Should we engineer a world without disability? | Doha Debates Town Hall
OF THE WORLD INNOVATION SUMMIT FOR HEALTH FOR HEALTH IN QATAR. THANK YOU SO MUCH FOR JOINING US FOR THIS IMPORTANT CONVERSATION ABOUT HEALTH, MEDICINE, INDIVIDUAL CHOICE AND THE IMPLICATIONS OF BREATH-TAKING GENETIC TECHNOLOGY AVAILABLE TO US EVEN TODAY. MOST IMPORTANTLY, THIS CONVERSATION IS ABOUT THE FUTURE THAT WE WANT AND THE FUTURE THAT WE NEED. WE'RE TALKING ABOUT BIOETHICS AND WHAT MAKES A LIFE WORTH LIVING. WE'RE ASKING THE QUESTION:
SHOULD WE ENGINEER A WORLD WITHOUT DISABILITY? ON STAGE I'M JOINED BY STUDENTS AND YOUNG PEOPLE FROM UNIVERSITIES ACROSS QATAR AS WELL AS THE DOHA DEBATES AMBASSADOR PROGRAM. YOU'RE ALL WELCOME. LIKE MANY OF YOU HERE, I'M HERE TO LEARN AND THIS PLACE AND THIS SPACE THAT WE'RE CREATING IS OPEN FOR DIALOGUE TO EVERYBODY. NOW, THROUGHOUT THIS TOWN HALL, I'LL BE COMING TO EACH AND EVERY ONE OF YOU, HOPEFULLY AS MUCH AS I CAN TO GET YOUR CONTRIBUTIONS SO HAVE THEM READY. BEFORE WE MEET OUR TWO EXPERT S, I WOULD LIKE TO INTRODUCE YOU TO MY CO-MODERATOR FOR THIS TOWN HALL, DR. VICTOR PINEDA. DR. PINEDA IS AN INTERNATIONALLY ACCLAIMED SCHOLAR ON DISABILITY STUDIES. HE'S A POLICY ADVISOR TO GOVERNMENTS
AND COMPANIES ALL OVER THE WORLD. NOW, WE WILL BE TALKING ABOUT SOME EMOTIONALLY CHARGED ISSUES IN THE NEXT HOUR OR SO. AND DR. PINEDA WILL HELP
GUIDE TODAY'S CONVERSATION. DR. PINEDA. Dr. Victor Pineda: THANK YOU SO MUCH, NEL. THE STARTING POINT OF THIS CONVERSATION IS UNDERSTANDING BIOETHICS. NOW, THIS IS A WORD WITH
BIG IMPLICATIONS AND IT RAISES QUESTIONS ABOUT MEDICINE, GENETIC TECHNOLOGY. THESE CUTTING-EDGE TECHNOLOGIES DIRECTLY AFFECT PEOPLE LIKE ME AND HAVE A HUGE IMPACT ON THE FUTURE OF THE DISABILITY COMMUNITY. THIS IMPACT CAN HAVE A DRAMATIC EFFECT ON THE WAY SOCIETY ACTS. TODAY'S DISCUSSION HAS TECHNOLOGY RELATED TO GENETIC ENGINEERING. NOW, THIS MEANS THAT THIS TECHNOLOGY CAN CHANGE CERTAIN GENETIC TRAITS THAT SOME PEOPLE SEE AS DEFECTS OR UNDESIRABLE TRAITS. AT ONE END OF THE SPECTRUM
, A VIEW BASICALLY SAYS WE HAVE A MORAL OBLIGATION TO USE TECHNOLOGY TO ELIMINATE TRAITS IN THE GENE POOL THAT LEAD TO SUFFERING. THE OTHER SIDE OF THE STORY SAYS THAT WE CANNOT ALLOW OR PER PERPETUATE THAT THESE TECHNOLOGIES BASICALLY COMPLETELY ERASE DISABILITY FROM THE HUMAN GENOME, THAT WE CAN SOMEHOW STANDARDIZE OUR FUNCTIONING TO ONE SORT OF IDEAL TYPE OF PERSON. SO PERHAPS THE BEST QUESTION TO START FOR OUR GUESTS, THEIR AUDIENCE, THEIR PERSPECTIVES ABOUT THIS ESSENTIAL QUESTION: WHAT SHOULD WE DO WITH THIS TECHNOLOGY? AND SHOULD WE USE IT OR NOT? Nelufar Hedayat: THANK YOU, DR. PINEDA. WHAT SHOULD WE DO WITH THIS TECHNOLOGY? SHOULD WE USE IT OR NOT? IT'S TIME TO INTRODUCE OUR TWO EXPERTS. HER EXCELLENCY VIVIAN DE TORRIJOS IS A DISABILITY ADVOCATE AND THE FORMER FIRST LADY OF PANAMA. I WOULD LIKE TO GO TO HER FIRST AND THEN WE WILL DID TO DR. MOHAMMED GHALY WHO
IS AN ISLAMIC AT HBKU. FIRST TO YOU, YOUR EXCELLENCY. I WANT TO ASK, YES OR NO, SHOULD WE ENGINEER A FUTURE WITHOUT DISABILITY? AND WHY? H.E. Vivian de Torrijos: WE SHOULD USE TECHNOLOGY FOR A BETTER LIFE. WE SHOULD USE TECHNOLOGY TO GIVE PEOPLE DAYS OF PROSPERITY. WE SHOULD USE TECHNOLOGY WHEN IT'S A DECISION MADE BY THEIR OWN. YOU HAVE THE TOOL. YOU HAVE
IT AVAILABLE. IT'S YOUR CHOICE TO USE IT OR NOT. IF YOU HAVE IT AND YOU USE IT, IT'S NOT -- IT'S NOT DANGEROUS. YOU SHOULD USE IT FOR THE BEST. IT'S GOOD THAT WE'RE DISCUSSING THIS THEME NOW IN 2022 BECAUSE TEN YEARS AGO WE WERE NOT ABLE TO DISCUSS IT. NOW WE HAVE A DISCUSSION AND NOW WE HAVE TOOLS TO DO IT . DISABILITY,
IT'S A TERM THAT FOR YEARS WAS VERY NEGATIVE. AND IT HAS STARTED TO CHANGE. DISABILITY IS JUST A WAY OF BEING. SO YOU CHOOSE HOW YOU WANT TO BE. SO YOU HAVE TECHNOLOGY TO CHANGE IT. YOU USE IT.
BUT IT'S YOUR CHOICE. BUT IF YOU HAVE IT AND IT'S NOT DANGEROUS, WHY NOT? Nelufar Hedayat: THANK YOU SO MUCH, YOUR EXCELLENCY, FOR THOSE OPENING REMARKS. DR. GHALY, I WANT TO COME TO YOU NEXT. YOU ARE A RENOWNED ISLAMIC BIOETHICIST. SHOULD
WE USE THESE TECHNOLOGIES TO REDUCE OR EVEN ELIMINATE DISABILITY FROM OUR FUTURE? Dr. Mohammed Ghaly: THANK YOU SO MUCH. AND THANKS FOR HAVING ME HERE. JUST FOR THE SAKE OF CLARITY, YES, I'M A BIOETHICIST AND THIS IS MY PROFESSION NOW. BUT MY FIRST BOOK, WHICH WAS MY PH.D. DISSERTATION, WAS ON ISLAM AND DISABILITY. SO THIS IS THE
GROUP THAT I WROTE ABOUT AS THE FIRST KICK-OFF IN MY CAREER. I'M PROUD OF IT. AND IT'S ALWAYS GREAT PLEASURE TO BE WITH THE PEOPLE THAT I WRITE ABOUT. IT'S ALWAYS A SOURCE OF PLEASURE, AND I ENJOY IT. AS FOR YOUR QUESTION, WE USE TECHNOLOGY FOR THE NOBLE GOAL OF MINIMIZING PEOPLE'S SUFFERING. THIS CAN BE FOR REDUCING WHAT WE CALL -- OR WHAT SOME WOULD AGREE UPON IS DISABILITY OR CONDITION, BUT CAN BE FOR OTHER THINGS. AND SOMETIMES
DISABILITY IS NOT A SOURCE OF SUFFERING. THEN WE DON'T USE TECHNOLOGY TO DO THIS. OTHERWISE, IT WILL BE JUST AN EXAGGERATION. SO DEPENDING ON WHAT WE MEAN BY DISABILITY, IS DISABILITY A TYPE OF SUFFERING? I THINK THIS CHANGES FROM COUPLE TO COUPLE, FROM PERSON TO PERSON, FROM SOCIETY TO ANOTHER. SO THAT'S ONE THING. AND THE SECOND THING IS THE
TECHNOLOGY ITSELF. WE NEED TO ALSO DECIDE WHAT TECHNOLOGY, THE SAFETY, EFFICACY OF IT , AND HAVING WHAT WE CALL THE OBJECTIVES OF MEDICINE, THE OBJECTIVE SHOULD BE A GOAL. AND WE SHOULD BE SURE THE MEANS WE ARE USING GETS US TO THAT GOAL. Nelufar Hedayat: THANK YOU FOR THE OPENING REMARKS AND CLARIFYING YOUR BACKGROUND AND THE CONTEXT. I'M HOPING THAT A LOT OF PEOPLE IN THE ROOM HERE CAN DRAW FROM THAT. I WANT TO
GET SOME AUDIENCE REACTIONS TO WHAT'S JUST BEEN SAID. AND I WANT TO COME TO YOU, INA CASTRO, FIRST. YOU SAT THERE. YOU GO TO THE UNIVERSITY OF CALGARY IN QATAR AND YOU ARE A DOHA DEBATES AMBASSADOR. WHAT ARE YOUR VIEWS ON WHAT YOU JUST HEARD? Ina Castro: I'M SUPPORTING BOTH THE GOALS OF THE INDIVIDUALS FROM THE DISABILITY COMMUNITY AND ALSO MEDICAL SCIENTISTS BECAUSE BOTH HAVE THE COMMON GOAL OF IMPROVING QUALITY OF LIFE AND DIMINISHING SUFFERING. HOWEVER, IT IS IMPORTANT TO
NOTE THAT GENETIC ENGINEERING COULD CAUSE THAT CERTAIN EXCLUSION FROM THE START OF THE CONCEPTION. THIS IS WHY I'M A FIRM BELIEVER THAT IF THERE ARE WAYS WE CAN USE SUPPORTIVE REHABILITATION AND ALSO MEDICAL ASSISTIVE TECHNOLOGIES, THAT COULD BE ANOTHER WAY THAT WE COULD EXPLORE AND HAVE CONVERSATIONS ABOUT THAT. Nelufar Hedayat: A LOT OF NODDING HEADS ACTUALLY HERE IN THE AUDIENCE. I'M GETTING A
SENSE THAT ACTUALLY A FEW PEOPLE AGREE WITH YOU. I WANT TO COME TO MARIAH ARIF NEXT. YOU ARE A MEDICAL STUDENT AT QATAR UNIVERSITY. YOU ARE A STUDENT OF THE QATAR MEDICAL STUDENT ASSOCIATION. THIS IS SOMETHING YOU HAVE CONSIDERED FOR A WHILE. WHAT DO YOU MAKE OF OUR TWO EXPERTS
HAVE SAID? Mariah Arif: I PERSONALLY BELIEVE THAT GENETIC ENGINEERING IS A GREAT WAY OF REDUCING BURDEN OF GENETIC DISEASES AND GIVING PEOPLE A BETTER QUALITY OF LIFE. HOWEVER, THE DOWNSIDE OF THIS TECHNIQUE COULD BE THAT PEOPLE ARE DESIGNING BABIES SO THAT THEY HAVE CERTAIN DESIRABLE TRAITS, SUCH AS COLORED EYES, WHICH COULD ULTIMATELY REDUCE TOLERANCE AMONG PEOPLE FOR THOSE WHO ARE DIFFERENT FROM THEM. Nelufar Hedayat: ASTHMA, I KNOW I WANT TO COME TO YOU. YOU ARE A MEDICAL STUDENT AND THIS IS SOMETHING YOU THINK ABOUT A LOT. WHAT DO YOU THINK OF WHAT MARIAH
JUST SAID THAT THIS WILL LEAD TO DESIGNER BABIES. Asma Fatima: I WILL AGREE WITH HER. IT ACTUALLY CAN CREATE A MORE LIKE IMPROVEMENT OF BREEDING, WHICH IS KNOWN AS EUGENICS. AND IT IS NOT ACCEPTABLE AS A HUMAN, AS HUMAN RIGHTS. AND ALSO I WOULD AGREE TO THE POINT OF DR. MOHAMMED GHALY, THE TOOLS WE ARE USING FOR THESE TECHNIQUES, AS A MEDICAL SCIENTIST, IT'S NOT 100% SAFE. IT CAN BE TO THE MUTATIONS, NEW
MUTATIONS AND RARE DISEASES WHICH ALL THE MEDICAL FIELD IS UNAWARE. Nelufar Hedayat: THAT'S A GOOD PERSPECTIVE. I WANT TO COME TO YOU NEXT, YOU ARE A PALESTINIAN STUDENT. WHAT IS YOUR REACTION? Speaker: I PERSONALLY DISAGREE WITH THE GENETIC ENGINEERING OR ANY OF THAT CONCEPTS. BUT BECAUSE PERSONALLY AS A PERSON WITH A DISABILITY, I BELIEVE THAT MY LIFE AS IT IS IS WORTH PURSUING, AS IT IS NOW. AND I'M NOT DIFFERENT BECAUSE I
HAVE A DISABILITY. I THINK THE BURDEN IS ON SOCIETY TO CHANGE, TO ACCEPT PERSON WITH A DISABILITY AND NOT TO PLACE THE BURDEN ON THEM. Nelufar Hedayat: TO BE CLEAR, YOU DISAGREE ENTIRELY WITH ANY MEDICAL INTERVENTION OR GENE THERAPY IN THAT SPECIFIC WAY? Speaker: NOT NECESSARILY -- FROM CONCEPTION, YES, DEFINITELY. I DISAGREE COMPLETELY. BUT AS HER EXCELLENCY MENTIONED, IT'S
A CHOICE. GIVE THE PERSON THAT CHOICE. Nelufar Hedayat: HALIMAH, THANK YOU SO MUCH. THIS IS A DIFFICULT CONVERSATION AND THERE'S A LOT OF DIFFERING OPINIONS. I WANT TO GO TO MY CO-MODERATOR, DR. PINEDA HERE. THIS ISN'T THE FIRST TIME SUCH DIFFERING VIEWS HAVE BEEN EXPRESSED, IS IT? Dr. Victor Pineda: THAT'S CORRECT. DISABILITY STUDIES
LITERATURE, YOU GO BACK 20 YEARS TO A FAMOUS DEBATE BETWEEN THE UTILITARIAN PHILOSOPHER PETER SINGER WHO ARGUED EXTREME CASES WAS THE HUMANE THING TO DO, TO NOT ALLOW HUMAN LIFE TO DEVELOP AND CARRY THESE DISABILITIES. HE WENT HEAD TO HEAD WITH A DISABILITY ACTIVIST HARRIET MCBRYDE JOHNSON WHO SAID, NO, A DISABILITY LIFE HAS BEAUTY. I WAS A COLLEGE STUDENT AT THE TIME AND I FELT VERY THREATENED BY SUCH A STATEMENT THAT MY LIFE WASN'T WORTHY, THAT IF I BECAME A FATHER THAT MY CHILD WOULD HAVE MY DISABILITY AND WOULD HAVE A LIFE THAT WASN'T WORTH LIVING. IT WAS A VERY PERSONAL AFFRONT OF THE WAY I VIEWED MY ROLE IN SOCIETY. Nelufar Hedayat: DR. PINEDA,
THANK YOU SO MUCH FOR SHARING THAT CANDID VIEW AND ALSO EXPRESSING YOUR PERSONAL CONNECTION TO THE STORY AND HEARING THAT. I MEAN, THOSE ARE RADICAL VIEWS THAT YOU SAY WERE EXPRESSED BY PROFESSOR SINGER. BEFORE I GET YOUR REACTIONS -- AND I WANT TO GET AS MANY OF THEM AS I CAN, I WANT TO GO TO AYAH ZIYADA FIRST. YOU HAVE A QUESTION PARTICULARLY IN RESPONSE TO THIS, ACTUALLY. YOU ARE A PHARMACIST BY TRAINING, BUT YOU ARE DO A MASTER'S IN GENOMICS AND PRECISION MEDICINE AT HBKU. WHAT IS YOUR QUESTION? Ayah Ziyada: DR. PINEDA, I BELIEVE THAT GERMLINE
GENOME EDITING THAT HAPPENS, WHICH IS GENE EDITING ON THE EARLY EMBRYONIC CELLS OR IN GERM CELLS, THEY ACTUALLY DRIVES US OR ENABLES US FOR SELECTIVE SELECTION AND IT ENABLES ALSO -- OR PROMOTES THE CHOICE OF . SO WHERE DO WE DRAW THE LINE? Nelufar Hedayat: WHERE DO WE DRAW THE LINE WHEN IT COMES TO ACTUALLY WHAT GENES ARE SELECTED FOR, AND AREN'T? FANTASTIC QUESTION, AYAH. I WANT TO GET THE KNOWLEDGE OF OUR EXPERTS, IF I CAN. HER EXCELLENCY, WHERE SHOULD WE DRAW THE LINE? THAN AND I KNOW YOU ARE PERSONALLY CONNECTED TO THIS ISSUE OF DISABILITIES AND SPECIFICALLY HOW THAT SHOULD BE ENACTED FROM MOTHER OR FATHER, THE NEXT GENERATION. PLEASE. H.E. Vivian de Torrijos: WELL, I AM A MOTHER OF A WONDERFUL GIRL WITH DISABILITIES. SHE'S 30.
AND I'M SURE THAT IF THERE WOULD BE ANY TECHNOLOGY THAT WOULD ALLOW ME AS A MOTHER, AND MY HUSBAND AS A FATHER, TO MAKE HER LIFE BETTER , EVEN THOUGH FOR ME, HER DISABILITY IS A BLESSING. AND FOR ME HER DISABILITY IS TOTALLY ACCEPTABLE BECAUSE FOR US SHE IS GREAT THE WAY SHE IS AND THE WAY SHE LIVED AND THE WAY SHE WAS BORN. BUT I KNOW FOR SURE THAT THROUGH HER LIFE, SHE'S EXPERIENCING DIFFICULTIES IN STEP-BY-STEP MATURING BECAUSE OF DISABILITY. SO IF THERE'S SOME TECHNOLOGY THAT WOULD HELP ME AS A MOTHER HELP HER IN HER LIFE, I WOULD DEFINITELY SAY, YES, WHY NOT? IT'S JUST LIKE WHEN YOU ARE -- WHEN YOU ARE -- I AM FAR-SIGHTED AND YOU NEED TO GET A SURGERY BECAUSE YOU NEED TO SEE THE WAY IT IS. BUT THERE IS A BORDERLINE WHEN YOU ARE SOMETIMES AFFECTING -- I DON'T WANT TO SAY GENETICAL. BUT IF YOU ARE AFFECTING -- I DON'T KNOW HOW TO SAY IT.
Nelufar Hedayat: DO YOU MEAN THE GENE POOL OR THE COLLECTIVE OF PEOPLES? H.E. Vivian de Torrijos: EXACTLY, THE COLLECTIVE. THAT'S WHAT I THINK. IF IT'S AFFECTING COLLECTIVELY, THAT'S ONE THING YOU HAVE TO THINK ABOUT TWICE. AND AT THE SAME
TIME, IT'S A DECISION THAT YOU HAVE TO THINK ABOUT THE COLLECTIVE. Nelufar Hedayat: THAT'S REALLY INTERESTING, THE DIFFERENCE BETWEEN MAKING THE DECISION FOR YOURSELF AND MAKING THE DECISION ON BEHALF OF ALL OF US. THAT'S WHAT WE'RE TALKING ABOUT. I'D LOVE TO GET YOU IN AT THIS POINT, DR. MOHAMMED GHALY.
Dr. Mohammed Ghaly: THANK YOU. I THINK IT'S NOT ONE LINE, ONE BORDERLINE THAT ARE LINES THAT WE NEED TO KEEP IN MIND. ONE OF THEM IS THIS, DISTINGUISHING BETWEEN THE INDIVIDUAL CHOICE AND THE COLLECTIVE POLICY. SO I DON'T THINK IT'S GOOD THAT WE WILL
HAVE A STATE POLICY SAYING WE WANT TO ERADICATE I DON'T KNOW WHAT. ANOTHER IMPORTANT DETERMINANT IS DECEIVE ING, PERCEPTION THAT GENETICS CAN SOLVE EVERYTHING, WHICH IS NOT THE CASE. AND WE HAVE NOW IMPORTANT WORKS DONE BY GENETICISTS AND PHILOSOPHERS, BOOKS LIKE "WHAT GENES CANNOT DO." WE HAVE GENETIC REDUCTIONISM, GENETIC DETERMINISM. WE THINK THAT OUR GENES CAN MAKE US EVERYTHING, CAN MAKE US STRONG, CAN MAKE US INTELLIGENT, I DON'T KNOW WHAT, WHICH IS NOT TRUE. THE LAST DETERMINANT I WOULD LIKE TO SPEAK ABOUT NOW IS THE MORAL STANDING. SO WE HAVE THE MORAL STANDING OF
THE EMBRYO BEFORE IMPLEMENTATION, AFTER IMPLEMENTATION, AFTER BREATHING IF WE THINK ABOUT ISLAM. THESE BEINGS ARE NOT THE SAME, AND THEY DON'T HAVE THE SAME MORAL STANDING. SO THERE IS A KIND OF NUANCE ED POSITION DEPENDING ON HOW WE DETERMINE THE MORAL STANDING OF THE EMBRYO. ONCE WE SAY THE MORAL STANDING
IS NOT THE MORAL STANDING OF A HUMAN BEING, THAT MEANS WE HAVE MORE SPACE TO DO INTERVENTIONS. IF IT IS A HUMAN BEING, THEN WE HAVE LESS. IF THIS HUMAN BEING GIVES CONSENT, IF THIS HUMAN BEING IS STILL A FETUS, THIS FETUS CANNOT GIVE CONSENT AND WE WILL DO GENETIC INTERVENTION WITHOUT CONSENT. UNIVERSAL, CANNOT BE CHANGED. WILL AFFECT GENERATIONS. WE DON'T KNOW IF THESE GENERATIONS WILL BE HAPPY WITH W HAT WE HAVE DONE OR NOT. SO THERE WE NEED TO BE MORE CAUTIOUS. Nelufar Hedayat: SO WE NEED TO
BE MORE CAUTIOUS. THERE ARE MORE THAN ONE LINE, THE IMPOR TAN T AND IMPACTFUL STORY FROM DR. PINEDA. AT THIS POINT, I WANT TO OPEN THE DISCUSSION TO ALL OF YOU HERE. SO PLEASE RAISE YOUR HAND OR INDICATE TO ME IN ANOTHER WAY SO THAT I KNOW THAT YOU HAVE A COMMENT TO MAKE. KENAN HAS RAISED HIS HAND ABOUT FIVE TIMES SO I KNOW YOU ARE VERY KEEN TO GET IN ON THIS. AND I WANT TO HEAR FROM YOU. WHAT DO YOU THINK OF
WHAT'S BEEN SAID SO FAR? Kenan Al Akad: PEOPLE ARE OVERLY WORRIED ABOUT -- IS MY MIC WORKING? Nelufar Hedayat: GO AHEAD. Kenan Al Akad: PEOPLE ARE OVERLY WORRIED ABOUT AFFECTING THEIR BABIES AND THEY'RE AFRAID OF DECREASING DIVERSITY IN THE GENETIC POOL. BUT WE ALREADY DO THAT. ONCE YOU CHOOSE A PARTNER, YOU PASS DOWN YOUR GENES AND HIS GENES TO HIM. SO WE ARE ALREADY DOING THIS. WE'RE JUST DOING IT IN A DIFFERENT WAY. WE ARE FURTHERING IT. SO GENES GET
PASSED DOWN. AND DR. GHALY SAID YOU THINK DISABILITY IS OKAY IF IT'S CAUSING SUFFERING. HOW DO WE KNOW? I.Q. IS HIGHLY GENETIC. AND HIGH I.Q. IS THE BEST PREDICTOR FOR ACADEMIC SUCCESS. WHAT IF WE EDIT FOR HIGH I.Q.?
WE HAVE AVERAGE I.Q. WHICH IS NEEDED FOR FUNCTIONING, GETTING A UNIVERSITY DEGREE, GETTING A JOB. WE HAVE LOW I.Q. WHICH QUALIFIES FOR LEARNING
DISABILITY. WE HAVE I.Q. WHICH MEANS SOMEONE IS GIFTED. HOW DO WE CHOOSE? Nelufar Hedayat: I WILL LET YOU RESPOND SINCE IS THAT QUESTION WAS RESPONDED TO DIRECTED TO YOU SPECIFICALLY. Dr. Mohammed Ghaly: WE ARE
MORE OR LESS FALLING INTO THIS. GENES DO NOT DETERMINE EVERYTHING. WE HAVE CASES IN ISLAM AND OTHER RELIGIOUS TRADITIONS AS ARE, WE ARE COMPOSED OF MORE THAN GENE S WE NEED TO STRENGTHEN THE SOUL, NOT ONLY THE BODY. OUR INTELLIGENCE IS NOT ONLY DETERMINES BY OUR GENES, IT IS NOT ONLY HEREDITARY AND GENETIC. WE HAVE EP GENETICS. EVEN OUR GENES GET STREAMLINED
AND DIRECTED B Y ENVIRONMENTAL FACTORS, BY INTERPLAY OF DIFFERENT FACTORS IN OUR LIFE. SO, YES, AS LONG AS WE HAVE, AS I SAID, SAFETY AND EFFICACY ABOUT THE GENETIC INTERVENTION AND THE PEOPLE CHOOSE THIS, THEY WANT TO HAVE THIS, WE GIVE THEM THE OPPORTUNITY TO DO THAT. BUT THIS DOESN'T MEAN THAT GENETICS WILL SOLVE EVERYTHING . WE CONTINUE MINIMIZING THE WARS IN LIFE BY OUR GENES, GETTING BETTER JOBS BY OUR GENES, WE CANNOT GO THAT FAR, TO MY MIND. Nelufar Hedayat: TO YOUR MIND,
THANK YOU SO MUCH. I WANT TO BRING IN JANNA AT THIS POINT. Janna Mawa: I AGREE WITH A LOT OF BUT I WANT TO GO BACK TO GENETIC ENGINEERING TO REMOVE DISABILITIES, RIGHT? SO IN MY TIME AS A VOLUNTEER FOR A DISABILITY AWARENESS CAMPAIGN, I'VE NOTICED THAT THERE'S GENETIC DIVERSITY AND THERE IS DIVERSITY WITHIN DISABLED PEOPLE, RIGHT? SO WHEN WE'RE TALKING ABOUT GENETIC ENGINEERING, WE HAVE TO MAKE SURE THAT WE START WITH DRAWING THE LINE NOW RATHER THAN LATER ON TO MAKE SURE WE DON'T LEGALIZE UNNECESSARY STUFF AND DON'T DRIVE DISABLED PEOPLE TO BACK-DOOR MEDICAL OPERATIONS. Nelufar Hedayat: I'M HEARING -- I'M HEARING REALLY IMPORTANT NOTES ABOUT CLASS , ABOUT ECONOMICS, ABOUT WEALTH, OPPORTUNITY AND ACCESS. I WANT THE ROOM TO START THINKING
ALONG THOSE LINES AND LET ME KNOW WHAT YOUR EXPERIENCE AND WHAT YOUR THOUGHTS ARE. SO GRAB THE MIC, BUT FATEMA HUBAIL, I WANT TO COME TO YOU NEXT. Fatema Hubail: I WANT TO START OFF WITH THE IDEA I'M STANDING IN FRONT OF YOU RIGHT NOW AS A WOMAN, AS A BAHRANIAN FROM A SPECIFIC CLASS, A SPECIFIC EDUCATIONAL BACKGROUND AND ALSO AS A PERSON WITH AN INVISIBLE DISABILITY AS THE LITERATURE WOULD SUGGEST. SO HAVING A MENTAL ILLNESS THROUGHOUT MY ENTIRE LIFE HAS SITUATED ME IN A SPECIFIC SPACE SOCIALLY WHERE MY WORTH IS DETERMINED IN A SPECIFIC MANNER, MY GENDER DETERMINES MYSELF IN ANOTHER MANNER, MY CLASS DETERMINES ME IN ANOTHER MANNER. WHEN WE ARE
TALKING ABOUT GENETIC ENGINEERING, THIS SPECIFIC CONVERSATION OVER HERE, WE'RE ALSO TALKING ABOUT A PRIVILEGED SPACE. WHEN WE'RE TALKING ABOUT GENETIC ENGINEERING, WE'RE NOT TALKING ABOUT THE ABILITY TO HAVE SOMEONE WHO HAS A DISABILITY IN A VILLAGE IN SRI LANKA ACCESSING THIS SPECIFIC TECHNOLOGY VERSUS SOMEONE WHO ACTUALLY GOES TO GERMANY AND SPENDS A LOT OF MONEY AND CAN ACCESS THIS TECHNOLOGY. IT'S AN INCREDIBLY PRIVILEGED SPACE. ADDITIONALLY, IT'S THE MEDICAL COMMUNITY ALSO RAISING -- PRESENTS ITS AUTHORITY IN TERMS OF DETERMINING PEOPLE WITH DISABILITIES AS PEOPLE WITH A DEFICIT, PEOPLE WHO ARE SUFFERING, AND WE ARE PERPETUATING THIS MODEL. THIS IS THE LINE WE CANNOT CROSS. Nelufar Hedayat: DO YOU THINK WE ARE PERPETUATING THAT MODEL HERE IN THIS SPACE? DO YOU AGREE WITH THE GENERAL DIRECTION WE ARE GOING IN? Fatema Hubail: IN AN EXTENT WE ARE BECAUSE WE NEED TO FOCUS ON THE SOCIAL IMPLICATIONS OF DISABILITY RATHER THAN USING THE TERMS "DEFICIT SUFFERING." Nelufar Hedayat: YOUR EXCELLENCY AGREES WITH YOU. SELWIN, I WANT TO COME TO YOU
NEXT. WE HAVE BEEN TALKING A LOT ABOUT EITHER GETTING RID OF DISABILITIES COMPLETELY OR ENGINEERING A REALITY IN WHICH IT'S NO LONGER SOMETHING THAT WE HAVE. WHAT DO YOU WANT TO SAY? Selwin Saju: SO AS A BLIND PERSON, TILL NOW I'M NOT FACING MUCH DIFFICULTY BECAUSE MY PARENTS, MY TEACHERS, AND MY FRIENDS ARE HELPING ME. BUT IN MY NEAR FUTURE, NEXT YEAR I'M GRADUATING TO A UNIVERSITY. I'M WORRIED ABOUT MY FUTURE BECAUSE I DON'T KNOW
HOW AM I GOING TO STUDY MY FUTURE. TILL NOW, I WAS DEPENDING ON BRAILLE TEXTBOOKS, MY MOM'S RECORDINGS . I CAN'T DEPEND ON THAT MY ENTIRE LIFE. SO I'M NOT SURE WHAT I'M SUPPOSED TO DO IN MY FUTURE. SO THROUGH THIS, I WOULD LIKE TO SAY THAT IF GENETIC ENGINEERING CAN CURE VISUALLY IMPAIREDNESS WITHOUT DAMAGING MY LIFE , WITHOUT KILLING ME, THEN I WOULD AGREE THAT. Nelufar Hedayat: FANTASTIC. OKAY. THAT'S AN INTERESTING POINT. I'M GOING TO
PROVIDE IN SOMEONE WHO DISAGREES WITH YOU ALMOST COMPLETELY. SO WE'RE GOING TO PASS THE MIC OVER TO MOZA. MOZA, WHAT DO YOU VIEW ON THIS? Moza Al-Sulaiti: I DON'T DISAGREE. Nelufar Hedayat: DO YOU THINK
IF YOU COULD REMOVE DISABILITIES, THAT YOU WOULD ABSOLUTELY DO SO UNDER ALL CIRCUMSTANCES? OR DO YOU THINK THAT ACTUALLY THERE'S A DIFFERENT WAY? Moza Al-Sulaiti: THERE IS A DIFFERENT WAY, BUT NOT ALL SICKNESS HAS THAT, LIKE, MEDICATION AND SURGERY IES. BUT AT THE SAME TIME, I DISAGREE AND I AGREE. Nelufar Hedayat: TELL ME MORE. Moza Al-Sulaiti: I DON'T KNOW. Nelufar Hedayat: WHAT ABOUT FROM YOUR OWN PERSONAL EXPERIENCE AS A PERSON WITH A DISABILITY. I THINK THE CONVERSATION WE WERE HAVING IS IT CHANGED YOUR LIFE BUT IN MORE THAN A PHYSICAL WAY, RIGHT? IT CHANGED YOUR LIFE IN YOUR ATTITUDE AND IN YOUR VIEWS. AND I WANT
TO DRAW THAT OUT, IF I CAN. Moza Al-Sulaiti: YEAH, I HAVE THIS DISABILITY CALLED SEIZURES, EPILEPSY. SOMETIMES I CAN -- SOMETIMES I'M HAPPY. SOMETIMES NO ONE CAN UNDERSTAND ME BECAUSE PEOPLE THINK I'M ALL RIGHT. ACTUALLY I'M NOT. Nelufar Hedayat: BUT THAT'S AN IMPORTANT VIEWPOINT THAT FOR SOME OF US SITTING IN THIS ROOM, IT'S IMPOSSIBLE FOR US TO TRULY UNDERSTAND THE OTHER'S PERSPECTIVE. I THINK, FATEMA, YOU WERE GOING IN ON THIS. I WANT TO GO TO AN ONLINE POLL. BUT BEFORE I WANT TO COME TO OTHERS IN THE
ROOM. ADIL. ADIL. Speaker: AS A MASTER STUDENT IN GENOMICS AND PRECISION MEDICINE, I THINK HUMAN GENETIC ENGINEERING IS IMMINENT. TWO YEARS AGO TWO
BRILLIANT SCIENTISTS WON THE NOBEL PRIZE FOR CRISPR 9 AND YESTERDAY ANOTHER GENETICIST WON THE NOBEL PRIZE. I THINK IT'S UNDER WAY AND WE HAVE TO BE READY. AND WHATEVER PATH WE TAKE HAS TO BE PRUDENT AND A CALCULATED ONE. Nelufar Hedayat: MARYAM, WHAT
DO YOU WANT TO SAY? Maryam Al Ibrahim: I THINK WHEN IT COMES TO GENETIC ENGINEERING, THE PERSON SHOULD HAVE A CHOICE BECAUSE IT DOES AFFECT THE PERSON IN THE LONG RUN. SO I THINK THE PERSON HIMSELF OR HERSELF SHOULD HAVE THE CHOICE AND NO ONE SHOULD DECIDE THAT FOR HIM BECAUSE IN THE END, SHE OR HE WILL BE THE ONE WHO WILL END UP BEARING THE CONSEQUENCE OF SOMEONE ELSE. Nelufar Hedayat: WHAT DO YOU MAKE OF THE POSSIBILITY OF A PARENT MAKING THAT DECISION FOR THE CHILD? Maryam Al Ibrahim: FOR ME PERSONALLY, I THINK THE PARENT SHOULD WAIT UNTIL THE CHILD OR THE KID IS ABLE TO VOICE HIS WANTS OR NEEDS BECAUSE IN THE END, THE KID WILL HAVE TO LIVE ON WITH THIS CONSEQUENCE.
Nelufar Hedayat: THANK YOU SO MUCH. OVER THERE TO THE BACK OF THE ROOM. Speaker: YEAH, WHEN IT COMES TO THE CONCERN OF, YOU KNOW, THE BOUNDARIES AND, INDEED, THE CASE OF CHOICE, WHAT I'M WORRIED ABOUT WITH REGARD TO USING GENETIC ENGINEERING IS THAT IF YOU LOOK AT HUMAN SOCIETY OVER THE YEARS, THERE IS A VERY REAL POSSIBILITY THAT ONCE SOMEONE HAS THE ABILITY TO USE SOMETHING THAT IS THIS IMPORTANT AND POWERFUL, THERE'S A CHANCE IT WILL OVERRUN SOCIETY AND THERE'S A CHANCE THERE WILL BE A PROBLEM WHERE PEOPLE COULD VERY WELL BE USING GENETIC ENGINEERING BEYOND REHABILITATION. Nelufar Hedayat: HOW DO WE LIMIT THAT? WE'RE GOING TO GET ON TO THAT SOON. WHAT DOES A
FAIR AND EQUITABLE WAY OF DOING THIS LOOK LIKE? BUT BEFORE THAT, WE'RE GOING TO COME TO YOU, FATIMA. Fatima Nazar: I THINK IT'S REALLY IMPORTANT TO UNDERSTAND WHAT MY FRIEND JUST CONVEYED, THAT IT'S THE CHOICE OF THE CHILD IS GOING TO COME INTO THE WORLD, WHETHER OR NOT HE'S GOING TO HAVE TREATMENT BUT THEN I WORK WITH PEDIATRICS AND I'VE SEEN THAT THERE ARE DISEASES WHERE YOU CANNOT -- THERE'S NO WAY THAT THE CHILD CAN CONVEY TO YOU HIS FEELINGS OR HIS OPINION. IN THAT CASE, YOU DO HAVE TO DECIDE AND YOU DO HAVE TO TAKE ACTION AT THAT MOMENT WHAT YOU'RE GOING TO DO WITH THE CHILDREN. Nelufar Hedayat: I THINK AISHA WANTS TO GET IN ON THIS. THERE'S A LOT GOING ON AND A LOT OF STRINGS TO BE PULLED. I'M TRYING TO GET TO EVERYONE AS MUCH AS POSSIBLE.
I THINK FOR NOW, WE'RE GOING TO GO TO AISHA AND THEN BACK TO YOU, DR. PINEDA. Aisha Alkhulaifi: OKAY. SO I WOULD JUST LIKE TO SAY THAT THE POINT THAT HAS BEEN RAISED ABOUT IT BEING THE INDIVIDUAL'S CHOICE, USUALLY IT'S NOT POSSIBLE BECAUSE FOR MOST OF THESE DISEASES, IF YOU DON'T GET THEM AT THE EARLY START, AT THE EMBRYONIC STAGE, IT'S USUALLY NOT POSSIBLE TO FIX IT AFTERWARDS. PERSONALLY WHAT I BELIEVE BASED ON WHAT SELWIN JUST SAID, I DON'T BELIEVE THAT OUR WORLD IS READY TO LET GO OF PEOPLE WITH DISABILITIES. I DON'T THINK AT THIS STAGE WE ARE ABLE TO DO
THAT. WE DON'T HAVE THE RESOURCES. WE DON'T HAVE -- THE COST, EVERYTHING, IT'S JUST, PERSONALLY, I DO NOT BELIEVE WE ARE AT THE STAGE WHERE WE CAN DO THAT. AND IT WOULD BE GREAT, IT WOULD BE AMAZING IF, SAY, 20 YEARS FROM NOW WE WOULD REACH THAT STAGE. BUT WITH OUR MINDSET, WITH THE
COST OF LIVING, WITH EGG, EVERYTHING, I DON'T BELIEVE WE ARE THERE YET. Nelufar Hedayat: DR. PINEDA. Dr. Victor Pineda: THANK FOR YOUR POINT OF VIEW. I THINK THIS CONVERSATION IS MISSING THREE FUNDAMENTAL POINTS WHICH I THINK WILL HELP US MOVE FORWARD. FIRST IS GENETIC TESTING WILL NOT ELIMINATE ALL TYPES OF DISABILITIES. SO WE'LL STILL HAVE THE GROUP OF PEOPLE THAT ARE EVEN MORE MARGINALIZED, MORE SEPARATED BECAUSE THEY ARE VIEWED AS LESS VALUED BY THE GENERAL POPULATION. NUMBER TWO, THE IDEA OF COSTS,
WHO'S TO SAY THAT MY LIFE COSTS MORE OR HAS A BIGGER BURDEN IN SOCIETY WHEN I CAN CREATE INTERVENTIONS LIKE STEPHEN HAWKIN S, INCREDIBLE HUMAN BEINGS. THIS IS A COST THAT WE CAN ENRICH SOCIETY. THIS POINT IS FUNDAMENTAL, THIS IDEA THAT THE MEDICAL ESTABLISHMENT PERCEIVES THIS QUESTION ONLY AS A DEFICIT OF AN INDIVIDUAL. SO IF THE ENVIRONMENT IS UNFIXED AND THE ENVIRONMENT IS UNJUST , THEN THE SUFFERING MIGHT BE HIGH. HOWEVER, THAT PARENT THAT SEES AN ENVIRONMENT THAT CAN CHANGE, WITH ATTITUDES THAT CAN BE MORE INCLUSIVE AND A SPACE WHERE THEY CAN GROW AND EVOLVE, THEN THE SUFFERING WILL BE MUCH LESS AND THE ACCEPTANCE OF THIS QUALITY OF NATURAL HUMAN EXPRESSION WOULD BE VALUED INSTEAD OF SEEN AS LESS DESIRABLE OR AS A BURDEN.
THANK YOU. Nelufar Hedayat: THANK YOU SO MUCH, DR. PINEDA. I WANT YOU TO RAISE YOUR HANDS AFTER I TELL YOU THE RESULTS OF THE POLL BECAUSE THAT WAS JUST SUCH IMPORTANT INSIGHT INTO WHERE THIS DISCUSSION IS . INJUSTICE IS AN IMPORTANT FACET OF THIS DISCUSSION. BUT FOR NOW, THIS IS DOHA DEBATES TOWN HALL AND WE ARE DEEPLY GRATEFUL TO ALL THE CONTRIBUTIONS, BOTH FROM OUR EXPERTS AND FROM OUR STUDENTS HERE AND MY CO-MODERATOR. BUT THIS IS A CONVERSATION WE HAVE BEEN HAVING ON TWITTER AND ON OUR SOCIAL MEDIA CHANNELS ACROSS DOHA DEBATES. SO MUCH SO THAT WE
PUT OUT A POLL ON TWITTER, AND WE ASKED A VERY IMPORTANT QUESTION ABOUT CONTEXT. IT'S ALL VERY WELL AND GOOD SITTING IN THIS ROOM WITH LIKE-MINDED PEOPLE OR THOSE WHO DISAGREE WITH US COURTEOUSLY AND POLITELY AND THINK DIFFERENTLY THAN US AND WE ENCOURAGE THAT. BUT THE WORLD IS A BIG AND VARIED PLACE AND NOT EVERYBODY IS GOING TO BE COMING ALONG ON THIS JOURNEY IN THE SAME WAY THAT WE WANT TO. SO BEFORE I GO TO MY EXPERTS, TO PUT THE THINGS THAT WE HAVE SAID INTO CONTEXT, WHAT'S HAPPENING IN CHINA WITH GENETIC ENGINEERING, ARE THERE ANY REGULATIONS. HOW SHOULD WE DO THIS IN A FAIR AND JUST WORLD? I WANT TO GET TO THE RESULTS OF OUR TWITTER POLL. SO WE ASKED:
SHOULD WE REGULATE GENE EDITING? OF THOSE WE ASKED, 15% SAID NATIONAL GOVERNMENTS SHOULD BE IN CHARGE OF GENE EDITING. THE OVERWHELMING MAJORITY, 56.7% SAID THAT IT SHOULD BE AN INTERNATIONAL BODY THAT REGULATES CONTROLS. OKAY. SOME NODDING HEADS THERE -- THAT CONTROLS
GENE EDITING. 20% OF THOSE WE ASKED SAID, I N FACT, IT SHOULD BE THE DISABILITY COMMUNITY ITSELF THAT DECIDES AND REGULATES THESE THINGS. AND IN TERMS OF NO OVERSIGHT NEEDED, ONLY 8% THOUGHT THAT.
I WOULD LIKE TO COME TO YOU FIRST, DR. GHALY. WHAT DO YOU MAKE OF THOSE RESULTS? AND WHO DO YOU THINK SHOULD BE IN CHARGE OF IMPLEMENTING THESE BRILLIANT IDEAS WE'VE COME UP WITH? Dr. Mohammed Ghaly: YES. I THINK GENETIC ENGINEERING OR GENE EDITING,
LIKE ANY OTHER MEDICAL INTERVENTIONS, THEY CANNOT BE UNREGULATED. SO THERE IS NO SUCH THING. IF THERE IS A PHYSICIAN THAT WANTS TO DO A STUDY, EVEN HUMAN RESEARCH -- RESEARCH INVOLVING HUMAN SUBJECTS, YOU NEED TO GO TO THE INSTITUTIONAL REVIEW BOARD AND YOU HAVE TO SAY YES OR NO. THERE IS NO SUCH THING THAT AN U.N. CAN DO WHATEVER HE OR SHE LIKES. I WOULD GO FOR THE INTERNATIONAL GUIDELINES. BUT AFTER GETTING THE INSIGHTS FROM THE NATIONAL AND FROM THE PEOPLE AND FROM THE GROUPS, THE INVOLVED STAKEHOLDERS, DISABILITY COMMUNITIES, OTHERS, PHYSICIANS, NURSES, AND SO ON, UNTIL WE REACH INTERNATIONAL CONSENSUS. WHY? BECAUSE IF WE LEAVE IT TO THE NATIONAL
REGULATIONS, YOU WILL FIND, WHAT I CAN SAY, SOME UNFAIRNESS TO SOME MEDICAL COMMUNITIES. SO WE CAN HAVE IN CHINA MUCH MORE PERMISSIVE SO THE SCIENTISTS THERE CAN DO MUCH MORE THAN THOSE WHO ARE IN EUROPE OR AMERICA OR HERE. SO IT'S UNFAIR. Nelufar Hedayat: BUT WITH LESS REGULATION, THIS IS THE PARTICULAR CONTEXT I WANT TO EXPLORE. Dr. Mohammed Ghaly: IT'S NOT ABOUT MORE OR LESS. THAT WE HAVE FAIR REGULATIONS THAT APPLY TO EVERYONE WHEN IT COMES TO THE SCIENTIFIC RESEARCH. WHATEVER WE WILL AGREE UPON AS
HUMANS IN OUR DISCUSSIONS, IT APPLIES TO EVERYONE. BUT NOT THAT CHINA WILL DO WHATEVER IT LIKES BUT OTHERS WILL HAVE MUCH MORE RESTRICTIONS. THIS IS UNFAIR FOR SCIENTIFIC REASONS. Nelufar Hedayat: HOW CAN WE MITIGATE THAT? Dr. Mohammed Ghaly: BY HAVING
INTERNATIONAL CONSENSUS, INTERNATIONAL BOLDS. Nelufar Hedayat: AT AT THE U.N. LEVEL? Dr. Mohammed Ghaly: W.H.O., STUFF LIKE THIS. Nelufar Hedayat: HER EXCELLENCY VI VIAN DE TORRIJOS, WHAT DO YOU THINK? WHO SHOULD BE IN CHARGE OF REGULATING THIS? H.E. Vivian de Torrijos: DEFINITELY THIS HAS TO COME FROM THE PEOPLE WITH DISABILITIES GROUPS AS THEIR IDEAS AND AS THEY ARE PUT TOGETHER, THEIR CHOICES. IS THIS A PERSONAL
CHOICE AND IT SHOULD BE REGULATED AT THE VERY, VERY TOP LEVEL. BUT IT SHOULD COME AND BE RAISED FROM THE GROUPS OF PERSONS WITH DISABILITIES. Nelufar Hedayat: SO AN INTERNATIONAL BODY, POSSIBLY FROM THE DISABILITY COMMUNITY ITSELF. H.E. Vivian de Torrijos: YES. Nelufar Hedayat: NAWAAL AKRAM, YOU HAVE AN IMPORTANT AND INTERESTING QUESTION TO THIS SPACE WE CREATED SPECIFICALLY WITH REGARD TO THIS. YOU MIGHT HAVE A SOLUTION TO THIS ISSUE. WHAT'S YOUR QUESTION? IF WE CAN JUST PASS THE MIC OVER TO NAWAAL. YES. FANTASTIC. Nawaal Akram: I
WANTED TO BRING IN COULD WE TALK ABOUT SCIENTIFIC IMPROVEMENT AND MEDICAL IMPROVEMENT WITHOUT STIGMATIZING THE DISABILITY COMMUNITY. AND SECOND OF ALL, WITH TECHNOLOGY BEING INVOLVED, AFFECTING THE DISABILITY COMMUNITY THE MOST, SHOULD WE SEEK PROFESSIONAL COMMITTEE OF PERSONS WITH DISABILITIES GUIDING AND MONITORING SUCH TECHNOLOGIES AND SEEING WHAT WOULD THE CONSEQUENCES BE, RIGHT? SO A PROFESSIONAL COMMITTEE OVERLOOKS AT EVERY STAGE AND THEIR INVOLVEMENT IS THERE LEGALLY. AND I WOULD AGREE WITH MY U.N. MOGUL WHERE WE
HAVE A COMMITTEE ENGAGED AT EVERY SI NGLE LEVEL MONITORING SO WE DON'T HAVE A MISUSE OF SUCH TECHNOLOGY. WE HAVE SEEN IN HISTORY WHAT HAPPENS AND TO NEVER REPEAT THAT AGAIN. SO THAT'S IT. Nelufar Hedayat: THANK YOU. NAWAAL AKRAM IS A PRODUCER HERE AT DOHA DEBATES AND SOMEONE I DEPEND ON FOR GREAT ADVICE AND GUIDANCE. BUT I WANT TO HEAR WHAT MY CO-MODERATOR SAYS, DR. PINEDA,
SHOULD WE DEPEND ON AN INTERNATIONAL GOVERN ING BODY LIKE THE WHOA WORLD HEALTH ORGANIZATION OR LEAVE IT UP TO THE DISABILITY COMMUNITY? Dr. Victor Pineda: WE NEED MULTISTAKEHOLDER PARTICIPATION. WE NEED TO LOOK AT WHERE WE'VE COME FROM, RIGHT? SO WE HAVE TO KNOW YOUR HISTORY , CONNECT UPON THAT KNOWLEDGE IN ORDER NOT TO REPEAT IT. EUGENICS IS A VERY RECENT HISTORY . WE SAW WHAT HAPPENS WHEN CERTAIN TRAITS ARE CONSIDERED UNDESIRABLE. WE SAW WHAT HAPPENED WHEN CERTAIN TYPES OF HUMANS ARE OTHERRED. SO WHAT KEY POINT IN THIS CONVERSATION IS NOT TO ONLY DISCUSS THE MEDICAL INTERVENTIONS WITHOUT THE SOCIAL CONTEXT BECAUSE THE SOCIAL CONTEXT WOULD VERY MUCH CREATE THE DECISIONS ABOUT HOW THAT MEDICAL INTERVENTION ACTUALLY BECOMES VALUED OR UNVALUED, WHAT THE TRADE-OFFS CAN BE. SO WE HAVE TO BALANCE
THE SOCIAL CONTEXT ENVIRONMENTS THAT WE'RE BUILDING THAT HAVE THE HUMAN RIGHTS OF THESE HUMAN BEINGS THAT ARE JUST PART OF OUR SOCIETY AND THE MEDICAL ADVANCES AS WELL. THANK YOU. Nelufar Hedayat: THANK YOU, DR. PINEDA. SAMEERA.
SAMIRA. Samira Saati: I AGREE WITH SO MANY THINGS YOU HAVE SAID. THE WAY I SEE THIS PERSPECTIVE THAT YOU ALL HAVE SHARED IS THAT WE ARE TRYING TO DECIDE ON WHETHER THIS PARTY OR THIS PARTY SHOULD HAVE STAKEHOLDER. WHAT YOU SAID IS PERFECTLY ENCAPSULATED, WHERE WE SHOULD RELATE EVERY STAKEHOLDER TO HAVE A POSITION. AND WITH MY PERSONAL EXPERIENCE WITH HAVING CLOSE LOVED ONES AROUND ME HAVING DISABILITIES OR HAVING DIFFICULTY IN CERTAIN ASPECTS OF THEIR LIVES BUT CAN'T BE ACCOMMODATED FOR IN OUR LIVES, GOING BACK TO OTHER DISCUSSIONS ON THE SOCIAL STIGMATIZATION AND HOW SOCIETY WE LIVE IN IS NOT ACCOMMODATING TO MOST PEOPLE WITH DISABILITIES DISABILITIES, HOW -- THAT IS SO UNREASONABLE. THERE'S SO MUCH ENERGY, MONEY, AND TIME THAT CAN BE DEVOTED TO THE DISABILITY COMMUNITY AND PEOPLE WHO -- WHAT THEY WANT AND WHAT THEY NEED SHOULD BE VALID AND CARED FOR AND NOT BE DEEMED AS SOMETHING SECONDARY. Nelufar Hedayat: SAMIRA, ARE
YOU SAYING SOCIETY NEEDS TO CHANGE, NOT OUR GENE? Samira Saati: YES. Nelufar Hedayat: INTERESTING. DO YOU WANT TO FOLLOW UP? Speaker: WITH SOCIETY THAT HAS CERTAIN EXPECTATIONS TOWARD YOU, IT MAKES ME REFLECT ON THIS IDEA OF BEING FUNCTIONAL OF CERTAIN SOCIAL STANDARDS. ARE WE TRYING TO MAKE LIFE BETTER FOR PEOPLE, OR ARE WE EXPECTING THEM TO FALL IN A CERTAIN SOCIAL STANDARDS OF BEING PRODUCTIVE? Nelufar Hedayat: OKAY. FANTASTIC. ALI, I WANT TO GET A MIC TO YOU. I WANT THE ROOM TO START THINKING ABOUT
THE NEXT PHASE, THE FINAL PHASE OF THE CONVERSATION WE'RE GOING TO HAVE. HOW DO WE BUILD A FAIRER SOCIETY? WE'VE HEARD WHAT CAN HAPPEN ON AN INTERNATIONAL LEVEL ON POLICY AND REGULATION. BUT PERSONALLY AND INTERPERSONALLY, WHAT CAN BE DONE? ALI? Ali Al-Ajmi: I THINK BASICALLY ON OUR LEVEL, ESPECIALLY AS A MEDICAL STUDENT, WE CAN SURELY CREATE SOME CAMPAIGNS THAT FOCUSES ON PEOPLE WITH DISABILITIES AND RAISE THIS FOR THE COMMON POPULATION. THE MORE PEOPLE WE HAVE, THE
MORE HANDS ON BOARD, THE MORE THAT WE'LL ACTUALLY BE ABLE TO SOLVE MANY OF THESE, LET'S SAY, DETRIMENTAL ISSUES. IN THAT REGARD, IF I CAN -- Nelufar Hedayat: NO, CONTINUE. Ali Al-Ajmi: IF I CAN GO BACK TO THE PREVIOUS POINT, I THINK WE ARE SAYING WE ARE SOMEWHAT SEPARATING THE DISABILITY PEOPLE AND INA CASTRO LOOKS THE THE INTERNATIONAL COMMUNITY. I THINK MAYBE IN SOME ASPECT WE CAN FIND THE MIDDLE GROUND WHERE EVERYONE CAN WORK TOGETHER PUTTING ALL OF OUR EFFORT TOGETHER AND THEN TRYING TO FIND THESE SOLUTIONS THAT WE WOULD LIKE TO BE SOLVED. Nelufar Hedayat: ABDUL, DID YOU WANT TO COME IN ON THIS POINT? SORRY, I THOUGHT I SAW YOU RAISE YOUR HAND. I WONDERED IF YOU WANTED
TO COME IN WITH WHAT ALI JUST SAID. Abdulqutus Sanni: I DO AGREE WHAT ALI SAID AND I THINK IT WOULD BE ACCEPTED INTO SOCIETY AS OPPOSED TO JUST MERELY EDITING THE GENES. AS SUCH, THEY SHOULD BE BUILT TO ACCOMMODATE PEOPLE WITH DISABILITIES AND SO SHOULD EVERYWHERE, EVERY INSTANCE. Nelufar Hedayat: THANK YOU SO
MUCH, ABDUL. THE GENTLEMAN IN THE BACK WITH THE MASK, PLEASE GO. YES. YES, CONTINUE. Speaker: OKAY. SURE. SO I WILL GO AT YOUR POINT. I COMPLETELY AGREE.
FOR ME, IN A PERSONAL LEVEL, I BELIEVE THAT THE VERY CONCEPT IN GENERAL IS A VERY UNCLEAR, GRAY LINE. AS FAR AS I'M CONCERNED WE SHOULD VALUE OUR OWN TRAITS THAT WILL MAKE -- THAT CREATE OUR OWN STRENGTHS. SO AS SUCH, I FEEL PERSONALLY BELONG TO GO AGAINST THE ORDER -- TO GO AGAINST THE ORDER OF NATURE WHICH HAS CREATED US WITH OUR STRENGTHS BY REMOVING -- BY EDITING GENES. SO PERSONALLY FROM MY LEVEL, FROM
MY EXPERIENCE, I BELIEVE THAT WE SHOULD VALUE INDIVIDUAL STRENGTHS. WE SHOULD USE IT TO INCREASE AWARENES S AS MANY OTHERS HAVE SAID. Nelufar Hedayat: MUHAMMAD, I'M GOING TO COME TO YOU NEXT. BUT BEFORE THAT. Speaker: I DO AGREE WE NEED GENETIC ENGINEERING, BUT THAT SHOULDN'T STOP US FROM LOOKING BACK AND SPREADING AWARENESS TO OUR KIDS. SO IN SCHOOL, A LOT OF KIDS DO BELIEVE THOSE WITH DISABILITIES, BUT WE SHOULD SPREAD AWARENESS AND NORMALIZE IT AS A THING. WE
SHOULD NOT SEPARATE THOSE WHO HAVE DISABILITIES FROM THE NORMAL KIDS. WE HAVE TO START THERE AND THEN LOOK AT GENETIC ENGINEERING TO FIX THIS ISSUE. Nelufar Hedayat: WE HAVE A QUESTION FROM MUHAMMAD ABDUHOO.
Muhammad Abduhoo: SO THROUGHOUT THIS CONVERSATION, I HAVE PERCEIVED THAT THERE'S A LOT OF TALK ABOUT SOCIAL ACCOMMODATION. I TRULY BELIEVE THAT GENES DON'T FIX EVERYTHING. JUST LIKE DR. GHALY HAS SAID PREVIOUSLY, THAT THERE ARE A LOT OF FACTORS THAT GO INTO THAT ASPECT. SO I REALLY BELIEVE THAT EVERYONE SHOULD WORK TOGETHER, LIKE ALL THREE LEVELS, THEY SHOULD WORK TOGETHER TO SOLVE THIS ISSUE. Nelufar Hedayat: MUHAMMAD, DO YOU THINK THIS WILL BE EQUALLY APPLICABLE ACROSS ALL THE NATIONS OF EARTH? Muhammad Abduhoo: YEAH, LIKE I SAID, PREVIOUSLY, TO WORK TOGETHER, THE INTERNATIONAL COMMUNITY, THE NATIONAL COMMUNITY, THE DISABLED COMMUNITY, THEY SHOULD ALL WORK TOGETHER. BECAUSE EVERYONE HAS THEIR OWN OPINIONS. EVERYONE HAS THEIR
OWN PERSPECTIVES ON HOW TO SOLVE THIS THING. PERHAPS IF WE ALL WORK TOGETHER AND LISTEN TO PERSPECTIVES, THEY SHOULD GET MIDDLE GROUND TO DO THAT. Nelufar Hedayat: MARIAH HAS SOMETHING TO SAY. Mariah Arif: IF IT'S GOING TO BE APPLICABLE FROM ALL OVER THE WORLD, I DON'T THINK IT'S TRUE. I COME FROM PAKISTAN. IT'S A
THIRD-WORLD COUNTRY. THE HEALTH CARE IS NOT THE BEST COMPARED TO HERE. SO EVEN GETTING A DIAGNOSIS, I WOULD SAY, WOULD BE A PRIVILEGE. SO RAISING AWARENESS AND EVEN ACCESSIBILITY FROM GENETIC ENGINEERING, ACCESSIBILITY IN TERMS OF PEOPLE WHO ARE DISABLED, I THINK IT ALL COMES DOWN TO IT'S A PRIVILEGE AT THE END OF THE DAY. IT DEFINITELY WILL NOT
BE -- NO MATTER HOW MUCH WE WANT IT TO, BUT DEFINITELY WON'T BE ALL AROUND THE WORLD. Nelufar Hedayat: HOW SHOULD WE MAKE A FAIRER SOCIETY, JANNA? Jannatul Mawa: Speaker: THAT'S A GREAT QUESTION. Speaker: I WOULD LIKE TO SAY FINDING THE COMMON GROUND, LIKE ALI SAID. I BELIEVE THE SOCIAL IMPLICATION IS VERY IMPORTANT AND WE SHOULD PROMOTE DIVERSITY, EQUITY, INCLUSION AND HAVING THAT AWARENESS ABOUT THAT IS REALLY IMPORTANT. AND
THAT'S HOW WE COULD CREATE THAT INCLUSIVE COMMUNITY. Nelufar Hedayat: THAT'S MY POINT. I'M GETTING A SENSE THAT THERE MIGHT BE A GENERATIONAL CONTEXT THAT WE PERHAPS WANT TO DRAW ON AS WE ENTER THE LAST PHASE AND PRETTY MUCH THE END OF OUR DISCUSSION. I WANT TO START THINKING ABOUT THE GENERATION DIVIDE. I CAN BE OLDER THAN PRETTY MUCH OF YOU, I FOUND OUT SELWIN IS 17. YOU COME FROM DIFFERENT GENERATIONS. HOW
DOES THE NEXT GENERATION, GEN X, GEN ALPHA AND GEN Z, WHAT ARE YOUR ASPIRATIONS OF HOW THIS CAN BE TACKLED? BEFORE THAT, YOUR EXCELLENCY, I WANTED TO GET YOUR PERSPECTIVE ON THIS. BRINGING US RIGHT BACK INTO TODAY, HOW CAN WE AIM FOR A FAIRER SOCIETY AND A FAIRER OUTCOME FOR ALL? H.E. Vivian de Torrijos: IT DOESN'T MATTER IF YOU ARE USING OR NOT TECHNOLOGY TO CHANGE, YOU HAVE TO HAVE A MORE INCLUSIVE SOCIETY. AND THAT'S ONE THING THAT WE HAVE TO WORK EVERY DAY, EVERY SINGLE DAY. I MEAN, DISABILITY, YOU EITHER HAVE IT OR NOT. YOU DON'T SUFFER. THE DISABILITY IS A CONDITION THAT YOU HAVE. AND EVEN THOUGH YOU CHANGED THE
WAY YOU WERE SUPPOSED TO HAVE IT OR NOT WITH TECHNOLOGY, I MEAN, THERE'S SOME DISABILITY THAT IS DISABILITIES THAT YOU ACQUIRE DURING TIME. YOU HAVE TO WORK IN AN INCLUSIVE SOCIETY. WE HAVE TO EDUCATE OUR PEOPLE AND WE HAVE TO REALIZE OUR PEOPLE WITH DISABILITIES. Nelufar Hedayat: THANK YOU,
YOUR EXCELLENCY. DR. PINEDA, I WANT TO BRING YOU IN AT THIS POINT BECAUSE WE'RE SPEAKING ABOUT -- OR CERTAINLY I SOMETIMES THINK OF IT AS A DISABILITY THAT SOMETHING THAT YOU HAVE AND THAT'S IT. BUT IT'S ACTUALLY SOMETHING THAT A LOT OF US CAN ACQUIRE OVER TIME. Dr. Victor Pineda: I THINK THE FIRST LADY GAVE US A GREAT FRAMEWORK WHICH IS WE HAVE A SOCIAL BOND AS HUMANS. WE HAVE
SOCIAL AGREEMENTS. AND THE IDEA OF FAIRNESS, WE HAVE TO THINK ABOUT WHAT IS THE SOCIETY THAT WE WANT TO BUILD, WHICH LIVES ARE PRIVILEGED AND WHICH ONES ARE NOT. THERE ARE PERCEPTIONS THAT ARE OUTDATED ABOUT WHAT A DISABILITY IS OR HOW THAT PERSON CAN CONTRIBUTE TO SOCIETY. HUMAN RIGHTS ADVANCEMENTS HAVE GIVEN US FRAMEWORKS AND TOOLS TO PROTECT THESE RIGHTS, BUT ALSO LAWS ABOUT DISCRIMINATION AND HOW CAN YOUR GENETIC INFORMATION BE USED TO DISCRIMINATE YOU AGAINST JOBS. THESE QUESTIONS ARE NOT JUST ABOUT WHAT TYPE OF LIVED EXPERIENCE, IT'S ABOUT THE BREADTH AND THE DEPTH AND THE RICHNESS OF OUR COLLECTIVE EXPERIENCE AND BEING ABLE TO USE THAT KIND OF PRUDENT DECISIONS THAT ALLOW US TO PROSPER TOGETHER. Nelufar Hedayat: BEFORE WE
MOVE ON, I WANT TO ASK YOU, YOU WORKED WITH PRESIDENT BARACK OBAMA. YOU WORKED FOR OTHER GOVERNMENTS AROUND THE WORLD. DR. PINEDA, HOW DO YOU GET PEOPLE TO TAKE THIS ISSUE SERIOUSLY AND TO MOVE IT FORWARD? I CAN'T IMAGINE THE CHALLENGES YOU HAVE WHEN YOU ARE FACED WITH THESE TECTONIC PLATES LIKE INTERNATIONAL POLICY, THE COST OF LIVING CRISIS, A RECESSION, A GLOBAL PANDEMIC. Dr. Victor Pineda: I THINK WE START WITH ENRICHING, EMPOWERING, AND EDUCATING THE NEXT GENERATION . SO THIS IS NOT A SPRINT. THIS IS A RELAY RACE. EGG EVERYTHING WE HAVE
EXPERIENCED AS A HUMANKIND IS UP TO THE NEXT GENERATION TO ACCEPT, ADOPT, AND MAKE THEIR OWN. THIS CONVERSATION WAS RICH BECAUSE IT ALLOWED US TO LOOK AT UTILITARIAN PERSPECTIVES BUT ALSO A HUMAN RIGHTS PERSPECTIVE AND HUMAN DIGNITY, GET THE DIVERSITY OF THE LIVED EXPERIENCE. SO THE WAY YOU DO THIS IS TALK ABOUT IT, HAVING DIFFERING OPINIONS. GET INVOLVED WITH PEOPLE THAT MIGHT THINK DIFFERENTLY THAN YOU DO IN ORDER TO BRIDGE THOSE DIVIDES AND SHOW THAT IT'S NOT ONLY ABOUT ONE INTERVENTION, IT'S ABOUT A RANGE OF POSSIBLE OPTIONS THAT EACH HAVE A POINT OF VIEW AND EACH HAVE A ROLE. BUT TOGETHER WE HAVE TO BALANCE THOSE AND FIND A WAY FORWARD. Nelufar Hedayat: DR. PINEDA,
THANK YOU SO MUCH. THIS IS A RELAY, NOT A SPRINT. I WANT TO BRING YOU IN. Speaker: I DEFINITELY WANT TO. I COMPLETELY AGREE. I MEAN, I THINK LIKE EVEN BEFORE WE JUMP TO GENE EDITING, I THINK WE ALSO SORT OF HAVE TO CONSIDER, LIKE, HOW CAN WE AS A SOCIETY, WHAT SHOULD WE BE DOING IN THE TIME THAT IT TAKES US FOR US TO COMPLETELY GET TO THE POINT THAT, OKAY, YEAH, WE CAN DO -- 100% GENE EDITING WILL WORK. UNTIL WE GET TO THAT POINT, WHAT CAN WE DO AS A SOCIETY TO HELP PEOPLE WHO DON'T UNDERSTAND THE STRUGGLES OR THE TRIUMPHS THAT PEOPLE WITH DISABILITIES FACE. HOW CAN WE HELP THEM UNDERSTAND -- HOW CAN
WE HELP THEM CHANGE THEIR MINDSET? I THINK THAT'S SOMETHING THAT WE NEED TO HAVE A DISCUSSION ABOUT, AS HE MENTIONED. Nelufar Hedayat: THIS IS A REALLY IMPORTANT POINT AND PERSPECTIVE BECAUSE WE'RE TALKING ABOUT HATRED, WE'RE TALKING ABOUT DIE DIVISIVE NESS AND THE STRUGGLES THE COMMUNITY OF PEOPLE WITH DISABILITIES FACE. I WANT TO CREATE A SPACE WHERE WE CAN TALK ABOUT THAT. IT'S NOT SOMETHING WE HAVE TO TALK ABOUT. NAWAAL, PERHAPS THIS IS SOMETHING YOU WANT TO TALK ABOUT. IF YOU DO, WE CAN PASS THE MICROPHONE.
MARYAM, I KNOW YOU WANTED TO COME IN. Maryam Al Ibrahim: WHEN IT COMES TO UNFAIRNESS, I AS THE DISABLED PERSON SHOULDN'T BE THE ONE ADJUSTING. WE LIVE IN A GENERATION WHERE WE'RE CAPABLE OF PROVIDING. WE HAVE THE MONEY AND RESOURCES. THEY ARE JUST INVESTING IT IN THE WRONG ASPECTS. LIKE, THEY
SHOULD -- THEY SHOULD SEE US -- SEE ME AS A DISABLED PERSON AND SEE MY VALUE AND SEE THAT THEY HAVE -- I HAVE -- DESPITE MY DISABILITY I CAN DO AMAZING THINGS. THERE ARE SO MANY PEOPLE WHO HAVE LEFT THEIR MARK. AND THERE ARE SO MANY, BUT WE NEED ACCOMMODATIONS AND WE NEED A MORE UNDERSTANDING SOCIETY. WE NEED -- WE NEED TO HAVE THE MINDSET THAT DISABLED PEOPLE ARE CAPABLE OF DOING AMAZING THINGS, BECAUSE THEY ARE.
Nelufar Hedayat: THANK YOU SO MUCH. I WANT TO COME TO YOU -- LET'S TAKE RAYAAN'S QUESTION AND TACKLE THAT. HOW DO YOU DEAL WITH THE HATE? HOW DO YOU DEAL WITH THE MISUNDERSTANDING AND MISINFORMATION UNDERSTAND THERE? Nawaal Akram: ONE OF THE PERSPECTIVES I CONSTANTLY SEE THERE IS A DENIAL OF DISABILITY THAT DISABILITY CAN BE COMPLETELY ELIMINATED, RIGHT? SO THERE ARE SO MANY RESOURCES PUT INTO IT. PEOPLE FORGET WE HAVE CLIMATE CHANGE. WE HAVE WARS HAPPENING. WE HAVE CONFLICTS ALL OVER THE WORLD WHICH IS RESULTING IN DISABILITY. SO THE AMOUNT OF MONEY THAT IS
BEING PUT INTO ERASING THIS, LET'S ASK PEOPLE TO LOOK AT PREVENTING THEIR MONEY GOES INTO WRONG PLACES WHERE IS CREATING MORE DISABILITIES. I THINK THIS IS A VERY BIG PERSPECTIVE THAT PEOPLE DON'T SEE A LOT. BECAUSE OF ALL THESE THINGS, DISABILITIES ARE INCREASING DAY TO DAY. AND WHAT ARE PEOPLE DOING TO
ACCOMMODATE THEM OR TO FIX THEM, QUOTE-UNQUOTE? Nelufar Hedayat: AYAH ZIYADA, YOU CAN COME IN HERE. Ayah Ziyada: I TOTALLY AGREE WITH EVERYONE HERE WHO HAVE MENTIONED THAT ENABLING AND CREATING MORE SOCIETY THAT IS ACCEPTING FOR THIS COHORT OF PEOPLE. AND BEFORE WE RUSH TO GENETIC EDITING, WE SHOULD ALIGN THESE EFFORTS ON -- I MEAN, AS LONG AS -- THERE'S SOCIAL BENEFITS AND MEDICAL BENEFITS ON GENE EDITING. BUT WE NEED SOCIETIES THAT CAN ADAPT AND ALSO CREATE MUCH BETTER PERSPECTIVE FOR ALL, OF COURSE. Nelufar Hedayat: JANNA, I WANT TO ASK YOU A SPECIFIC QUESTION, DR. GHALY. SHOULD WE NOT BE DOING
BOTH? THERE ARE STUDENTS HERE WHO ARE MEDICAL STUDENTS WHO WILL TAKE ON THE HIPPOCRATIC OATH SOON, DO NO HARM AND SO ON. I DON'T KNOW THE REST OF IT. I HAVE ONLY SEEN'S ""GREY'S ANATOMY"." MY QUESTION TO YOU, AS SOON AS JANNA HAS SPOKEN, SHOULD WE DOING BOTH? BY SAYING IT HAS TO BE ONE OR THE OTHER, ARE WE IMPEDING HUMAN DEVELOPMENT? JANNA, FIRST, YOUR POINT? JANNATUL MAWA. Janna Mawa: Janna Mawa: WE WERE TALKING ABOUT A MISUSE OF MONEY. COCHLEAR IMPLANT FROM A COUNTRY THAT THERE IS NOT MUCH MONEY. I COME FROM BANGLADESH. THERE IS MUCH MORE
A CYCLE OF POVERTY AND UNEMPLOYMENT FOR PEOPLE WITH DISABILITIES. I HAVE A QUESTION WITH HER EXCELLENCY. WHEN YOUR EXPERIENCE AT THE COMMISSION OF PEOPLE WITH DISABILITIES, YOU HAVE WORKED WITH BANGLADESH RECENTLY. FROM YOUR PERSPECTIVE, HOW CAN WE MAKE THOSE COUNTRIES, WHEN GENETIC ENGINEERING IS INTRODUCED, HOW CAN WE MAKE THOSE COUNTRIES SORT OF BE MORE ACCESSIBLE AND BE MORE INCLUSIVE TOWARDS THE DISABILITY COMMUNITY? H.E. Vivian de Torrijos: FOR ME, IT'S NOT A MATTER OF MONEY OR FUNDS. IT'S JUST A MATTER OF HUMAN BEINGS, HUMAN RIGHTS. AND
AS YOU SAID, I WAS A RAPPORTEUR OF YOUR COUNTRY THREE WEEKS AGO. AND I WAS AMAZED ON THE EVALUATIONS ON HUMAN RIGHTS, ON GIRLS AND WOMEN WITH DISABILITIES IN YOUR COUNTRY. AND IT HAS NOTHING TO DO WITH FUNDS OR WITH NOT HAVING NO RESOURCES. SO WE NEED -- WE NEED A CIVIL SOCIETY TO BE STRONG, WITH A STRONG VOICE, TO GO AND ASK FOR THE RIGHTS. WE NEED THAT BECAUSE IT'S THE ONLY THING -- WE NEED THE SOCIETY TO GET ORGANIZED AND RAISE THE VOICES TOWARDS THEIR RIGHTS. FAMILIES AND PEOPLE WITH DISABILITIES. Nelufar Hedayat: THANK YOU SO
MUCH. WE'VE GOT MINUTES LEFT. I WANT TO GET YOUR FINAL TAKE ON THIS. IN A WAY, BEFORE WE GO TO DR. PINEDA, FROM YOUR PERSPECTIVE -- YES, FAITH HAS PLAYED A PART IN THIS. ECONOMICS. THE IDEA OF GENERATION AL DIE DIVIDE S, SOCIAL WELL-BEING, MONEY HAS ALL PLAYED ON THIS. IS THIS A
FALSE DICHOTOMY? DO YOU WE NEED TO PICK? Dr. Mohammed Ghaly: I THINK THE HOLISTIC APPROACH, THE MORE HOLISTIC THE APPROACH IS, THE MORE EFFECTIVE IT WILL BE. WE CANNOT IGNORE THE SIGNIFICANCE OF TECHNOLOGY AND SCIENTIFIC ADVANCEMENT ON ONE HAND. BUT WE CAN ALSO NOT
IGNORE THE SIGNIFICANCE OF ETHICS AND VALUES IN OUR TECHNOLOGY. WE SHOULDN'T CHOOSE TECHNOLOGY AT THE COST OF OUR VALUES AND AT THE COST OF PEOPLE'S HUMAN DIGNITY IRRESPECTIVE OF THEIR HEALTH CONDITION. INTRODUCING THE NEW TECHNOLOGY SHOULD BE COUPLED WITH THINKING ABOUT SOCIAL JUSTICE, FAIRNESS , THE MINIMIZING OR MITIGATING THE GAP BETWEEN THE POOR AND THE RICH AT THE LEVEL OF SOCIETIES, COMMUNITIES, COUNTRIES, AND SO ON. SO THE MORE HOLISTIC, THE BETTER IT WILL BE.
Nelufar Hedayat: THANK YOU SO MUCH . RIGHT. WE HAVE HEARD ALL OF THESE FANTASTIC IDEAS AND VISIONS FOR A FAIRER SOCIETY. BUT HOW CAN WE MAKE THESE IDEAS A REALITY? I'M GOING TO LEAVE THE FINAL BIT OF CONTEXT HERE FOR DR. PINEDA. DR. PINEDA. Dr. Victor Pineda: THAT'S A GREAT QUESTION. AND I THINK WHAT WE'VE HEARD IS A SERIES OF EVOLUTIONS OF THINKING, RIGHT? WE STARTED OFF WITH A BINARY, SHOULD WE USE IT OR NOT. WE EXPLORED IDEAS OF UTILITARIAN THAT HAVE TO DO WITH COSTS, WITH SUFFERING. WE HAVE THE UNDERSTANDING THAT
IT IS RELEVANT TO A CERTAIN SOCIETY, THE SOCIAL CONTEXT. IT SHOULD EVOLVE. IT SHOULD NOT ONLY BE A MEDICAL APPROACH OR MEDICAL DECISION. WE HEARD FROM THE FIRST LADY THE CONCEPT OF HUMAN RIGHTS, THE IDEA THAT EVERY SOCIETY MUST HAVE A RESPONSIBILITY TOWARDS THE LEAST AND MOST MARGINALIZED IN ORDER TO HOLD THAT SOCIETY TOGETHER. GENETICS, AS DR. GHALY SAID, IS NOT GOING TO SOLVE DISABILITIES THAT COMES WITH AGING. THAT'S
NOT GOING TO SOLVE DISABILITIES THAT COMES WITH ACCIDENTS. AS A HUMAN CONDITION, WE HAVE TO BE PREPARED FOR EVERY EXPRESSION OF THE HUMAN CONDITION, THAT TO TRY TO SELECT AND DECIDE WHAT IS A VALUED LIFE AND WHAT IS AN UNVALUED LIFE, WE COULD GET INTO SOME SERIOUS CHALLENGES. HOWEVER, THE CONTINUATION OF THIS DISCUSSION IS REALLY ENRICHING. AND YOU CAN SEE AT THE DOHA DEBATES WEBSITE THE BEAUTIFUL SERIES CALLED "MY DISABILITY JUSTICE." IT'S A PRODUCTION FROM MY ORGANIZATION WORLD ENABLED TO REALLY SHOW YOU THE BREADTH OF THESE STORIES, GIVE YOU AN IDEA THAT IT'S ALL OVER THE WORLD. YOU HAVE CHANGE AGENTS THAT ARE LOOKING
TO IMPROVE THE HUMAN CONDITION. A SIMPLISTIC IDEA THAT THEIR LIVES AREN'T WORTHING IS NOT THE SOLUTION. A MORE HOLISTIC SOLUTION THAT RESPECTS THE RIGHTS OF DISABLED PERSONS AND ALLOWS US TO HAVE A DISCUSSION IN YOUR COUNTRY THAT LOOKS AT THE MULTIPLE FACTORS THAT CREATE BARRIERS AND CREATE CHALLENGES, THAT ALLOW PARENTS TO MAKE BETTER DECISIONS WHETHER OR NOT THEY WANT TO USE GENETIC TECHNOLOGY AND TO WHAT DEGREE. E EVERY CULTURE AND SOCIETY HAS A ROLE TO PLAY. I THINK AS WE MOVE FORWARD, IT'S UP TO EACH ONE OF US TO STAY INFORMED AND TO BE AWARE THAT EVERY LIFE HAS VALUE, THAT WE CAN NEVER MAKE ASSUMPTIONS OF WHAT SUFFERING IS. WE CAN ONLY MAKE A COLLECTIVE DECISION OF WHERE WE WANT TO GO AND WHAT WE WANT THAT SOCIETY TO LOOK LIKE.
Nelufar Hedayat: DR. VICTOR PINEDA THANK YOU SO MUCH. THANK YOU TO MY EXPERTS. THANK YOU SO MUCH FOR YOU THAT HAVE CONTRIBUTED AND YOUR WONDERFUL INSIGHTS AND CONTRIBUTIONS. THAT IS IT FROM US. GOODBYE.
2022-10-06 06:48
