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.

https://​www​.youtube​.com/​w​a​t​c​h​?​v​=​l​P​1​c​C​j​B​k​WZU

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: I 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.


Help Support Open Transcripts

If you found this useful or interesting, please consider supporting the project monthly at Patreon or once via Square Cash, or even just sharing the link. Thanks.