Charis Thompson, PhD presenting at Nobel Conference 53

Charis Thompson, PhD presenting at Nobel Conference 53


STAGE.
[ APPLAUSE ]>>I HAVE TO LOWER THAT BECAUSE
MY MOUTH ISN’T NEAR MY FOREHEAD YET.
GOOD AFTERNOON, DISTINGUISHED GUESTS, LADIES AND GENTLEMEN,
AND ESPECIALLY STUDENTS. I WON’T REPLICATE WHAT’S IN THE
PROGRAM, THAT’S PRETTY CLEAR. SHE HAS AN AMAZING BACKGROUND,
DR. THOMPSON DOES, AND JUST TO FILL IN A FEW LITTLE BLANKS FOR
YOU, IN ADDITION TO BEING THE CHANCELLOR’S PROFESSOR AND CHAIR
OF THE DEPARTMENT OF GENDER AND WOMEN’S STUDIES AT UNIVERSITY
OF CALIFORNIA, SHE’S ALSO THE DIRECTOR OF THE CENTER FOR
SCIENCE, TECHNOLOGY AND MEDICINE IN SOCIETY, THE DIRECTOR OF THE
LEE KA SHING PROGRAM AT BERKELEY AND ALSO A PROFESSOR,
DEPARTMENT OF SOCIOLOGY, LONDON SCHOOL OF ECONOMICS AND
POLITICAL SCIENCE. SHE IS A TRAINED SCIENTIST IN
HER UNDERGRADUATE AND CONTINUING INTEREST THROUGHOUT HER
GRADUATE CAREER. SHE HAS BEEN AN ASSISTANT
PROFESSOR AT THE UNIVERSITY OF ILLINOIS URBANA CHAMPAIGN, AT
HARVARD UNIVERSITY, AND AS I SAID, SHE’S NOW A PROFESSOR AT
UNIVERSITY OF CALIFORNIA BERKELEY.
SHE HAS VISITED INSTITUTIONS WORLDWIDE AND SHE’S THE AUTHOR
OF BOOKS, MAKING PARENTS, THE ONTOLOGICAL CHOREOGRAPHY OF
REPRODUCTIVE TECHNOLOGIES AND GOOD SCIENCE, THE ETHICAL
CHOREOGRAPHY OF STEM CELL RESEARCH.
IN ADDITION TO NUMEROUS ARTICLES ON SCIENCE, SCIENTIFIC
RESEARCH, BIOMEDICINE, BIODIVERSITY, SOCIAL JUSTICE AND
GOVERNMENT. HER 2005 BOOK, MAKING PARENTS,
WHICH WON THE 2007 RACHEL CARSON PRIZE FROM THE SOCIETY FOR THE
STUDY — THE SOCIAL STUDY OF SCIENCE, INTRODUCED THE CONCEPT
OF ONTOLOGICAL CHOREOGRAPHY IN WHICH SHE LAYS OUT THE DIFFERENT
ORDER OF THINGS SUCH AS EMOTIONS, POLITICS,
TECHNOLOGIES, AND CLINICAL MEASUREMENTS AND HOW THEY WORK
TOGETHER IN MEDICINE, AND FOR HER CONCEPT OF PROMISE MISS
STORY CAPITAL AND BIO — PROMISSORY CAPITAL AND BIOUNTIL
MODE OF PRODUCTION. SHE SERVES ON THE STEM CELL
OVERSIGHT COMMITTEE AND PREVIOUSLY SERVED ON THE
CHILDREN’S HOSPITAL OF OAKLAND RESEARCH INSTITUTE, STEM CELL
RESEARCH OVERSIGHT COMMITTEE. SHE’S CURRENTLY A MEMBER OF A
BOOK THAT HAS ALREADY BEEN DISCUSSED HERE SEVERAL TIMES,
THE NOBEL COUNCIL ON BIOETHICS AND THE WORKING GROUP ON GENOME
EDITING. SHE HAS BEEN A PANELIST AT
SEVERAL INTERNATIONAL MEETINGS AND SHE’S A FREQUENT CONTRIBUTOR
TO THE PUBLIC DISCOURSE AND POLICY DISCUSSIONS OF BIOTECH
NOLTION, THE ROLE OF SCIENCE IN SOCIETY, AND MOST RECENTLY,
CRISPR TECHNOLOGY AND HUMAN GENETICS ENGINEERING AS WELL AS
SYSTEMS OF STRATIFICATION THAT LIMIT TECHNOLOGY ACCESS.
HER WORK REACHES ACROSS DISCIPLINARY BOUNDARIES AND HAS
FOUND A BROAD AUDIENCE OF ACADEMICS AND NON-ACADEMICS
ALIKE. DR. THOMPSON’S WORK CONTINUES TO
BROADEN THE BIO-POLITICAL PARADIGM BY ASKING ICONIC
QUESTIONS ABOUT THE SOCIAL TRANSFORMATION AND ENTANGLEMENTS
OF THE SOCIAL MATERIAL ENVIRONMENTAL AS WE MOVE FORWARD
WITH NEW AND EVOLVING TECHNOLOGIES.
PLEASE JOIN ME IN WELCOMING DR. THOMPSON.
[ APPLAUSE ]>>THANK YOU.
SO NICE, THANK YOU.
GOSH, GOOD AFTERNOON, AND THANK YOU FOR THAT LOVELY AND VERY
GENEROUS INTRODUCTION. I’D LIKE TO START IN GENERAL,
ACTUALLY, BY THANKING EVERYONE WHO’S MADE THIS CONFERENCE SO
FANTASTIC. THE ORGANIZERS, ESPECIALLY
PROFESSOR HELDKE AND HONG AND PROFESSOR BERGMAN, BUT ALSO THE
OTHER FACULTY, STAFF AND STUDENT MANY, ZONE NORSE AND AUDIENCE
— DONORS AND AUDIENCE MEMBERS
WHO’S INTERVENTIONS HAVE BEEN SO VALUABLE AND ALSO A SPECIAL
THANKS TO MY TEAM. THEY HAVE ATTENDED TO MY EVERY
NEED AND BEEN SO DELIGHTFUL THESE PAST TWO DAYS.
THIS EVENT HAD MODELED THE VERY BEST THAT CAN RESULT FROM A
TERRIFIC ORGANIZATION PUTTING INTO PUBLIC GOOD THE VALUES OF A
LIBERAL ARTS ETHOS AND THE POWER OF MAKING HAPPEN A
CONVERSATION OF VITAL IMPORTANCE TO US TODAY.
I GUESS I SHOULD SAY CONGRATULATIONS TO YOU ALL FOR
THAT, A WONDERFUL UNIVERSITY.
[ APPLAUSE ] UNFORTUNATELY, I CAN’T SEE YOU
BECAUSE OF THE LIGHTS, BUT I’LL IMAGINE PEOPLE.
I TURN NOW TO MY TALK AND I WANT TO BEGIN WITH A STATEMENT OF MY
COMMITMENTS, AND THE REASON I WANT TO SPELL THEM OUT AT THIS
POINT IN THE CONFERENCE IS JUST TO POINT OUT A COUPLE OF THINGS
AND TO MAKE IT CLEAR THAT I DON’T THINK THEY ARE THE ONLY
WAYS TO GO, BUT THEY ARE THE POINT OF VIEW I’M GOING TO BE
SPEAKING FROM. SO A COUPLE OF THINGS WHERE I
STAND. I HAVE A BACKGROUND IN THE LIFE
SCIENCES, INTERNATIONAL FEMINISM AND SCIENCE AND TECHNOLOGY
STUDIES. I’M THEREFORE PREDISPOSED TO
SEEK TO COMBINE THE KNOWLEDGES AND PRACTICES OF EACH AND HOW WE
NAVIGATE SCIENCE AND TECHNOLOGY.
I’M VERY MUCH PRO SCIENCE, VERY MUCH PRO SOCIAL SCIENCE DESPITE
THE DEEP AND LASTING DAMAGE THAT BOTH HAVE PROMULGATED IN THEIR
LONG HISTORIES AND WE FORGET THOSE AT OUR PERIL.
IN MY OPINION, LABELING PEOPLE AS PRO OR ANTI-SCIENCE IS
LIMITING PEOPLE’S VIEWS AND ANTITHETICAL TO HAVING A DEEP
AND RICH CONVERSATION THAT PRODUCES RESULTS.
IT LEADS TO SORTING OUT THE VARIOUS KINDS OF CONCERNS WHERE
APPROPRIATE. IN PARTICULAR, I’M VERY INVESTED
IN ARGUING FOR DIFFERENT MECHANIC FISMS FOR COLLECTING
DATA ON AND REVIEWING THE SOCIAL ISSUES THAT ARISE AND THE
CLINICAL ISSUES THAT ARISE AND TAKING SOCIETY-WIDE PATTERNS OF
DISCRIMINATION, RACISM, SEXISM AND ABLISM AND CLASSISM OFF THE
BACKS OF INDIVIDUAL PATIENTS AND THEIR CLINICIANS.
COMMITMENT NUMBER THREE, I CAN’T EMPHASIZE THIS ENOUGH.
YOU DON’T KNOW HOW YOU’RE GOING TO REACT IN A GIVEN SITUATION
UNLESS YOU’VE BEEN THERE. FOR MANY YEARS OF FIELD WORK AND
AROUND REPRODUCTIVE AND GENETIC TECHNOLOGIES, THERE’S A PROCESS
THAT PEOPLE OFTEN GO THROUGH WHEN THEY’RE DIAGNOSED WITH
SOMETHING AND A VERY TYPICAL ONE AROUND IVF WOULD BE STARTING
OFF BY SAYING WHEN YOU FIND THAT YOU CAN’T AS EASILY GET
PREGNANT AS YOU MIGHT LIKE TO, TAKING —
PERHAPS GOING TO SEE A PHYSICIAN, PERHAPS BEING WILLING
TO TAKE A DRUG TO HELP YOU OVULATE, AND PEOPLE WILL
FREQUENTLY SAY DURING THAT PERIOD, OH, I WOULD NEVER DO IN
VITRO FERTILIZATION. COMES THE TIME WHEN THAT’S THE
ONLY WAY TO GET PREGNANT, VERY, VERY OFTEN THEY RADICALLY CHANGE
THEIR POINT OF VIEW. THE LAST THING I MEAN TO BE
IMPLYING IS THAT PEOPLE ARE HYPOTHETICAL OR THAT THERE’S
ANYTHING WRONG WITH THIS. I THINK THESE THINGS ARE
JOURNEYS. I HAVE ENORMOUS COMPASSION FOR
PEOPLE GOING THROUGH THESE JOURNEYS, BUT JUST THAT —
REMEMBERING THAT YOU DON’T KNOW HOW YOU’RE GOING TO REACT AND
YOUR VIEWS QUITE LIKELY WILL CHANGE WHEN YOU HAVE A
PARTICULAR CONDITIONING QUESTION.
FINALLY, I PERSONALLY BELIEVE THAT CONTEXT IS EVERYTHING AND
SOME OF THE PREVIOUS SPEAKERS HAVE EMPHASIZED THIS.
SO FOR MYSELF, RATHER THAN DRAWING HARD LINES AGAINST
PARTICULAR PROCEDURES, I FIND IT BETTER TO PAY DETAILED
ATTENTION TO WHAT WOULD BE BEST IN A GIVEN SET OF SOCIAL AND
TECHNICAL CIRCUMSTANCES. I REALIZE THIS IS A MINORITY
AMONG BOTH SCIENTISTS AND SOCIAL SCIENTISTS.
FOR EXAMPLE, I’M NOT PREPARED TO SAY WE DO GERMLINE GENOME
EDITING OR SOMATIC GENOME EDITING.
I’M MUCH MORE INTERESTED IN LOOKING AT THE PARTICULAR
CIRCUMSTANCES IN QUESTION, ALTHOUGH I DO GREATLY RESPECT
AND APPRECIATE THE REASONS WHY MANY PEOPLE THINK THAT LINES IN THE SAND ARE IMPORTANT.
OKAY, SO SO MUCH FOR MY COMMITMENTS.
SO I’VE BEEN TASKED WITH ADDRESSING THE HISTORY AND
FUTURE OF REPRODUCTIVE TECHNOLOGIES AND THEIR IMPACT ON
SOCIETY. SO LET ME START WITH PERHAPS ONE
OF THE GREATEST HITS AND AT LEAST SOME WAYS TO THINK ABOUT
THE TOPICS AT HAND. SO AS PROFESSOR HONG POINTED OUT
YESTERDAY WITH HER EXAMPLES FROM ANTIQUITY, A CERTAIN WITH
FERTILITY IS NOT NEW. IT’S EITHER TROPHICALLY NEW IN
TERMS OF STORIES WE TELL OR TEMPORALLY.
ONE PLACE THAT NORTH AMERICAN FERTILITY CLINICS OFTEN BEGIN
THE STORY IS WITH SARAH AND ABRAHAM IN THE BIBLE.
THROUGH THEIR BELIEFS, THEY WERE EVENTUALLY ABLE TO CONCEIVE
DESPITE THEIR ADVANCED AGES, REPUTEDLY 90 AND 100
RESPECTIVELY AT THE TIME OF CONCEPTION AND DESPITE SARAH’S
PREVIOUS INFERTILITY. I DON’T KNOW IF YOU CAN SEE THE
CAPTION AT THE TOP OF THIS CHILDREN’S BOOK HERE, BUT IT
SAYS THAT LEARNING BIBLE STORIES IS FUN.
I DON’T NECESSARILY DISAGREE WITH THAT, BUT I’D LIKE TO DRAW
YOUR ATTENTION TO THE FACT THAT THIS IMAGE FLIES IN THE FACE OF
WHAT MOST PRACTITIONERS WOULD CONSIDER RESPONSIBLE MESSAGING.
FERTILITY DECLINES WITH AGE AND PRECIPITOUSLY DECLINES WITH AGE
IN WOMEN. EVEN EGG FREEZING SHOULD BE DONE
WHEN YOU’RE YOUNG IF IT’S GOING TO HOLD OUT A GOOD CHANCE OF
PRESERVING YOUR FERTILITY. THE POINT HERE IN THIS STORY, IN
THE ABRAHAM AND SARAH STORY, IS MORE THE MIRACLE OF BIRTH IN
THE CONTEXT OF BELIEF, AND THERE ARE MANY, MANY MORE SUCH
STORIES IN THE BIBLE. ISAAC AND REBECCA WHO GAVE BIRTH
TO THE TWINS, ELIZABETH AND ZAKAH RYE YEAH IN LUKE AND SO
ON. IT’S WORTH TAKING A DETOUR JUST
FOR A MINUTE TO THINK ABOUT THE GENDERING OF INFERTILITY
DIAGNOSES. MOST ENGLISH TRANSLATIONS OF THE
BIBLE USE THE EXPRESSION BARREN AND ATTRIBUTE IT TO THE WOMAN.
BARREN IS A HORRIBLE WORD, RIGHT UP WITH SER ERILITY AND OTHER WORDS
INFERTILITY PATIENTS HATE. IT GIVES YOU A GLIMPSE INTO JUST
HOW A WOMAN’S REPRODUCTIVE CAPACITY AND WORTH ARE
ENTANGLED. WHEN YOU GOOGLE BARREN, THIS IS
THE KIND OF PICTURE YOU GET. I DON’T THINK MOST WOMEN FACING
INFERTILITY FEEL THAT THAT’S A GOOD REPRESENTATION OF THEIR
ENTIRE SELVES. THANKS FOR A FAR BETTER
UNDERSTANDING OF REPRODUCTIVE BIOLOGY AND’S CAUSES OF
INFERTILITY, WE NOW KNOW THAT THE CAUSES AND FREFR LENS VARY
IN DIFFERENT COUNTRIES, IN PART DUE TO ENVIRONMENTAL AND
WORKPLACE TOXINS, BUT OVERTIME OVERALL, THERE ARE APPROXIMATELY
AS MANY CASES OF MALE INFERTILITY AS FEMALE WITH BOTH
PARTY BEING IMPLICATED IN SOME CASES AND UNKNOWN EAT TIOLOGY IN
OTHERS. TYPICALLY CLINICS TREAT THE
COUPLE FOR THAT REASON. LEST WE THINK THAT ONLY WOMEN
ARE SUBJECTED TO THE COLLISION BETWEEN REPRODUCTIVE CAPACITY
AND GENDER IDENTITY, CONSIDER ANOTHER IMAGE I’VE SEEN USED IN INFERTILITY INFORMATION
SESSIONS. THIS IMAGE INCORRECTLY EQUATE
AND MAN’S CAPACITY TO SUSTAIN AN ERECTION WITH HIS ABILITY TO
FATHER A CHILD. WE KNOW FOR MANY CASES,
INCLUDING FATHERS OF PARALYZED BELOW THE WAIST AND OTHERS USING
SPERM ASPIRATION OR PRE-ILLNESS OR PRE-SURGERY SPERM FREEZING
TO GET PREGNANT, THAT THIS IS NOT NECESSARILY THE CASE.
SOMETHING WE CAN ALL DO RIGHT AWAY IS INTERRUPT THESE HARMFUL
ASSOCIATIONS THAT TRAP US IN GENDER AND INFERTILITY
STEREOTYPES WHEN WE HEAR THEM. IT SUGGESTS THE THAT THE WOMEN’S
CREATIVITY AND FEM IT INE ARE PROMISED BECAUSE SHE’S NOT FREG
NANT OR A MAN’S MASCULINITY IS QUESTIONED.
WOULD WE SAY THAT THOSE WHO CHOOSE NOT TO HAVE CHILDREN ARE
BARREN OR IMPOTENT OR MIGHT THEY BE CARRIERS OF OTHER KINDS?
CARRIERS OF OTHER KINDS. FOR THE EARTH OR ENVIRONMENT OR
THEIR LIFE’S WORK. IN ADDITION, WE SEE THAT
FERTILITY IS IMPORTANT TO GENDER IN COUPLES FOR WHOM THE
STEREOTYPES AND BARRIERS EVERYTHING CARRY THE ADDITIONAL
BURDEN OF BEING HETERO SEXIST. GAY FATHERS, FOR EXAMPLE, HAVE
BEEN PIONEERS OF CROSS-BORDER REPRODUCTIVE CARE AND HAVE
TURNED TO SURROGACY ABOUT THEIR FREQUENT AMBIVALENCE WITH THE
PRIVILEGE AND POSSIBILITIES FOR EXPLOITATION CONTAINED IN THIRD,
FOUR TT, AND FIFTH PARTY REPRODUCTION NECESSARY FOR THEM
TO HAVE BIOLOGICAL CHILDREN. COMPREHENSIVE TRNZ REPRODUCTIVE
HEALTHCARE ALSO HAS A LONG WAY TO GO, BUT IT’S A GROWING AREA
THAT SEES ACTIVISM AND FERTILITY TRANSFORMATION AS AN AMAZING
FOCUS. I SHOULD POINT OUT THAT IT’S NOT
EVEN LEGAL TO PRESERVE YOUR FERTILITY WHEN TRANSITIONING IN
ALL COUNTRIES. IT’S NOT ENOUGH TO STOP WITH
GENDER AND SEX WALT. THEY ANYWAY OUT IN VERY
DIFFERENT WAYS IN RELATION TO FERTILITY AND IN RELATION TO ALL
THINGS. WHEN RACE, CLASS, DISABILITY AND
CITIZENSHIP ARE TAKEN INTO ACCOUNT.
SORRY, I MISSED A SLIDE. THE PICTURE HERE THAT IS THE
PATH TO PARENTHOOD IS NOT ALWAYS STRAIGHT, GENDER AND SEX WALITY IS COMPLEX.
I RETURN NOW TO THE STORY OF SARAH AND ABRAHAM.
I STARTED WITH THIS BECAUSE IT’S ALLUDING TO THE WORLD OF INFER
TILT AND FERTILITY AND CONCERNS OF GENDER, GENEALOGY AND
BIOLOGICAL CLOCKS IS ANYTHING BUT NEW.
IN THE SPIRIT OF ENTIRE CONFERENCE, HOWEVER, I WANT ALSO
TO REMIND PEOPLE THAT LINKS BETWEEN FERTILITY AND
STRATIFICATION, GENDER, RACE, NATION, CLASS, ARE ALSO NOT NEW
AND IN FACT CO-EMERGE WITH THE SOCIAL AND BIOLOGICAL FACTS OF
INFER TILT ITSELF IN EVERY INSTANCE.
REMEMBER THAT 14 YEARS PRIOR TO CONCEIVING ISAAC, ABRAHAM HAD A
CHILD WITH HAGAR.
THE NEW AMERICAN STANDARD BIBLE SAYS SARAH HAD BORNE HIM NO
CHILDREN AND SHE HAD AN EGYPTIAN MAID AND SAID NOW BEHOLET, THE
LORD HAS PREVENTED ME FROM BEARING CHILDREN.
PLEASE GO INTO MY MAID, PERHAPS I WILL OBTAIN CHILDREN THROUGH
HER. IN OTHER TRANSLATIONS, SHE’S
REFERRED TO VARIOUSLY AS A SLAVE, SERVANT, A VER SANT GIRL,
OR A — SERVANT GIRL OR A HAND MAID.
IN THIS SORT PASSAGE, WE SEE THAT THIRD-PARTY REPRODUCTION
WAS ALREADY A THING AND IF IT FOLLOWS THE LOGIC WHEREBY HAGAR’S REPRODUCTIVE LABORING
BODY COULD BE OWNED OR AT LEAST APPROPRIATED BY THE PROCREATIVE
INTENT OF SARAH AND ABRAHAM. IN FEMINISM IGNORED THE CHILD
LABOR, MAKING IT IMPOSSIBLE FOR WOMEN TO ENTER THE WORKFORCE,
THE CHOICE OFTEN IGNORES THE RACE, CLASS AND NATIONAL
DYNAMICS OF STRAT TI CERTIFIED REPRODUCTIVE LABOR TOO.
IN MY BOOK MAKING PARENTS, I CALM UP WITH THE PHRASE SELECTED
PROANYWAY TALISM TO POINT TO THE LOGICS WHERE PEOPLE SOME ARE
CONTRASEPTEMBERED AND SOME ARE PROCEPTED.
AND I WAS TALKED ABOUT TRYING TO DO ANIMALS AND HUMANS IN THE
SAME FORMAT, PhD LOGIC THERE, AND ALSO TO REFER TO PROCESSES
WHEREBY SOME PEOPLE BECOME INTENDED PARENTS AND OTHERS
BECOME PARTIES TO THE REPRODUCTION OF INTENDED PARTIES.
I’VE LEARNED THROUGHOUT MY CAREER FROM THE BRILLIANT WORK
OF MY COLLEAGUES IN THE SOCIAL STUDIES OF SCIENCE AND MEDICINE
AND TRANSNATIONAL FEMINISM, OF IMPORTANT IMPORTANCE TO US AT
THIS CONFERENCE IS THE CONSENT OF REPRODUCTIVE JUSTICE.
AT ONES A SCHOLARLY AND ACTIVIST MOVEMENT, REPRODUCTIVE JUSTICE
IS PIONEERED BY U.S. WOMEN OF COLOR, COLLABORATING OR IN CLOSE
KINSHIP WITH MANY COLLEAGUES AND ALLIESES FROM GENDER
IDENTITY, DISABILITY JI, AND INDIGENOUS STUDIES AND HAS
INCREASINGLY JOINED UP WITH COLLEAGUESES AROUND THE WORLD.
REPRODUCTIVE JUSTICE EXPANDS THE CONCEPT OF REPRODUCTIVE CHOICE
THAT SARAH AND ABRAHAM SHOULD HAVE OPTIONS TODAY TO ENCOMPASS
THE CASE OF HAGAR AND HER RIGHTS TO HER OWN REPRODUCTIVE
AUTONOMY, TO HAVE AND RAISE HER OWN CHILDREN AND TO DO SO FREE
FROM ECONOMIC AND OTHER KINDS OF STRUCTURAL VIOLENCE, INCLUDING
ENSLAVEMENT, THE REMOVAL OF CHILDREN BY INTENDED PATENTS OR
THE REMOVAL OF CHILDREN BY THE STATE.
IN MY SECOND BOO, GOOD SCIENCE, I FOCUSED ON THE INNOVATION
ECONOMIES. THESE EMBRYOS ARE MY CHILDREN,
BY THE WAY, TWO OF MY CHILDREN. I FOCUSED ON THE ECONOMIES AND
GEO POLITICS OF HUMAN PLEASURELY POTENT STEM CELL RESEARCH.
I INVESTED HOW HUMAN EMBRYONIC STEM CELL RESEARCH BECAME
PERMISSIBLE BY COMBINING THREE ELEMENTS THAT HADN’T BEEN
NECESSARY TO ARTICULATE FOR THE PRIVATE TREATMENT-BASED RISE OF
THE FERTILITY INDUSTRY, SO IT’S VERY IMPORTANT THAT IN THE U.S.,
THE FERTILITY INDUSTRY DEVELOPED MOSTLY IN THE PRIVATE
SECTOR, MOSTLY FREE FROM SCIENTIFIC REGULATORY APPARATUS.
THAT WAS NOT TRUE AT ALL OF STEM CELL RESEARCH AND IS NOT TRUE
AT ALL OF GENOME EDITING. IN THIS BOOK, I TALKED ABOUT
SOMETHING CALLED THE PROCURAL FRAME AND I ANALYZED IT AS BEING
COMPOSED OF THREE THINGS. THE MORAL IMPERATIVE OF BEING
PRO-CURES ABOUT WHICH DISABILITY JUSTICE AND RACIAL JUSTICE
SCHOLARS HAVE TAUGHT US TO BE EXTREMELY WARY, THE USE OF
PUPPET MEASURES AND FUNDS TO DERISK THE SOCIAL AND ETHICAL
RISKS SURROUNDING THE PROCUREMENT OF HUMAN EGGS,
SPERM, EMBRYOS AND EMBRYONIC PRODUCTS INTO THE LAB AND BIO-CURATION, KEEPING TABS ON
THE CUSTODY OF THESE MATERIALS. THESE ARE THE FRAMES THROUGH
WHICH I THINK ABOUT THE HISTORY OF U.S. REPRODUCTIVE TECHNOLOGY.
I’M GOING TO TURN NOW TO LANDMARK ASPECTS OF THE HISTORY
OF REPRODUCTIVE TECHNOLOGIES IN THE UNITED STATES.
IN AN ARTICLE EARLIER THIS YEAR IN THE IVF GLOBAL HISTORY
SPECIAL ISSUE OF REPRODUCTIVE BIOMEDICINE AND SOCIETY ONLINE,
A PAPER I CALLED BETWEEN A ROCK AND A MARKETPLACE, I DOCUMENTED
THE RISE AND UNIQUE CHARACTERISTICS OF THE U.S.
REPRODUCTIVE TECHNOLOGY FIELD. THE U.S. HAS PLAYED AND
CONTINUES TO PLAY A DISTINCTIVE AND SIGNIFICANT PART IN THE
HISTORY OF IN VITRO FERTILIZATION AND ASSISTIVE
REPRODUCTIVE TECHNOLOGIES WORLDWIDE.
THE U.S. EMERGED IN THE CONTEXT OF FERTILITY AND SOCIAL CONCERN,
WITHOUT UNIVERSAL HEALTHCARE, SOMETHING THAT’S COME UP
ALREADY, AND IN THE POLITICAL CONTEXT OF THE ABORTION DEBATE
AND ITS IMPACT ON FEDERAL VERSUS STATE FUNDING AND REGULATION.
IVF HAS ITS FIRST CLINIC SUCCESS IN THE U.S. IN 1981.
SINCE THEN, THE U.S. HAS BECOME KNOWN FOR PROCEDURES INVOLVING
THIRD, FOURTH AND FIFTH PARTIES, SPERM DONORS, EGG DONORS AND
SURE RA GATES IN THE PRACTICE OF IVF.
IT’S ALSO GOTTEN ONE OF THE PIONEERS IN DOMESTIC AND
TRANSNATIONAL DEPLOYMENT OF IVF FOR SAME SEX AND TRANS-INTENDED
PARENTS, AND PIONEERS OF SOCIAL EGG FREEZING SINCE THE
ASSOCIATES FOR REPRODUCTIVE TECHNOLOGIES DECLARED THE EGG
FREEZING PROCEDURE NO LONGER EXPERIMENTAL IN 2013.
U.S. IVF HAS BEEN MARKED BY DEBATE ABOUT SUCH THINGS, REALLY
CHARACTERISTIC THINGS IT’S MARKED BY, IN PARTICULAR DEBATE
ABOUT SUCH THINGS AS POOR SUCCESS RATES AND MISLEADING
PATIENTS WITH UNDUE HYPE AND HOPE, POOR INSURANCE COVERAGE
AND ORGANIZATIONS LIKE RESOLVE, A PATIENT ACTIVIST, ADVOCACY
ORGANIZATION, HAS LOBBIED FROM THE VERY, VERY FIRST PHASE FOR
UNIVERSAL HEALTH COVERAGE FOR FERTILITY, ONLY 15 STATES TO
THIS DAY OFFER OR COVER INFERTILITY FOR THOSE WHO HAVE
HEALTH INSURANCE AND FOR THOSE WHO DON’T HAVE HEALTH INSURANCE
AND ALL THE EXEMPTIONS THAT THERE ARE ON THE — THAT ALLOW
PEOPLE NOT TO OFFER THIS COVERAGE.
IT’S ALSO BEEN MARKED BY EXTRAORDINARILY HIGH PAYMENTS
FOR THE RIGHT KIND OF EGG DONORS, UPWARDS OF $50,000 FOR
THE RIGHT RACE, ETHNICITY, IQ AND MUSICAL TALENT AND SUCH
THINGS. PEACEFUL MUSIC AT THIS
CONFERENCE, BY THE WAY, THANK YOU.
[ LAUGHTER ] AND THAT DOESN’T MEAN I’M GOING
TO GET AN EXPENSIVE EGG DONOR. AND THE GENDER, DURATION AND
COST-BASED ACCESS TO MEETINGS AND EXPERIENCES OF INFER TILT
AND THE EXPLOITATION OF SURROGATES AND DONORS, POSTPONED
CHILD BEARING, AND DONOR OFFSPRING SEARCHES FOR THEIR
GENETIC PARENTS. THERE HAVE BEEN WAVES OF PUBLIC
DEBATE AND PUBLIC CONTROVERSY AROUND EACH OF THESE THINGS.
DEBATES ABOUT THE BIOMEDICAL INTERFACE, INCLUDING THE USE TO
STEM CELL AND EDITING RESEARCH CREATED DURING IVF IS ALSO A
SIGNATURE ASPECT OF U.S. IVF AND YOU MIGHT REMEMBER
PRESIDENT BUSH’S ADAGE, THERE’S NO SUCH THING AS ELECTIVE EMBRYO
AND THERE ARE PLACES THAT FREEZE EMBRYOS AND YOU CAN ADOPT
AN EMBRYO AND BRING IT TO TERM. TWO TIME MAGAZINE ARTICLES
NICELY BOOK-END THE RISE AND MAINSTREAMING OF U.S. IVF.
U.S. RESEARCHERS WERE THE FIRST TO PUBLIC EVIDENCE OF HUMAN
FERTILIZATION IN VITRO WITH THE PUBLICATION IN 1994 OF
THE CREATION OF TWO TWO-CELLED AND TWO THREE-CELLED HUMAN
EMBRYOS. THE TIME MAGAZINE ARTICLE THAT
REPORTED ON THE PAPER FAMOUSLY SUMMED UP THE FRAMING OF THE
PUBLIC DEBATE AT THE TIME IN TERMS OF MAN AGAINST NATURE AND
AN AFFRONT TO WOMANHOOD AND MOTHERHOOD IN THE FACE OF
SCIENTIFIC REPRODUCTION. THE QUOTE READS, MEN WILL NEVER
BE HAPPY UNTIL HE HAS PROFFERED THAT HE IS AT LEAST AS SMART AS
NATURE. ONE THING HE WOULD LIKE TO SHOW
THE WORLD IS THAT HE CAN REPRODUCE HIMSELF SCIENTIFIC
APPROXIMATELY ARTIFICIAL INSEMINATION WAS ONE STEP.
HE TOOK ANOTHER STEP LAST WEEK WITH THE FIRST RECORDED
FERTILIZATION OF A HUMAN OVUM OUTSIDE THE MOTHER’S BODY.
IN SCIENCE LAST WEEK, HARVARD GYNECOLOGIST JOHN ROCK AND HIS
ASSISTANT MIRIAM REPORTED THE SCIENTIFIC AFFRONT TO WOMANHOOD.
NOTICE THE SEPARATION OF LABOR THERE.
IT’S WORTH NOTING THAT THIS FRAMING AS A SCIENTIFIC AFFRONT
TO NATURE AND TO WOMAN WAS VERY SHORT-LIVED AND MAJOR CONCERNS
QUICKLY BECAME CONCERNS FROM RELIGION AND CONCERNS ABOUT
SAFETY, MONSTROSITY, AND SO ON.
FAST FORWARD TO 2007, AND A TIME MAGAZINE ARTICLE FROM DECEMBER
2007 ASKED WHAT THE TEN BEST COLORS TO OUTSOURCE MIGHT BE.
AT THE TOP OF THE ARTICLE, IT SAID OUTSOURCING BRINGS TO MIND
BIG FACTORIES AND CALL CENTERS, BUT ENTREPRENEURS AROUND THE
GLOBE NOW OFFER SERVICES FROM TUTORING TO SCULPTING A BUST OF
YOUR GRANDPA TO REGULAR FOLKS FOR A FRACTION OF THE COST IN
THE WEST. THOUGHT THE WORLD WAS FLAT
BEFORE? WELL, NOW YOU CAN HIRE SOMEONE
IN INDIA TO CARRY YOUR CHILD. TASK NUMBER ONE, BEST CHORE TO
OUTSOURCE, DECEMBER 2007, PREGNANCY.
JUST FOR YOUR INTEREST, TASK NUMBER TWO, PLAYING A VIDEO GAME
TO REACH HIGHER LEVELS. SIMILAR, LOTS OF HASHTAG
EQUIVALENCES GOING ON HERE. THREE, TILTING A BOOK YOUR
MOTHER WROTE FOR HER GRIDIRON. 401(K) TUTORING YOUR SON IN
MATH. BETTER GET THAT EDGE, AND 5,
MAKING A VIDEO TRIBUTE FOR YOUR SISTER’S WEDDING.
OKAY, PREGNANCY IS NOT ONLY RANKED NUMBER ONE, THE FACT THAT
NOW YOU CAN HIRE SOMEONE IN INDIA TO CARRY YOUR CHILD IS
TAKEN BY THE ARTICLE’S AUTHOR AS A SIGN THAT THE WORLD IS FLAT.
ECONOMIC, REGULATORY, RELIGIOUS, LEGAL, AND ETHICAL GRADIENT ALL
PUSH PEOPLE, SCIENTISTS, CLINICIANS, PATIENTS,
MANUFACTURERS, AROUND THE WORLD IN SEARCH OF THIRD-PARTY
REPRODUCTION. TO PORTRAY THESE GRADIENTS AS
EVIDENCE OF FLATNESS RATHER THAN EVIDENCE OF PROFOUND STRUCTURAL
INEQUALITY AND SUSTAINED STRUCTURAL INEQUALITY, OFTEN
SHORED UP BY IMPERIAL AND COLONIAL RELATIONS OF TODAY OR
YESTERYEAR AND TO FAIL TO SKIP A BEAT IN HIRING SOMEONE TO BE
FREG PLAN FOR YOU OR TO BLY THAT IT WOULD OBVIOUSLY STILL BE
YOUR CHILD SHE GAVE BIRTH TO IS TO SUFFER FROM AN INTENSE FORM
OF NEO-LIBERAL BLINDNESS. SO GENDER, SEXUALITY, RAISE,
CLASS, DISABILITY, NATION, MARKET, AND INNOVATION ARE THE
STORY OF INFERTILITY AND OF IVF IN THE U.S.
IT SEEMS RIGHT TO ASK HOW WE CAN GO ABOUT SCIENCE POLICY
DIFFERENTLY AS NEW TECHNOLOGIES ARE DEVELOPED AND DEPLOYED IF
WE’RE GOING TO TAKE CARE OF ALL OF THESE CONCERNS.
WE NEED SOME WAY TO MAKE THE RIGHT KINDS OF CONVERSATIONS
HAPPEN, AS THIS CONFERENCE IS DOING, WHERE WE’RE LISTENING AND
LEARNING ACROSS SPECIALIZATIONS CAN OCCUR.
I’M GOING TO TURN NOW TO THE CASE OF GENOME EDITING AND ASK
HOW WE SHOULD THINKING ABOUT ONBOARDING NEW TECHNOLOGIES IN
THIS AREA. AND GENOME EDITING IS A GREAT
CASE FOR THIS BECAUSE THERE’S ALMOST UNIVERSAL AGREEMENT THAT
AN OLDER MODEL OF SCIENCE POLICY DOESN’T WORK IN THIS ARENA.
SO THE OLDER MODEL THAT YOU ANYWAY OR ANYWAY NOT BE AWARE OF
IS ONE THAT’S — MAY OR MAY NOT BE AWARE IS ONE THAT YOU’LL
RECOGNIZE EVEN IF YOU DON’T KNOW IT BY THIS NAME, CALLED THE
PUBLIC UNDERSTANDING OF SCIENCE. THE PUBLIC UNDERSTANDING OF
SCIENCE IS SOMETIMES SLIGHTLY DERYE SIEVELY CALLED THE
DOWNWARD MODEL OR SOMETIMES THE CHARLES WEBER MODEL BECAUSE IT’S
THOUGHT TO COME FROM POLICY SCHOOLS AT HARVARD AND M.I.T.
WHERE KNOWLEDGE FLOWS IN ONE DIRECTION FROM EXPERTS TO LAY
PEOPLE. THIS LEVEL WAS BASED ON TWO
PREMISES ABOUT SCIENTISTS AND TWO ABOUT THE PUBLIC.
THE TWO ABOUT THE SCIENTISTS WERE THAT EXPERTS KNOW BEST,
THEY UNDERSTAND THE SCIENCE IN QUESTION, AND SECOND, THAT
EXPERTS ALSO KNOW BEST HOW TO THINK ABOUT THE ISSUES RAISED BY
THE SCIENCE IN QUESTION. THE TWO PREMISES ABOUT THE
PUBLIC WERE THE FOLLOWING. THE PUBLIC NEEDS TO BE EDUCATED
BECAUSE THEY DON’T UNDERSTAND THE SCIENCE.
THERE’S A GAP OR A DEFICIT OR FAILURE OF MADDING AND THE
SECOND — OF MADDING, AND THE SECOND PREMISES THAT THE PUBLIC
WILL AGREE TO AND SEE THE WISDOM IN SCIENCE POLICY BASED ON
SCIENTIFIC EXPERTISE ONCE THEY ARE EDUCATED.
IT’S A HIGHLY HIGH ARC CAL MODEL, IT PUTS SCIENTIFIC
KNOWLEDGE OVER OTHER KINDS OF KNOWLEDGE.
IT’S PATERNALISTIC AND GETS DESCRIBE AS HAVING A DEMOCRATIC
DEFICIT. THIS MODEL WORKS WELL WHEN THE
POSITION OF SCIENCE AND GOVERNMENT IS SECURE AND THERE’S
GOOD REASON TO TRUST THAT THE SCIENCE IN QUESTION IS TRIED AND
TRUE AND WILL BE GROODLY SPEAKING — BROADLY SPEAKING BENEFICIENT.
THIS MODEL HAS BEEN LARGELY REPLACED IN SCIENCE POLICY
CIRCLES, HOWEVER, BY ANOTHER MODEL AND THIS MODEL IS CALLED
PUBLIC ENGAGEMENT IN SCIENCES TO SO INSTEAD OF UNDERSTANDING
NOW, THE EMPHASIS IS NOW ON ENGAGEMENT IN SCIENCE.
PUBLIC ENGAGEMENT IN SCIENCE IS SOMETIMES CALLED THE
CO-PRODUCTION MODEL AFTER SOME WORK WHERE ALL KINDS OF
STAKEHOLDERS SHOULD HAVE A SAY IN SCIENCE POLICY.
THIS MODEL IS ALSO BASED ON TWO PREMISES ABOUT SCIENTISTS AND
TWO ABOUT THE PUBLIC. THE FIRST ONE IS IDENTICAL,
EXPERTS KNOW THEIR OWN FIELDS BEST.
SCIENTIFIC EXPERTS ARE THE KINDS OF EXPERTS KNOW THEIR OWN FIELD
BEST. BUT THE SECOND PREMISE IS THAT
THEY HAVE NO SPECIAL UNDERSTANDING OF OTHER FIELDS.
EXPERTS ARE NEITHER ANY BETTER NOR ANY WORSE, PRIMA FACIE, THAN
ANYONE ELSE IN KNOWING HOW TO THINK ABOUT THE VARIOUS KINDS OF
ISSUES RAISED BY THE SCIENCE IN QUESTION.
THE TWO PREMISES ABOUT THE PUBLIC ARE ALSO SLIGHTLY
DIFFERENT. THE PUBLIC IN THIS MODEL IS
CONCEIVED OF AS HAVE MANY AREAS OF EXPERTISE, INCLUDING MANY
OTHER KINDS OF SCIENCE, BUT ALSO ALL KINDS OF NON-SCIENTIFIC
KNOWLEDGE AND EXPERIENCE, SUCH AS LAW, ETHICS, HUMANITIES, AND
LIFE AND ENVIRONMENTAL EXPERIENCE AND EXPOSURE.
AND THE SECOND PREMISE ABOUT THE PUBLIC IS THAT THE PUBLIC’S
KNOWLEDGE IS RELEVANT TO SCIENCE POLICY.
FOR EXAMPLE, IN MATERIALS, WHOSE EGGS AND
WHO ARE GOING TO BE THE DONORS AND HOW DO WE MOVE THESE
PRECIOUS HUMANOID MATERIALS AROUND THE PLACE AND WHAT DO YOU
DO TO GET RID OF NO LONGER WANTED EMBRYOS?
IT ALSO CONTAINS THE IDEA THAT INCLUDING THESE KINDS OF
EXPERTISE MIGHT IMPROVE THE SCIENCE IN QUESTION.
PUBLIC ENGAGEMENT IN SCIENCE IS A MUCH LESS HIERARCHICAL MODEL
WHERE DIFFERENT ACTORS AND KINDS OF KNOWLEDGE ARE IMPORTANT.
IT’S PARTICIPATORY BY DESIGN AND IT HAS A DEMOCRATIC SURE FIT
WHICH CAN MAKE IT UNRULY. IT WORKS WELL WHEN THE CASE OF
SCIENCE IN QUESTION NEEDS TO BE MADE, WHEN LIMITSES ARE AT STAKE
OR WHERE THERE ARE REASONS TO BE CONCERNED ABOUT ETHICAL AND
SOCIAL RISK SUCH AS BECOMING OR PER PET WAITING A SELECTING —
PERPETUATING A SELECTING SOCIETY.
THE FAMOUS CARTOON, THE PEACE SANSES ARE REVOLTING, CAPTURES
WHAT PROFESSOR BENJAMIN WAS REFERRING TO YESTERDAY AS SOCIAL
ILLITERACY JUST AS MUCH THE COMMENTARY ABOUT CROSS ALREADY
BORDER REPRODUCTION — CROSS-BORDER REPRODUCTION AS
EVIDENCE OF THE FLATNESS. THE KING CANNOT SEE HIS OWN ILLEGITIMATY AS RULER BECAUSE HE
CANNOT SEE THE POWER OF THE PEOPLE.
A SECOND CARTOONS PLAYS ON THE THEME, ASSUMES THAT EVERYONE
KNOWS THE EARLIER CARTOON AND SHOWS WHAT HAPPENS WHEN YOU
APPLY THAT KIND OF LOGIC TO HEALTHCARE PRIORITIES AND HEALTH
FUNDING. THE GUY SAYS THE PEASANTS ARE
REVOLTING AND THE KING SAYS, I KNOW, PUT DEODORANT AND
MOUTHWASH IN THE HEALTHCARE BILL.
SO THIS CARTOON HIGHLIGHTS THE WAY IN WHICH THE WRONG MEDICAL
PRIORITIES ARE FUNDED IN THE SOCIAL PROBLEM IS INCORRECTLY
DIAGNOSED AND IF THERE IS AN EXCESS OF SOCIAL ILLITERACY.
SO RATHER THAN THE PUBLIC UNDERSTANDING OF SCIENCE, IN THE
CASE OF HUMAN GENOME EDITING, IT CALLS FOR A DIFFERENT MODEL.
THAT’S A PUBLIC ENGAGEMENT OF SCIENCE.
AND THE CALL FOR THIS HAS BEEN MADE FAR AND WIDE.
WHAT MIGHT THE PUBLIC ENGAGEMENT IN GENOME EDITING LOOK LIKE?
THE KEY QUESTIONS THEN IF WE TAKE THE MODEL OF PUBLIC
ENGAGEMENT SERIOUSLY FALL INTO TWO GROUPS.
FIRST, WHO ARE THE PUBLIC. DOES THE PUBLIC MEAN
STAKEHOLDERS? IT’S IMPORTANT TO KNOW WHO
SITTING ON THESE COMMITTEES VARIES FROM COUNTRY TO COUNTRY.
PROFESSOR MURDOCH WAS TELLING US EARLIER ABOUT WHAT GETS CALLED IN ENGLAND,
PEOPLE WHO RISE TO A POSITION OF POWER IN THEIR RESPECTIVE
FIELDS ARE CONSIDERED TO BE GOOD SPOKESPEOPLE ISSUES THEY DON’T
NECESSARILY HAVE EXPERTISE ON, WHEREAS IN THE U.S., IT’S MUCH
MORE DOMAIN SPECIFIC. SO THE FIRST QUESTION IS WHO ARE
THE PUBLIC? DOES THE PUBLIC MEAN
STAKEHOLDERS OR DOES THE PUBLIC MEAN EVERYONE?
AND PERHAPS THERE’S A CASE TO BE MADE, ESPECIALLY FOR THOSE WHO
ARE NOT STAKEHOLDERS, WHO DON’T HAVE AN INTEREST IN THE SCIENCE
IN QUESTION AND WHO THUS MIGHT BE SEEN AS BETTER AT JUDGING THE
PUBLIC GOOD. THERE’S A LONG-STANDING BODY OF
SOCIAL THEORY SUGGESTING THAT PEOPLE WHO HAVE LESS OF AN
INTEREST, LESS TO LOSE, SEE BETTER THE REALITY OF THE SOCIAL PROBLEMS AT HAND.
WHO ARE THE STAKEHOLDERS IN GENOME EDITING?
SCIENTISTS, CLINICIANS, POLITICIANS, PATIENTS, THOSE
LIVING WITH DISABILITIES, THOSE MARKETING THE TECHNOLOGIES,
THOSE PROVE FITTING FROM THE TECHNOLOGIES, AND THEIR
VALUE-ADDED ADD-ONS. THOSE CURRENTLY OR HISTORICALLY
UNDERSERVED BY THE MEDICAL OR TECHNICAL FIELDS OF THE
TECHNOLOGIES IN QUESTION, THE ETHICISTS, RELIGIOUS LEADER
MANY, SOCIAL SCIENTISTS AND SO ON.
CAN EVERYBODY PLAY A ROLE? AS PROFESSOR SAXTON POINTS OUT,
CAN ANYONE SPEAK FOR THE ENTIRE GROUP OF CHA THEY’RE
REPRESENTATIVE? AND HOW DO YOU REPRESENT THOSE
WHO CANNOT REPRESENT THEMSELVES, UNBORN GENERATIONSS WHO MIGHT
BE EDIT THE BEFORE THEIR BIRTH, THOSE WHO DON’T HAVE THE POWER
OF SPEECH AND SO ON. HOW DO YOU WEIGH UP, FOR
EXAMPLE, THE RISKS OF BECOMING A EVER MORE SELECTING SOCIETY
VERSUS THE RIGHT OR NEED FOR BIOMEDICAL CURES, HOW DO YOU
BALANCE, IN OTHER WORDS, INDIVIDUAL GOOD VERSUS SOCIETAL
HARM. HOW DO YOU FACTOR IN ECONOMIC
ACTIVITY AND ITS DOWNSTREAM EFFECT ON THE PUBLIC?
SO WITH THAT BIO-INNOVATION MODEL I TALKED ABOUT EARLIER
FROM MY BOOK GOOD SCIENCE, THAT PREMISE WAS NOT JUST THAT PRO
CURES WOULD COME UP WITH CURES, BUT IF IT’S REGENERATIVE IN TWO
SENSES, IT WOULD ALSO REGENERATE AND REVITALIZE THE ECONOMY AND
THAT WOULD HAVE TRICKLE-DOWN EFFECTS WHICH WOULD ENRICH THE
TAXPAYER AND WOULD ENRICH THE STATE IN GENERAL, PAYING INTO
PUBLIC COFFERS AND PUBLIC BENEFITS FROM WHICH EVERYONE STANDS TO BENEFIT.
SECOND, HOW SHOULD THE PUBLIC ENGAGE?
HOW DO YOU OR WHOEVER INCENTIVIZE THE PUBLIC TO
PARTICIPATE? HARDER THAN YOU MIGHT THINK.
IT’S VERY HARD TO GET, FOR EXAMPLE, NON-STAKEHOLDERS TO
COME AND HAVE A SAY, TO WEIGH IN ABOUT PARTICULAR ISSUES.
WHAT’S MEANINGFUL PARTICIPATION? IS IT BEING SURVEYED BY EXPERTS,
IS IT COMMENTATING DURING PUBLIC COMMENT PERIODS?
SO FOR EXAMPLE IN THE U.K., WE’RE REALLY GOOD AT SURVEILING
PEOPLE’S OPINIONS, BUT NOT NECESSARILY THAT GOOD ABOUT
BRINGING PEOPLE’S OPINIONS TO BEAR ON THE EVENTUALLY SOLUTIONS
WE COME UP WITH. IS IT COMMENT THAT YOU THINK IS
A GOOD THING OR BAD THING? IS IT COMMENTING BURG PUBLIC
COMMENT PERIODS, IS IT JUST HAVING A VOICE, IS IT THE FACTS
OF BEING HEARD? IS IT PROTESTING AND RESISTING?
MANY DIFFERENT WAYS THAT YOU CAN HAVE MEANINGFUL PARTICIPATION.
WHAT’S THE GOAL OF THE PARTICIPATION?
IS IT HAVING A CHANCE TO SPEAK AND BE HEARD IN AN OFFICIAL
FORUM? IS IT — OR IS IT SOMETHING MORE
SUBSTANTIVE? IS IT INFLUENCING THE FRAMING OF
THE DEBATE FROM THE OUTSET OR SHOULD THERE BE A TRACEABLE
IMPACT, SO THIS IS KIND OF FROM THE LEAST, HAVING A VOICE AND
BEING HEARD FRIMEG THE TERMS OF THE DEBATE, OR SHOULD IT GO ALL
THE WAY TO HAVING A TRACEABLE IMPACT ON HOW THE SCIENCE IS
DONE, FOR TWLAUD DIAGNOSIS TO CARRY OUT — STUDIES TO CARRY
OUT FOR WHAT CONDITIONS AND WITH WHAT CLINICAL INTERFACE AND
WHAT CONSEQUENCES TO THE MORALITY AND THE ECONOMY.
PERHAPS ITS ONLY REAL ENGAGEMENT IS THE PUBLIC’S VOICE AND WIDE
RANGE OF OPINIONS ARE VISIBLE IN THE RESULTING LEGISLATION, BUT
THEN YOU HAVE TO ASK, ARE THERE ANY VIEWS THAT ARE TOO EXTREME
TO BE INCLUDED? ARE THERE ANY OUTSIDE THE POLICY
AT LARGE? ARE THERE THINGS THAT INTRINSIC
INTRINSICALLY VIOLENT OR DANGEROUS, THINGS THAT SHOULD BE
RULED OUT FROM THE START? AGAIN, THIS IS ONE BIG
DIFFERENCE BETWEEN THE U.S. AND U.K., THE FREE SPEECH AND FIRST
AMENDMENT MAKE MORE THINGS ACCEPTABLE TO SAY IN THE U.S.
THAN THEY DO IN MOST PLACES IN EUROPE.
THE KINDS OF THINGS WE KNOW WE NEED TO DO IF WE’RE TO ADD REAL
SOCIAL JUSTICE GOALS TO EXCELLENT SCIENCE ARE THINGS
THAT THOSE OF US AS A GROUP CALLED SCIENCE FAIR TACKLE, SO
SCIENCE FAIR IS AN INFORMAL GROUP OF US, ANYBODY WHO WOULD
LIKE TO IS MORE THAN WELCOME TO JOIN AND FAIR AS BAD PUN AND IT
STANDS FOR FEMINIST ANTIRACIST EQUITY.
IT’S A DATA SCIENCES INITIATIVE TO ARGUE FOR BETTER
INFRASTRUCTURES AND COLLECTING GOOD DATA ON SOCIAL AND
POLITICAL AND ECONOMIC FACTORS SEPARATELY FROM OR INDEPENDENTLY
FROM THE CLINICAL CONTEXT.
SO WE KNOW WE NEED ROBUST AND ONGOING PUBLIC CONSULTATION WHEN
THERE’S A QUESTION OF PUBLIC TRUST AND WHEN THE RISKS AND EVER — EVER PICK CASEY OF
TECHNOLOGIES ARE STILL AT STAKE. WE KNOW WE NEED FUNDING MODELS
THAT INTERNALIZE THINGS THAT HAVE PREVIOUSLY BEEN THOUGHT OF
EXTERNALITIES TO HEALTHCARE FUNDING AND INNOVATION FUNDING.
WE COULD ALSO ARGUE THAT WE NEED PACKAGES SELECTED TO OVERSEE
THE GOALS THAT TR BEING MONITORED AND THESE SHOULD HAVE
VERY STRONG REPRESENTATION, FOR EXAMPLE, PROFESSOR SAXTON
REFERRED TO AS DISABILITY CONSULTANTS, PEOPLE WHO HAVE
EXPERIENCED CONDITIONS IN QUESTION, PEOPLE WHO HAVE
PARTICULAR KINDS OF INSIGHT INTO THE PHENOMENA THAT WE’RE
COLLECTING DATA FOR, SO FOR EXAMPLE, THIS GROUP, SCIENCE
FAIRE IS INTERESTED IN COLLECTING DATA ON SEXISM,
RACISM, ABLISM, CLASSISM, AND SO ON IN TECHNOLOGIES THAT ARE
MOSTLY BEING ROLLED OUT IN AN INDIVIDUALIST CLINICAL CONTEXT.
GOVERNMENT BUY-IN, AT LEAST THE GOVERNMENT NEEDS NOT TO BE
OPPOSED TO IT. WE NEED HEALTH INFRASTRUCTURE
AND DATA ANALYTICS BUY-IN. WE NEED ROBUST AND REGULARLY
UPDATED MEASURES OF INCREASED WELL-BEING, AND IN PARTICULAR,
WE NEED MARCHING RIGHTS TO CALL FOR NEW RESEARCH OR TWEAKS IN
ONGOING RESEARCH IN THE LIGHT OF FINDINGS.
SO THE INTERVENTIONS, THE FINDINGS OF SUCH GROUPS MUST BE
ROBUST, THEY MUST HAVE TEETH, THERE MUST BE WAYS TO TWEAK WHAT
WE’RE DOING IN OUR SCIENCE POLICY AT LARGE ON THE BASIS OF
THE SOCIAL PATTERNS THAT WE’RE FINDING.
AND REMEMBER FROM THE — ALL THE TALKS WE’VE HEARD SO FAR, WE
KNOW THAT WE HAVE A PREDISPOSITION TO NORMALIZE AND
NATURALIZE CERTAIN ORDERS THAT ARE ANYTHING BUT FLAT, SO THE
WORK IT TAKES TO REVEAL THESE THINGS AND TO BRING TO LIGHT THE
PATTERNS OF DISCRIMINATION, PATTERNS OF SELECTION AND THEIR
IT IN GATION IS SIGNIFICANT AND SUBSTANTIAL — THEIR MITIGATION
IS SIGNIFICANT AND SUBSTANTIAL. I ALSO WANT TO EMPHASIZE THAT
THERE IS A VERY, VERY STRONG CONTINUITY BETWEEN WHAT’S GOING
ON IN THINGS LIKE GENOME EDITING AND NON INVEIGH PRENATAL TESTING, BUT ALSO HOW
WE SEG AGGREGATE GREAT OUR SCHOOLS, THE DIFFERENCE BETWEEN
PRIVATIZED AND PUBLIC CHILDHOODS, THE EMPHASIS WE PUT
ON, QUOTE-UNQUOTE, MERIT TOK
ACCURACY. ALL OF THESE THINGS ARE LEADING
US TO AN INCREASINGLY CELEBRATIONTIVE SOCIETY IN MY
POINT OF VIEW AND I DON’T BELIEVE WE SHOULD PUT ANY MORE
OR LESS WEIGHT ON ANY ONE LOCUS THAN ON ANY OTHER.
[ APPLAUSE ] TODAY, TECHNOLOGY’S PROMISE IS
WHAT IS PERHAPS — SO THAT’S THE — ALL I HAVE TO SAY ABOUT
THAT. TODAY’S TECHNOLOGIES PROMISE
WHAT IS PERHAPS AN EVEN GREATER SERIES OF CHALLENGES AND
OPPORTUNITIES TO HOW AND WHETHER AND FOR WHOM WE THINK ABOUT
REPRODUCTION. SO IN MY FORTHCOMING BOOK,
GETTING AHEAD, AUTOMATION, AUGMENTATION AND DESELECTION, I
TURN MY ATTENTION TO THE COMING TOGETHER OF THE SUITE OF
EMERGING TECHNOLOGIES WHICH PERHAPS EVEN MORE RADICALLY WILL
AFFECT WHAT IT WILL MEAN TO BE HUMAN AND FOR WHOM IN THE YEARS
TO COME. GENOME EDITING AND THE NEWEST
VERSIONS OF REPRODUCTIVE TECHNOLOGIES ARE EMERGING NOT
JUST ABOUT BIOAND PERSONALIZED MEDICINE, BUT WITH 3D PRINTING,
DRONES, AUTONOMOUS CARS, ROBOTICS, BIG DATA, COMPUTATION
AND THE FINALIZATION AND DIGIT DIGITIZATION OF EVERYTHING.
AT THE SAME TIME, THESE TECHNOLOGIES ARE BEING DEPLOYED
IN A TIME OF RISING POPULISM THAT IN MANY WAYS SETS ITSELF
AGAINST TECHNOLOGY ELITE AND IN A TIME OF UNPRECEDENTED AND
UNSTABLE INEQUALITY THAT WILL LIKELY MAINTAIN IF NOT
EXACERBATE ALL THE DIGITAL AND OTHER TECHNOLOGY DIVIDES.
THERE ARE ALSO CO-EMERGING IN A TIME OF ENVIRONMENTAL AND
MIGRATORY CRISIS. IN SOME PARTS OF THE WORLD,
WIELD BE CONFRONTED WITH QUESTIONS SUCH AS THE
POSSIBILITY OF AN END TO BODILY PREGNANCY.
MANY OF MY STUDENTS THINK THAT SOUNDS ABSOLUTELY FANTASTIC.
HAVE A ROBOT THAT DOES THE PREGNANCY FOR YOU AND THAT WILL
BE A GREAT HELP IN GENDER EQUITY.
THE POSSIBILITY OF LIFE EXTENSION, IT’S EASY TO DISMISS
THE SINGLITY AND OTHER THINGS, BUT THERE IS ACTUALLY A LOT OF
MONEY GOING INTO VIEWS — INTO SCIENCE AND TECHNOLOGY RELATED
TO LIFE EXTENSION. WHAT DO WE DO WITH LIFE
EXTENSION, ESPECIALLY IN THE LIGHT OF AN AGING POPULATION AND
THE ECONOMIC DYNAMICS OF AGING POPULATIONS?
WILL LIFE EXTENSION, IF IT BECOMES EVEN SOMEWHAT WIDELY
AVAILABLE, RESOLUTION THE NEED FOR FREQUENTLY REPRODUCTION
ENTIRELY? AND WHAT ABOUT THE POSSIBILITY
OF ROUTINE COGNITIVE AND PHYSICAL SUPER-ENHANCEMENTS AND
HYBRIDIZATION? WHETHER THAT ATTENUATE THE
BIOLOGICAL RELATIONSHIP THAT PARENTS AND OFFSPRING FEEL FOR
ONE ANOTHER? WILL IT MEAN WE’RE CLOSER TO
EACH OTHER AND FURTHER AWAY FROM ONE ANOTHER IN A WAY THAT
DISRUPTS THE SEEMING IMPERATIVE OF THE NUCLEAR FAMILY AND THE
URGE TO REPRODUCE? SO IF ANY OF THESE THINGS COME
TO PASS, WHAT WILL THEY MEAN TO GENDER REPRODUCTION AND FAMILY,
AND WHAT WILL THEY DO TO REGSES A — RELATIONS AMONG THE HAVES
AND HAVE NOTS AND IN GENERAL, WILL A BIOLOGICAL FAMILY-BASED
REPRODUCTIVE DRIVE STILL EXIST AND HOW WILL IT BE REALIZED?
WHAT WILL WE VALUE AND LIVE A GOOD LIFE IF THE STAGES OF
REPRODUCTIVE AND NON-REPRODUCTIVE LIFE COURSE ARE
PHASED OUT AND WE ARE AUGMENTED AND OUR CHILDREN SELECTED, FOR
WHAT WILL WE SEEK IN INDIVIDUALITY, WORTH,
COMPETITION AND COMPASSION? IF THERE ARE TWO THINGS THAT THE
HISTORY OF REPRODUCTIVE TECHNOLOGIES HAS TAUGHT US THAT
T IS THAT THEY ARE ALWAYS ALREADY STRATIFIED AND THAT
REPRODUCTION ALWAYS ALREADY STANDS IN THINGS THAT GO FAR
BEYOND THE BIOLOGICAL FACTS OF THE MATTER AND A MOM OF
INDIVIDUAL REPRODUCTIVE CHOICE. I SHOULD EMPHASIZE THAT I DON’T
ONLY SEEK GLOOM AND DOOM. I’M VERY EXCITED BY MANY OF
THESE DEVELOPMENTS. I SEE GREAT PROMISE, FOR
EXAMPLE, TO MANY KINDS OF ASSISTIVE TECHNOLOGIES AND I
LOOK FORWARD ENORMOUSLY TO THE DAY WHEN NATURALIZED MODELS OF
COGNITIVE AND BODILY WORTH ARE DISRUPTED BEYOND RECOGNITION.
BUT IT WILL TAKE AN ENORMOUS AND CHECKSTIVE ACT OF WILL TO —
COLLECTIVE ACT OF WILL TO SCALE THESE INDUSTRIAL REVOLUTION,
STEER THEM TOWARD RATHER THAN AWAY FROM THRIVING, PLANETARY
AND HUMAN FUTURES AND TO TOWARDS RATHER THAN AWAY FROM CURIOSITY
DRIVEN SCIENCE AND JUSTICE FOR ALL.
IF WE DON’T REMEMBER OUR HISTORIES AND IF WE DON’T DREAM
OF BETTER FUTURES, WE ARE DOOMED TO GET CARRIED ALONG BY THE
SELECTIVE PRONATE TALISMS AND OTHER TECHNOLOGICAL DIVIDES WE
INHERIT. PLEASE JOIN ME IN THIS STRUGGLE
AND THANK YOU FOR YOUR ATTENTION.
[ APPLAUSE ]>>ATTENTION.
[ APPLAUSE ]>>OKAY, BECAUSE OF THE TIME, I
PROPOSE WE HAVE OUR SEVENTH INNING STRETCH NOW, SO GO AHEAD
AND TAKE A BRIEF BREAK AND WE’LL

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