Ifeoma Ajunwa: Thank you very much, danah. With that, I want to say thank you all for com­ing. I also want to briefly give a spe­cial thanks to danah, to Eszter, and to Seth, who all made my being here pos­si­ble today. I’ll be talk­ing with you today about genet­ic coer­cion. It’s a soci­ole­gal con­cept that I’m still devel­op­ing and for which I would appre­ci­ate and love your intel­lec­tu­al pushback.

The mere exis­tence of a [genet­ic] tech­nol­o­gy con­tains an implic­it coer­cion to use it…Sometimes the coer­cion is more than implicit.
Lori Andrews, bioethi­cist and law pro­fes­sor, Future Perfect: Confronting Decisions about Genetics

So in think­ing about genet­ic tech­nol­o­gy, we have to think about what it means to have it and what that implies in terms of social atti­tudes and also legal impli­ca­tions. Chromosomes were first dis­cov­ered in the late 1800s, and by the ear­ly 1900s, inher­it­ed dis­ease had been linked to chro­mo­somes. After Watson and Crick—and let’s not for­get Rosalind Franklin—discovered the mol­e­c­u­lar struc­ture of DNA in 1953, this bol­stered the already-present social belief that the work­ings of the human body could be summed up through genet­ic infor­ma­tion. And this spurred the devel­op­ment of genet­ic tests. I argue that genet­ic test­ing as a tech­nol­o­gy, as it becomes more acces­si­ble, there’s an atten­dant genet­ic coer­cion prod­ding American cit­i­zens the relin­quish their genet­ic data in the name of the social good.

So what do I mean when I say genet­ic coer­cion? I define it as the over­whelm­ing eco­nom­ic, social, and moral com­pul­sion to scru­ti­nize and police the genome that an indi­vid­ual expe­ri­ences. And to be sure, we have to real­ly break that apart. What do I mean by eco­nom­ic com­pul­sion? Well, this derives from the lack of uni­ver­sal health­care which ren­ders life that is infirm or frail finan­cial­ly dif­fi­cult to sus­tain, and the social com­pul­sion that stems from the reifi­ca­tion of genet­ic data as the key to social life such that non-conforming genes must be exposed. In The DNA Mystique, the authors illus­trate the high social val­ue now accord­ed to DNA. And I quote,

As the sci­ence of genet­ics has moved from the lab­o­ra­to­ry to mass cul­ture, from pro­fes­sion­al jour­nals to the tele­vi­sion screen, the gene has been trans­formed. Instead of a piece of hered­i­tary infor­ma­tion, it has become the key to human rela­tion­ships and the basis of fam­i­ly cohe­sion. Instead of a string of purines and pyrim­idines, it has become the essence of iden­ti­ty and the source of social dif­fer­ence. Instead of an impor­tant mol­e­cule, it has become the sec­u­lar equiv­a­lent of the human soul.
Dorothy Nelkin and M. Susan Lindee, The DNA Mystique: The Gene as a Cultural Icon

So what does this mean in the con­text of genet­ic coer­cion? Well, if the DNA is a sec­u­lar equiv­a­lent of the human soul, then the moral com­pul­sion stems from the idea of genet­ic hygiene for the bet­ter­ment of soci­ety. It is a moral duty of the indi­vid­ual to scrub from her germline dele­te­ri­ous genet­ic muta­tions that would be passed down to future gen­er­a­tions. This idea is not a new one. In fact, it is direct­ly linked to America’s eugenic past.

We have seen more than once that the pub­lic wel­fare may call upon the best cit­i­zens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these less­er sac­ri­fices, often not felt to be such by those con­cerned, in order to pre­vent our being swamped with incom­pe­tence. It is bet­ter for all the world if, instead of wait­ing to exe­cute degen­er­ate off­spring for crime or to let them starve for their imbe­cil­i­ty, soci­ety can pre­vent those who are man­i­fest­ly unfit from con­tin­u­ing their kind. Three gen­er­a­tions of imbe­ciles are enough.
Supreme Court Justice Oliver Wendell Holmes, Buck v. Bell, 1927

The sen­tence Three gen­er­a­tions of imbe­ciles are enough,” is a well-known one in American law, and it is found in the Supreme Court opin­ion writ­ten for the 1927 case of Buck v. Bell. This case effec­tive­ly legit­imized the eugen­ics move­ment in the United States. In it, the Supreme Court ruled that it was law­ful to force­ful­ly ster­il­ize, on a mas­sive scale, per­sons deemed social­ly inad­e­quate to bear chil­dren. Unfit per­sons includ­ed the poor, the illit­er­ate, the blind, deaf, deformed, dis­eased, orphans, ne’er-do-wells, home­less, tramps, pau­pers, as well as crim­i­nals and the men­tal­ly insane.

The ten­den­cy to be unem­ployed may run in our genes.
Richard Herrnstein, Harvard psy­chol­o­gist and co-author, The Bell Curve

Following with this idea is the rise of genet­ic expla­na­tions for social behav­ior. So that case was a 1927 case, how­ev­er Troy Duster in his book Backdoor to Eugenics has actu­al­ly found that there have been sub­se­quent waves of a rise of genet­ic expla­na­tions for what had pre­vi­ous­ly been con­sid­ered social behav­ior depen­dent on the envi­ron­ment or oth­er factors. 

So for exam­ple, he found evi­dence that between 1976 and 1982, there was a 231% increase in assert­ing a genet­ic basis for crime, men­tal ill­ness, intel­li­gence, and alco­holism. He also found that from 1983 to 1988, there were arti­cles assert­ing a genet­ic expla­na­tion for crime and also unem­ploy­ment. In fact, Richard Herrnstein, a Harvard psy­chol­o­gist who lat­er went on to write the infa­mous Bell Curve with Charles Murray, pre­ferred that there could be a genet­ic expla­na­tion for unem­ploy­ment, not just mere­ly social factors.

Where does the roots of genet­ic coer­cion come from? Today, genet­ic coer­cion does not speak in the thun­der­ous lan­guage of eugen­ics, shout­ing about crim­i­nal nature or racial infe­ri­or­i­ty. Rather, it gen­tly whis­pers the rhetoric of per­son­al knowl­edge and agency. We are told that genet­ic test­ing affords knowl­edge and also the pow­er to act. Yet, we should ask to whom does this pow­er tru­ly fall? In The History of Sexuality, Michel Foucault notes biopow­er is gov­ern­men­tal pow­er over oth­er bod­ies. It is an explo­sion of numer­ous and diverse tech­nolo­gies for achiev­ing the sub­ju­ga­tion of bod­ies and the con­trol of pop­u­la­tion. Therefore biopow­er, when applied to the phe­nom­e­non of genet­ic test­ing, speaks to the gov­ern­men­t’s inter­est in fos­ter­ing the health of its pop­u­la­tion. And also in reg­u­lat­ing new life, par­tic­u­lar­ly when such life might be deemed bur­den­some to the state. Thus, we must remem­ber that while genet­ic test­ing is most fre­quent­ly framed in pos­i­tive terms as life-promoting, it is also life-limiting because it seeks to pro­mote only cer­tain kinds of life, life that is deemed healthy and use­ful to society.

Genetic test­ing most fre­quent­ly is enlist­ment of the indi­vid­ual cit­i­zen as an agent of the state in polic­ing her own bios. So what do I mean by that? For one, genet­ic test­ing is pre­sent­ed to African-Americans as a way to dis­cov­er your roots, so genealog­i­cal test­ing. It is also pre­sent­ed to Jewish-Americans as a way to dis­cov­er if you car­ry the BRCA1 or BRCA2 mutat­ed genes for breast can­cer because this will give you greater agency to make choic­es that might affect your future risk of the dis­ease. And as we saw in the case of Angelina Jolie Pitt, such test­ing does prompt life-changing actions, such as surgery to remove the ovaries or the breasts.

So what is the promise of genet­ic test­ing, how­ev­er, when it comes to future gen­er­a­tions? I want to quick­ly show this video. 

Essentially you see that genet­ic test­ing and the atten­dant relin­quish­ment of genet­ic data is pre­sent­ed as some­thing you do for the greater good, right, to per­fect the next gen­er­a­tion. It’s still you, just a bet­ter you.

So with that, let’s think about all the ways that our genet­ic data leaves us. What are the genet­ic data streams? You have genet­ic data leav­ing us for genealog­i­cal pur­pos­es like I men­tioned, like for exam­ple African-Americans seek­ing what are called roots” search. We also have genet­ic test­ing for health pre­dic­tive rea­sons. So, 23andMe has its health pre­dic­tive kits, where it can tell you your prob­a­bil­i­ty of risk for cer­tain dis­eases such as Alzheimer’s, for exam­ple. You also have genet­ic test­ing for repro­duc­tive pur­pos­es, where peo­ple engage in genet­ic test­ing pri­or to get­ting pregnant. 

And then you have pre­na­tal genet­ic test­ing where, for exam­ple, women of advanced” mater­nal age (by which they mean any­one over 35) expe­ri­ence social pres­sure and also pres­sure from the doc­tors to engage in genet­ic test­ing to detect chro­mo­so­mal abnor­mal­i­ties for their chil­dren. We also have new­born genet­ic test­ing, which is man­dat­ed by the state. So in all 50 states and the District of Columbia, the law says that once a child is born, that child must be sub­ject to genet­ic test­ing to detect both hered­i­tary and con­gen­i­tal defects. Which yes, this is use­ful because for exam­ple there’s PKU, which is a con­di­tion that can kill a child short­ly after birth if not imme­di­ate­ly detect­ed and which is very cor­rectable. And such test­ing does enable for that to be cor­rect­ed. But you still have to ask…basically the new­born is forced to relin­quish his or her genet­ic data at birth with­out their con­sent. Their par­ents make that con­sent for them.

And the newest stream of genet­ic data is now actu­al­ly work­place well­ness pro­grams. So what are these? Workplace well­ness pro­grams are pro­grams in the work­place real­ly for the pri­ma­ry goal of reduc­ing health­care costs of the employ­er and also boost­ing pro­duc­tiv­i­ty by cre­at­ing a health­i­er, fit work body. But the prob­lem is that work­place well­ness pro­grams, because they have been pitched as essen­tial­ly pro­mot­ing the health of employ­ees, they enjoy great sup­port by the gov­ern­ment such that the gov­ern­ment allows cer­tain excep­tions to laws that exist. For exam­ple, a new law that came out through the EEOC is that work­place well­ness may col­lect genet­ic infor­ma­tion via fam­i­ly med­ical his­to­ry from employ­ees, with­out vio­lat­ing the Genetic Information Nondiscrimination Act. So work­place well­ness is now anoth­er way for your genet­ic data to get out.

And then final­ly we have to sit­u­ate genet­ic coer­cion with­in the mythol­o­gy of Big Data. And what do I mean by that? As danah boyd and Kate Crawford have observed, there’s a mythol­o­gy attached to Big Data, and that mythol­o­gy is,

the wide­spread belief that large data sets offer a high­er form of intel­li­gence and knowl­edge that can gen­er­ate insights that were pre­vi­ous­ly impos­si­ble, with the aura of truth, objec­tiv­i­ty, and accuracy.
boyd, danah and Kate Crawford. (2012). Critical Questions for Big Data: Provocations for a Cultural, Technological, and Scholarly Phenomenon.” [draft PDF at danah​.org]

Genetic coer­cion is sim­i­lar­ly sit­u­at­ed with­in that sort of mythol­o­gy. The mythol­o­gy of genet­ic coer­cion is thoughts that genet­ic data, espe­cial­ly large-scale genet­ic data­bas­es, have the abil­i­ty to pin­point cer­tain risk of dis­ease. They pro­vide agency to act to pre­vent such dis­ease, and it can be used to cre­ate accu­rate per­son­al­ized treat­ment for dis­ease, and it should also be entrust­ed with the author­i­ty to dic­tate the mod­i­fi­ca­tion of the genome for future generations. 

And as we have seen in the cas­es of both the UK and China, this sec­ond part has already been act­ed upon. As you may all know, the UK recent­ly passed a law allow­ing for three-parent chil­dren. It was with the goal of essen­tial­ly erad­i­cat­ing dis­eases from the germline. And China has recent­ly con­duct­ed exper­i­ments using CRISPR, which is a gene-editing tool in which they basi­cal­ly went in and mod­i­fied the germline of an embryo.

Perhaps I should explain what I mean by a germline. What I mean by a germline mod­i­fi­ca­tion essen­tial­ly is when a mod­i­fi­ca­tion is made with­in a gene such that that mod­i­fi­ca­tion will be passed on to any sub­se­quent off­spring and not just present in the spe­cif­ic indi­vid­ual that had the gene modified.

With all these ways that our genet­ic infor­ma­tion leaves us, all these streams of genet­ic data, we should ask, Is my genet­ic data secure?” Well, the alarmist answer would be a resound­ing no.” But the more accu­rate answer is prob­a­bly, I don’t know.” And igno­rance is not bliss. So as you see here, these are the report­ed data breach­es for health and med­ical care data for 2012, 2013, and 2014. However, what you see here [is] what is actu­al­ly known. So there’s actu­al­ly more data breach­es than are actu­al­ly report­ed. So that should give you pause because you might think, I haven’t heard any­thing. My data is all good.” Maybe, maybe not. And as I say, igno­rance is not bliss.

And we should also be wary par­tic­u­lar­ly of the large-scale col­lec­tion of genet­ic data from new­borns, because there are no hard and fast rules as to what hap­pens to that actu­al genet­ic mat­ter. It’s just a speck of blood that usu­al­ly tak­en, but any­body with genet­ic knowl­edge knows that speck of blood is a lot. It con­tains a lot of infor­ma­tion. And there’s no hard and fast rules as to what hap­pens to that speck of blood. There’s no hard and fast rules to ensure that it’s destroyed after genet­ic test­ing, or that it is accu­rate­ly or secure­ly secured from data breach­es. So we should be concerned.

I also did want to men­tion gene theft and genet­ic iden­ti­ty theft. Gene theft is actu­al­ly not against the law. What does that mean? It means if I drink from this bot­tle and leave it here and I exit, you are per­fect­ly with­in the fed­er­al law (some states do now have laws) to take this bot­tle, send it to a genet­ic test­ing com­pa­ny, and dis­cov­er my full genome. So gene theft is actu­al­ly not a fed­er­al crime in the US. It is in the UK, but in many juris­dic­tions all over the world and includ­ing the US it is not. 

Genetic iden­ti­ty theft is also some­thing that’s on the rise. This might sound futur­is­tic to you, but it’s actu­al­ly a fact. Researchers in Israel have dis­cov­ered that it is pos­si­ble to, just by know­ing the code, not hav­ing any genet­ic mate­r­i­al from a per­son, but just know­ing their genom­ic code, to cre­ate mate­r­i­al that mim­ics that per­son­’s genet­ic mate­r­i­al such that that mate­r­i­al can be left at a crime scene, lead­ing inves­ti­ga­tors to believe that a dif­fer­ent per­son com­mit­ted a crime than actu­al­ly did. So this is real­i­ty. And then of course there’s the data breach­es that hap­pen fre­quent­ly. Anthem is a health­care insur­er that just announced a major data breach. And it is worth not­ing that elec­tron­ic health records are actu­al­ly the most lucra­tive data for data thieves. It’s actu­al­ly more lucra­tive than cred­it card data.

So why should we care about genet­ic data secu­ri­ty? Well, genet­ic data secu­ri­ty does have impli­ca­tions for both pri­va­cy and dis­crim­i­na­tion. From the pri­va­cy aspect, we have to rec­og­nize that there still is social stig­ma towards dis­ease, par­tic­u­lar­ly cog­ni­tive dis­eases. Much research has been done to show that there is espe­cial­ly a stig­ma attached to Alzheimer’s such that peo­ple who have been diag­nosed,” which is prob­a­bly not the accu­rate word but have been dis­cov­ered to have a propen­si­ty for Alzheimer’s… Note they’re not suf­fer­ing from Alzheimer’s, they just have the propen­si­ty for future dis­ease. Those peo­ple actu­al­ly expe­ri­ence stig­ma, even before dis­play­ing signs of the dis­ease. So that is one of the rea­sons why we should care about privacy.

We should also care about pri­va­cy in the con­text of dis­crim­i­na­tion. In one of my law review arti­cles, I talk about health­ism in the United States. That is basi­cal­ly the fact that the employ­er is a major health insur­er for most Americans, [mean­ing] that the employ­er has a vest­ed inter­est in exclud­ing from con­sid­er­ing for employ­ment those indi­vid­u­als whom the employ­er deems as cost­ly for its health­care costs. So this can open up indi­vid­u­als to employ­ment dis­crim­i­na­tion when they’re found to have genet­ic disease.

You might be think­ing, Don’t they have laws for this? This is America. We have so many laws, we must be pro­tect­ed.” Well, they have laws, but the laws are not as pro­tec­tive as you might think. So I’ll start with the Health Insurance Portability and Accountability Act (HIPAA). The com­mon social per­cep­tion is that HIPAA pro­tects your med­ical infor­ma­tion. The com­mon per­cep­tion is that if you go to your doc­tor and you tell them any­thing about your health or they do tests on you, that infor­ma­tion is iron-clad protected. 

Not so fast. HIPAA is actu­al­ly not a pri­va­cy pro­tec­tion law. The main objec­tive of HIPAA was to allow you to take your infor­ma­tion from one doc­tor to the next, from one insur­er to the next. That’s real­ly the main objec­tive of HIPAA. As such, it does­n’t real­ly pro­tect your pri­va­cy in the way that you might imag­ine. For one, there’s only a very lim­it­ed cir­cle of cov­ered enti­ties. So real­ly only med­ical care providers are pro­tect­ed. What does this mean? Genetic test­ing com­pa­nies are not cov­ered by HIPAA; they’re not med­ical providers. Also, you have to actu­al­ly ask what the pro­vi­sions of HIPAA are. And the pro­vi­sions of HIPAA are thus: Your med­ical infor­ma­tion can be released for the pur­pos­es of both treat­ment and pay­ment. So as you see, your med­ical infor­ma­tion can and will leave your doc­tor’s office pri­mar­i­ly to go to health insur­ers. So the Anthem breach that just occurred…I guar­an­tee you there was also genet­ic infor­ma­tion that was derived from that by the data breach. So we have to keep that in mind, that while there are laws, they may not be as pro­tec­tive as we might think.

Also, you might say, Well there’s the Americans With Disabilities Act.” As Americans, unlike some oth­er coun­tries, we care about dis­abled peo­ple. We care about pro­tect­ing their right to work, to social­ize. Well. We do. But the prob­lem is genet­ic dis­ease which is not man­i­fest­ed is not con­sid­ered a dis­abil­i­ty. So for the Americans With Disabilities Act to actu­al­ly apply, you have to have a man­i­fest, phys­i­cal dis­ease that is dis­abling. So for exam­ple, if you have the sickle-cell trait but you don’t have the cri­sis that some­body suf­fer­ing from full-blown sickle-cell dis­ease has, you’re not cov­ered by the ADA, albeit that you may expe­ri­ence the same stig­ma and discrimination.

And final­ly we come to the Genetic Information Nondiscrimination Act. GINA to the res­cue. Now, what does GINA do? GINA is the newest among all these laws, and GINA was an attempt by the fed­er­al gov­ern­ment to pro­tect our genet­ic infor­ma­tion. So GINA is explic­it­ly both an anti-discrimination law and a pri­va­cy law. Title II of GINA says that your employ­er can­not use your genet­ic infor­ma­tion to dis­crim­i­nate against you for employ­ment, hir­ing, or pro­mo­tion pur­pos­es. However, GINA has many many loop­holes. For one, you actu­al­ly have to prove that your employ­er has dis­crim­i­nat­ed against you. GINA does not allow a dis­parate impact provision.

GINA also pro­tects you against hav­ing your health insur­ance denied on the basis of the fact that you have a genet­ic propen­si­ty for dis­ease. However, there’s also a loop­hole there. GINA only applied to health insur­ance. It does not apply to long-term care insur­ance, dis­abil­i­ty insur­ance, or life insur­ance. So if you take a genet­ic test and you find out you have Alzheimer’s and some­how this infor­ma­tion gets out to insur­ers, you might find your­self unable to pro­cure life insur­ance. And this would be per­fect­ly lawful.

Finally, how do we go about pro­tect­ing our genet­ic data? This is a hard ques­tion. It might not be for you com­put­er sci­en­tists. It might not be NP-Hard, but I’ll call it quan­ti­fied self hard. It is a dif­fi­cult ques­tion. Because while tech­nol­o­gy might seem like the obvi­ous approach, data breach­es are so ubiq­ui­tous that we real­ly have to think about real­ly how we go about secur­ing data such that we don’t lose the acces­si­bil­i­ty because genet­ic data is use­ful and some peo­ple might want to share their genet­ic data either for research pur­pos­es, for cre­ativ­i­ty pur­pos­es. But they might not want it to be used against them when they’re try­ing to apply for a job or get insurance.

So how do we pro­tect genet­ic data while also main­tain­ing acces­si­bil­i­ty for all the use­ful things it can do? Well, one of the solu­tions that have come out is a sys­tem of locks and keys, where­in genet­ic infor­ma­tion may be stored in a data­base. And in that data­base, peo­ple can have access at vary­ing lev­els of access based on a sys­tem of locks and keys. So for exam­ple, your genet­ic data can be in a data­base and then you can allow access for say, a research uni­ver­si­ty to study a par­tic­u­lar allele of your genome to cure Parkinson’s. But that uni­ver­si­ty would­n’t have access to your entire genome. They would just have access to that allele and per­haps the way infor­ma­tion from you in terms of things like your dai­ly life, the way you exer­cise, your eat­ing habits, etc.

So that’s one option in terms of giv­ing lim­it­ed and par­tic­u­lar and spe­cif­ic access. But it still entails hav­ing your genet­ic data in a data­base, and there are still issues there. So I can’t claim to have a solu­tion to this. I would love if some of you do.

I don’t nec­es­sar­i­ly advo­cate for more laws, because as we have seen, we do have laws. The prob­lem is that there are so many loop­holes with­in the laws that we already have. What I do advo­cate is per­haps strength­en­ing some of the laws that we do already have, in par­tic­u­lar GINA. If we can strength­en GINA with a dis­parate impact pro­vi­sion clause, I think this will help in terms of the issues of employ­ment dis­crim­i­na­tion that can arise from genet­ic data breaches.

I also think edu­ca­tion is key. Educating both the gen­er­al pub­lic and the gov­ern­ment about what gen­er­al infor­ma­tion real­ly is. Its util­i­ty, but also its lim­i­ta­tions. Recognizing that it’s not real­ly the panacea that it is pre­sent­ed as per­haps by com­pa­nies seek­ing to make a prof­it from it.

And final­ly, I want us to think about what are the seeds for future research. I par­tic­u­lar­ly am inter­est­ed in learn­ing about American beliefs and atti­tudes regard­ing genet­ic data. How has this changed over the years, and what accounts for these changes? For exam­ple, what is the extent of sci­en­tif­ic knowl­edge that your aver­age American holds regard­ing genet­ic data, and how does this influ­ence con­sumer behav­ior? What are issues regard­ing the use of genet­ic data in per­son­al­ized med­i­cine, both eth­i­cal and legal? What are the eth­i­cal issues regard­ing the sale of genet­ic data, espe­cial­ly con­sid­er­ing that your genet­ic data is not just you; it’s also all your future gen­er­a­tions. Do you real­ly have the author­i­ty to make this sale, or to even pub­li­cize your genet­ic data in this way? 

So with that, I want to thank you all for com­ing, and I look for­ward to your ques­tions and com­ments. Thank you very much.

Audience 1: Hi. Thanks, Ifeoma. That was super inter­est­ing. I have a ques­tion for you about kind of the inter­sec­tion of genet­ic data and behav­ioral con­trol. I’ve been notic­ing in the news late­ly sev­er­al cas­es in which DNA is used, not real­ly because we’re inter­est­ed per se in the genet­ic infor­ma­tion that it con­tains, but DNA test­ing gets used to iden­ti­fy some­body who’s accused of some sort of wrong­do­ing. So I just saw last week there’s a case in which a wait­er in Syracuse, New York spit in a drink, and the police test­ed his DNA— I mean it’s maybe overblow, but the police test­ed his DNA and charged him with dis­or­der­ly con­duct based on a match between the spit and him.

And then there’s a case I think pend­ing in the Ninth Circuit where these employ­ees were leav­ing piles of feces around. Do you know about this case?

Ifeoma Ajunwa: The devi­ous defe­ca­tor.” [crosstalk] It has become known as the devi­ous defe­ca­tor case.

Audience 1: The devi­ous defe­ca­tor case, yeah. Which I think the employ­ees weren’t the devi­ous defe­ca­tors, but I’m pret­ty sure (you know more about this than I do), but I’m pret­ty sure they’re suing under GINA.

Ajunwa: Yeah, they did sue under GINA.

danah boyd: Could you tell us more about the case?

Ajunwa: Yeah. So, it’s a real­ly fun­ny case. I think they were work­ing in some sort of ware­house, and some­body was leav­ing piles of feces around the ware­house. And the employ­ers decid­ed that the best way to dis­cov­er who was doing this was to test their employ­ees. But they did­n’t test all the employ­ees, which is also an inter­est­ing part of the case. They decid­ed that it must be a group of peo­ple, and only test­ed those peo­ple. They essen­tial­ly forced them to give up their genet­ic data.

It turns out it was­n’t actu­al­ly them. But that did­n’t mat­ter, because those peo­ple being sin­gled out to be test­ed, actu­al­ly that exposed them to ridicule by their cowork­ers, and it became a hos­tile work envi­ron­ment for them, essen­tial­ly. But they brought suit under GINA, which tech­ni­cal­ly isn’t what GINA was real­ly antic­i­pat­ing, I would think. But it worked, because that was a clear case of an employ­er request­ing genet­ic data from an employ­ee, in terms of, If you don’t give us your genet­ic data, you wil be fired.”

Going back to your ques­tion, yes, there has been a sig­nif­i­cant rise in genet­ic data being used for crime-solving pur­pos­es. A col­league of mine at my law school, actu­al­ly, has writ­ten an arti­cle called Predictive Policing,” and it’s basi­cal­ly the idea that polic­ing now is more about pre­dic­tion than actu­al entrap­ment or actu­al­ly catch­ing the per­son red-handed. It’s more like pre­dict­ing who did it. 

Because what we still need to under­stand it that DNA is still a pre­dic­tion. It’s just say­ing, I pre­dict, to this lev­el of prob­a­bil­i­ty, that this is the per­son that did it.” So there is a rise in that. And in fact, an inter­est­ing part of that rise is the use of DNA for phe­no­typ­ing. So there was a case where genet­ic data was left at a rape crime scene, and the data was used to decide what the rapist might look like in terms of skin col­or, height. And that led to sort of narrow[ing] the field of who the sus­pect could be. 

So there’s a rise in that, but there’s also obvi­ous­ly a rise in sci­en­tists call­ing foul because genet­ic data, par­tic­u­lar­ly for phe­no­typ­ing, is high­ly fraught. Because in terms of for exam­ple skin tone, there’s actu­al­ly hun­dreds of genes that actu­al­ly affect skin tone, and that inter­acts also with envi­ron­ment and diet, etc. So, you can’t real­ly be quite accu­rate with that. Hopefully that answers your question.

Audience 2: This is quite fas­ci­nat­ing. Are there any leg­is­la­tures, either at a state or in the US or out­side of the world, that have tak­en on these issues to be the exam­ple that US should be look­ing at?

Ajunwa: Well, I think the US should def­i­nite­ly look at the UK in terms of what is called gene theft. Currently (and I’m talk­ing fed­er­al­ly, because California for exam­ple does have laws against gene theft) the US has a posi­tion that it takes of aban­doned DNA.” So if you spit out your gum in pub­lic or you leave a cup that you drank from at a restau­rant, that is con­sid­ered aban­doned DNA such that for any­one to take that genet­ic mate­r­i­al is not gene theft.

The UK actu­al­ly has a blan­ket ban against gene theft. And can I tell you why they do so? I’ll tell you why. So, in the ear­ly 2000s, a jour­nal­ist came out with the sto­ry that Prince Harry, as he’s called, is not the son of Prince Charles. And there was a the­o­ry that he was actu­al­ly the son of a but­ler who had worked there with whom Princess Diana had had an affair. And there was con­coct­ed a plan to steal some of Prince Harry’s DNA in order to test it against the but­ler, who was coop­er­at­ing, to deter­mine if he was indeed the but­ler’s son. So that is actu­al­ly why the UK has a blan­ket ban against gene theft.

Audience 3: It’s sort of a dumb ques­tion, but is sperm con­sid­ered aban­doned DNA?

Ajunwa: Oh, I love that ques­tion. So uh, yeah. I love that ques­tion. I’ll give you sev­er­al cas­es. Oh, man. I love that ques­tion. [laugh­ter] Because there are so many cas­es, so many sto­ries, I’m just try­ing to see which one I should pick.

The first one I’ll start with is this. There was a case in which a man received oral plea­sure from a woman, and the woman col­lect­ed the sperm and sub­se­quent­ly used that to insem­i­nate her­self. And the woman then lat­er sued him for what? Child sup­port. And the man filed a counter-suit for fraud and theft, say­ing that she stole his sperm. Well, that case was adju­di­cat­ed as not theft. He was deemed to have made a gift of the sperm. So there’s that. That’s the sto­ry now.

Audience 3: But would that apply in the UK scenario?

Ajunwa: So, in the UK sce­nario that per­haps would have been deemed gene theft, because you could say he was­n’t giv­ing it to her for the pur­pos­es of lat­er insem­i­nat­ing her­self. But in the American sce­nario, it was a aban­doned DNA for her to do as she pleas­es. Or more impor­tant­ly, actu­al­ly, this case real­ly was a gift, for which as it is a gift you can do what­ev­er you want, right? 

Audience 4: I want­ed to ask about what you thought about dis­parate org—like, there’s pri­va­cy by design. Ann Cavoukian, she advo­cates okay, orga­ni­za­tions can col­lect as much data as they want as long as pri­va­cy is set as a default set­ting. Then there are tech com­pa­nies that are mak­ing sure that orga­ni­za­tions have a least priv­i­lege mod­el. So you have dif­fer­ent orga­ni­za­tions or just peo­ple doing dif­fer­ent things. I kind of feel like they need to talk to each oth­er more, and just there are bits and pieces of like, app devel­op­ers who are real­ly inter­est­ed in the tech­nol­o­gy and it’s not that they don’t care about pri­va­cy, it’s not some­thing that they’re think­ing about. How do we just address— I mean there are— I don’t want to sound so gloom and doom because there are so many things to be wor­ried about. But there are peo­ple and orga­ni­za­tions that are work­ing on that. I want­ed to hear your thoughts.

Ajunwa: I think that’s a real­ly inter­est­ing ques­tion because there’s the idea that we should all become Facebook with our genet­ic data. And some peo­ple have actu­al­ly put this in prac­tice. There is a man who has a Facebook for genet­ic data. So you can join with your genet­ic data, and it’s open to every­one in the net­work, and it’s for artis­tic, cre­ative expres­sion. But this idea of pri­va­cy by design, I don’t buy it. Just because there’s just too many instances of data breach­es. And even if it’s not from with­out, it can come from within.

Audience 4: But there are orga­ni­za­tions… I work at a data secu­ri­ty com­pa­ny, and they are try­ing to sell the least priv­i­lege mod­el and audit­ing every­body’s data access and that you should­n’t get access to stuff you don’t need. And that there are com­pa­nies that do that and that there are peo­ple work­ing on it, I just kind of feel like who should be the data own­er when it comes to our own per­son­al data.

Ajunwa: I think that that last ques­tion is still real­ly the most press­ing one. Who should own your data, right? So, 23andMe recent­ly bro­kered a deal where all the genet­ic data it col­lect­ed from its clients who had checked the box for research, it was able to sell for like $60 mil­lion. And the ques­tion is, should the clients then get some of that mon­ey back, right? Because when they clicked the box for research, were they giv­ing it up altru­is­ti­cal­ly like for pub­lic research? Or were they real­ly giv­ing it up for pri­vate research of the kind that 23andMe me is basi­cal­ly sell­ing it for?

So those are unan­swered ques­tions that remain. I can’t claim to have the answers, and I think it’s def­i­nite­ly things we should con­tin­ue to think about as we engage in genet­ic test­ing, for sure.

boyd: I’m going to take mod­er­a­tor’s priv­i­lege for a moment. One of the things I strug­gle with when­ev­er we talk about the pri­va­cy by design issue or about these ques­tions of indi­vid­ual con­trol is genet­ic mate­r­i­al is one of the most beau­ti­ful exam­ple of mate­r­i­al for which it’s not clear who the own­er is because it’s net­work data. The infor­ma­tion that is your” genet­ic mate­r­i­al to the­o­ret­i­cal­ly give out or to have exposed in dif­fer­ent ways fun­da­men­tal­ly affects your chil­dren and your not-yet-living grandchildren. 

Ajunwa: Exactly. And your liv­ing relatives.

boyd: And peo­ple you don’t know. So one of the things that’s been hap­pen­ing in the LAPD is that they’ve col­lect­ed a mas­sive data­base of genet­ic mate­r­i­al, and they’re going and look­ing for sus­pects’ relatives.

Ajunwa: Familial matches.

boyd: Right. But the thing is they keep show­ing up at the doorsteps of peo­ple that don’t know they have had siblings.

Ajunwa: Exactly, exactly.

boyd: And so one of the things that I think is anoth­er eth­i­cal con­sid­er­a­tion for all of this, and a tech­ni­cal, a legal, a social, is how do we account for the peo­ple who effec­tive­ly have no choice because they’re relat­ed to the peo­ple who the­o­ret­i­cal­ly have” choice? And how do we reframe or think about those net­works of respon­si­bil­i­ty with regard to the pri­va­cy, own­er­ship, and our respon­si­bil­i­ty outlet?

Ajunwa: It’s some­thing I’ve giv­en a lot of thought to, par­tic­u­lar­ly in the con­text of 23andMe, this wholesale…basically trans­fer of genet­ic infor­ma­tion to a cor­po­rate enti­ty. And I feel fair­ly cer­tain that many of the peo­ple who checked that box, they did­n’t do so know­ing­ly. They might have done so vol­un­tar­i­ly, but in con­tract lan­guage you have do some­thing both know­ing­ly and vol­un­tar­i­ly. And know­ing­ly” means you under­stand the full reper­cus­sions of when you sign that con­tract. And for the 23andMe me case, I sus­pect that sev­er­al of the peo­ple who signed that, they did­n’t under­stand that this means your genet­ic infor­ma­tion, your chil­dren’s genet­ic infor­ma­tion, your grand­chil­dren’s genet­ic infor­ma­tion, your moth­er’s genet­ic infor­ma­tion, can end up with­in a cor­po­rate enti­ty, or sev­er­al cor­po­rate enti­ties, for what­ev­er pur­pose. And that’s the thing. They don’t even have a say in the pur­pose of that genet­ic infor­ma­tion and how it’s used.

So I think it’s a real­ly weighty ques­tion. Because it is a net­work issue. So it’s not real­ly so much an indi­vid­ual pri­va­cy, per­son­al agency, issue the way it’s pre­sent­ed by the genet­ic test­ing com­pa­nies. Some of the ways I’ve thought about it is what I men­tioned ear­li­er about allow­ing access to genet­ic data but for lim­it­ed por­tions or for lim­it­ed uses. So you could, for exam­ple, be allowed to sell your genet­ic data to a cor­po­rate com­pa­ny, but only for your life­time, such that after your life­time they would have to destroy both the mat­ter that they have and the infor­ma­tion that they have, and then they would have to ask for per­mis­sion again from your descen­dants if they want­ed to con­tin­ue using that data. So that’s one way. But it’s a very weighty iss­sue, and one that needs seri­ous thought.

Audience 5: Fantastic talk.

Ajunwa: Thank you very much.

Audience 5: Just with your sort of seeds of future research, I want­ed to…maybe you can spec­u­late a lit­tle bit. You men­tioned that you want to start look­ing at the sort of trends or American atti­tudes toward genet­ic test­ing. What do you think you’re going to find, and does any­thing scare you, par­tic­u­lar­ly because you know so much about the his­to­ry of eugen­ics and such. Do you see a sort of resur­gence of that? And then maybe just a sec­ond one. You talked a lit­tle bit about com­par­a­tive atti­tudes, UK ver­sus United States, is there any coun­try do you think that is doing it real­ly well or real­ly far behind?

Ajunwa: I smile when you say spec­u­late” because as a social sci­en­tist I’m not allowed to spec­u­late. But as a sci­ence fic­tion affi­ciona­do, I will spec­u­late. I sus­pect that most Americans have very low sci­en­tif­ic knowl­edge of genet­ic data and what it real­ly means, and what it is to begin with, and what it can do, and what it can­not do. I sus­pect that most Americans, if they have any knowl­edge of genet­ic data, it’s not from school­ing, it’s from adver­tise­ments. It’s from the things that the cor­po­rate com­pa­nies are telling them genet­ic data can do, a lot of which are hyper­bole. You can have hyper­bole in adver­tis­ing. But a lot of Americans don’t nec­es­sar­i­ly have the sci­en­tif­ic tools to be able to sep­a­rate the hyper­bole from the sci­ence fact.

So I sus­pect that as a result of this, there will be more and more genet­ic test­ing. More peo­ple are going to say, Sign me up. I want to know my exact risk of Alzheimer’s.” Which, frankly, isn’t real­ly what you’re get­ting. You’re get­ting whether you have the gene that could cause Alzheimer’s. But you’re not real­ly going to get your exact risk. Because that depends on so many oth­er things. Your envi­ron­ment. The kind of job that you do. Your social life. Your diet. If you do brain exer­cis­es like Lumosity. I mean, it [depends] on so many dif­fer­ent fac­tors. But I sus­pect that the aver­age American is seduced by the promise of genet­ic test­ing, and as a result there will be more and more.

And also, there will be more and more of a eugen­ics bent to it. Right now it’s pre­sent­ed most­ly for find­ing dis­ease and pre­vent­ing dis­ease. That’s the lan­guage now. But I believe that lat­er on, the lan­guage is going to go more towards [what] you see in Gattaca, which is cre­at­ing the per­fect baby, cre­at­ing your ide­al baby, cre­at­ing the baby that reflects the best of you. So I think that’s the wave of the future.

Audience 6: My ques­tion actu­al­ly sort of ties into what you said before. I was won­der­ing how do you see insur­ing, or answer­ing the ques­tion who has the respon­si­bil­i­ty to insure that there is informed con­sent on the part of whomev­er is open­ing their genet­ic data. There’s for instance a case we had in the Netherlands, where I’m orig­i­nal­ly from, is that we tried to estab­lish this thing which is called the open patient dossier” where every­thing would be dig­i­tized. So if you were to have a heart attack in one city and the doc­tor did­n’t have your pri­or med­ical records, they could get them real­ly eas­i­ly. And there was a lot of push­back on this, specif­i­cal­ly for the exam­ples that you men­tioned: data breach­es, it’s too easy to pro­cure, etc.

So one of the things that was extreme­ly effec­tive in the cam­paign against this dossier is say­ing that well, we’re going to make the GPs par­tial­ly respon­si­ble for any­thing that goes wrong. And if they haven’t informed their patient well enough that it’s par­tial­ly on them. Which led most GPs to active­ly dis­cour­age their patients from sign­ing up—

Ajunwa: I can imagine.

Audience 6: —because if they make a mis­take that we can’t con­trol, not only are you in an unpleas­ant spot, but so are we. So I was kind of won­der­ing how do you see that debate tak­ing place here. Who should have that respon­si­bil­i­ty to ensure that there is real informed con­sent, because as you just said you can’t expect peo­ple to know not even just the genet­ics of this but the inter­sec­tion with all the dif­fer­ent things. It’s impossible.

Ajunwa: That’s a real­ly great ques­tion because the fun­ny thing— There was a sur­vey done in 2011, and it found that actu­al­ly 85% of doc­tors had nev­er heard of GINA. So if that’s who you’re rely­ing on to tell you about genet­ic data pro­tec­tions, you’re going to be at a loss. So I frankly don’t think the bur­den should be on the doc­tors. I think the bur­den is on the gov­ern­ment. Because the gov­ern­ment is hav­ing these laws like the new­born test­ing law, that’s requir­ing, coerc­ing peo­ple to relin­quish their genet­ic data. And as such, the gov­ern­ment then has a bur­den to pro­tect that data, and also to edu­cate peo­ple about how they can go about pro­tect­ing their data even beyond that. 

So I think the gov­ern­ment has a duty to edu­cate all health­care work­ers, not just doc­tors, nurs­es, every­one, about genet­ic data, and also the pro­tec­tions of the Genetic Information Nondiscrimination Act, and its lim­i­ta­tions. Because one thing that hap­pens is that Americans think, Oh, there’s a law on that. I’m pro­tect­ed.” And that’s not entire­ly the case. So it’s also about edu­cat­ing about here’s your rights under the law, but also here are the lim­i­ta­tions of the law, just so you can give informed consent. 

Now, some of the peo­ple who signed up for 23andMe, maybe they had vague­ly heard of GINA. And maybe they knew it pre­vent­ed your employ­er from get­ting your genet­ic infor­ma­tion. But did they know, for exam­ple, that if by sign­ing off at 23andMe and dis­cov­er­ing that they have Alzheimer’s they now may no longer be able to buy life insur­ance? Did they know that? And if they knew that, might that have changed the deci­sion? So that’s why I talk about know­ing con­sent. They vol­un­tar­i­ly gave con­sent, but was it real­ly knowing?

Audience 7: Thanks a lot for this dis­cus­sion. This is real­ly inter­est­ing. I had a spe­cif­ic ques­tion. You men­tioned that stolen genet­ic data is worth more than cred­it card data. Could you talk a lit­tle about the mar­ket for stolen genet­ic data?

Ajunwa: Usually the stolen genet­ic data is not the most tar­get­ed. They’re tar­get­ing med­ical records, which will con­tain some genet­ic data. So it’s actu­al­ly med­ical records in gen­er­al that are the most lucra­tive as opposed to cred­it cards, etc. And the rea­son why is this. People basi­cal­ly use it to imper­son­ate you and use your health insur­ance. So for exam­ple, get­ting access to your med­ical record, a per­son can sign up to have surgery that’s like $300,000 surgery, for exam­ple. Whereas with your cred­it card they might be able to get $2,000 before you can­cel it, or some­thing like that.

Audience 8: Very inter­est­ing talk. At the begin­ning you sort of men­tioned uni­ver­sal health insur­ance and its sort of notions of par­tic­i­pa­tion. So my ques­tion is, obvi­ous­ly the LAPD is col­lect­ing caches of data, or the FBI’s col­lect­ing caches of data in the course of their police work. Then the DNA data­bas­es they have reflect the police prac­tices they engage in, which many of us might agree are dis­crim­i­na­to­ry. If there were a dif­fer­ent kind of lev­el of par­tic­i­pa­tion in giv­ing up genet­ic infor­ma­tion, would that change the way you think about the prob­lems sur­round­ing genet­ic pri­va­cy, and—how would that change the kind of talk you might give about this?

Ajunwa: Okay. So I guess to under­stand your ques­tion, you’re say­ing if the genet­ic data­bas­es were vol­un­tary and maybe open…?

Audience 8: This might raise a whole bunch of oth­er prob­lem­at­ic issues, but imag­ine a world where every­body had to have their DNA on file. Everybody. 

Ajunwa:do imag­ine such a world.

boyd[?]: Iceland.

Audience 8: Right. Iceland, exact­ly. So they do this in…some pop­u­la­tions have done this for research pur­pos­es. How does that resolve some of these issues or not resolve them? Or maybe it rais­es new ques­tions that we might wor­ry about.

Ajunwa: I don’t nec­es­sar­i­ly think it resolve these issues. I think it makes it eas­i­er to dis­crim­i­nate. If every­body has genet­ic data on file, you now no longer have to ask them fam­i­ly med­ical his­to­ry, you just go look it up and say, Oh, I would hire that per­son but I see they have this slight­ly ele­vat­ed Alzheimer risk, so no.”

So in a way it actu­al­ly would open up a larg­er can of worms. For me I’m not so much con­cen­trat­ing on the crim­i­nal enforce­ment aspect as I am on the employ­ment and social aspects, where I feel that large-scale genet­ic col­lec­tion could actu­al­ly lead to what you see in Gattaca, because that is what Gattaca is, right? Everybody has their genet­ic infor­ma­tion on file. And with that, cer­tain peo­ple are clas­si­fied as valid and then the oth­ers are clas­si­fied as invalid, depend­ing on the num­ber of genet­ic muta­tions they have. So the more genet­ic muta­tions you have, the less like­ly you are to ascend the social lad­der, essen­tial­ly. So you’re rel­e­gat­ed to cer­tain jobs. So I don’t nec­es­sar­i­ly think it’ll solve the prob­lem. I actu­al­ly think it might exac­er­bate it.

boyd: Fantastic. I know we’re out of time, but I want to say thank you so much for your invig­o­rat­ing talk. Thank you.

Ajunwa: Thank you very much. Thank you all for coming.