK TO BELLY ACT SEIZE AND TO DO THAT YOU MAY HAVE TO USE GROUP OF CELLS CALLED HUMAN ORGANIZERS, THERE'S INTERESTING WORK HUMAN ORGANIZEMIZE RECOGNIZERS CHECK MODELS CREATES THE AXES PUBLISHED IN NATURE. SO YOU MAY HAVE TO DO METHODOLOGIES LIKE THAT. YOU MIGHT ALSO HAVE TO HAVE SENSORY INPUT BECAUSE SENSORY INPUT SHAPES DEVELOPMENT OF THE BRAIN SO MAYBE SHORT TERM GET REFINED BRAIN DEVELOPMENT MODELS YOU MIGHT TRANSFER YOUR HUMAN BRAIN ORGANOIDS AND ASSEMBLEOIDS IN LAB ANIMALS TO GET INPUT WE KNOW FOR VASCULARIZATION WE PUT BRAIN ORGANOID INTO A RODENT AND RODENT VASCULATURE GOES INSIDE QUICKLY AND INTEGRATE. SO THERE'S POSSIBILITY OF HUMAN ANIMAL ENTERGRATION IN THE BRAIN VASCULATURE RECEIVE SENSORY INPUTS IN THE ANIMAL. YOU MIGHT STUDY ASCENDING DESCENDING NEURAL PATHWAYS, MOTOR PROCESSES WHICH MAYBE ACHIEVED BY CONNECTING ORGANOID TO MUSCLE TISSUE. AND ONE OTHER PROJECT THE FOUNDATION LOOKS AT THESE TYPES OF THINGS CALLED MULTI-CELLULAR ENGINEER LIVING SYSTEMS. ONE IDEA AT MIT IN HUMAN BRAIN ORGANOID CONNECTED TO NEURAL NERVES AND MUSCLE TISSUE. 3-D PRINTED BONE SCAFFOLDS, HUMAN LEG THAT KICKS. OTHER USES LIKE THAT STUDY FUNCTION. LOOKING AHEAD OF U -- YOU HAVE TO HAVE RESEARCH JOURNALS THAT ARE GOING VERY QUICKLY. RESEARCH IS FLYING UNDER THE RADAR BECAUSE IT'S DONE WITH NOT MUCH INSTITUTIONAL OVERSIGHT, IN VITRO. USING ESTABLISHED CELL LINES OVER SIGHT COMMITTEES ADMINISTRATIVE REVIEW, NOT A BIG DEAL. IT IS A BIG DEAL MAKING THINGS THAT COULD BE CONCERNING IN THE LAB SO THAT THE ETHICIST AND NEUROSCIENTISTS WORK TOGETHER TO IDENTIFY THESE ISSUES ALONG THE WAY AS THEY PROGRESS OVER TIME. [APPLAUSE] >> THANK YOU. TIME FOR SOME QUESTIONS. I'LL BE THE -- HERE IS THE MIC. >> SOUNDS LIKE THIS COULD ALSO APPLY TO THE NEW TISSUE CHIP TECHNOLOGY CONNECTING VARIOUS TISSUE CHIPS OF DIFFERENT SYSTEMS. DO YOU SEE ANY DIFFERENCES THERE? >> ONLY HOW THEY LOOK. I THINK THIS DIFFUSES CONCERNS. ORGAN ON CHIP MODEL, WHEN YOU LOOK AT CHIP YOU GOOGLE IMAGINE ANY OF THESE, CLEAR PLASTIC BOXES. THEY ARE SEEDED WITH HUMAN CELLS, SOME MOVE FOR AIRWAY, THEY MOVE MECHANICAL FORCES INVOLVED AND THE LINK THEM TOGETHER AND SEE HOW THESE SYSTEMS WORK AND STRIKING EXAMPLE IS THE MODEL PUT TOGETHER DIFFERENT PARTS OF THE HUMAN FEMALE REPRODUCTIVE SYSTEM. PITUITARY, KIDNEY, EVERYTHING. AND THEY MATURE MOUSE EGGS OVARIAN SLICES AT THE TOP. YOU CAN ASSEMBLE THESE THINGS TOGETHER TO RECAPITULATE DYNAMIC PROCESSES. FROM PEOPLE LOOK AT THIS LIKE A COMPUTER KEYBOARD. IT DOESN'T LOOK DISTURBING. PEOPLE ARE NOW GOING TO START PUTTING THE ORGANOIDS TOGETHER. THOSE ARE SOFT SQUISH BIOLOGICAL THINGS, DOING THE SAME EXPERIMENT USING ORGANOIDS OR ASSEMBLEOIDS. FROM I THINK IT LOOKS LESS HUMAN. THOUGH BIOLOGICALLY DOING FOR EVERYTHING YOU HOPE ORGANOIDS WILL DO. IT WILL BE INTERESTING PEOPLE DOING THOSE OTHER SYSTEMS MODELING WITH THE ORGANOIDS BECAUSE IT WILL LOOK LIKE MORE LIKE HUMAN PARTS IN THE BADGE. I THINK IT RAISES A LOT OF THE SAME ISSUES. BUT MAYBE JUST ON A MORE VISCERAL LEVEL, LOOKING AT THE SOFT SQUISH ORGANOIDS VERSUS (INAUDIBLE). >> I THINK WE'LL SWITCH AFTER YOU. >> I WASN'T SURE THE DISTINCTION YOU ARE MAKING FOR THE MORAL STATUS VERSUS CONSIDERABILITY. SEEMS LIKE WHAT YOU ARE SAYING IS CONSIDERABILITY IS THE MANIPULATION OF THINGS THAT MIGHT HAVE MORAL STATUS. >> MAYBE, MORAL STANDARDS TO ME WHAT'S KEY ABOUT MORAL STATUS, SOMETHING HAS MORAL STATUS YOU CAN WRONG IT. BUT I DON'T THINK PEOPLE WILL SAY YOU'RE WRONGING AN ORGANOID OR CELL LINE BUT HOW -- THE LIMITS OF WHAT RESEARCH YOU DO, LIMITS HOW HOW LONG TO MAINTAIN IT. >> GOING THE OTHER WAY THOUGH, IF CONSIDERABILITY IS A MANIPULATION OF SOMETHING THAT MIGHT HAVE MORAL STATUS, THE ETHICAL CONCERN IS RATIONALE FOR DOING THAT MANIPULATION. RIGHT? SO THAT'S THE THING ONE HAS TO BE CONCERNED ABOUT. >> [APPLAUSE] >> OUR NEXT SPEAKER IS CHRISTINE GRADY, DIRECTOR OF THE DEPARTMENT OF BIOETHICS HERE AT NIH. SHE WILL BE TALKING ON EXISTING GUIDANCE BEING SUFFICIENT FOR BRAIN RESEARCH. >> THANKS, JEFF. SO GOOD MORNING, EVERYBODY. TWO THINGS I WANT TO START WITH, JEFF INTRODUCED THIS PANEL THE PANELISTS TALKING RESEARCH IN THEIR OWN LAB. THAT'S NOT TRUE. I DO -- THEY WERE WRONG. I DIDN'T GET THAT MEMO. I'M TEASING. IMPORTANTLY I DO WORK ON ETHICS SO I MEAN THIS SORT OF FITS UNDER MY RUBRIC. THE SECOND THING IS WHEN I GOT THE MEMO, I DID GET OR THE QUESTION I DID GET WAS DOES BELMONT ADDRESS ISSUES OF IDENTITY PERSONALITY BEHAVIOR? MY RESPONSE WAS YOU REALLY WANT TO TALK ABOUT GERM LINE? THE ANSWER WAS NO. I TOOK THE LIBERTY TO SAY LET'S TALK MORE THINGS THAN JUST BELMONT SO THAT'S WHAT I'M GOING TO DO. WHAT I'M GOING TO TRY TO DO IN THE 15 MINUTES THAT I HAVE IS JUST RECOGNIZE ONE HAS ALREADY BEEN RECOGNIZED TODAY BY SEVERAL PEOPLE, WHAT'S DISTINCTIVE ABOUT BRAIN SURGEON AND THE BRAIN INITIATIVE. TALK ABOUT SOME OF THE EXISTING GUIDANCE THAT IS AVAILABLE RECOGNIZING THIS IS NOT ALL OF IT, THERE'S OTHER THINGS OUT THERE AND LEAVE US ALL WITH THE QUESTION OF IS IT SUFFICIENT OR DO WE NEED MORE. IS THERE SOMETHING ELSE WE NEED IN ORDER TO GUIDE OUR DECISION MAKING AND NEUROETHICS RELATED TO BRAIN INITIATIVE. SO THAT'S MY PLAN. THIS IS MENTIONED BY SEVERAL ALREADY BUT LOOK AT THE FIRST LINE OF EXECUTIVE SUMMARY AND BRAIN 2025, I QUOTED AT THE TOP OF THE SLIDE, THE HUMAN BRAIN IS THE SOURCE OUR THOUGHTS AND MOTIONS PERCEPTIONS, ACTIONS AND MEMORIES AND CONFERS ON US THE ABILITIES THAT MAKE US HUMAN. WHILE SIMULTANEOUSLY MAKING EACH OF US UNIQUE. THIS IS THE CHALLENGE, THIS IS WHAT IS DIFFERENT ABOUT BRAIN RESEARCH, WHY PEOPLE KEEP ASKING DO WE HAVE THE RIGHT ETHICS GUIDANCE, DO WE KNOW WHAT WE ARE DOING HERE? THE GOAL OF THE BRAIN INITIATIVE, MUCH RESEARCH IN NEUROSCIENCE IS TO UNDERSTAND MORE ABOUT THE BRAIN, UNDERSTAND MORE ABOUT THESE PROPERTIES OF THE BRAIN AND WHAT CIRCUITS ARE AND CELLS ARE AND HOW WE CAN MANIPULATE THEM. SO IF WE ARE SUCCESSFUL AT DEVELOPING THOSE TOOLS, THAT UNDERLIE WHAT MAKES US HUMAN, WE MIGHT ALSO BE MOVING INTO TERRITORY WE'RE PROFOUNDLY ALTERING THOSE. THIS IS THE CONCERN, EVERYBODY KNOWS THAT. WHAT ABOUT EXISTING GUIDANCE? I WILL SAY THAT IN MY DISCUSSION WITH PEOPLE AROUND NEUROETHICS, THE QUESTION HAS COME UP REPEATEDLY, DO WE NEED A BELMONT, DO WE NEED A SET OF BELMONT PRINCIPLES FOR NEUROETHICS? I CAN SAY I HAD THE PRIVILEGE OF THE PRESIDENT'S COMMISSION, MOST RECENT PRESIDENT'S COMMISSION UNDER PRESIDENT OBAMA. ONE OF THE QUESTION WE WERE FACED WITH VERY EARLY IN THAT PROCESS WAS SYNTHETIC BIOLOGY. THAT'S NOT NEUROSCIENCE BUT INTERESTING, IN EMERGING TECHNOLOGY. WHAT WE DID INITIALLY WAS ANSWER THE QUESTION CAN WE COME UP WITH A SET OF BELMONT PRINCIPLES TO GUIDE SYNTHETIC BIOLOGY. THE ANSWER IS WELL, THAT'S A REALLY TOUGH ASK. SO I THINK THE QUESTION IS, THESE KINDS OF QUESTIONS SUGGEST THERE IS A CLAMORING FOR SOME MORE SPECIFIC GUIDANCE OR MORE DIRECTIVE GUIDANCE I GUESS IF YOU WILL ON SOME OF THESE ISSUES. SO EVERYBODY KNOWS THIS BUT JUST IN CASE WHAT DOES THE BELMONT REPORT DO? THE BELMONT REPORT WAS SPECIFIC TO RESEARCH WITH HUMAN SUBJECTS. IT WAS WRITTEN BY THE NATIONAL COMMISSION FOR PROTECTION OF HUMAN SUBJECTS. BIOMEDICAL BEHAVIORAL RESEARCH. IT'S SOMEWHAT UNIQUE, I THINK, IN THE LEXICON OF GUIDANCE BECAUSE IT IS MORE CONCISE THAN ANYTHING, IT DESCRIBES EXPLEA SITLY EXPLAINS THREE -- EXPLICITLY EXPLAINS THREE ETHICAL PRINCIPLE AND APPLIES THEM TO SPECIFIC THINGS ABOUT DOING RESEARCH WITH HUMANS. THOSE ARE VALUABLE THINGS. IT'S HERALDED BECAUSE OF SIMPLICITIES BUT ALSO ENDURANCE. IT HAS LASTED A LONG. IT IS THE BASIS OF THE REGULATIONS WE OPERATE UNDER WHEN DOING CLINICAL RESEARCH. HOWEVER THESE PRINCIPLES ARE NOT UNIQUE TO RESEARCH. LOOK AT THE PRINCIPLES THESE ARE PRINCIPLES THAT ARE USED IN LOTS OF AREAS OF LIFE, INCLUDING VERY OFTEN IN HEALTHCARE. THEY HAVE BROAD APPLICABILITY. MANY PEOPLE HAVE QUESTIONED WHETHER THESE THREE PRINCIPLES ARE SUFFICIENT EVEN FOR CLINICAL RESEARCH OR RESEARCH WITH HUMAN SUBJECTS. SHOULD THERE BE ADDITIONAL PRINCIPLE LIKE SOLIDARITY OR OTHER PRINCIPLES. APPLICATION OF THESE PRINCIPLES REQUIRES SPECIFICATION HOW YOU USE THEM, BALANCING BETWEEN THEM. IN ORDER FOR PEOPLE TO USE AS GUIDANCE. LAST BUT NOT LEAST, IT IS INTERESTING TO THINK ABOUT THE SESSIONS THAT PRECEDED THIS. IF THIS IS ABOUT HUMANS, ORGANOIDS DO NON-HUMAN ANIMALS COUNT WHERE IS THE GUIDANCE ABOUT THOSE ENTITIES? BUT THERE ARE LOTS OF OTHER SO CAROLINE MENTIONED THIS MORNING IEEE, THE LARGEST TECHNICAL PROFESSIONAL ORGANIZATION DEDICATED TO ADVANCING TECHNOLOGY FOR THE BENEFIT OF HUMANITY, THAT'S HOW THEY DESCRIBE THEMSELVES. THEY HAVE A CODE OF ETHICS ON THEIR WEBSITE IN PLACE SINCE 1963. IF YOU LOOK AT IT, IT'S BUSY AND NOT GOING FOG GO TRUE IT BUT IF YOU LOOK, SOME OF THE THINGS THEY LIST ARE VERY SIMILAR TO WHAT BELMONT PRINCIPLES ASK FOR. FOR PERSONS AND SOME, MANY ON- THIS LIST, ARE ACTUALLY MORE LIKE SCIENTIFIC INTEGRITY AND HOW TO GUIDE WITH CONDUCT PROFESSIONAL CONDUCT OF RESEARCHERS OR ENGINEERS. THEY HAVE A MORE RECENT 2014 MORE REVISED IN 2014 CODE OF CONDUCT, WHICH IS SHORTER, INCORPORATES A LOT OF THINGS IN CODE OF ETHICS. WHAT I FOUND INTERESTING IS IF YOU LOOK AT THE FIRST THREE THEY DO REFLECT BELMONT PRINCIPLES. THEN THE OTHERS ARE MORE ABOUT PROFESSIONAL BEHAVIOR. THAT'S ANOTHER SOURCE OF GUIDANCE THAT'S OUT THERE. I MENTIONED PART OF THE PRESIDENT'S COMMISSION AND MANY PEOPLE ESPECIALLY NEUROETHICS IN IN BRAIN INITIATIVE THINK TWO GRAY MATTERS VOLUMES. FROM THE PRESIDENT'S COMMISSION. I WILL MENTION BRIEFLY. PERHAPS MORE RELEVANT TO THIS DIVISION CUSHION ABOUT PRINCIPLES AND GUIDANCE IS THE SYNTHETIC IS THE REPORT I MENTIONED A MINUTE AGO. IN THAT REPORT WE CAME UP WITH FIVE PRINCIPLES THAT WE THOUGHT WERE APPLICABLE TO SYNTHETIC BIOLOGY THROUGH ALSO OTHER EMERGING TECHNOLOGIES, YOU CAN SEE THEY GO BEYOND WHAT'S IN THE BELMONT REPORT DESCRIPTIVELY SAID TO ME IN ADDITION TO THE BELMONT PRINCIPLES, THESE ARE OTHER THINGS TO THINK ABOUT WHEN THINKING EMERGING TECHNOLOGIES. PUBLIC BENEFICENCE BEING SPECIFICALLY TO SAY INDIVIDUAL BENEFICENCE MATTERS BUT SO DOES PUBLIC BENEFICENCE, MY FAVORITE IS RESPONSIBLE STEWARDSHIP. THIS IS A REALLY IMPORTANT IDEA THAT ASSIGNTISES, AS FUNDERS OF SCIENCE, SOCIETY WHO SUPPORTS SCIENCE WE HAVE TO BE RESPONSIBLE FOR MAKING SURE THAT PRACTICAL SENSIBLE AND CAUTIOUS WAYS WE'RE ASSESSING THE LIKELY BENEFITS AND SAFETY AND SECURITY RISKS BEFORE AND AFTER PROJECTS ARE UNDERTAKEN. AND MAKING DECISIONS BASED ON THOSE THINGS. OUT OF COLLECTIVE CONCERN, FOR BOTH CURRENT AND FUTURE PEOPLE IN THE ENVIRONMENT. THE INTELLECTUAL FREEDOM AND RESPONSIBILITY PRINCIPLE IS ONE YOU SEE IN LOTS OF GUIDANCES, DEMOCRATIC DELIBERATION THOUGH SPECIFIC KIND OF PUBLIC ENGAGEMENT IS CLEARLY ABOUT PUBLIC ENGAGEMENT. TWO GRAY MATTER VOLUME? THESE ARE OTHER SOURCES OF GUIDANCE, THE FIRST GRAY MATTER VOLUME TALKED ONLY ABOUT INTEGRATION. THOUSAND INTEGRATE ETHICS AND SCIENCE IN NEUROSCIENCE AND HOW IMPORTANT FOR NEUROSCIENCE BECAUSE OF THE KINDS OF IMPACTS THAT NEUROSCIENCE AND BRAIN INITIATIVE SCIENCE CAN HAVE ON OUR DEFINITION OF SELF AND DEFINITION OF SELF WITHIN SOCIETY. THIS REPORT TALKED ABOUT WHY IT'S IMPORTANT AND GAVE EXAMPLES HOW INTEGRATION MIGHT HAPPEN. THESE ARE SOME. SOME HAVE BEEN TALKED ABOUT BEFORE, THE ONE I WOULD ADD IS ELEVATE ALL LEVELS EDUCATION STARTING IN ELEMENTARY SCHOOL ABOUT THESE ISSUES. THE SECOND GRAY MATTER REPORT FOCUSED SPECIFICALLY ON THREE CONTROVERSIAL TOPICS THAT ILLUSTRATE BOTH TENSIONS IN ETHICS AND SOME OF THE SOCIETAL IMPLICATIONS. SO THE DETAILS OF THE DESCRIPTIONS IN THIS REPORT AND RECOMMENDATIONS ARE ALL FOCUSED ON THESE THREE AREAS. COGNITIVE ENHANCEMENT, INTENT COMPASS TANNED NEUROSCIENCE AND LEGAL SYSTEM WHICH YOU KNOW FRANCIS WILL TALK ABOUT. THERE IS ALSO A VALUABLE DOCUMENT THAT THE COUNCIL IN THE UK PUT OUT IN IN 2013. ONE PART OF WHICH IS AN ETHICAL FRAMEWORK FOR NOVEL NEURAL TECHNOLOGIES. THEY DID AN INTERESTING THING, THEY LAYERED PRINCIPLES AND INTERESTS AND VIRTUES. I WILL TALK ABOUT THAT. THE PRINCIPLES, THE PRINCIPLES THEY HIGHLIGHTED ARE BENEFICENCE AND CAUTION. THIS IS VERY MUCH LIKE THE INTELLECTUAL FREEDOM AND RESPONSIBILITY KIND OF PRINCIPLE PRESIDENT'S COMMISSION HAD. BASICALLY WHAT THIS -- WHAT THEY SAY ABOUT BENEFICENCE, THE GOAL OF NEUROSCIENCE SHOULD BE INTERVENING AND FINDING INTERVENTIONS FOR BRAIN DISORDERS. THERE'S A LOT OF DEVASTATING BRAIN DISORDERS IN THE WORLD WE NEED TO FIND WAYS TO INTERVENE. BUT THERE'S A REASON FOR CAUTION IN DOING THIS WORK BECAUSE OF THE KINDS OF AFFECTS THESE INTERVENTIONS CAN HAVE. THEY LAYER ON TOP OF THAT FIVE INTERESTING THINGS THEY POINTED TO, SAFETY, PRIVACY, AUTONOMY, EQUITY AND TRUST. THEY ARE ALL FAMILIAR AND IMPORTANT INTERESTS. THESE ARE BOTH INDIVIDUAL INTERESTS AND PUBLIC INTEREST. THEN I THINK IN A VERY INTERESTING AND NOVEL WAY, THEY ADDED A THIRD LAYER SAYING IN ORDER TO MAKE -- IN ORDER TO PROTECT AND PROMOTE THESE INTERESTS, THERE'S THREE -- ESPECIALLY RELEVANT I THINK THEY CALLED THEM VIRTUES, PEOPLE WHO ARE INVOLVED IN NEUROSCIENCE PRACTICE NEUROSCIENCE, FUND NEUROSCIENCE HAVE TO BE AWARE OF. THOSE INCLUDE INVENTIVENESS THROUGH TECHNOLOGICAL INNOVATION BUT ALSO FINDING WAYS TO MAKE INNOVATIONS EQUITABLY ACCESSIBLE TO PEOPLE. THAT'S AN INVENTNESS. HUMILITY, ACKNOWLEDGING THE LIMITS OF OUR KNOWLEDGE AND CAPABILITIES, AND RESPONSIBILITY THROUGH ROBUST RESEARCH PRACTICES AND REFRAINING FROM EXAGGERATION OR PREMATURE CLAIMS. RAFA WAS MENTIONED THIS MORNING, RAFA HAS BEEN TALKING ABOUT THE NEED FOR MORE GUIDANCE SINCE THE FIRST DAY I MET HIM. PROBABLY BEFORE I MET HIM. HE ORGANIZED, HE AND SARA GERRING ORGANIZED A MORNING SIDE GROUP IN 2017 WHERE THEY STARTED WITH THE PREMISE THAT WE NEED MORE THAN BELMONT. AND THEY ENDED UP WITH FOUR AREAS OF CONCERN AND THEY HAD VERY SPECIFIC RECOMMENDATIONS FOR WHAT TO DO ABOUT THESE. YOU CAN SEE MORE GUIDANCE LIKE AD NEURAL RIGHTS TO HUMAN RIGHTS TREATIES, RECOGNIZING THAT THAT MIGHT NOT BE SUFFICIENT BUT MIGHT BE IMPORTANT. SO THERE ARE FOUR AREAS OF CONCERN PRIVACY, CONSENT, AGENCY IDENTITY, AUGMENTATION AND BIAS. THEN I THIS I YOU HEARD ABOUT NEUROETHICS GUIDING PRINCIPLES. THIS IS PART OF THE NEUROETHICS WORKING GROUP OF THE BRAIN INITIATIVE. WE ALSO STARTED WITH THIS LET'S TAKE STOCK OF THE KINDS OF GUIDANCE THAT'S OUT THERE AND SAY WHAT ELSE IS NEEDED, WHAT MORE SPECIFIC IS NEEDED? WE CAME UP WITH THESE EIGHT PRINCIPLES. WE ARE CALLING THEM GUIDING PRINCIPLES. AND WITH SOME JUSTIFICATION FOR EACH OF THEM. THE QUESTION OF WHETHER -- HOW USEFUL THEY WILL BE IS GOING TO BE SHOWN AS PEOPLE USE THEM TO THAT, I WANT TO POINT OUT, THE QUESTION POSED TO ME INITIALLY ABOUT PERSONALITY AND BEHAVIOR AND IDENTITY, IS THE SECOND ONE, WHICH IS ANTICIPATE SPECIAL ISSUES RELATED TO THESE KINDS OF THINGS MA MAKE US HUMAN. WE RECOGNIZE IN THE TEXT OF THIS ARTICLE, SOME INTERVENTIONS MAY LEAD TO UNANTICIPATED CHANGES IN PREFERENCES OR AGENCY. WE WILL HEAR MORE IN A FEW MINUTES. SO UNDERSTANDING THAT ANTICIPATING THAT FIGURING HOW TO DESCRIBE IT TO PEOPLE AND WHAT TO DO IS A VERY IMPORTANT PART OF DOING NEUROSCIENCE IN THAT AREA. THE OTHER ONE THAT'S INTERESTING IS THE IDENTIFYING ADDRESS SPECIFIC CONCERNS OF THE PUBLIC ABOUT BRAIN. WE HEARD ABOUT THIS TODAY. WE ALREADY KNOW, CARE DEEPLY ABOUT THEIR BRAINS, THEY WORRY IF WE ARE ABLE TO CONTROL, DYSFUNCTIONAL BRAIN WE MIGHT ALSO HAVE THE ABILITY TO DO FLIP SIDE CONTROL NOT DYSFUNCTIONAL. SO THIS KIND OF DISRUPTION. NOW, WHETHER AGAIN, WHETHER OR NOT THIS IS SPECIFIC ENOUGH GUIDANCE FOR PEOPLE WORRIED ABOUT THESE THINGS IS A QUESTION WE AS A GROUP NEED TO CONTINUE TO THINK ABOUT. MY TENTATIVE CONCLUSIONS, THERE ARE FAMILIAR PRINCIPLES. LIKE THE BELMONT PRINCIPLES THAT GUIDE CLINICAL RESEARCH AND CLINICAL CARE. THEY ARE RELEVANT. THEY DO APPLY TO NEUROSCIENCE BUT THEY'RE NOT SPECIFIC ENOUGH SO BY THEMSELVES, MAY NOT SUFFICE. THERE ARE OTHER PRINCIPLES THAT PEOPLE ARTICULATED ABOUT EMERGING TECHNOLOGIES WHICH ARE ALSO RELEVANT AND DO APPLY AGAIN MAY NOT BE SPECIFIC ENOUGH AND MAY NOT SUFFICE BY THEMSELVES. BRAIN RESEARCH ESPECIALLY SPECIAL ATTENTION TO THE POSSIBLE EFFECTS OF NEUROTECHNOLOGIES ON AGENCY IDENTITY CAPACITY AND PUBLIC TRUST NEED ATTENTION. SO DO ISSUES OF AUGUST MENNATION, HYPE, BIAS, MISUSE, PROBABLY OTHER THINGS I'M FORGETTING TO MENTION. THESE ARE THINGS PEOPLE VALUE ARRANGED TODAY THAT'S MY TWO CENTS. [APPLAUSE] QUESTIONS, COMMENTS? SURE. WANT ME TO WALK DOWN OR WALK UP? MEET IN THE MIDDLE. OKAY. FROM YOU BROUGHT UP IEEE AND GUIDELINES BUT LOOKING DEVELOPING NEURAL TECHNOLOGIES AND SO ENGINEERS ARE AT THE FRONT LINE OF DEVELOPING TECHNOLOGY THAT HAVE THE CAPABILITY SO GOOD TO KNOW THEY WILL BE WORKING ON THAT. >> GREAT. AS YOU KNOW THIS MORNING, THERE ARE OTHER KINDS OF GUIDELINES BEING DEVELOPED THAT YOU TALKED ABOUT THE OECD GUIDELINES AND RESPONSIBLE RESEARCH INNOVATION GUIDELINES AND SO THERE'S ANOTHER GUIDELINES, THE TRICK IS HOW TO USE THEM TO REALLY PROVIDE GUIDANCE. >> HE'S ANXIOUS. >> HARD QUESTION. >> WHAT I INSTRUCT ON THE COMMITTEE IS IF YOU LOOK AT UNIVERSITY THERE WERE 96 DIFFERENT CONFLICT OF INTEREST POLICIES EACH DEPARTMENT, EACH ENTITY, HAD THEIR OPEN RULES IN PLACE. THERE ARE A LOT OF GUIDELINES. SO WHERE DOES ONE START? >> I THINK IT'S A REALLY INTERESTING QUESTION BECAUSE I THINK AS PART OF THE -- ASKING THE QUESTION DO THEY SUFFICE. ADDING MORE GUIDANCE OR AS SOME ARGUE MORE REGULATIONS MYERS US IN COMPLEXITY RATHER THAN GIVES MORE CLARITY HOW TO PROCEED. SOME GUIDANCE USEFUL BUT HOW TO SELECT WHICH GUIDANCE DO YOU FOLLOW OR PUT SOMETIMES WHAT APPEARS CONFLICTING GUIDANCE TOGETHER, THOSE ARE STRUGGLES IN ALL KINDS OF SPHERES OF LIFE. PART OF WHAT WE NEED TO THINK ABOUT FOR THE BRAIN INITIATIVE RESEARCH IS WHICH GUIDANCE IS MOST USEFUL IN GUIDING INVESTIGATORS IN THE BRAIN INITIATIVE PROGRAM ITSELF, DOING THE MOST ETHICALLY RELEVANT WORK. I DON'T KNOW THE ANSWER TO HOW WE DO THAT. BUT I THINK THAT'S THE CHALLENGE. >> WHAT I TOOK FROM YOUR PRESENTATION WHICH IS INTERESTING AND HOW YOU LAID IT OUT WAS THAT THERE MIGHT BE DIFFERENCES OR ADDITIONS BUT NOTHING REALLY CONTRADICTORY WITH ANYTHING ELSE. IT'S SORT OF -- HOW MUCH SPECIFICITY DO WE WANT? MAYBE YOU DON'T TAKE IT THAT WAY. SOUNDS LIKE FROM JIM'S QUESTION, HE DOESN'T QUITE TAKE IT THAT WAY EITHER. >> I THINK YOU NEED -- SPECIFICITY IS THE DETAIL IS WHAT MATTERS. AND HOW THEY ARE SPECIFICALLY APPLIED IS WHAT MATTERS. THAT'S ABSOLUTELY TRUE. THERE IS A QUESTION OF WHAT GUIDANCE DO YOU CHOOSE FROM EVEN IF THEY DON'T CONFLICT. BELMONT AS I SAID, HAS ENDURED A CLARITY TO IT. PEOPLE LIKE IT BECAUSE IT MAKES SENSE. THE PRINCIPLES OF BELMONT ARE VERY DON'T NEED TO RESEARCH, AND THE APPLICATION OF THOSE PRINCIPLES THAT IS ALREADY SPECIFIED A LITTLE BIT IN BELMONT SPECIFIED IN REGULATION THAN ANYTHING ELSE IS DETAIL. IT'S VERY MUCH YOU NEED THOSE -- THAT LEVEL OF DETAIL. >> WONDER WHETHER ANYTHING WOULD BE DIFFERENT. TAKE THE SAME QUESTION AND RAN THROUGH EACH GUIDANCE WHETHER YOU GET TO A DIFFERENT OUTCOME OR WHETHER THEY END UP IN THE SAME PLACE. >> ALSO THE QUESTION TO DO SOME OF THESE THINGS, FOR EXAMPLE, PLACES THAT WERE RAISED ABOUT ORGANOIDS. WHERE DO THEY FALL? WHICH GUIDANCES AVAILABLE, ANY DIRECTION HOW TO PROCEED THERE. THAT'S A REAL IMPORTANT QUESTION. >> MY QUESTION IS GOING TO BE NO -- WHAT MATTERS IS FROM AN INVESTIGATOR PERSPECTIVE, THE INVESTIGATOR WANTS TO GET THEIR RESEARCH DONE, THEY WANT TO BE ETHICAL, BUT THEY -- AND THEY NEED THE GUIDANCE BUT IT NEEDS TO BE CLEAR TO THEM WHERE THAT GUIDANCE IS AND INTERPRETATION IS GOING TO BE CONSISTENT WITH EXPERIMENT -- FROM EXPERIMENT TO EXPETER STUDY TO STUDY. SUSPECT ONE O EMIR QUESTION REALLY IS THIS: ISN'T ONE OF THE ISSUES THE HIGH DEGREE OF VARIABILITY OF INTERPRETATION OF EXISTING REGULATIONS? >> SURE. THERE IS VARIABILITY IN INTERPRETATION OF EXISTING GUIDANCE. ABSOLUTELY. THAT'S PROBLEMATIC IF THE SAME KIND OF QUESTION, IT GET DIFFERENTLY INTERPRETED BY DIFFERENT GROUPS. >> PEOPLE ARE -- THAT IS SOMETHING I HAVE DONE RESEARCH ON. IT'S REALLY IMPORTANT PROBLEM. I DON'T HAVE A GREAT SOLUTION. >> THANK YOU VERY MUCH, CHRISTINE. [APPLAUSE] NEXT IS KAREN ROMMELFANGER PREVIOUSLY INTRODUCED. WHAT CAN WE LEARN FROM DEEP BRAIN STIMULATIONS, I GUESS PARTICULARIZED FROM THAT PARTICULAR CASE. THANKS, KAREN. >> THANK YOU. EVERYBODY HEAR ME? THANKS, EVERYBODY FOR BEING HERE DURING THE LUNCH HOUR WHEN BLOOD SUGAR IS LOW. I CAN SEE THAT THERE'S ENTHUSIASM OUT THERE. SO WE CAN MAKE IT THROUGH. WHAT I WILL TALK ABOUT IS USING DEEP BRAIN STIMULATION AS CASE STUDY FOR CONSIDERING ETHICAL ISSUES AND INTEGRATED DEVICES. OUTLINE FOR THIS TALK AND KEEP WITHIN TIME IS INTRODUCE WHY DISCUSS DBS, WHY NEUROETHICS IS NEEDED, MOVE TO ETHICAL ISSUES AND HIGHLIGHT IF YOU PRINCIPLES AN GUIDELINES DIRECTED SPECIFICALLY TOWARDS DBS AND GIVE EXAMPLES OF SOME ISSUES AND TALK ABOUT HOW TO REALIZE THE MOON SHOT BY CONSIDERING ETHICAL METHODOLOGYIES ETHICS METHODOLOGIES FOR ANSWERING THESE QUESTIONS AND BUILDING A ROADMAP FOR TENABLE (INAUDIBLE). >> WHY DISCUSS DBS AND WHY NEED NEUROETHICS? THERE ARE FEATURES OF NEUROMODULATION TECHNOLOGIES THAT LEND TO SPECIAL ETHICAL CONSIDERATION. NEUROMODULATION IS ONE OF THE FASTEST GROWING AREAS OF MEDICINE IMPACTING HUNDREDS OF THOUSANDS OF PATIENTS WITH NUMEROUS BRAIN DISORDERS AND DISEASES. NEUROMODULATION TECHNOLOGIES ARE CHARACTERIZED BY FEATURES SUCH AS THE FOLLOWING. THEY ARE INVASIVE, IN THE CASE OF DBS AT LEAST. ARE THEY TARGETING LOOING DA CHANGES, AND DEGREE OF SO CALLED INVASIVENESS WHICH IS NOT NECESSARILY DISTINGUISHING FROM THOSE TECHNOLOGIES NOT INVASIVE WE CAN TALK ABOUT LATER BUT INVASIVENESS RAISES CONCERNS OF RISK. APPLICATION IS OFTEN REPEATED OR CHRONIC. AND REQUIRES ADDITIONAL LONG TERM RESPONSIBILITY. THERE IS ASSUMED REVERSIBILITY AND THAT THE CLINICAL EFFECTS CAN BE MODULATED. REVERSIBILITY IS ALSO SOMETHING THAT CAN BE ARGUED AND DISCUSSED LATER. AND AS WITH ANY INNOVATION, THERE'S GOING TO BE CERTAIN AMOUNTS OF UNCERTAINTY, UNCERTAINTY ABOUT SIDE EFFECTS AND SHORT AND LONG TERM CONSEQUENCES. AND UNPREDICTABILITY ABOUT HARM. PHYSICAL HARMS LIKE HEMORRHAGE AND INFECTION FOR INSTANCE WITH INVASIVE TECHNOLOGY AND PROBABLY MORE FOCUS OF TODAY'S CONVERSATION ARE THE NON-PHYSICAL HARMS, THOSE THAT WE HAVE BEEN DISCUSSING TODAY IN PARTICULAR ONES THAT CHRISTINE BROUGHT UP AROUND AUTONOMY, DECISION MAKING AND SENSES OF SELF. WHY DISCUSS DEEP BRAIN STIMULATION? DBS IS FORM OF NEUROMODULATION. APPLICATION SHOWN PROMISE AND DISORDERS FROM MOTOR PSYCHIATRIC, PARTICULARLY SEVERE CONDITIONS THOSE APPEAR INTRACTABLE FOR SIDE EFFECTS ARE UNBARABLE TO UNBARABLE COMPARED TO OTHER STANDARDS OF CARE AVAILABLE TO INTERVENTIONS. PATIENT WHOSE RECEIVE DBS EXCEED 100,000, SEVERAL THOUSAND PEOPLE IMPLANTED EACH YEAR. DBS WORKS. BY INTERVENING INTO NEURONAL NETWORKS FOR CHRONIC STIMULATION. THEY'RE STEREOTACTICALLY INTO DEEP STRUCTURES OF THE BRAIN AND& TARGET SITE STIMULATION IS VARYING FOR EACH CONDITION. ELECTRODES ARE CONNECTED TO ELECTRIC PULSE GENERATOR DONOR THE SKIN AND BATTERY IS IMPLANTED UNDER THE CLAVICLE. PRECISE MECHANISM OF DBS IS STILL NOT TRULY KNOWN IN DETAIL. WHAT PRECISE ELEMENTS OF NEURONS ARE STIMULATED, THE SPREAD OF CURRENT NOT NECESSARILY CLEAR. DESPITE THAT THIS DOES NOT MAKE INTERVENTION CLINICALLY IRRELEVANT OR IRRELEVANT AS SUBJECT OF STUDY. SUCCESSFUL APPLICATION OF THESE TECHNOLOGIES REQUIRE MORE THAN YOUR TYPICAL NEUROSURGERIES. THEY NECESSARILY BECAUSE OF CHRONICITY OF STIMULATION INVASIVENESS OF PROCEDURE AND WEAR AND TEAR OF LEADS OF BATTERIES, LONG TERM MAINTENANCE AND OVER SITE IS REQUIRED. BOTH PATIENT AND CLINICIAN RESEARCH. SUCCESSFUL APPLICATION TECHNOLOGIES REQUIRE GUIDANCE BEFORE DURING AND AFTER SURGERY DEFINING REALISTIC EXPECTATION. DBS OFFERS OPPORTUNITY FOR MECHANISTIC WORK AND POTENTIAL FOR APPLICATION. AS SUCH THERE'S EVER GROWING APPLICATION OF DBS WHICH PROMISES INSIGHTS FOR OUR CIRCUIT MODELS OF DISEASE AND INTERVENTION, RANGING FROM MOTOR DISORDERS TO THOSE PSYCHIATRIC APPLICATION. FDA APPROVAL OF THESE APPLICATIONS STARTED FIRST WITH PARKINSON'S DISEASE AND MOTOR DISORDERS AND BEING EXPLORED FOR MORE PSYCHIATRIC INTERVENTION. WHY NEUROETHICS? WHAT I WANTED TO POINT OUT, WE DO ALL THIS WORK UNDER THE LEGACY OF PSYCHOSURGERY, THAT IS THERE ARE HISTORICAL CONCERNS PEOPLE REMEMBER ABOUT CERTAIN KINDS OF SURGERY WHERE PATIENTS WERE GIVEN MEDICAL INDICATIONS THEY WERE REMOVED PARTS OF THE BRAINS, WITH NON-SPECIFIES TISSUE DAMAGE, PATIENTS WEREN'T INFORMED, NOTS ENOUGH DECISION MAKING PROCESSES BETWEEN PATIENT AND PHYSICIAN, THERE WAS NO PROPER INFORMED CONSENT. THERE WAS NO FOLLOW-UP OR TREATMENT STANDARDS. THIS IS DIFFERENT WITH DEEP BRAIN STIMULATION PATIENTS HAVE ARE STRONGLY INVOLVED IN THE PROCESS, THERE IS INFORMED CONSENT, THE SURGICAL METHOD IS PRECISELY PLANNED, THE SELECTION OF TARGET IS HYPOTHESIS DRIVEN. THERE IS WITH DBS CONSIDERED LARGELY A REVERSIBLE TYPE OF INTERVENTION. INTERDISCIPLINARY TEAMS ARE ENCOURAGED TO BE INVOLVED IN THE INFORMED CONSENT PROCESS. AS MENTIONED EARLIER THESE ARE RESPONSIBLE RESEARCH CONCERN. AND NEUROETHICS MOVES BEYOND, I USE THE SAME TERM TYPICAL RCR CONCERNS AND COMPLIANCE. I OFTEN FEEL LIKE WITH THESE NEUROETHICS CONVERSATIONS WE HAVE TO UNDO THE DAMAGE FOR RCR RESEARCH FOR PEOPLE TO CLICK ONLINE AND COMPLY WITH CERTAIN EXPECTATIONS WITHOUT UNDERSTANDING THE MEANING OR IMPLICATIONS OF ETHICAL AWARENESS. SO WITH NEUROETHICS IS INTERROGATE ASSUMPTIONS AN CONCEPTS ABOUT THE MEANING IMPLICATION AND PURPOSE OF NEUROSCIENCE RESEARCH AND ALSO IN ADDITION TO THAT NEUROETHICS CONCERN AS HORIZON SPANNING FUNCTION ANTICIPATE AND MANAGE POTENTIAL ETHICAL ROADBLOCKS IN RESEARCH AND DEVELOPMENT AND ULTIMATELY GOING TO ADVANCE ETHICAL NEUROSCIENCE RESEARCH. SO NEXT ON TO ETHICAL ISSUES, WHERE I WILL DISCUSS EXISTING PRINCIPLE HIGHLIGHTS TO HIGHLIGHT A FEW ON DBS AND GO THROUGH EXAMPLE ISSUES. >> SO THERE HAVE BEEN A NUMBER OF DISCUSSIONS ALREADY. EXAMINING DEEP BRAIN STIMULATION WITH PRINCIPLES OF ETHICS. THESE ARE THE BELMONT PRINCIPLES MENTIONED EARLIER AND MAPPING FOR DBS TREATMENT. THESE INCLUDE SIDE EFFECTS PHYSICAL, MENTAL, EFFECTS ON DEVELOPING BRAIN, PATIENT SELECTION RISK PROPORTIONAL TO BENEFIT. DESPERATION UNREALISTIC EXPECTATION, COMPETENCE TO CONSENT USE IN MINORS. IN ADDITION, THERE WAS A -- THERE HAVE BEEN A COUPLE OF CONSENSUS MEETINGS DBS GROUP PARTICULARLY TOWARDS APPLICATION OF PSYCHIATRIC DBS. THESE INCLUDED MORE DELINEATED ETHICAL PRINCIPLES THAT YOU CAN PROBABLY IF YOU WANT TO THESE THREE CLASSIC BELMONT ONES. WHAT I WANT TO TALK ABOUT IS THIS CONCERN ABOUT AUTONOMY OF RESEARCH SUBJECT. IN CONTEXT NUMEROUS APPLICATIONS OF DBS WE FACE ISSUES AROUND ASSESSING RISK AUTONOMY AND HAVING APPROPRIATE CONSENT. WE HAVE THREE KINDS OF GROUPS THAT LUMP THESE THINGS INTO. THAT'S PERSONALITY AND IDENTITY CHANGES, COGNITION CHANGES AND CONCERNS AROUND VULNERABLE POPULATIONS AND BRAIN. WE HAVE NUMEROUS CASES OF UNEXPECTED PARKINSON DISEASE, SOMETIMES APPRECIATED BY THE PATIENT. HOWEVER FOR APPLICATIONS FOR INTRACTABLE MAJOR DEPRESSION, PERSONALITY CHANGE MIGHT BE CONSIDERED DESIRED EFFECT. HOW DO YOU RECONCILE THESE CHANGES? ALSO IN PARKINSON DISEASE, THERE HAVE BEEN OBSERVED CHANGES IN MEMORY OR OTHER COGNITIVE CAPACITIES, IN CASE OF ALZHEIMER'S DISEASE, WE HOPE TO AFFECT MEMORY AND HELP TO AFFECT COGNITION AND WE DO WITH PERSONALITY IDENTITY AND PSYCHIATRIC DISORDERS BUT LESS SO IN PARKINSON DISEASE WHERE OCD WE SEE POTENTIAL CHANGES. VULNERABLE POPULATIONS THERE'S CERTAIN CHILDREN AND INTERVENTIONS WITH DBS POSED TO YOUNGER GROUPS SUCH AS WITH TURRET'S AND DYSTONIA, ALSO THOSE PATIENTS BEING -- DISORDERS OF CONSCIOUSNESS DBS EXPLORED AND THERE'S THIS IDEA OF IS IT POSSIBLE PERHAPS GIVEN THE ABILITY TO SEE MODIFICATION AND COGNITION IN MEMORY, MIGHT BE ABLE TO IMPACT HEALTHY INDIVIDUALS AND IMPACT HOW WE DEFINE DISEASE AND CONSIDER NORMALITY. WHAT I MEAN BY THAT IS THAT THE WAY WE DEFINE DISEASE IS NOT PURELY SCIENTIFIC, THIS IS DETERMINED OFTEN BY SOCIETAL NORMS. AS WE ADD NEW TECHNOLOGIES TO THIS, IT COULD CHANGE OUR CALCULUS. WHAT CONSIDERED NORMAL OR DESIRABLE IN SOCIETY. HERE IS ONE CASE THAT I BRING FORWARD TO ILLUSTRATE SOME EXAMPLE OF CONCERNS WITH AUTONOMY, AUTHENTICITY AND CAPACITY. MANY FAMILIAR WITH FROM GROUP IN THE NETHERLANDS, 62-YEAR-OLD PAR KIN SEWNIAN PATIENT HAS BECOME MANIC THROUGH NUCLEUS DBS AFTER THREE YEARS OF MANIA BECAME FINANCIALLY RUINED, FINALLY HOSPITALIZED PSYCHIATRY. AND IT COULD BE SWITCHED ON AND OFF BY SWIMMING STIMULATION ON AND OFF. THE DRUGS WERE NOT EFFECTIVE OR NOT TOLERATEDDED BECAUSE OF SEVERE SIDE EFFECTS. THEREFORE THE PATIENT AND PHYSICIANS WERE CON FRONTED WITH DILEMMA, WITH STIPULATION OFF MENTALLY INCOMPETENT HAS INSIGHT CAPACITY TO JUDGE BUT IMPAIRED VETERAN STIMULATION ON WHO WAS MAN UK AND COULDN'T LIVE INDEPENDENTLY. SO BEFORE LETTING THE PATIENT DECIDE WHETHER HE WANTED STIMULATION ON OR OFF IT WAS NECESSARY TO DECIDE WHICH THE PATIENT SHOULD BE IN WHEN MADE HIS DECISION. ON OR OFF STIMULATION. HOSPITAL ETHICS COMMITTEE ADVISE THE PATIENT SHOULD MAKE A DECISION ABOUT STIMULATION WHILE IN OFF STATE PROBABLY FOLLOWING INTUITION THIS WAS MORE NATURAL OR AUTHENTIC STATE. WHAT DID THE PATIENT DECIDE? PATIENT DECIDED WHILE HE WAS IN OFF STATE TO CONTINUE STIMULATION THOUGH NEW ON STIMULATION HE WOULD HAVE TO LIVE INSTITUTIONALIZE. THIS BRINGS UP ISSUES OF WANTED AND UP WANTED -- UNWANTED SIDE EFFECTS. PATIENT CHOSE THE MANIA. WHEN CAPACITY AND AUTHENTIC SELF WHO IS TO BE ASKED AND THE APPROPRIATENESS OF ACCOMMODATING THESE SIDE EFFECTS OF APPROPRIATENESS OF DELEGATING RELEGATING RESOURCES TO AN INDIVIDUAL TO KEEP THEM IN A MANIC STATE. ANOTHER CASE, THIS IS A PATIENT WITH D BROADCASTS FOR OCD. ADRIENNE WAS FEW PATIENTS WHOM DBS WAS IMMEDIATELY EFFECTIVE. HE FEELS HE CHANGED AS A PERSON, MORE OPEN AND SPONTANEOUS AND ENJOYS HIS WIFE AT BIRTHDAY PARTIES AND DINNERS WITH FRIENDS. HE'S BECOME MORE HIMSELF AND THIS WOULD BE HAD NOT DEVELOPED OCD AT AGE 13, HIS WIFE HOWEVER IS NOT SO HAPPY WITH THE CHANGES. THAT IS TO SAY SHE'S HAPPY HE SUFFERS LESS FROM OCD BUT FIND HE CHANGED A LOT TO EXTENT SHE FEELS THIS IS NOT THE MAN I MARRIED. SOCIALLY INAPPROPRIATE THINGS, WITH FRIENDS HE TALKED ABOUT DBS, HE DOESN'T REALLY LISTEN TO THEM, TALK TO THEM ABOUT THEIR LIVES T. SHE FEELS EMBARRASSED AND SHE TRIES TO CHANGE OTHER DBS SETTINGS THE COMPULSION IMMEDIATELY RETURNED LEADING TO CONCERN OF PRESSURE OF COMPULSION OR PRESSURE OF RELATIONSHIP. THIS LEADS TO UNDESIRABLE CHANGES AND CONFLICTING VIEWS WHAT'S CONSIDERED WANTED OR UNWANTED AND WHOA GETS TO DECIDE. WITH THE LAST PIECE AROUND MOOD ENHANCEMENT IS UNINTENDED PROCEDURAL EFFECT. THIS IS ANOTHER CASE IN NETHERLANDS, THERE WAS A PATIENT WITH DBS. FOR OCD. THIS IS THE EXAMPLE FROM PRACTICE THEY OPERATED ON YOUNG WOMAN COMPULSIVE COMPLAINT NOT DIMINISHED DIRECTLY AFTER PROCEDURE. SPECIFIC STIMULATION SETTING, SHE SUDDENLY FELT HAPPY. COULD YOU PLEASE LEAVE SETTINGS AS YOU ARE NOW, BECAUSE I FINALLY FEEL WELL. I ANSWERED I'M SORRY BUT MY JOB IS TO RID YOU OF COMPLAINTS NOT MAKE YOU HAPPY. I'LL PUT THE DEVICE OFF. SO WHAT ARE THE APPROPRIATE EXPECTATIONS BEYOND THERAPY DETERMINING WELLNESS AND WHAT IS FUTURE ROLE OF PHYSICIANS ENHANCEMENT BEYOND PURVIEW OF MEDICINE AND OBLIGATIONS OF MEDICINE, MEDICAL PROFESSIONALS AND SCIENTISTS. SO SAMPLE RESEARCH ETHICS RESEARCH QUESTIONS FROM THIS WOULD BE HOW TO DEFINE CHANGES IN PERSONALITY SELF-AND PERM IDENTITY. HOW RELIABLE IS SELF-REPORT ALONE WITH FAMILY, FRIENDS, CLINICIAN VIEWS BE HELPFUL AS WELL. INFORMATION USEFUL FROM CLINICAL PERSPECTIVE. PERHAPS MAYBE THESE QUESTIONS ARE ONLY PERSONALITIES AND IDENTITY, ONLY RELEVANT IF THEY RESULT IN BEHAVIORAL SOCIAL CHANGES. HOW DETERMINE WHICH EFFECTS ARE SPECIFIC TO STIMULATION AND NOT SECONDARY EFFECTS AND WHAT COUNTS AND WHO DETERMINES WHAT UNWANTED EFFECT WOULD BE AND METHODOLOGIES USED THE ASSESS CHANGES AFTER SIMILAR THE STIMULATION. HOW WOULD ONE ASSESS FEELING LESS LIKE HIMSELF AND HOW TO MEASURE AUTHENTICITY. I SEE THAT I HAVE BE GIVEN THE RED CARD. IF I COULD JUST HAVE -- IMPLICATIONS OF THIS TYPE OF RESEARCH IS NOT JUST PHILOSOPHICAL EXERCISE IMPORTANT AND HARD AND I INTEND TO HEAR SCIENTISTS SAY IT'S PHILOSOPHICAL EXERCISE BECAUSE IT'S TOO HARD FOR THEM, EASIER TO DISMISS THAN REALIZE THE COMPLEXITY OF ADDRESSING THE TOUGH ETHICAL QUESTIONS. THEY'RE IMPORTANT TO ASK BECAUSE HOW PATIENTS UNDERSTAND PERSONAL IDENTITY IS RELEVANT FOR PURPOSE OF VERGE IMPACT, ACTUALLY PRAGMATIC. UNDERSTANDING PATIENT VIEWS AND IDENTITY CAN CHANGE WHETHER PROCESSES OF INFORMED CONSENT ARE ADEQUATE AND HOW TO EVALUATE RISK. IN TECHNOLOGY ASSESSMENT FORMS RANGE OF GOVERNMENT AND POLICY DECISIONS AND KIND OF INFORMATION CAN INFORM THAT IN ADOPTION OF GUIDELINES HEALTH TECHNOLOGY, ASSESSMENT NEEDS AN THINGS LIKE INSURANCE COVERAGE. IMPORTANTLY DOING THIS RESEARCH TO ASSESS PARTICULAR VIEWS AND LANGUAGES OF THE PARTICIPANTS OF THE STUDIES AND RESEARCHERS FACILITATE COMMON LANGUAGE BETWEEN RESEARCHERS AND PARTICIPANTS TO ADEQUATELY DISCUSS RISK AND BENEFIT. HOW DO WE REALIZE THE MOON SHOT? THERE ARE NUMBER OF EVIDENCEICS METHODOLOGIES WE CAN USE AND DESCRIBE INN INVESTIGATING DB INNOVATING DBS. EMPIRICAL DEMONSTRATED BY LAURA DUNN JUST NOW I WON'T GO INTO THEM BUT ALSO -- THESE ARE THE MANY STUDIES FUNDED THROUGH THE NEUROETHICS RO1. OUR CONCEPTUAL METHODOLOGIES, THESE ARE ONES THAT ARE ACTUALLY OVERLOOKED AND PERHAPS THE MOST MEANINGFUL FOR US TO EXPLORE, MEANINGS OF CONCEPTS LIKE CONSCIOUSNESS, IDENTITY, HUMANS AND MIND. THE WAY THEY OPERATIONALIZE EXPERIMENTALLY AND UNDERSTANDING PERCEPTION OF TECHNOLOGY DEVELOP AND TRANSLATING, IS CRITICAL. SO FOR THE ROAD AHEAD, NEUROSCIENTIFIC -- GRAY MATTERS REPORTS I FOUND USEFUL, THAT I AGREE WITH POINT ABOUT CHRISTINE SAID ABOUT EDUCATION IN THE CURRICULUM, WE HAVE GREAT INFRASTRUCTURE BEGINNING HERE IN BRAIN WITH NEUROETHICS WORKING GROUP AND DIRECTOR OF THE NEUROETHICS PIECE IS HERE AT NIH. CHRISTINE GRADY, HANK REELEY AND PEOPLE HERE, ESTABLISHING PLATFORM FOR RESEARCH, MUCH FOR US TO LEARN FROM HPP AS CAROLYN SAID ENGAGEMENT, NEUROETHICS IS ENTRY POINT FOR ENGAGEMENT TO NEUROSCIENCE FOR THE PUBLIC SO YOU SHALL EXPLORE THAT AND ALSO THAT SHOULD ALSO GUIDE HOW WE DISCUSS HEIGHT AND PRESENT WORK, HAVE TOUGH ACCORDANCES ESPECIALLY THE CONCEPTUAL ONES. FINALLY A PLUG FOR GLOBAL COLLABORATION, HOW DO WE COLLABORATE WITH OTHER GROUPS ON THE GLOBAL STAGE INCLUDING THOSE MENTIONED TODAY. THANK YOU VERY MUCH. [APPLAUSE] >> WE CAN TAKE ONE QUICK QUESTION, ARLEEN. WANT TO COME THE MICROPHONE. >> I LOVE TO TALK AND I WANT TO LINK IT TO YOUR TALK. DO YOU THINK THAT YOU PRESENTED A COUPLE OF SITUATIONS, CASES VERY DIFFICULT TO SOLVE. DO YOU THINK MORE GUIDELINES ARE POSSIBLE OR DESIRABLE TO SOLVE THOSE TYPE OF CASES OR IS THERE SOMETHING ELSE YOU ARE THINKING OF WHEN YOU SAY THAT NEUROETHICS ADVANCES NEUROSCIENCE. >> ANSWER THAT QUESTION. I'M THINKING NEUROETHICS INTEGRATED INTO THE PRACTICE OF NEUROSCIENCE. SO THAT COULD MEAN PARTICIPATING GUIDELINE CONSTRUCTION THOUGH I THINK WE HAVE A LOT WE DON'T LOOK AT, THAT'S WHAT FRANCIS SAID EARLIER AND THAT'S TRUE. IN CONCEPTUALIZING RESEARCH PROJECTS WHAT ARE THE MEANING OF TYPES OF PROJECTS WHAT QUESTIONS COULD BE ANSWERED BY NEUROSCIENCE. HOW DO YOU ENGAGE IN CONDUCT OF THE RESEARCH DETERMINING WAYS METHODOLOGIES FOR INFORMED CONSENT AND MAINTAINING EVALUATIONS OF RISK THROUGHOUT THE PROJECT AND THINKING ABOUT DISSEMINATION. THOSE ARE THE WAYS NEUROETHICS ARE INVOLVED. IT CAN BE NUMEROUS LEVELS AND I WOULDN'T LIMIT IT TO GUIDELINE. WITH THAT YOU HAVE TO HAVE CLEAR IDEA HOW YOU WANT TO IMPLEMENT IT. >> THANKS, KAREN. [APPLAUSE] GET THE MICROPHONE ON. THE LAST SPEAKER IN THIS GROUP BEFORE OUR PANEL DISCUSSION IS PROFESSOR SHEN, PROFESSOR OF LAW, UNIVERSITY OF MINNESOTA. HE WILL TALK ABOUT BRAIN 2025 IN THE FUTURE OF NEUROLAW. THANKS, FRANCIS. >> THANK YOU. TO NIH, TO ALL OUR STAFF MEMBERS, CHAIRS OF OUR COMMITTEE HAVE DONE EXCELLENT WORK AND COMMITTEE MEMBERS FOR COMING. I'LL SPEND FEW MINUTES ENTRYING TO INTRODUCE FIELD OF NEURAL LAW. I WON'T TALK ABOUT MY OWN WORK BUT I RUN A LAB, OUR MOTTO IS EVERY STORY IS A BRAIN STORY WHICH IS TRUE, THAT WE HAVE SEEN TODAY EVERY STORY AT PRESENT IS POORLY UNDERSTOOD AND SOMETIMES REALLY NOT SO UNDERSTOOD STORY. THAT'S A CHALLENGE WE WILL SEE FOR LAW. MY GOAL BIG CONTEXT THREE TAKE AWAYS AND RAISE A BUNCH OF QUESTIONS ABOUT TRYING TO ANSWER THEM, NOTHING TO DISCLOSE. HERE IS CONTEXT, TWO BIG POINTS. ON ONE HAND WE HAVE SEEN LAW FACILITATES OR HINDERS ADVANCES IN UNDERSTANDING BRAIN CIRCUITS. THAT'S THE REGULATORY FUNCTION. A LOT OF YOU ARE FAMILIAR WITH THAT. INTELLECTUAL PROPERTY FUNCTION, DO WE GET THE OPTIMAL AMOUNT OF INVESTMENT IN R&D. I WANT TO SPEND MORE TIME TALKING ABOUT THE OTHER SIDE OF BALL GAME, THESE COMING FROM BRAIN 2025, HUMAN BRAIN PROJECT FROM THE WORK IN CHINA FROM ACROSS THE GLOBE, OUR ADVANCES IN UNDERSTANDING BRAIN CIRCUITRY HAVE TRANSFORMATIVE POTENTIAL TO RESHAPE THE LAW. THAT'S BECAUSE LAWS IN THE BUSINESS OF UNDERSTANDING HOW THE HUMAN BRAIN WORKS WHETHER SAYS SO SPECIFICALLY OR NOT AND DOING ALL SORTS OF THINGS TO MODIFY BRAIN FUNCTION FOR BETTER AND FOR WORSE. I WANT TO PICK UP ON A THEME THAT I'M GLAD HAS BEEN ANNOUNCED THE LAST FEW PANELISTS. THE BRAIN IS SPECIAL. I'LL SAY AGAIN, THE BIG IDEA IS THAT NOT HOW LONG THIS WORKS OR HOW HEARTS WORK OR LUNGS WORK AND I BET THE ENTIRETY OF MY SALARY, NOT TRUE OFFER, THAT THERE WILL NEVER BE A FIELD -- NEVER BE A FIELD LAW IN THE LUNG AND LAW IN THE KIDNEY, NOT A NECESSARY COMPONENT FOR EVERYTHING WE DO IN LAW. WE NEED HEARTS THAT FUNCTION AND KIDNEYS AND THE LIKE. LAW REALLY DEALS WITH BRAIN. IT IS WHY THERE IS A FIELD OF NEURAL LAW, NOT AWARE OF IT, IT'S BEEN AROUND FOR 10, 15 YEARS, THERE'S OVERLOOK HISTORY AS KAREN SAID THAT HISTORY GOES BACK TO PSYCHOSURGERY AND PRE-FRONTAL LABOTOMY. (INAUDIBLE) AND OTHERS HAS BEEN WORKING ON THIS AND THERE ARE NOW LOTS AND LOTS OF CASES WHERE BRAIN SCIENCE IS SHOWING, THERE ARE PIECES OF LEGISLATION, WHERE BRAIN SCIENCE IS BEING REFERENCED AND BRAIN 2025 WAS AWARE OF THIS. IS AWARE OF THIS. EACH OF US I THINK PULLED OUT OUR PARTS OF VISION STATEMENT THERE ARE -- THESE ARE SAME PAGES, I HIGHLIGHTED IT -- IN THE ORBIT TO RECOGNIZE DISCOVERIES COMING OUT OF LAB RELATED TO BRAIN MAYBE FOR INSTANCE USED TO JUDGE ACCOUNTABILITY THAN LEGAL SYSTEM, JUDGE INTENT OR ACCOUNTABILITY AND THAT PERHAPS THERE OUGHT TO BE OUTREACH TO LEGAL PRACTITIONERS. IF YOU THINK ABOUT THAT FOR A MOMENT, WHAT OTHER CONTEXT IS NIH WORK, WE THINK WE OUGHT TO TELL LAWYERS ABOUT THIS. THERE AREN'T MANY. FOR THAT REASON NEW TERRITORY FOR A PLACE LIKE NIH, FOR NEUROETHICS. SOME OF THE NEUROETHICS CONCERNS, I ECHO WHAT YOU SAID, VERY IMPORTANT BUT RECOGNIZABLE. INFORMED CONSENT, HAVE TO DEAL WITH THAT FOR A LONG TIME, DON'T HAVE TO DEAL WITH IT HERE, IT'S A LEGAL QUESTION BUT THERE ARE NEW LEGAL QUESTIONS TOO, BECAUSE OF THE BRAIN. NAVIGATING THE TERRAIN OF NEUROSCIENCE AND LAW IS CHALLENGING BECAUSE LAW SOME WAYS COULDN'T BE MORE DIFFERENT THAN NEUROSCIENCE. HERE IS A SKETCH OF SOME OF THE WAYS. WE HEARD FROM THE FIRST COMMENTS TODAY, NEUROSCIENCE IS ABOUT COMPLEXITY. AND THERE ARE PROBABILISTIC NATURE OF RELATIONSHIP OF BRAIN BEHAVIOR, LAW IS SIMPLE AND BINARY. GUILTY OR NOT GUILTY. YOU GET COMPENSATION OR NOT. RELIABLE OR NOT. WE CANNOT SAY THE JURY HAS RETURNED AND SAYS MORE RESEARCH IS NEEDED. THE JURY HAS RETURNED, 72.7% CHANCE AND NO, WE DON'T OPERATE IN A WAY NOT IN LEGISLATION. THERE IS A BUDGET OR THERE ISN'T. THIS IS THE WORLD THAT I OPERATE IN AND SO TRANSLATING PROBABILISTIC DATA INTO THESE OUTCOMES IS CHALLENGING. ANOTHER CHALLENGE IS LAW ONE VIRTUE IS IT'S LOCAL AND DIVERSE. STEP ACROSS STATE LINES LET ALONE GLOBAL ACROSS CONTINENT AND EVERYTHING IS DIFFERENT. YOU CAN'T REPLICATE THE ISSUE BECAUSE LAW HAS -- THE WHOLE CONTEXT IS DIFFERENT T. IT MAKES VERY CHALLENGING. NEUROSCIENCE IN GENERAL MUCH MORE UNIVERSAL ALLOWS UNIVERSAL. NEUROSCIENCE AT ITS BEST IS COLLABORATIVE, THOUGH CERTAINLY COMPETITION. LAW AGAIN ALMOST BY DEFINITION IS ADVERSARIAL. THAT'S REALLY DIFFERENT. SO YOU HAVE TWO SIDES TO USE NEUROSCIENTIFIC EVIDENCE FOR FUNDAMENTALLY DIFFERENT PURPOSES. THIS WILL BE MY LAST POINT, EMPHASIS ON MOON SHOT BREAK THANK YOU DISCOVERIES LAW IS EXTREMELY TETHERED NEUROSCIENCE FORWARDED POTENTIAL IF USED PROPERLY. DELINEATE BETWEEN INAPPROPRIATE NEUROSCIENCE BETWEEN APPROPRIATE NEUROSCIENCE, THAT'S EXTREMELY HARD TO DRAW. FINALLY THE FUTURE IS UNCERTAIN AND THIS DIALOGUE IS ESSENTIAL FOR MAPPING IT OUT. SO LET ME PLACE IT IN CONTEXT RELATIVE TO WORK THAT NIH DOES. MOST WE HAVE SEEN OF BRAIN 2025 IS UNDERSTANDABLY APPROPRIATELY MOTIVATED TO BE CLINICALLY RELEVANT, UNDERSTAND BRAIN CIRCUITRY AND TO IMPROVE HEALTH AND WELL BEING IN VARIETY OF DISORDER AND DISEASE. NIH IS NOT IN THE BUSINESS AND SHOULDN'T BE FUNDING THINGS LIKE BRAIN BASED LIGHT EFFECT. IF WE DID HAVE SOME BETTER BRAIN BASED LIE DETECTION TODAY IT WOULD BE AMAZING BOON IT WOULD BE TREMENDOUSLY POWERFUL SOCIALLY BUT WOULDN'T AFFECT HOW WE THINK BUT AS A RESULT SHORT TERM WHAT'S HAPPENING IN NEURAL LAW IS WE ARE LOOKING AT THE DOWNSTREAM CONSEQUENCES OF DEVELOPMENTS OFFER FOR HEALTH T. AN EXAMPLE, MANY OF YOU KNOW THE NATIONAL INSTITUTES FOR AGING LAST YEAR, PROPOSE ALZHEIMERS SPECTRUM, SO WE MOVE FROM SYMPTOM BASED DIAGNOSES TO BIOLOGICAL MARKERS. THAT IS A BIG SHIFT FOR LAW. WHEN NEURAL IMAGING IS SHOWING UP IN THE COURTROOM. MODALITIES WERE DEVELOPED AND KNOW NIH FUNDED RESEARCHERS SAY WONDERING HOW THIS PLAY OUT IN CONTEST IN MONTANA, WE'LL SEE CASES LIKE THAT THAT ALREADY ARE. LET ME THROW BUNCH OF QUESTIONS AT YOU THAT IS RATIONAL, GOVERNANCE, COURTROOMS LEGISLATURE AND DEEP LEGAL CONCEPTS THERE'S ONE WAY TO ORGANIZE. GOVERNANCE REGULATION IS FAMILIAR SO I'LL START WITH THOSE. INTELLECTUAL PROPERTY, DATA PRIVACY, DATA SHARING INFORMED CONSENT, PROTECTION OF RESEARCH SUBJECTS. DISABILITY DETERMINATIONS AND PROTECTION. THAT'S WHERE A BIOMARKER BASED VIEW OF MENTAL DISORDERS FUNDAMENTALLY SHIFTS OUR NOTION OF DISABILITY WHERE YOU HAVE TO SHOW YOUR SYMPTOM. THAT'S HOW WE DEFINE IT. RETURN RESULTS FINDINGS. THAT'S COME UP AND IS LAW. INSURANCE REIMBURSEMENT, FDA PATHWAYS TO MARKET FOR NEUROTECHNOLOGY NEUROPHARMACOLOGY, STANDARDS OF CARE, REASONABLE STANDARDS OF CARE CLINICAL PRACTICE, AND MORE. AND MUCH MORE. WHAT ABOUT IN COURTROOM? WE HAVE SEEN CASES WHERE IT'S BEEN PROFFERED BRAIN BASED LIE DETECTION. MAYBE MORE PROMISE IN VARIOUS FORMS OF MEMORY DETECTION. UNDERSTANDING AND PREDICTING CRIMINAL BEHAVIOR AND MENTAL STATES. WHAT ABOUT ADMISSIBILITY JURIES SEE FROM THIS DATA BEING PRODUCED? IN UNDERSTANDING PAIN AND SUFFERING. HOW TO UNDERSTAND TRAUMA. WITH MY COLLEAGUES AT NGA WE ARE MONITORING TRAUMA AT THE BORDER, YOU KNOW CHUCK NELSON WILL TALK ABOUT THE NEUROSCIENCE OF TRAUMA. EVERY STORY AT THAT BORDER IS THE BRAIN STORY. AND WHEN THOSE CASES ARE LITIGATED WHEN SOMEONE WANTS TO COME INTO OUR COUNTRY AND ARGUE ASYLUM, THEY'RE PRESENTING EVIDENCE OF TRAUMA, WON'T BE LONG THAT'S HAPPENING WHERE THAT CONVERSATION IS HAPPENING IN COURTROOM AND POLICY CIRCLES IS INVOLVING NEUROSCIENCE. JUDGES AND ADDITIONAL DECISION MAKING, BRAIN INJURY AND CONCUSSION, AND MUCH MORE. IN LEGISLATURE, BIG THING IS FUNDING, HOW TO SHAPE THAT, BUT THERE ARE OTHER THINGS THAT LEGISLATURES DO THAT RELY IMPLICITLY OR EXPLICITLY ON BRAIN SCIENCE, DEFINING BRAIN DEPTH, DEFINING LIGHT, OVER TEN STATES PAIN CAPABLE FETAL LAW AND THEY TALK ABOUT THE PAIN MAKERS AND THEIR ARGUMENT IS THAT WE OUGHT TO CHANGE THE LINE AS TO WHEN A WOMAN CAN MAKE A DECISION ABOUT TERMINATEING A PREGNANCY BASED ON ARGUMENT OF BRAIN SCIENCE, USE TON RIGHT AND LEFT AND JUVENILE JUSTICE. DEFINING WHAT'S MENTAL AND PHYSICAL PROVIDING RIGHTS BASED ON NEURAL DEVELOPMENT, WHAT AGE DO YOU GET TO DO SOMETHING. AND TAKING AWAY RIGHTS AT SOME POINT, SOON AS SOMEONE GETS DIAGNOSED WITH ALWAYS CHIMERS SHOULD WE REVOKE THEIR DRIVER'S LICENSE. THAT'S A LEGISLATIVE BRAIN QUESTION. SOLITARY CONFINEMENT, BRAIN INJURED POPULATION AND MUCH MORE. THERE'S A LOT OF DEEP CONCEPTS. THIS IS WHERE I CAN ASK THE QUESTIONS. OF COURSE I CAN'T ANSWER THESE, BUT HOW SHOULD THE LAW RESPOND? TO THIS ASYMPTOMATIC INDIVIDUAL, WHAT IF IT'S A KID? COLLEAGUES CAN DO THIS WITH INCREASING PRECISION. STAKE SPAN OF SIX MONTH OLD AND PREDICT WHETHER OR NOT THEY END UP ON THE AUTISM SPECTRUM. WHAT DO YOU DO? THE LAW REQUIRE SPECIAL EDUCATION? WHAT CONSTITUTE AS DISABILITY? WHAT'S NORMAL? HOW SHOULD GROUP BASED NEUROSCIENCE APPLY TO INDIVIDUAL LEGAL CASES AND HOW DOE WE DEAL WITH FACT HUMAN NEUROSCIENCE IS USING SAMPLES THAT DO NOT LOOK LIKE A LOT OF FOLKS IN THE CRIMINAL JUSTICE SYSTEM. THAT'S A MAJOR PROBLEM. IT'S BEING DISCUSSED NOW, JAMA NEUROLOGY IS TALKING ALZHEIMER'S BIOMARKER FOR AFRICAN AMERICAN POPULATION GIVEN THE DATA SETS THESE THINGS HAVE BEEN GENERATED ON ARE NOT SUFFICIENTLY REPRESENTED. BRAIN DATA PHYSICAL EVIDENCE OR TESTIMONIAL EVIDENCE? A GREAT QUESTION. YOU CAN TAKE YOUR FINGERPRINTS WE CAN'T FORCE YOU THE TALK. TAKE THE BRAIN DATA. IS THAT TESTIMONIAL? OR IS THAT A BRAIN FINGERPRINT. TO BE DETERMINED. HOW MUCH CHOICE DOES ADDICT HAVE? THIS IS SHOWING UP, DO WE HAVE FREE ARE? LET ME ANSWER THAT. DOES IT MATTER FOR LAW. WHAT IS THIS RELATIONSHIP MIND BRAIN AND BEHAVIOR? BRAIN 2025 ARE ASKING THESE QUESTIONS. ALL SORTS OF AS I -- AMAZING WAYS. TWO YEARS AGO ALMOST MOST OF THE -- THE PUBLICATION SHOWED DIDN'T EVEN EXIST YET. IT'S WILD. THAT'S HOW FAST SCIENCE IS MOVING. THE LAW AND PATH AND FUTURE OF NEURAL LAW, AND RELATIONSHIP WITH LAW NEUROSCIENCE IS REALLY INTERESTING. LAW DOESN'T MOVE QUICKLY. I WILL GIVE YOU A QUOTE BACK CENTURY TO ONE OF THE GREATEST JURISTS OF ALL TIME, OLIVER WENDALL HOLMES, HE'S INFLUENTIAL PATH OF LAW AND USHERED IN LEGAL REALISM AND HIS BASIC ARGUMENT IS CAPTURED IN THESE TWO QUOTE. IT'S REVOLUNTEERING TO HAVE NO BETTER REASON FOR RULE OF LAW THAN SO LAY DOWN THE TIME OF REPORT. THAT'S HOW PRECEDENT WORKS. IF YOU HAVE THE SAME FACTS AND SAME LAW IN 2018, WHAT DO YOU DO? WHAT DID WE DO IN 2017, WE'LL DO THE SAME THING. WHAT ABOUT 2017? WHAT ABOUT 2016? AND KEEP GOING BACK AND BACK AND POINTED OUT YOU GO BACK TO FOUNDING OF AMERICAN LAW WHICH HAS ITS ROOTS IN ENGLISH LAW. OUR UNDERSTANDING OF THE BRAIN LOOKED DIFFERENT THAN HOLMES WAS AWARE OF THIS AS WELL. HE WAS THINKING MORE ECONOMIC SCIENCE BUT IT'S MORE REVOLTING IF THE GROUNDS UPON WHICH THE LAW WAS LAID DOWN VANISHED LONG SINCE. SOMETHING THAT'S HAPPENING AND INCREASINGLY HAPPENING IS ASSUMPTIONS WE HAVE ABOUT WHY WE MAKE DECISION, HOW INFLUENCES ARE IN THE LEGAL SYSTEM, EFFECTIVE WAY WE DECIDE AN ACT ARE CHANGING AND THEY CHANGE AGAIN AND AGAIN AND AGAIN. LAW AT SOME POINT HAS TO WAKE UP AND SAY SOME LEGAL DON'T HOLD UP ANY MORE. YOU HAVE NO IDEA WHEN THAT WILL HAPPEN OR EXACTLY HOW IT WILL HAPPEN. BUT YOU SHOULD KNOW THERE ARE LITTLE CADRES OF FOLKS IN UNIVERSITIES, INSTITUTES AND CENTERS TRYING TO THINK IN ADVANCE ABOUT THIS STUFF. I APPRECIATE BEING PART OF THAT CONVERSATION. REMEMBER, NEUROSCIENCE HAS TRANSFORMATIVE POTENTIAL IF USED PROPERLY. IT CAN GO DOWN A BAD STREAK. IF NOT, THE FIELD OF NEURAL LAW EMERGED SO WE'RE AROUND, WE LOVE TO TALK WITH YOU. AND WE REALLY NEED MORE DIALOGUE. HERE IS ONE QUESTION I THOUGHT WAS USEFUL FOR DISCUSSION. FROM NOT ALL NEURAL LAW ISSUES NEURAL ETHICS ISSUES THERE'S OPEN LAW, I DON'T THINK THAT LANGUAGE MATTERS MUCH BUT THERE ARE THINGS THAT OCCUR TO BOTH AND OF THOSE THERE ARE PROBABLY THINGS CORE TO BRAIN 2025 AND MOVING FORWARD I THINK IT'S WORTHYING ABOUT WHICH ISSUES DO WE THINK ARE MOST REDSING. WE HAVE TO DO A LITTLE TEE LEE ON ANTICIPATORY GOVERNANCE AND RESPONSIBLE ALREADY SEARCH HAS TO DO ANTICIPATORY WORK, THAT'S IT ON FUTURE OF NEURAL LAW. TO BE DETERMINED. [APPLAUSE] >> THANK YOU, FRANCIS. PEOPLE CAN RAISE HANDS. LET ME HOE I WAS GOING TO START. YOU GO AHEAD. YOUR HAND WAS RAISED. >> I WANT TO CHALLENGE YOU A LITTLE BIT HOW IS THIS SO DIFFERENT I CAN ANTICIPATE WHAT YOU MIGHT SAY, HOW IS THIS DIFFERENT FROM THE WORRIES ABOUT WHAT IS THE GENETIC GENOMIC REVOLUTION MEAN FOR LAW? >> GREAT QUESTION. HOW IS THIS DIFFERENT WHETHER GENETICS FUND MENTALLY CHANGE LAW, IN SOME WAYS THEY ARE SIMILAR. I THINK THE BIOSCIENCES CAPTURES THAT. T I THINK USES THAT PHRASE, CAPTURE THIS FLUSTER OF RELATED ADVANCES IN THE BIOSCIENCES, INCLUDING BUT NOT LIMITEDDED TO NEUROSCIENCE,. TO THE EXTEN -- THAT'S ONE ANSWER. THEY ARE RELATED. I DO THINK THAT GENETICS IS FUNDAMENTALLY CHALLENGING THE EXISTING GOVERNANCE PARADIGM, IT WILL CONTINUE TO. ONE OF THE DIFFERENCES BETWEEN THE NEUROSCIENCE AND GENETICS IS THAT THE GENETICS IS BY AND LARGE NOT CHANGE SOME EXTENT THAT IS AN INDIVIDUAL YOU ARE BORN WITH YOUR JANUARIES, THE BRAIN IS CONSTANTLY CHANGING AND THE LEGAL INTERVENTION THAT WE HAVE ARE GOING TO DIRECTLY AFFECT -- WE HAVE REAL DECISIONS WE GET TO MAKE HOW TO CHANGE YOUR BRAIN. WE HAVE A MUCH MORE LIMITED SET HOW TO CHANGE YOUR VIEW AND I THINK THAT THAT MEANS THAT THE QUESTIONS WE HAVE TO DECIDE ARE A LITTLE BIT DIFFERENT. THE THIRD IS THAT THE TYPE OF EVIDENCE BEING INTRODUCED IS SHOWING. WE ARE LEARNING MORE AND MORE ABOUT YOU. WE CAN SAY MORE COMPLEXITY AND WE CAN TALK ABOUT THAT. BUT TYPE OF EVIDENCE THAT A JURY WILL SEE I THINK NEUROSCIENCE IS CHANGING EVEN MORE. THAT MAY BE OPEN FOR DEBATE. THE POINT IS THEY'RE RELATED AND WE HAVE TO THINK ABOUT THESE THINGS AND WE CAN LEARN FROM LAW AND GENETICS. >> >> I WAS GOING TO ASK A SIMILAR QUESTION BUT BEFORE I DO, I THINK WE'RE -- THE SLIDE IS MEANT TO ENCOURAGE PEOPLE WHO ARE WATCHING VIA THE WEBCAST TO TO EMAIL ADDRESS ON THE SLIDE. WE CAN ASK, WE'LL DO THAT FOR THE PANEL SO DON'T ASK FOR FRANCIS. I WANT TO FOLLOW ON TO WHAT LAURA ASKED YOU. MAYBE JUST TERMINOLOGY THING. DO YOU SEE NEURAL LAW AS DISTINCT AREA OF LAW BUT DO YOU THINK BRINGING NEUROSCIENCE TO LAW TO FOLLOW ON TO THE HOLMES QUOTE YOU SHOWED, IT'S MORE TOOLS TO HELP US DO A BETTER JOB FIGURING HOW TO APPLY THE LAW, WHICH IS THE ARGUMENT ABOUT GENETICS. WE DON'T SAY GENETICS LAW. WE TALK ABOUT GENETICS AS IS APPLIED TO THE LAW AND IMPLICATIONS FOR APPLICATION TO THE LAW. WE DON'T TALK ABOUT IT AS DISTINCT AREA OF LAW. >> IT IS DISTINCT AREA OF LAW, THE REASON THERE'S LEGAL DOCTRINES THAT ARE TIED UP IN BASIC ASSUMPTIONS, REALLY NUMBER OF ASSUMPTIONS BACK TO MIND BODY. SO ALL OVER PLACE IN LAW WHETHER INSURANCE LAW OR COURT LAW ORAL LAW, WE TREAT MENTAL THINGS AS FUNDAMENTALLY DIFFERENT FROM PHYSICAL. THIS DISTINCTION -- THIS CANNOT WITHSTAND TOE BRAIN 2025, I THINK THERE ARE ALSO A NUMBER OF OTHER ASSUMPTIONS YOU MAKE THAT ARE JUST REALLY FOR NUMBER OF CRIMINAL LAW AND NOT JUST CRIMINAL LAW, TORT LAW, CONTRACT LAW CAPACITY. THEORETICAL LEVEL OF OUR CHALLENGE IN WAYS IN ONE WAY THEY'RE SIMILAR. BRINGING ABOUT BETTER OUTCOMES IN THE WORLD, BUT I THINK IN SOME OTHER WAYS THERE ARE SOME. IT'S NOT EITHER OR. BOTH OF THESE, THE LAW WOULD BE BETTER IN UNDERSTANDING BROADLY LAW AND SCIENCE, INCLUDING ALL THE RELATED BEHAVIORAL SCIENCE, COGNITIVE PSYCHOLOGY AND SOCIAL PSYCHOLOGY AND LIKE. SO I THINK ALONG BIOSCIENCES (INAUDIBLE). >> ONE MORE WORD ABOUT THAT, YESTERDAY IN THE NEW YORK TIMES RAN A STORY ABOUT DNA SEQUENCING BOXES IN EVERY POLICE STATION AROUND CORNER SO WE CAN IDENTIFY CRIMINALS VIA GENETIC INFORMATION. WHICH ISN'T INVOKED AS A NEW AREA OF LAW BUT RATHER NEW WAY TO FIND BAD GUYS. SO MAYBE THAT'S WHERE NEUROSCIENCE HEADS AS WELL. I UNDERSTAND YOUR -- IS INTERESTING ONE WHETHER WE ARE ENTERING A PHASE TO RETHINK LAW IN LIGHT OF NEUROSCIENCE OR WHETHER THESE ARE TOOLS THAT HELP BETTER APPLY. >> I THINK THE OTHER DISTINCTION WITH THAT LAW REQUIRES ENTIRE HISTORY OF LAW, SAID TO USE TYPES OF EVIDENCE, THINGS PEOPLE SAY, CAREFUL OBSERVATION. FOR UNDERSTAND OF MINE WHICH BY THE WAY HOW CLINICAL PSYCHOLOGY WORKS. MOST ADDICTS GET -- BRAIN 2025, NOT JUST -- USHERING IN AN ERA OF -- WE MAY SEEK DIVERGENT BETWEEN WHAT SOMEONE SAYS I FEEL FINE AND HOW WE LABEL. THAT IS A FUNDAMENTAL SHIFT, I THINK USHERED IN PRIMARILY BY NEUROSCIENCE AND RELATED FIELD THAT WILL CHALLENGE CLINICAL PRACTICE AND LAW, HOW DO WE HANDLE THAT. RELY ON WHAT SOMEONE SAYS. HOW DO WE KNOW WHETHER SOMEONE FEELING PAIN OR NOT. LAW HAS GIVEN RELIANCE ON WHAT PEOPLE SELF-REPORT AND WHAT WE OBSERVE. WE GOT THIS NEW DATA WILL GET MURKY. >> EVERYBODY PLEASE TAKE YOUR PLACE AT THE TABLE HERE AND WE'LL OPEN UP FOR PANEL DISCUSSION TO INCLUDE MORE TOPIC OF NEURAL LAW AND ANYTHING ELSE WE HEARD FRY FIVE SPEAKERS AS PART OF THIS PROGRAM. Q. WE HAVE A QUESTION FROM DR. ADRIENNE FAIR HALL, MEMBER OF THE SUBGROUP, THIS IS FOR FRANCIS. SHE WOULD LOVE TO HEAR VIEWS ON URGENTLY IMPORTANT ASPECTS OF NEUROSCIENCE RESEARCH GOING FORWARD. >> SURE. LIKE TO HEAR FRANCIS'S VIEWS WHAT ARE THE MOST URGENTLY IMPORTANT ASPECTS OF NEUROSCIENCE RESEARCH. FOR THE LAW. >> I WOULD ECHO WHAT THE PANEL SAID ABOUT GOVERNANCE ASPECTS. WE HAVE SEEPABLE WORDS INFORMED CONCEPT SUSSER DOESN'T MEAN WE CAN BRUSH PAST THOSE. IT MEANS SOMETHING DIFFERENT INFORMED DECISION MAKING. RETURN OF RESULTS, DIFFERENT THAN RESULTS INCLUDE ALL SORTS OF BRAIN DATA THAT'S COMPLICATED SO I THINK THAT WOULD BE ONE THING. IT'S DIFFICULT BUT AT LEAST IT'S IDENTIFIABLE. LET'S REVISIT A VARIETY OF STANDARDS AND PROTOCOLS IN LIGHT OF NEW TECHNOLOGIES. I THINK THE SECOND BIGGEST ONE IS LAW -- SHORT TERM AND LONG TERM. IN SHORT TERM, BETTER UNDERSTANDING MENTAL DISORDER AND DISEASE. NOT JUST -- THAT'S A TOUGH CALL. LIKE SOLVE IT BUT AT PRESENT UNFORTUNATELY IN MY VIEW CRIMINAL JUSTICE SYSTEM, NOT SPEAKING TO THE UNITED STATES HERE FOR A MOMENT IS FRONT LINES FOR MANY FOLKS WITH MENTAL HEALTH TREATMENT. GIVEN I DON'T THINK IT OUGHT TO BE THAT WAY, BUT IT IS THAT WAY. GIVEN THAT WAY THESE THINGS ARE TIED UP. THIRD, LONG TERM I HOPE THAT NIH AND OTHER FEDERAL AGENCIES, ALSO THE STATE LEVEL BEGIN TO SEE THEIR CONNECTIONS. LARGER NIH DOJ COLLABORATION. THAT SEEMS NATURAL. I KNOW IT'S HAPPENING WITH DOE. LOOK AT EDUCATIONAL NEUROSCIENCE. THAT'S MORE SYSTEMIC, IT WILL TAKE LONGER. IMMEDIATELY I THINK NIH IS DOING THE ALREADY WHICH IS NEW TECHNOLOGY, LET'S MAKE SURE WE'RE IMPLEMENTING IT APPROPRIATELY. (OFF MIC) >> YOU'LL REPEAT IT. I GUESS THAT'S TO EVERYBODY ON THE PANEL, SAY MORE ABOUT THE CONCEPT OF FREE WILL, WHAT WAS LAST PART OF THAT? >> WHO WAS THE ARBITER OF THAT DEFINITION? >> THIS IS RELATED. I WOULD LOVE TO COME BACK TO SOME OF THE DATA, KAREN, YOU SHOWED RESULTS. AND DISTINCTION YOU WERE MAKING BETWEEN CHANGES IN PERSONALITY AND CHANGES FOR ME I' NOT AN EXPERT SO LOVE TO HEAR PEOPLE OPINE BUT DESCRIBE CHANGES IN PERSONALITY I DIDN'T SEE HOW THOSE CHANGES IN PERSONALITY (INAUDIBLE). IDENTITY TO ME MEANS YOU'RE A DIFFERENT PERSON, NOT THE SAME PERSON WHO FEELS BETTER ABOUT THEMSELVES OR THE SAME PERSON WHOSE SPOUSE DOESN'T LIKE THEM AS MUCH AS THEY USED TO BECAUSE THEY CHANGE THEIR HABITS OR SOMETHING. IDENTITY CHANGE IS SOMETHING MORE FUNDAMENTAL AND DIFFERENT. HOW DO WE KNOW. WHEN CHANGES IN PERSONALITY HAVE (INAUDIBLE) IS THERE AN ANSWER TO THAT QUESTION? >> I'VE THE QUICK EASY ANSWER. GLAD YOU POINTED THAT OUT, IT IS SOMETHING ARE NOT TERMS THAT YOU HAVE NECESSARILY HAVE SHARED MEANING OF. SIMILARLY OPERATIONAL TO DO RESEARCH, HOW TO RESEARCH FREE WILL. (INAUDIBLE) LET'S RESEARCH GENDER, RESEARCH GENRE AND YOU'RE ASKING THE WRONG QUESTION, (INAUDIBLE). SO IN THE SAME WAY, IF YOU ARE ASKING HAVE I FOUND FREE WILL (INAUDIBLE) WHOLE HEARTED OPERATIONALIZE IMPLEMENT YOU MAY NOT REALLY CLEARING THE HURDLE. BUT AS FAR AS BEING CLINICALLY, IT IS CLINICAL PSYCHIATRIC DEFINITION THAT IS RELEVANT BUT THERE E ALSO THE PATIENT EXPERIENCE OF (INAUDIBLE) IDENTITY THROUGH SEVERAL STUDIES AND ONE THAT I FOUND TO BE VERY GOOD REVIEW RECENTLY FROM -- HITNY OF IDENTITY AND WHO CAN DEFINE IT. MAYBE AS VALUABLE AS THEY ARE RELEVANT TO THE EXPERIENCE AND INTERVENTION. WHAT WE GET THE EXPERIENCE OF THOSE GETTING INTERVENTION THAT MIGHT -- FREE WILL. THOSE WITNESS TO IT. HOW MUCH CHANGING FREE WILL. UNDER WHATEVER TERMS RELEVANT (INAUDIBLE). THERE'S CERTAINLY IN SHORT THERE ARE NO CLEAR DEFINITIONS. WE SHOULD DECIDE WHICH ARE MEANINGFUL, WHO GETS TO BE THE ARBITER AND THIS IS ALSO (INAUDIBLE). QUESTION WE CAN DECIDE FROM. FROM (INAUDIBLE). (OFF MIC) >> I HAVE KIND OF A META COMMENT ABOUT A LOT OF THIS, WHICH IS I THINK ONE THING WE NEED TO NOT LOSE SIGHT OF IN THESE DISCUSSIONS IS HUMILITY ABOUT THE SCIENTIFIC PROCESS ITSELF WHICH IS ACTUALLY IF I HAD PLANNED MY TALK BETTER AND GOT TO SOME OF THE COMMENTS INVESTIGATORS WE INTERVIEWED, AN AWARENESS THAT THE RESEARCH WE ARE DOING IS STILL NOT GOING TO DEFINITIVELY ANSWER THESE QUESTIONS SO I THINK NEURAL LAW NEEDS THAT SAME HUMILITY AND THAT MANY OF THESE QUESTIONS ARE GOING TO UNFOLD OVER TIME AND ARE GOING TO NEED TO BE SUBJECT TO HOPEFULLY INTENSE PUBLIC DEBATE. I SAY HOPEFULLY PARTLY BECAUSE REREADING BARRETT KENDALL'S TALK ABOUT LESSONS LEARNED FROM THIRD RIEK AND THE -- NOW IT'S FINE TO EXPERIMENT ON PEOPLE BECAUSE IT'S IN THE SERVICE OF THIS WONDERFUL BENEFIT. SO I JUST REINVIGORATED ABOUT THAT. THAT WE NOT FALL INTO A E SE ELITISM ABOUT NEUROSCIENCE EASY ELITISM TO NEUROSCIENCE NEUROLAW, WE HAVE A TENDENCY TO, YOU ARE HEARD HISTORIAN WRITING ABOUT THIS, ONE OF HIS CONCERNS IS BIOTECHNOLOGY AND INFORMATION TECHNOLOGY, ONE OF THE CONCERNS WE END UP SPLITTING INTO THIS INFORMATIONAL ELITES AND BIOTECH ELITE. IF YOU'RE THE ONLY -- ONLY SOME OF US HAVE ACCESS TO BRAIN IMPLANTS TO ENHANCE OUR ABILITIES, ET CETERA, ET CETERA. SO THAT'S AN OVERARCHING META WORRY THAT I HAVE AND MY ANSWER IS TO IT IS HUMILITY. >> LIKE TO FOLLOW-UP BECAUSE I LIKE THAT POINT ABOUT HUMILITY AND EVIL, UNCHALLENGED ASSUMPTIONS, THAT'S THE IMPORTANT WORK, WHAT ARE FULL CONCEPTIONS AND WHAT ARE TYPICAL GENERAL CONCEPTIONS ABOUT FREE WILL. WHERE THEY GET THEM FROM. AND WHAT ARE SCIENTIST CONCEPTIONS OF FREE WILL. THEN HOW ARE WE GOING TO RECONCILE THESE AS THEY ENTER ACROSS THE LAB INTO THE -- DOMAIN AND VARIOUS APPLICATIONS. >> WHO IS WE? EVEN SOMETHING LIKE THAT, HOW WE GOING TO RECONCILE THESE. I DON'T THINK THERE'S A WE. >> THERE'S NOT A SINGULAR WE, GOOD POINT YOU'RE TRYING TO SAY A VARIETY OF -- >> YEAH. ONE OF THE THINGS FOR EXAMPLE, WHEN IT BECOMES INCREASINGLY DIFFICULT OR POLITICALLY INCORRECT TO EXPRESS A DIVERGENT VIEW ABOUT SOMETHING, WE ARE STARTING DOWN THAT SLOPE. SCIENTISTS DON'T LIKE TO THINK THEY ARE IN THAT THEY HAVE THAT TENDENCY BUT THEY DO. THE EUTHANASIA DEBATE, IN EUROPE, BE AN EXAMPLE. IT'S NOT THAT RELEVANT TO THIS. SOMETIMES A AGAIN ASSUMPTION THAT WE KNOW WHAT'S RIGHT. SETTLED SCIENCE, THAT KIND OF THING. >> THIS IS ABOUT NEUROETHICS YOU BROUGHT IN LEGAL AREAS. SO THE QUESTION IS, THIS IS ABOUT TECHNOLOGY DEVELOPMENT IN THIS AREA. THE BRAIN INITIATIVE. THERE ISSUES AROUND IP OR OTHER AREAS OF THE LAW WE SHOULD BE CONCERNED ABOUT ADS THIS PROGRAM MOVES FORWARD? >> I DO WANT TO QUICK NOTE THERE IS LOTS OF INK SPILLED AND CONTINUES TO BE SPILLED ON THESE QUESTIONS BY FREE WILL VERY SMART, NEUROSCIENCE AND LAW AND I RECOMMEND CHECKING IT OUT AND THE NEED FOR HUMILIY IS VERY IMPORTANT AND MUCH OF NEUROSCIENCE SAYING KNOCKER NOT YET ON THIS TYPE OF THING. U THINK RESPONDING TO YOUR QUESTION ABOUT TECHNOLOGY AND TRANSFER, ONE DOES ECHO HUMILITY , ANTICIPATING WHERE TECHNOLOGY WILL GO, BOTH RESEARCH AND CLINICAL USE DIRECT TO CONSUMER. NIH NEUROETHICS ALREADY FUNDED ESPECIALLY REALM OF EG BASED AN NEURAL STIMULATION WORK DIRECT TO CONSUMER NEUROETHICS CONCERNS. I THINK ANTICIPATING WHERE THE NEW TECHNOLOGY MIGHT HEAD IS IMPORTANT. THAT'S ONE THING. I'M PUTTING ALL THE TRADITIONAL CONCERNS ABOUT UNIVERSITY OF RESEARCH TO FIGURE OUT. THE DIRECT TO CONSUMER CAN LEARN A LOT, BACK TO YOUR POINT WHAT IS HAPPENING DIRECT TO CONSUMER GENETICS. TALK TO ME ABOUT PATIENTS ARE SHOWING UP IN DOCTOR'S OFFICES, AND DOCTORS -- THERE IS A GOOD CHANCE THAT WILL HAPPEN. UNIVERSITY OF MINNESOTA HIGHLY PORTABLE TO SUPPLEMENT EMBED OURSELVES, AND ELSEWHERE PORTAL NEUROSCIENCE OUT OF RESEARCH FACILITY AND OUT OF THE HOSPITAL. THAT HAS TREMENDOUS VALUE COGNITIVE NEUROSCIENCE STUDYING MOTOR WITH ALL SORTS OF THINGS BUT SUDDENLY VISITING OUR IRB AND CONSENT AND RETURN RESEARCH PROTOCOL YOU HAVE YOUR GRAD STUDENTS OUT IN RURAL PLACE OR ANOTHER COUNTRY EVERY DAY THEY TRAVEL TO DIFFERENT PLACE WHICH IS AWESOME FOR RESEARCH BUT SUDDENLY WE'RE IN -- AND COMBINE THAT WITH THE FACT THAT NOW STAN ISN'T JUST LOOKING FOR A BIG LESION, IT'S -- INCIDENTAL FINDINGS MIGHT INCLUDE FUNCTIONAL DIFFERENCES THAT SUGGEST YOU'RE NOW WHAT'S BEING PROMOTED AS ALZHEIMER'S SPECTRUM. SO I THINK THOSE SORTS OF THINGS ARE REALLY GOING TO BE IMPORTANT FROM PURELY LEGAL PERSPECTIVE TO PROTECT YOURSELF AND DOING THE RIGHT THINGS FROM DEEPER POINT DOING RESEARCH THE RIGHT WAY, GETTING THE BENEFITS OF THAT NEW DATA, DOING IT RESPONSIBLY AND ETHICALLY. I CAN SEE THAT HAPPENING WITH THESE OTHER THINGS. >> >> I WANT TO ASK THE PANEL, TOUCHES ON SEVERAL TALKS, THERE WASN'T EXPLICITLY DISCUSSED, ONE OF THE BRAIN 2025 REPORT BASICALLY RESEARCH HAS DONE AT NIH THESE DAYS IS THAT YOU WANT TO MAKE ALL YOUR DATA PUBLIC. YOU WANT TO GET YOUR GENETIC INFORMATION AND GET ALL YOUR ELECTROPHYSIOLOGICAL TRACE,, ALL THESE THINGS IN PUBLIC DOMAIN SO THAT OTHER OTHERS CAN STUDY AND INCREASE KNOWLEDGE FROM THAT DATA. BECAUSE POTENTIAL UNINTENDED CONSEQUENCES BECAUSE OF POTENTIAL MISUSE OF THE DATA, IS THERE EVER A RATIONALE NOT MAKING DATA PUBLIC? >> SIMPLE ANSWER IS YES. I THINK IT'S A GREAT QUESTION AND GREAT -- A GREAT AREA, WE MAKE ONE PLAIN, SHARING DATA IS ETHICALLY GOOD. SOME EXTENT THAT'S CORRECT. BUT WE HAVEN'T DONE ENOUGH ABOUT DEFINING WHERE THE LIMITS OF THAT ARE. AND WHAT AS YOU RAISED SEVERAL TIMES THIS MORNING UNINTENDED CONSEQUENCES OF DOING THAT AND WHETHER THERE'S SOMETHING DIFFERENT ABOUT SHARING NEUROIMAGING DATA AND SHARING WHERE I SHOP FOR GROCERIES DATA. SO THOSE KINDS OF DETAILS I THINK MATTER IN TERMS OF ANSWERING THE QUESTION YOU ASKED AND THAT IS ARE THERE KIND OF DATA OR LIMITS ON SHARING DATA THAT WE SHOULD THINK ABOUT. >> I WOULD LIKE TO ADD TO THAT, NOT JUST SHARING DATA, IT'S ALSO SHARING METHODOLOGIES. SO I TALKED TO SOME RESEARCHERS AND ASKED ARE THERE ANYTHING YOU DO NOT WANT TO DO? FOR YOU AS A NO GO. AREN'T YOU AWARE WHEN YOU PUBLISH YOUR METHOD UP TO THIS POINT OTHERS CAN READ IT AND DO EXACTLY WHAT YOU ARE NOT WILLING TO DO. THINK LONG AND HARD ABOUT THAT. NOT JUST DATA SHARING BUT HOW MUCH I WANT TO SHARE ABOUT MY METHODOLOGY. >> THE FLIP SIDE IS WE HAVE SOME NOT WITH NEURAL DATA BUT BEHAVIORAL DATA CONCERNED IS ABOUT BLACK BOX ALGORITHMS, PROBLEMATIC BIAS. DATA PRIVACY STAKEHOLDERS IS PORTABLE DATA, NUMBER ONE CONCERN, BECAUSE IT'S -- I SHOULD HAVE MENTIONED THIS BEFORE, I FORGOT, INCREASING USE OF ALGORITHMS AND ADVANCE METHODOLOGIES FOR ANALYZING THE DATA I THINK IS CERTAINLY PRODUCT OF BRAIN 2025 AND RAISE ISSUES. IF YOU ASK ME NOW AM I MORE CONCERNED IS ABOUT SOMEONE HAVING BROWSER HISTORY THE LAST YEAR OR TAKING EVERY TYPE OF MRI SCAN I WANT THEM TO TAKE MY MRI SCANS I DON'T WANT MY BROWSER BUT IT MAY SOON BE THE CASE BASED ON ADVANCED IMAGING AND THE TYPES OF THINGS THAT DATA CAN BE EXTRACTED FROM, THAT IMAGING, THAT I MAY CHANGE THAT OR BE CONCERNED ABOUT BOTH. AND I THINK YOU'RE RIGHT ABOUT BALANCING HOW DO YOU INNOVATE BECAUSE YOU NEED TONS OF DATA BUT ON THE OTHER HAND (INAUDIBLE). >> THANK YOU TO THE PANEL. JIM AND I WILL SPEAK ON HIS BEHALF. THANK YOU FOR THE PRESENTATIONS AND YOUR PATIENCE. THANK YOU ALL FOR BEING HERE. THANK YOU FOR ATTENDING ONLINE. [APPLAUSE]