WELCOME ALL TO TODAY'S NLM HISTORY TALK BEING HELD VIRTUALLY THANKS TO THE OUTSTANDING STAFF. MY NAME IS JEFF. I'M CHIEF OF THE LIBRARY'S HISTORY OF MEDICINE DIVISION AND IT'S MY PLEASURE TO WELCOME YOU ALL. NLM'S HISTORY TALKS ARE DESIGNED TO PROMOTE -- FOR RESEARCH AND EDUCATION AND PUBLIC SERVICE IN BIOMEDICINE AND SOCIAL SCIENCE AND HUMANITIES. ALSO THE COMMITMENT TO RECOGNIZE THE DIVERSEMENT. AS WELL AS TO SUPPORT THE DIVERSITY OF INDIVIDUALS THAT USE THESE COLLECTIONS TO ADVANCE THEIR RESEARCH THEIR TEACHING AND THEIR SERVICE. IT'S MY DISTINCT PRIVILEGE TO INTRODUCE OUR SPEAKER DR. JOANNA RADIN ASSOCIATE PROFESSOR PROGRAM IN HISTORY OF SIGH APPS -- SCIENCE AND MEDICINE YALE UNIVERSITY. SHE HAS SPECIFIC INTERESTS IN GLOBAL HISTORY AS A BIOLOGY, ECOLOGY, MEDICINE AND A AND ANTHROPOLOGY. AS WELL AS SCIENCE FIGS. THE FIRST HISTORY OF LOW TEMPERATURE BIOBANK. A HISTORY THAT HAS MUCH TO TEACH US ABOUT CONTEMPORARY EFFORTS TO UNDERSTAND COVID-19. SHE IS ALSO COEDITOR WHICH CONSIDERS THE TECHNIQUES AND ETHICS. DR. RAD AN US CURRENTLY O WORKING ON A BOOK. DR. RADIN'S TALK TODAY -- MADE IN THE COURSE OF A LONGITUDINAL EPIDEMIOLOGICAL STUDENT EVOLVING IN DIGITAL NEWS MEMBERS. -- -- DR. RADIN'S TALK IS HELD TODAY IN COOPERATION FOR THE NATIONAL ENDOWMENT AS PART OF THE ONGOING NLM/NEH PARTNERSHIP TO COLLABORATE AND WE THANK YOU OUR COLLEAGUES FOR THE COSPONSORSHIP. SO WELCOME AND THANK YOU VERY MUCH FOR YOUR PRESENTATION TODAY AND WE WELCOME YOU AND WE LOOK FORWARD TO HEARING YOU SPEAK ON WHEN PEOPLE ARE DATA. HOW MEDICAL HISTORY MATTERS FOR OUR DIGITAL AGE. I'M GOING TO TURN IT OVER TO YOU AND I'M GOING TO MUTE MYSELF. >> GREAT. THANK YOU SO MUCH. FIRST I WANT TO START BY SAYING THANK YOU TO ALL OF YOU OUT THERE FOR WELCOMING ME INTO YOUR HOMES THIS AFTERNOON. I WANT TO THANK JEFFREY RESNIK FOR THE INVITATION TO SPEAK TO YOU ON BEHALF OF THE LIBRARY THE NATIONAL MEDICINE. I'M ALSO GRATEFUL TO LINDSEY AND ELIZABETH MULIN FOR THEIR SUPPORT AND NIH FOR THE SUPPORT THAT THEY MAKE EVENTS LIKE THIS POSSIBLE. APE SPEAKING TO YOU FROM MY HOME JUST OUTSIDE OF NEW HAVEN, CONNECTICUT WHICH IS BUILT ON UNSEEDED -- LANDS. I WANT TO ACKNOWLEDGE THIS BECAUSE IT HAS DIRECT BEARING ON THE RESEARCH I'M GOING TO BE SHARING WITH YOU TODAY. AND THE WAY THAT THEY SHAPE OUR LIVES IN WAYS THAT WE'RE NOT ALWAYS ABLE TO SEE EASILY. IN A NATION BUILT ON BROKEN TREATIES AND A LARGE PART OF WHAT I'VE DONE -- AS A WHITE SETTLER IS THAT WE HAVE TO LIVE IN CONTRADICTION AND WE HAVE TO BE COMFORTABLE WITH BEING UNCOMFORTABLE. THIS IS WHAT AN IMAGE OF THINGS THAT HAVE BEEN HAPPENING IN MY NEIGHBORHOOD AND NEAR ME. I'M OVER THE LAST LAST WEEK AND I WANT TO SPEAK A LITTLE BIT FROM MY OWN HEART TO SAY IT'S DIFFICULT FOR ME TO KNOW HOW TO CONNECT TO YOU WHEN I CANNOT SEE YOU. THIS IS THE NORMAL WAY I'VE USED TO GIVING TALKS LIKE THIS BUT ESPECIALLY IN THIS MOMENT WHERE SO MANY AMERICANS ARE ENGAGED IN STRUGGLES FOR SURVIVAL NOT ONLY IN THE FACE OF THE CORONAVIRUS BUT FROM THE ENDURING EFFECTS OF COLONIALISM AND RACISM AND THE TANGLES OF CARE. THIS IS THE TITLE SLIDE FOR MY TALK AND WHAT I WANT TO START WITH IS POINTING OUT THAT INDIGENOUS AMERICANS OR PEOPLE LIVING ON LANDS THAT HAVE BEEN CLAIMED BY AMERICA AND SETTLED BY AMERICA ARE AMONG THE MOST IMPACTED BY COVID-19. I DON'T HAVE THE UPDATED NUMBERS FOR THIS WEEK BUT AS OF LAST WEEK THERE WERE 5317 CASES IN THE NAVAJO NATION ALONE AND I INCLUDED THE LINK AND I'VE TRIED TO HYPERLINK SO YOU CAN CLICK THROUGH IF POSSIBLE TO GET MORE DETAILS ON THIS DATA AND LOOK AT VARIOUS KINDS OF EPIDEMIOLOGICAL PROJECTS COLLECTING DATA FOR A VARIETY OF PURPOSES. I ALSO WANT TO POINT OUT THE COVID-19 EPIDEMIC WHICH IS HITTING THESE COMMUNITIES ESPECIALLY HARD IS INTERSECTING WITH A LONGER EPIDEMIC OF MISSING AND MURDERED WOMEN WHICH IS NOT GOTTEN THE SAME LEVEL OF ATTENTION CHITTER SHOULD SO I'M POSTING A LINK. TRYING TO UNDERSTAND THE INTERSECTIONAL DIMENSIONS OF RACE AND GENDER AND SEXUALITY SO I HOPE YOU'LL TAKE SOME THYME TO LOOK AT THESE RESOURCE AND THE FINAL EPIDEMIOLOGICAL PROJECT THAT IS GOING ON RIGHT NOW TO MAKE SENSE OF THE RACIAL DIMENSIONS THE DISPROPORTIONATE IMPACT OF COVID-19 IS THIS PROJECT COVID TRACKING.com WHICH I WAS ABLE TO ACCESS YESTERDAY AND THERE IS TREMENDOUS JUMPS IN INCIDENTS OF COVID-19. YOU CAN SEE HERE THAT BLACK PEOPLE ARE DYING AT A RATE NEARLY TWO TIMES HIGHER THAN THEIR SHARE IN THE POPULATION MORE GENERALLY AND THESE ARE QUESTIONS THAT I THINK NEED TO BE UNDERSTOOD OR THAT DATA THAT NEED TO BE UNDERSTOOD NOT JUST IN TERMS OF A KIND OF INNATE BIOLOGICAL SUSCEPTIBILITY BUT A PRODUCT OF LONG-TERM CHOICES AND COMMITMENTS ON THE LEVEL OF SOCIETY. AND SO I WANT TO SHARE WITH YOU AND TO BE HONEST IN SAYING THAT I'M NOT CONFIDENT THAT WHAT I HAVE TO TELL YOU IS WHAT -- MOST NEEDS TO E SAID IN THIS TIME OF CRISIS WHEN PEOPLE'S ATTENTION IS DRAWN IN SO MANY PLACES. MAYBE IT NEEDS TO BE HEARD AS A WHITE WOMAN OF CONSIDERABLE PRIVILEGE BUT I AM SPEAKING IN SOLIDARITY WITH MY BLACK AND INDIGENOUS FRIENDS, COLLEAGUES AND STUDENTS AND FELLOW CITIZENS AND HISTORY IS THE MOST POWERFUL RESOURCE THAT WE HAVE TO ADDRESS THE STRUGGLES. I'M GOING TO OFFER THESE REMARKS IN A SPIRIT OF HUMILITY AND SOLIDARITY AND I HOPE THEY ARE RECEIVED IN THAT WAY. SO I THOUGHT IT MIGHT MAKE SENSE IN ADDITION TO SITUATING MYSELF AMONG THE PRESENT TO TELL YOU HOW I CAME TO WORK ON THE TOPICS THAT I WORK ON AND WHAT MY RESEARCH HAS DEALT WITH. THE STORY THAT I GUESS I'LL TELLING BEGINS WITH RESEARCH THAT BEGAN NOW ALMOST 15 YEARS AGO IN A BASEMENT IN BING I'M TON, NEW YORK. A FEW HOURS NORTHWEST OF NEW YORK CITY AND YOU'RE LOOKING AT AN IMAGE OF WHAT IS CALLED A SERUM ARCHIVE LAB WHICH IS A COLLECTION OF BLOOD SAMPLES OF MEMBERS OF INDIGENOUS COMMUNITIES FROM AROUND THE WORLD. THE OLDEST GO BACK TO THE 1950s AND '60s. I WENT THERE IN TW 2008 TO UNDERSTAND WHAT IT MEANT TO TAKE BLOOD SAMPLES LONG BEFORE ANYONE WAS TALKING ABOUT SEQUENCING DNA AND THE EMERGENCE OF VI VIE LOCAL GEE. -- VIROLOGY. THE FIRST MORNING TO DO THIS WORK I HEARD A POD CAST OR IT WAS NOT A POD CAST, IT WAS LIVE RADIO WHERE THE AUTHOR OF THE BOOK THE I MORTAL LIFE OF HENRIETTA LAX. I WOULD HAVE ASKED THE AUDIENCE TO SHARE WHAT THEY KNOW ABOUT HENRY YET AFTER LAX. BUT IT IS QUITE WELL-KNOWN THAT SHE WAS A BLACK WOMAN SUFFERING FROM CERVICAL CANCER WHO WENT TO RECEIVE TREATMENT AT JOHNS HOPKINS AND AT THE TIME HER CANCER CELLS WERE COLLECTED AND WERE USED TO DEVELOP THE IMMORTAL CELL LINES AND THIS IS A FOUNDATIO FOUND -- FOUNDATIONAL TECHNOLOGY AND RADICALLY TRANSFERRED HOW BIOMEDICAL RESEARCH IS DONE. DECADES LATER AFTER HENRY YET AFTER LAX'S CELLS WERE TRANSFORMED IN TREMENDOUS WAYS HER FAMILY REMAINED DISENFRANCHISED TO HEALTH CARE IN THE UNITED STATES AND THIS HELPED TO BRING ATTENTION TO HER CAUSE IN THE WAY TISSUES GET REUSED AND TRANSCENDING THE CIRCUMSTANCES OF THEIR ORIGINS AND THE STORY EMPHASIZES THE IMPORTANCE OF THINKING ABOUT THE BODIES UPON WHICH OUR BODIES ARE BUILT. WITH THIS GHOST IN A WAY OF HENRIETTA LAX LOOKING AT FREEZERS FILLED WITH TENS OF THOUSANDS OF SPECIMENS FROM PEOPLE FROM ALL OVER THE WORLD. THIS IS A PICTURE THAT I TOOK IN THE LAB OF AN ORIGINAL REFRIGERATOR BUT IT WAS USED AS A HOLDING AREA AND THERE ARE LOTS OF INTERESTING SIGNS BUT I WANT TO DIRECT YOUR ATTENTION TO THE BLUE BOARD THAT HAS A MESSAGE ON IT. BLOOD WILL TELL YOU ABOUT OFTEN IT TELLS TOO MUCH. I SPENT SEVERAL YEARS GOING BACK AND FORTH TO THIS LAB AND THAT MESSAGE STAYED. NO ONE IN THE LAB WAS WILLING TO ADMIT TO HAVING WRITTEN IT BUT EVERYONE HAD AN OPINION. EVERYBODY HAD A THOUGHT THAT BLOOD AND BODIES WERE MADE THROUGH THE LANGUAGE OF SCIENCE FOR ALL KINDS OF THINGS. THEY COULD REVEAL THAT YOU'RE NOT RELATED IN THE WAY YOU THOUGHT YOU WERE. THEY COULD BE USED FOR MEDICAL PURPOSES. BUT WHAT DO WE DO WITH WHAT BLOOD AND OTHER KINDS OF DATA THAT COMES FROM PEOPLE SAY? WHEN WE DON'T NECESSARILY HAVE A MEANING FOR THAT. WHEN THEY TRANSCEND THE LIMITS OF THE SCIENTIFIC ARTICLE. AND IT WAS THIS KIND OF WORK THAT ALSO GOT ME THINKING ABOUT FREEZERS AS TECHNOLOGIES OF THE FUTURE BOTH AS LITERAL WAYS OF REDISTRICTING LIFE AND TIME BUT ALSO AS A METAPHORICAL TECHNOLOGY FOR THINKING ABOUT HOW PEOPLE IMAGINE WHAT THE FUTURE WILL HOLD AND IF ANYONE IS LISTENING WHO HAS WORKED IN THE LABORATORY YOU'VE PROBABLY ENCOUNTERED A FREEZER OR REFRIGERATOR. THE RETREK FRIDGE RATED VEND DIAGNOSE COMPANY DISPENSING ICE CREAM AND THEN REPURPOSED. HERE I DIRECT YOUR ATTENTION TO THE TOP CORNER. THE FUTURE CAN INSIDE AND WE'RE SEEING ALL OF MOLECULAR BIOLOGY SWIRLING OUT OF THE FREEZING GIVING US ACCESS TO UNKNOWN KNOWLEDGE AND ANSWERS TO QUESTIONS SO THIS IDEA OF WHAT PUT IN THE FREEZER OR WHAT YOU COLLECT AND PRESERVE THAT WILL REVEAL THINGS IN TIME AND IT MAY REVEAL MORE THAN WHAT YOU INTEND TO OR DIFFERENT THAN WHAT YOU INTEND IT TO. SO THESE KIND OF FREEZING TECHNOLOGIES ARE ABLE TO TURN LIVING SUBSTANCE INTO A FORM OF LATLATENT OR POTENTIAL LIFE. WHERE NUMBERS OF THE COMMUNITIES WHO HAVE WILLINGLY GIVEN BLOOD AND DATA HAVE DECIDED ARE INSECURE. IN SOME CASES THEY HAVE DEMANDED THAT IT CEASE BEING USED FOR SUCH PURPOSES. MEMBERS WHO LIVE IN THE AMERICA SOUTHWEST FOUND OUT THAT BLOOD SAMPLES THEY HAD GIVEN TO RESEARCHERS AT ARIZONA STATE TO DO RESEARCH ON THEIR VERY HIGH RATES OF DIABETES AND HYPERTENSION WERE BEING REUSED WITHOUT THEIR PERMISSION FOR STUDIES OF MENTAL ILLNESS, ALCOHOLISM AS WELL AS QUESTIONS OF ANCESTRY AND ORIGINS WHICH SEEMED TO BE A BENIGN SET OF HISTORICAL QUESTIONS BUT TO MEMBERS OF THESE COMMUNITIES THREATENED THEIR SOVEREIGNTY. THE WAYS IN WHICH THEY WERE SITUATED ON THEIR LAND THAT HAD BEEN RESTRICTED ALREADY THROUGH THE RESERVATION SYSTEM. SO I WROTE ABOUT ALL OF THESE TOPICS IN THE BOOK THAT WAS MENTIONED EARLIER -- AND IT WAS THROUGH THE HISTORY OF EFFORTS TO CREATE CONTEMPORARY BIOBANKS AND THE TENSIONS SURROUNDING THEM THAT I STARTED THINKING ABOUT DIFFERENT PERSPECTIVES ON BIOMEDICINE AND EFFORTS TO MAKE SENSE AND IT WAS THIS KIND OF RESEARCH THAT ACTUALLY LOOKING AT FLESHY BITS OF BODIES, PEOPLE WHO ARE PUT IN FREEZERS THAT HELPED ME TO APPRECIATE THAT SIMILAR KINDS OF QUESTIONS OF REUSE ARE ARISING IN DATA SCIENCE. SO BASICALLY MY METHOD IS TO SAY WHAT CAN WE LEARN FROM LOOKING AT HISTORIES OF MATERIALS OF THINGS THAT SEEM LIKE THE OPPOSITE OF DATA. WHAT COULD BE MORE IN BODY AND BLOOD. WHAT CAN WE LEARN IF WE APPLY THOSE SAME KIND OF SEARCHES TO DATA. I WANT TO CALL ATTENTION TO A SCHOLAR AND IF YOU'RE INTERESTED IN THESE QUESTIONS IN PARTICULAR I HIGHLY RECOMMEND HER WORK. KIM TALL BEAR IS A PROFESSOR AT THE UNIVERSITY OF ALABAMA AND HER BOOK NATIVE AMERICAN DNA IS THE AUTHORITATIVE TAKE IN THE WAY THAT IN DIG NEWS PEOPLE HAVE USED FOR THEIR OWN GENOMIC SCIENCE. I WANTER TO STATE MY GOALS. AND TO BRING VISIBILITY TO INVOLVEMENTS IN SCIENCE AND MEDICINE SO OFTEN INDIGENOUS PEOPLE -- MUCH OF WHAT WE KNOW ABOUT CONDITIONS LIKE DIABETES WOULD NOT BE POSSIBLE. DOESN'T MEAN THAT WE CAN'T KNOW THINGS BUT WHAT WE DO KNOW HAS BEEN A RESULT OF RESEARCH DONE WITH INDIGENOUS PEOPLES. I'M ALSO HOPING IF I STILL HAVE IT TO HOLD YOUR ATTENTION AND WHAT ARE BASKETBALL WA -- BETTER WAY TO DO THAT THAN TO GIVE YOU AN EXPLOSION. A FIRE THAT IS HAPPENING UNDERGROUND IN NEW YORK CITY WHERE A MANHOLE WHICH IS LIKE A CAST HOLE COVER WAS BLOWN OFF OF THE STREET BECAUSE THERE WAS A FIRE HAPPENING UNDERWAY. WHY ARE WE LOOKING AT THIS IMAGE? I FOUND MYSELF IN CONVERSATION WITH A MATHEMATICIAN. AND AS SHE EXPLAINED IT TO ME APPLICATIONS OF HER WORK OPTIMIZED GOOGLE SEARCH RATE ORDERS TO HELP PEOPLE FIND WHAT THEY ARE LOOKING FOR. AND SHE WAS USING HER EXPERTISE TO HELP THE ELECTRICITY PROVIDER EDISON PREDICT SUCH FIRES. THESE FIRES IN ADDITION TO DISRUPTING ELECTRICITY SERVICE COULD LEAD TO DANGEROUS EXPLOSIONS OF THESE MANHOLE COVERS. SO TO ADDRESS THE CHALLENGE OF TRYING TO PREDICT AND PREVENT SUCH DANGEROUS DISRUPTIONS TO THE POWER GRID SHE NEEDED TO TEST AND OPTIMIZE THE ALGORITHMS. AND THIS REQUIRED ACCESS TO SUFFICIENTLY COMPLICATED DATASETS THAT WOULD BE USED TO FEED THE ALGORITHM AND I ASKED IF SHE COLLECTED THESE DATASETS ON HER OWN AND SHE SAID NO. I SAID WHERE DID IT COME FROM? SHE SAID I'M WORKING WITH A BUNCH OF DIFFERENT DATASETS. PIMA. I NEED THAT PIMA COULD REFER TO MEMBERS OF AN INDIGENOUS COMMUNITY AND I KNEW THAT THE COMMUNITY HAD AN EXTREMELY HIGH RATE OF DIABETES AND OBESITY WHICH MADE THEM THE FOCUS OF RESEARCH. IN 1990 THOSE LIVING AT THE INDIAN COMMUNITY RESERVATION OUTSIDE OF PHOENIX ARIZONA WHAT RECORDED AS HAVING THE HIGHEST INCIDENTS OF DIABETES. TODAY MEMBERS OF THE COMMUNITY KNOWN TO SCIENCE AS PIMA REFER TO THEMSELVES AS -- WHICH IS TRANSLATED AS A RIVER OF PEOPLE. THIS IS A MAP TO GIVE YOU A SENSE OF WHERE GEOGRAPHICALLY WE ARE IN THE WORLD AND ON THE TOP I APOLOGIZE IT'S A LITTLE BLURRY ON MY SCREEN YOU CAN SEE GILA RIVER. IT'S RIGHT UP AT THE TOP AND THAT IS THE AREA THAT WE'RE TALKING ABOUT. AND THE POLITICAL BOUNDARIES OF THIS COMMUNITY WHICH WAS CREATED IN THE MID-19th CENTURY IS WHAT MADE IT POSSIBLE FOR PUBLIC HEALTH OFFICIALS TO CONCEPTUALIZE THE RESERVATION AS A LABORATORY FOR OBSERVING THE EPIDEMIOLOGY OF DIABETES. MEDICAL INFORMATION COLLECTED HAS BEEN REGARDED AS A VALUABLE RESOURCE FOR IMPROVING GENERAL KNOWLEDGE ABOUT THE DISEASE. IN THE PROCESS AND THIS IS THE CASE STUDY I'M SHARING WITH YOU TODAY IT WAS TRANSFORMED INTO A DIGITAL FORM. AND AT THE CORE OF THE HISTORY OF DATA ABOUT DIABETES AMONG THEM ARE QUESTIONS ABOUT THE ORIGINS AND OWNERSHIP AND REUSE OF PERSONAL AND BODILY DATA THAT FUEL OUR INFORMATION ECONOMY. THE STORY OF HOW PARTICIPANTS IN THE NATIONAL INSTITUTES OF HEALTH BECAME DONORS OF DATA USED TO UNDERSTAND DIABETES AND HOW THAT DATA WAS USED TO DEFINE ALGORITHMS THAT HAD NOTHING TO DO WITH DIABETES OR BODIES BUT ERUPTING MANHOLE COVERS IS EXEMPLARY OF BIG DATA AT LARGE. WHAT MAKES DATA BIG IS NOT ITS SIZE BUT IT'S ABILITY T RADICALLY TRANSCENDS. COMPUTERS AND ALGORITHMS MAKE THAT POSSIBLE BUT UNDERSTANDING IT ALSO REQUIRES ATTENTION TO CREATION AND PROCESSING OF THE DATA ITSELF. -- I'M ARGUING THAT THE HISTORY OF THE DATASET KNOWN AS THE PEOPLE AFTER INDIAN DIABETES DATASET REFERRED TO AS PIDD MAKES POLITICAL AND ECONOMIC SUBJECTIVITY IN A WAY THAT IS OF ENORMOUS CONSEQUENCE. SO JUST TO TELL YOU A LITTLE BIT ABOUT THIS COMMUNITY -- I'M CALLING THEM PIMA I'M USING THE NAME THAT SETTLERS AND SCIENTISTS GAVE TO THE GROUP BUT THEY CALL THEMSELVES RIVER PEOPLE AND -- AND THE SERIES OF FEDERALLY RECOGNIZED GROUPS. THE RESERVATION WAS THE FIRST RESERVATION IN WHAT IS ARIZONA AND IT EMERGED AT A TIME WHEN THERE WAS AGRICULTURAL DOWNTURN TO AGRICULTURAL PROSPERITY. THE CONSTRUCTION -- AND DAMS BY NONNATIVE FARMERS CUT PIMA OFF FROM THE RIVER WITH DEVASTATING CONSEQUENCES. ANTHROPOLOGISTS CAME. THE RESERVATION SYSTEM HAD BEEN IN PLACE AND THE ANTHROPOLOGIST THAT VISITED BELIEVED THAT HE WAS FINDING THIS GROUP WHO HAD WAS UNDERGOING TREMENDOUS CHANGE AND EVEN THOUGH MISSIONARIES AND OFFICIALS -- MODERN REFERENCES WERE COMMENTED FROM THE DELIBERATELY POSED PHOTOS LIKE THIS ONE. AND WHAT I FOUND IS HERE'S AN IMAGE OF FARMING ARTIFACTS. HE WAS ABLE TO COLLECT THESE ARTIFACTS BECAUSE MEMBERS OF THE COMMUNITY WERE NO LONGER ABLE TO USE THEM BECAUSE THE LAND CEASED TO BE AIRABLE. AND AROUND THIS TIME ANOTHER ANTHROPOLOGIST CONSIDERED TO BE ONE OF THE FOUNDERS -- ONLY ONE CASE OF DIABETES IN THE POPULATION IN 1906 BUT OVER THE NEXT 40 YEARS THOSE WHO LIVED ON THE RESERVATION EXPERIENCED STARVATION. SO BETWEEN 1906-07 AND 1908 AND 1955 THE BUREAU WHEN A HOSPITAL OPENED THE INDIAN HEALTH SERVICE BECAME RESPONSIBLE FOR PROVIDING HEALTH CARE FOR THE RESIDENTS OF THE REGION. AND TRIBAL MEMBERS HAVE SINCE ARGUED THAT THE LOSS OF THE LAND COMBINED WITH THE CHANGE OF DIET IS THE REASON WHY THEY HAVE SUCH HIGH RATES OF DIABETES AND OBESITY. PUT FORTH THAT SUCH COMMUNITIES DEVELOPED GENETIC ADAPTATIONS THAT HELPED THEM SURVIVE DURING PERIODS OF FAMINE AND AS YOU CAN SEE IN THE QUOTE HERE HE SOAKED THAT CERTAIN PROBLEMS TO INDIAN HEALTH CAN BE APPROACHED ON THE RESERVATION THAN IN PHOENIX OR TUCSON INCLUDING QUESTIONS OF GENETICS SO THE REASON I POINT THIS OUT IS THAT I WANT TO EMPHASIZE THAT THIS INDIGENOUS COMMUNITY WAS LOCATED ON A VASE -- RESERVATION AND THEY WERE ABLE TO BE STUDIED AS A NATURAL LABORATORY. IGNORED THE FACT THAT THE RESERVATION WAS A SOCIAL CREATION AND SAW THEMSELVES AS HAVING A GROUP OF PEOPLE THAT THEY COULD STUDY IN A MORE BOUNDED WAY THAT RELATED MORE CLOSELY TO THE NONHUMANS THAT THEY HAD STUDIED IN THE LABORATORY. SO, THE WORK THAT WOUND UP HAPPENING HAS BEEN DEFINED AS COOPERATIVE RESEARCH BETWEEN COMMUNITY MEMBERS AND IT FORMALLY BEGAN IN 1963 AND THIS IS WHEN THE NATIONAL INSTITUTES OF ARTHRITIS, DIABETES AND DIGESTIVE AND KIDNEY DISEASES MADE A SURVEY OF RHEUMATOID ARTHRITIS SO THEY WERE NOT EVEN LOOKING FOR DIABETES TO BEGIN W THEY WERE STUNNED TO FIND OUT THAT THERE WERE SUCH HIGH RATES SO THEY GANNON OBSERVATIONAL STUDY. IT WAS SUPPOSED TO LAST FOR 10 YEARS AND IT CONTINUED FOR MORE THAN 40. SO BEGINNING IN 1965 EVERY RESIDENT OF THE PIMA STUDY AREA OF AT LEAST FIVE YEARS OF AGE WAS ASKED TO PARTICIPATE IN A COMPREHENSIVE LONGITUDINAL STUDY OF DIABETES WHICH THEY WERE EXAMINED EVERY TWO YEARS. IN 1984 THE EPIDEMIOLOGICAL SUB GROUP THAT WAS RUNNING THIS BECAME THE CURRENT PHOENIX BRANCH WHICH OVERSAW THE STUDY AND IN THE 1990s THEY CAME TO OVERSEE PREVENTION PROGRAMS WHICH WERE INCORPORATED IN RESPONSE TO CRITICISM THAT WHILE SCIENTISTS HAVE BEEN OBSERVING THE NATURE OF DIABETES IN THIS COMMUNITY FOR SEVERAL -- 30 YEARS VERY LITTLE HAD BEEN DONE TO DIRECTLY ADDRESS OR MITIGATE THOSE ISSUES SO AT THE TURN OF THE 21st CENTURY DESPITE GREAT ADVANCES IN KNOWLEDGE ABOUT DIABETES THERE WERE NO DISCERNIBLE IMPROVEMENTS. TWO LEADERS OF THE PROJECT ARGUED THAT THE PEOPLE AFTER INDIAN MODEL AFFORDS MAJOR ADVANTAGES NOT LEAST OF ALL BECAUSE THE POPULATION IS GENETICALLY HOMOGENEOUS COMPARED TO CAUCASIAN POPULATIONS AND THEREFORE THE CAUSES OF NONINCIDENT DEPENDENT DIABETES ARE LINKED. THE LEGAL AND POLITICAL BOUNDARY FUNCTIONED TO IN CLOSE THE PIMA MAKING THEM APPEAR TO BE A NATURAL LABORATORY IN WHICH TO STUDY DIABETES. THE PIMA INDIANS PATHFINDERS FOR HEALTH REPORTED THAT THESE SCIENTISTS HAVE STUDIED AT LEAST 90% OF THE PEOPLE ON THE RESERVATION AT LEAST ONCE. I'LL READ A SECTION OF THE QUOTE. IT SAYS "ONCE TRUST YOU HAD SCOUTS THEY ARE PATHFINDERS, GIVING A GREAT GIFT TO THE WORLD BY CONTINUING TO VOLUNTEER FOR RESEARCH STUDIES. THEIR GENEROSITY CONTRIBUTES TO BETTER HEALTH FOR ALL PEOPLE AND WE'RE ALL IN THEIR DEBT. IT'S SO IMPORTANT BECAUSE OF THE UNIQUENESS OF THE COMMUNITY. THERE ARE FEW LIKE IT IN THE WORLD." AS WILLIAM KNOLL ERIN NIH RESEARCHER AT THE RESERVATION WHEN HE WAS RECOGNIZED AS ONE OF THE 250 MOST HIGHLY RECOGNIZED RESEARCHERS HE SAID THIS STUDY HAS CONTRIBUTED MUCH TO THE WORLD'S CURRENT UNDERSTANDINGS FOR WHICH WE'RE INDEBTED TO THIS COMMUNITY. THE YEAR THAT PATHFINDERS FOR HEALTH WAS PUBLISHED WAS THE FIRST ONE IN WHICH THE NIH FUNDED LARGE SCALE PROGRAMS INVOLVING PIMA RESIDENTS RAISING CONCERN THAT THE PUBLICATION MAY HAVE BEEN PRODUCED TO -- EXPLOITATION THAT THEY HAD BEEN GUINEA PIGS FOR THE BENEFIT OF OTHERS. THE ISSUE OF COMPENSATION WAS ADDRESSED BY INSURING THAT THOSE WHO PARTICIPATED IN THE STUDY CONTINUED TO RECEIVE MEDICAL CARE BUT ALSO $50 FREE TRANSPORTATION AND A MEAL EACH TIME THEY RECEIVED DIAGNOSTIC TESTING. WHAT WAS UNDERSTAND AS A DONATION BY GIVING THEIR DNA STARTING IN THE MID-1980s I WANT TO SHIFT ATTENTION TO A QUITE DIFFERENT AREA OF EXPERTISE THAT WAS EMERGING IN PARALLEL THAT OF MACHINE LEARNING. OKAY. SO WE'RE SHIFTING FROM THE RESERVATION TO COMPUTERS AND SPOILER ALERT. MACHINE LEARNING DOES IT WORK LIKE THIS BUT IT IS HARD TO FIND AN IMAGE TO MAKE SURE YOU'RE AWAKE AND STILL LISTENING. IT'S A SUB LISTENING OF ARTIFICIAL INTELLIGENCE. AND IT FOCUSES ON ALGORITHMS CAPABLE OF LEARNING OR ADAPTING PARAMETERS WITHOUT HAVING BEEN PROGRAMMED TO DO SO. IT'S A SET OF INSTRUCTIONS OR A CODE. IT DOESN'T HAVE TO BE IN A COMPUTER BUT IT'S A FORM OF SOFTWARE THAT ORGANIZES DATA TO GENERATE MEANINGFUL INFORMATION. IT ALLOWS COMPUTERS TO DO COMPUTATIONAL WORK. ALGORITHMS ARE THE POINT. DATE AS USED TO REFINE THEM. THE FIELD IS A MARRIAGE OF APPLIED MATH AND COMPUTER SCIENCE. MACHINE LEARNING IN THE RELATED FIELD OF STATISTICAL PATTERN RECOGNITION -- IMPROVING BOTH THE SENSITIVITY OF DETECTION AND DIAGNOSIS OF DISEASES AND INCREASING OBJECTIVITY OF THE DECISION MAKING PROCESS. ACCORDING TO AN EARLY EDITORIAL, "UNLIKE PSYCHOLOGY MACHINE LEARNING CAN STUDY THE RELATIVE EFFECTS OF NATURE VERSUS NURTURE" THE AUTHOR WHO WAS BASED IN CALIFORNIA BELIEVED THAT BY LOOKING AT UNPRECEDENTED LARGE AMOUNTS OF SUPPOSEDLY RAW DATA MACHINE LEARNING COULD AVOID FALLING INTO THE TRAP OF HUMAN BIASES AND AN IMPORTANT RESOURCE WAS ESTABLISHED TO AID IN THIS GOAL. THIS IS THE SLIDE THAT YOU CAN RETURN TO IF YOU'RE INTERESTED FOR A CHEAT SHEET ON MACHINE LEARNING. A SCREEN CAP FROM THE UCI MACHINE LEARNIN REPOSITORY. A COLLECTION OF DATABASES, DOMAIN THEORIES AND DATA GENERATORS THAT ARE USED BY THE MACHINE LEARNING COMMUNITY FOR THE EMPIRICAL ANALYSIS OF MACHINE LEARNING ALGORITHMS. AN ARCHIVE OF DATASETS. KIND OF NOT UNLIKE THE FREEZERS THAT I SHOWED YOU EARLIER FILLED WITH BLOOD. IT WAS CREATED IN 1987 BY DAVID AHA WHO WAS THEN A GRADUATE STUDENT AND IT BEGAN AFTER THEY STARTED TO HEAR CALLS -- PEOPLE WOULD SAY IF ONLY WE HAD THE ABILITY TO GET DIFFERENT DATASETS EASILY THEN WE COULD TEST OUR ALGORITHM I'MS AND HAVE WELL VALIDATED RESOURCES. THERE WERE ISSUES OF CREDIT. WHO OWNS THIS DATA? DATA CAN BE HARD TO ACQUIRE AND NOT EVERYBODY IS ALWAYS INTERESTED IN MAKING IT AVAILABLE. THESE ARE QUESTIONS OF OWNERSHIP THAT YOU WILL FIND. LET'S SEE. THERE WAS ALSO CONCERN ABOUT ACCURACY AND HOW TO INSIGHT THE DATASETS. IT WASN'T SO MUCH CREDIT FOR THE VERY ORIGINS OF THE DATA BUT GIVING DATA TO THE PERSON WHO ASSEMBLED THE DATASET AND BY THE FIRST DECADE OF THE 21st CENTURY THE MACHINE LEARNING REPOSITORY ITSELF HAD BEEN CITED OVER A THOUSAND TIMES WHICH MADE I HAD ONE OF THE TOP 100 MOST CITED PAPERS IN ALL OF COMPUTER SCIENCE BUT WHAT IS INTERESTING IS THAT DAVID AHA WHO CREATED THIS REPOSITORY DIDN'T EVEN LIST IT ON HIS CV. SO HE MADE HIS OWN BUT I HAD A CHANCE TO SPEAK WITH HIM AND HE DID ACKNOWLEDGE THAT THE LABOR OF ENCOURAGING PEOPLE TO DONATE THEIR DATASETS CONTINUED TO RAISING HIS PROFILE IN THE MACHINE LEARNING COMMUNITY. TODAY IT IS STILL AVAILABLE. YOU CAN GOOGLE IT RIGHT NOW. AND THE HOME PAGE FOR THE REPOSITORY INCLUDES RECOGNITION. WHY AM I MAKING SUCH A FUSS ABOUT THIS MACHINE LEARNING REPOSITORY? BECAUSE HERE IS WHERE IT'S ALL COMING TOGETHER. ONE OF THE -- OLDEST DATASETS ON FILE WAS THE PIMA INDIAN'S DIABETES DATASET WHICH WAS DONATED IN 1990. THE DATASET IS OFTEN REFERRED TO BY ITS INITIALS PIDD AND HAS BECOME A STANDARD FOR TESTING DATA MINING ALGORITHMS IN PREDICTING DIABETES STATUS. THESE VARIABLES WERE EXTRACTED FROM PAPER PATIENT RECORDS. NOT TALKING ABOUT DNA OR BLOOD BUT THESE ARE THE ATTRIBUTES. THIS WAS DATA THAT NIH RESEARCHERS WERE RECORDING AS THEY TALKED TO PEOPLE AND YOU'LL NOTICE A NUMBER OF TIMES -- THIS IS THE DATA SET OF 768 INSTANCES LOOKING AT ASKING PEOPLE HOW MANY TIMES THEY'VE BEEN PREGNANT AND RECORDING THE RESULTS OF GLUCOSE, TELERANS, SKIN FOLD THICKNESS THAT HAS TO DO WITH BODY TYPES AND SOMETIMES WITH RACE. A TWO-HOUR SERUM INSULIN TEST. DIABETES -- KIDNEY FUNCTION WHICH IS TO TRY TO TRACT INHERITANCE, AGE AND THIS CLASS VARIABLE WHICH IS SOMETHING THAT WE DON'T NEED TO WORRY ABOUT WHICH WAS NOT COLLECTED. BUT BASICALLY WHAT WE'RE LOOKING AT HERE IS WHAT COULD HAVE BEEN A PATIENT RECORD THAT YOU MIGHT GO TO YOUR DOCTOR AND GIVE BUT HAVE BEEN COLLECTED OVER A LOT OF TIME AND THESE WOUND UP IN THIS DATABASE SO NO BLOOD IS GOING INTO A FREEZER BUT JUST DATA. AND WHY? WHY? WHY IS THERE DATA ABOUT DIABETES IN THIS MACHINE LEARNING LATE -- DATASET AND WHY IS IT SO VALUABLE? THERE IS LOTS OF DATA ALREADY COLLECTED SO WE WANT TO WORK WITH DATA THAT IS ROBUST BUT DIABETES IS WORTH IT TO LOOK AT BECAUSE IT'S A COMMONLY OCCURRING DISEASE THAT IS VERY EXPENSIVE TO TREAT AND IT ALSO HAS TERRIBLE COMPLICATIONS THAT MIGHT BE ABLE TO BE PREVENTED. 7 THIS ALL SOUNDS REASONABLE AND APPROPRIATE. BUT I WANT TO TAKE A CLOSER LOOK. THE REPOSITORY THAT IS NOT SPECIFICALLY ABOUT MEDICINE OR HEALTH OR DIABETES I. IT'S MERELY THERE FOR PEOPLE WITH ALGORITHMS TESTING FOR ANY KIND OF RESOURCE INCLUDING WHEN MANHOLE FIRES ERUPT UNDERGROUND. WHAT MAKES IT VALUABLE IS PEOPLE KNOW THAT IT CAN BE RELIABLE TO USE TO PREDICT WHEN PEOPL PEOPLE MAY GET DIABETES. THE ORIGINAL DONOR IT'S NOT ANYONE FROM THE RESERVATION IT'S SOMEONE NAMED VINCENT SIGILITO FROM THE JOHNS HOPKINS AND IF YOU DO A LITTLE DIGGING YOU SEE THAT THE APPLIED PHYSICS LAB IS LOCATED NOT FAR FROM JOHN HOPKINS SCHOOL OF PUBLIC HEALTH WHICH IS CRUCIAL. THE NIH IS JUST DOWN THE ROAD. AND WHAT BECAME CLEAR IS THAT IS DAVID AHA WHO HAD BEEN COLLECTING AND ASSEMBLING DID A POST DOC AT JOHNS HOPKINS AND THAT IS HOW THE DATASET WOUND UP IN THE REPOSITORY. THE DATASET HAD BEEN CONSTRUCTED BY THE NIDDK. AND AS AND YOU CAN SEE HERE -- THIS IS A SCREEN CAP THAT I TOOK FROM THE MACHINE LEARNING REPOSITORY BACK IN 2015 NO IN 2017 WHERE IT HAD BEEN ACCESSED 216,576 TIMES. SO THIS IS A VERY HIGHLY VISITED DATASET BUT I STILL HAVE NOT MADE CLEAR HOW WE GET FROM THE RESERVATION TO THE APPLIED PHYSICS'S LABORATORY WHICH IS BEST KNOWN FOR PRODUCING GUIDED MISSILES TO -- HOW DID WE GET FROM POINT "A" TO POINT "B"? 1981 WILLIAM KNOLLER WHO SPENT A LOT OF TIME WORKING CLOSELY WITH PEOPLE ON THE RESERVATION PUBLISHES A STUDY DIABETES INCIDENTS IN PIMA INDIANS. TRYING TO TRACK THIS RESEARCH. AND THEN THAT RESEARCH WINDS UP GETTING -- HE IS ALSO ON THIS PAPER IN 1988. WINDS UP INTERSECTING WITH PEOPLE WHO ARE INTERESTED IN DEVELOPING NEW KINDS OF WAYS OF USING COMPUTERS TO PREDICT DIABETES AND IN ORDER TO DO THAT THEY HAVE TO TRANSFER THOSE VARIABLES INTO A PUNCH CARD. SO YOU CAN SEE WHERE ALL OF THESE Xs ARE IN THE HOLES. THIS IS LIKE AN EARLY COMPUTATIONAL TECHNOLOGY WHERE DATE THAT THAT MIGHT HAD BEEN LISTED IN A PATIENT CHART IS TURNED INTO A FORM THAT CAN BE DIGITIZED AND THAT DIGITALLAL KNOWLEDGE IS FED INTO THE COMPUTER TO SEE IF IT'S POSSIBLE TO USE THESE VARIABLES TO ANTICIPATE WHEN SOMEBODY U SOMEONE IS GOING TO DEVELOP DIABETES AND I CANNOT SEE YOU TO SEE IF YOU'RE FOLLOWING THIS. WE HAVE A LARGE AMOUNT OF MESSY DATA THAT IS BEING COLLECTED AND PUT INTO MEDICAL CHARTS AND THEN TRANSLATED INTO A SMALLER SUBSET OR A 1981 STUDY WHICH IS THEN BEING RECODED TO BE USED TO TEST IT IN A 1988 STUDY AND ALL ARE FOCUSED ON DIABETES RESEARCH. AND YOU CAN SEE THIS IS JUST A LITTLE BIT FROM THIS 1988 PAPER THAT THEY DEFINED THEIR POPULATION AS BEING BOUNDED BY THE RESEES VASE. THEY DREW LONGITUDINAL RECORDS. AND THEY DECLARED THIS TO BE A WELL VALIDATED DATA RESEARCH AND IF ANYONE IN THE AUDIENCE HAS WORKED WITH MODEL ORGANISMS YOU WANT TO WORK WITH ORGANISMS THAT ARE WELL-KNOWN BECAUSE THAT MEANS YOUR RESULTS ARE GOING TO BE MORE TRUSTWORTHY TO OTHERS BECAUSE THEY WILL KNOW THAT IS THE BASIS FOR THE CLAIMS BEING MADE. NOW, WHAT SURPRISES ME IS THAT WE GET FROM A SITUATION WHERE WE'RE USING DATA COLLECTED FROM INDIGENOUS PEOPLE FOR DIABETES RESEARCH AND BY 2006 THIS DATABASE HAS BECOME SO STANDARD THAT IT'S BEING USED TO TEACH PEOPLE HOW TO USE R WHICH IS ONE OF THE MAJOR STATISTICAL SOFTWARE PACKAGES SO WHAT WE CAN SEE HERE IS THE DESCRIPTION OF A HOMEWORK ASSIGNMENT THAT IS NOT REALLY ABOUT 3 STUDENTS WHO ARE INTERESTED IN MEDICAL OR HEALTH INFORMATION. IT'S PURELY ABOUT TEACHING THEM HOW TO USE DATA. AND IT'S FROM THERE THAT THIS DATASET IS ABLE TO TO BE ACCESSED FOR ALL KINDS OF PURPOSES AND THIS COMPLEX HISTORY IS EFFECTIVELY ERASED AND ALL THAT WE'RE TOLD IS A DATASET LOOKING AT DISTRICT AND PIMA INDIAN WOMEN WHO ARE 21 YEARS LIVING IN ARIZONA. BUT ALL OF THIS INFORMATIONS -- IS BESIDE THE POINT FOR A STUDENT THAT IS JUST BEING ASKED TO ACHIEVE A DESIRED RESULT. WE CAN SEE WHAT HAS HAPPENED HERE. THE DATASET LIKE I SAID BY VIRTUE OF THE FACT THAT AND HAD CONTINUED TO BE FOR MANY YEARS HAS BEEN USED TO REFINE ALGORITHMS INTENDED FOR KNOWLEDGE DISCOVERIES THAT HAD NOTHING TO DO WITH DIABETES. I ASKED DAVID WHY THIS DATASET? WHY DID HE THINK IT BECAME ONE OF THE MOST POPULAR WIDELY USED DATASETS AND HE SAID WELL DIABETES SEEMS IMPORTANT TO PEOPLE SO PEOPLE GRAVITATE TOWARDS IT. MAYBE THEY HAVE TRUST IN THE WAY THE DATA WAS COLLECTED. IT WAS NOT OVERLY LARGE. ONLY HAD 8 VARIABLES. AND THE ATTRIBUTES WERE STRAIGHT FAIRED. EASILY SUPPOSEDLY TO CODE. I'M HAMMERING ON THIS BECAUSE I WANT TO POINT OUT THAT TODAY'S MACHINE LEARNING SCIENTISTS DON'T OFTEN LEARN THE ORIGINS OF THE DATA THEY FIELD THEIR ALGORITHMS. -- IT'S SEEN AS ONE OF THE OTHER ADVANTAGEOUS QUALITIES EVEN IF THE DATA ITSELF AS IN THE CASE OF THE PIDD IS IN FACT A PRODUCT OF COLONIALISM AND ECONOMIC STRUGGLE AND BIO-- SUFFERING. SO WHERE DOES THIS LEAVE US? I WANT TO SPEND THE LAST MOMENT WITH YOU THINKING ABOUT THE WAY IN WHICH PEOPLE BECOME DATA. I'VE TOLD YOU THIS STORY ABOUT THE STATUS OF MEMBERS OF INDIGENOUS COMMUNITIES. PARTICIPATING VOLUNTARILY AS IT IS POSSIBLE TO DO SO UNDER THE CIRCUMSTANCES IN WHICH THEY FOUND THEMSELVES. CONTRIBUTING TO DATA THAT WOUND UP BEING USED FOR THINGS THAT HAD NOTHING TO DO WITH DIABETES EVEN AS THEY CONTINUED TO SUFFER FROM HIGH RATES OF DIABETES AND BRINGING IT HOME TO TODAY. A MIXED -- A MIDST OF A TERRIFYING PANDEMIC THERE HAS BEEN A LOT OF CELEBRATION OF THESE DATA COLLECTION TECHNOLOGIES LIKE CONTACT TRACING BUT WE'RE ALREADY SEEING THE WAYS IN WHICH PEOPLE ARE RECOGNIZING WELL WHO'S GOING TO BENEFIT FROM THIS DATA? ON THE ONE HAND YES WE WANT TO MINIMIZE THE CIRCULATION. ON THE OTHER HAND WHO IS DESIGNING THESE APPS. WHO WILL HAPPEN WITH THE DATA. WHAT KIND OF FREEZERS ARE THEY PUTTING IT TO. AND THIS IS DAY STORY THAT RAN IN THE WASHINGTON POST JUST RECENTLY. IT WAS ACTUALLY LAST MONTH THAT ONE OF THE FIRST CONTACT TRACING APPS VIOLATED ITS OWN PRIVACY POLICY AND I DON'T KNOW, I DON'T THINK I HAVE A SCREEN CAP OF THIS BUT MANY PEOPLE IN THE EARLY DAYS OF THE PANDEMIC WERE LOOKING AT "NEW YORK TIMES" COVERAGE OF THE WAY IN WHICH CELL PHONES WERE BEING USED TO SEE HOW PEOPLE WERE MOVING. ON THE ONE HAND IT'S POSSIBLE TO FEEL LIKE WOW WHAT A POWERFUL TECHNOLOGY. WHAT A POWERFUL RESOURCE FORESEEING MOBILITY. ON THE OTHER HAND WE SHOULD TAKE PAUSE WHAT DOES IT MEAN THAT PRIVATE COMPANIES ARE ABLE TO HAVE THIS INFORMATION AND WE'RE NOT SURE HOW IT'S GOING TO BE USED BOTH IN THE PRESENT AND ALSO DOWN THE LINE. SO WHY MEDICAL HISTORY MATTERS TO MACHINE LEARNING IS BECAUSE IN THIS MOMENT WHEN WE START TO HEAR CRITIQUES ABOUT THE USES OF DATA AND THEIR ETHICAL USES, WELL LET'S LOOK AT BIOETHICS AND WE'LL MAKE A DATA ETHICS BUT I WANT TO MAKE A DIFFERENT SUGGESTION THAT GIVEN THE WAYS IN WHICH OUR ATTENTION TO COMPLEX HISTORICAL PROCESSES SHOWS THAT SOMETIMES EVEN THE BEST OF INTENTIONS ARE UP ENDED BY THE MOMENTUM OF THE TECHNOLOGICAL SYSTEMS THAT PEOPLE FIND THEMSELVES IN. WE HAVE A CHANCE TO LOOK AT THE HISTORY OF BIOETHICS ITSELF TO SEE WHERE IT HAS NOT AFFORDED ADEQUATE PROTECTIONS AND COME UP WITH A BETTER WAY OF THINKING ABOUT HOW TO THINK ABOUT THE PEOPLE THAT PRODUCE THE DATA THAT WE WANT TO USE RESPONSIBLY. WE MIGHT THINK ABOUT THE LIMITATIONS OF INFORMED CONSENT. TO THINK ABOUT WHAT IT MEANS TO COMPENSATE SOMEONE FOR "PARTICIPATION." AM I ACTUALLY PARTICIPATING WHEN I CARRY AROUND MY CELL PHONE. I HAD TO OPT OUT -- RATHER THAN BEING ASKED TO OPT IN. I ALSO THINK WE NEED TO REASSESS THE PRINCIPLES OF AUTONOMY AND PRIVACY. WE GET DIFFERENT KINDS OF WAYS OF THINKING OF ACCOUNTABILITY AND RESPONSIBILITY. AND SO AS I MOVE TOWARDS MY LAST SLIDE I WANT TO POINT OUT THAT ANY TIME YOU HEAR THE PHRASE RAW DATA IT'S RAW DATA I WANT TO YOU ACTUALLY ASK OR THINK THAT DATA IS ALREADY COOKED. WE SHOULD BE ASKING AND RETURNING TO SOME OF THE FOOD METAPHORS. WHOSE LABOR IS INVOLVED IN GENERATING THE INGREDIENTS. WHAT EFFORTS HAVE BEEN INVOLVED TO PREPARE THEM. WILL IT LEAD TO SERIOUS PROBLEMS. IS IT POSSIBLE TO PROCESS DATA SO MUCH THAT IT BECOMES UNHEALTHY OR UNUSEFUL. TO USE DATA SO MANY TEAMS THAT IT BECOMES SO DISCONNECTED THAT PRETENDING THAT THERE IS ANYTHING NATURAL ABOUT IT IS MISLEADING AND WHO GETS TO BE AT THE TABLE WHEN THESE MEALS ARE SERVED? WHO'S GOING TO BENEFIT FROM THE USES OF DATA THAT ARE BUILT FROM PEOPLE NOT JUSTIN DIG NEWS PEOPLE FROM ALL OF US. THIS IS THE FINAL SLIDE. THE DATASET IS NO LONGER AVAILABLE IN THE TIME SINCE I PUBLISHED THIS PAPER WHEN I WENT BACK TO CHECK AND FIND OUT HOW MANY TIMES IT HAD BEEN CITED I FOUND THE BELOW. I'M SORRY THE PIMA INDIAN'S DATASET NO LONGER EXIST. I HAVE NOT HAD MUCH SUCCESS IN FINDING OUT WHAT HAPPENED. BUT I WOULD LIKE TO THINK THAT THE HISTORY OF DATA OF PEOPLE LIKE MYSELF AND OTHERS ARE BEGINNING TO TELL ARE THINKING DIFFERENTLY ABOUT WHAT IT MEANS TO REUSE DATA FROM PEOPLE WHO CONTINUE TO SUFFER FOR THE REASONS THAT THE DATA WAS RINGLY COLLECTED. -- I WANT TO LEAVE YOU WITH THE IDEA OF A GROUP THAT HAS EMERGED CALLED THE SUMMER INTERNSHIP FOR INDIG NEWS PEOPLE -- TO HELP PRODUCE FORMS OF KNOWLEDGE THAT THAT CAN BE RELIABLY SERVING THEIR COMMUNITIES AND I FEEL TREMENDOUSLY INSPIRED AND EXCITED BY THE WAYS IN WHICH THESE KINDS OF EFFORTS CAN HELP US TO PRODUCE FORMS OF KNOWLEDGE THAT ARE REALLY DURABLE BECAUSE THEY DON'T ERASE THE CIRCUMSTANCES OF THEIR ORIGINS. SO THANK YOU FOR YOUR ATTENTION AND LISTENING TO THIS STORY AND I WOULD BE VERY HAPPY TO FOLLOW-UP AND HEAR YOUR QUESTIONS AND I'M LINK TO THE PUBLISHED VERSION OF THIS TALK IF YOU WANT TO READ MORE CLOSELY SOME OF THE CLAIMS I'VE BEEN MAKING. THANK YOU SO MUCH. >> THANK YOU VERY MUCH FOR AN OUTSTANDING PRESENTATION THIS AFTEROON. WE HAVE A FEW MINUTES FOR QUESTIONS AND THE WAY WE'LL DO THIS IS THROUGH FOR THOSE WHO ARE WATCHING ALL WHO ARE WATCHING ON-LINE IF YOU SCROLL TO THE BOTTOM OF THE SCREEN THERE IS A BOX THAT SAYS SEND LIVE FEEDBACK AND YOU CAN SEND YOUR QUESTIONS OR IF YOU'RE FOLLOWING ON TWITTER -- YOU CAN USE THAT HASHTAG OR INSTANT MESSAGE ME USING MY HANDLE. I DO HAVE ONE QUESTION. THAT HAS COME IN THROUGH A VIDEOCAST WEBSITE. THIS IS A QUESTION ABOUT DATA ETHICS. IT SEEMS THAT MOST IF NOT ALL BIG DATE AS NOW GLOBALLY AVAILABLE THIS INDIVIDUAL WRITES. IF WE ADDRESS ETHICAL CONCERNS IN THE U.S. DOES IT DO ANYTHING TO PROTECT PRIVACY AND PERSONNEL RIGHTS WHEN THEY ARE LOOKING TO BUILD AND TEST THEIR OWN ALGORITHMS? >> THAT IS A GREAT QUESTION AND I HAVE A COMMENT AND A READING SUGGESTION. THE COMMENT IS THAT IN SOME WAYS THERE ARE MUCH STRONGER DATA PROTECTION RULES IN OTHER PARTS OF THE WORLD THAN THERE ARE IN THE UNITED STATES. BUT I DON'T THINK THAT GETS TO THE CORE. QUESTION. WHICH KIND OF TO MY MIND IS LIKE AN ACCOUNT OF -- IF WE DON'T DO IT THEY WILL BUT ALSO THE WAY IN WHICH FEDERAL ORGANIZATIONS LIKE THE NIH WHICH IN THE SERVICE OF TRANSPARENCY WANT TO MAKE DATA AVAILABLE BECAUSE IT'S WITH TAXPAYER FUNDS. BUT IT ALSO MAKES IT AVAILABLE TO THE PRIVATE SECTOR. YOU'RE RIGHT TO SEE THAT THERE ARE VERY COMPLICATED ISSUE THAT'S EMERGE. I WANT TO RECOMMEND THE WORK OF SABINA LONELI WHO IS A IF I LOSS FOR OF SCIENCE. LLEOENI. >> THANKS TO THE INDIVIDUAL THAT SENT THAT INSIGHTFUL QUESTION. WE HAVE TIME FOR ONE MORE QUESTION IF ANYONE WISHES TO SEND ONE IN. IF WE DON'T HAVE ANY WHAT I WOULD LIKE TO SHARE WE HAVE A FEW INDIVIDUALS THAT WROTE IN P. GREAT TALK. LOTS OF FOOD FOR THOUGHT AND THANK YOU VERY MUCH DR. RADIN. AND ON THOSE NOTES I'M GOING TO THANK YOU ON BEHALF OF THE NATIONAL LIBRARY OF MEDICINE FOR YOUR VARIABLE TIME AND YOUR FANTASTIC EXPERTISE AND FOR WORKING WITH ME AND MY COLLEAGUES TO ARRANGE THIS TALK DURING SUCH A CHALLENGING TIME FOR EVERYONE. WE WISH YOU EVERY CONTINUED SUCCESS IN YOUR RESEARCH IN THE COMING WEEKS AND MONTHS AND YEARS. >> THANK YOU.