The Blurred Lines of Genetic Data: Practicality, Pleasure and Policing
Posted by Jessica Cussins on May 7th, 2015
A new rumor is spreading that Apple may be leveraging its ubiquity to encourage iPhone owners to participate in DNA testing, perhaps to bulk up the medical data-collecting capabilities of its ResearchKit.
According to Antonio Regalado at MIT Technology Review, Apple will work with academic partners to collect and test the DNA, and may provide add-ons such as the ability to widely share genetic information directly from an iPhone with a single swipe.
This wouldn’t be the first time genetic researchers have tapped into social networks to recruit participants. University of Michigan’s Genes for Good project is using a Facebook app to encourage 20,000 volunteers to share information about their genes, health, habits, and moods to help the researchers uncover new connections between genetic variants, health, and disease.
Others are involved, too. There’s Google (with its genomic data cloud storage), 23andMe (with its $99 direct-to-consumer / direct-to-drug companies spit kit), and the United States Government (with its precision medicine initiative).
On one hand, it is hardly shocking that Apple would join the trend towards so-called open-sourcing DNA, or want to add genetic data-collection to its increasing selection of quasi-medicalized self-quantifying tools.
On the other hand, it could be smarter for Apple to sit this one out. 23andMe has been struggling to maintain relevancy since the FDA ordered the Silicon Valley-based company to stop providing genetic health information after repeated failures to prove its analytical or clinical validity. Moreover, patent infringement lawsuits are ongoing at various companies. And shocking stories about the endless possibilities for DNA hacking (not to mention the more mundane concerns of workplace discrimination and increasing insurance premiums) are becoming more commonplace.
While Apple’s ResearchKit has been growing in popularity, it has also encountered serious problems – from user bias to inaccurate reporting – all of which can lead to misleading data and ultimately to wasted research funds and increased medical costs. Adding genetic information to the mix may only compound these problems. Our genomes contain so much data that distinguishing between signal and noise is a huge problem. And then there is the point made succinctly in a recent article about “Big Data” in The New York Times Sunday Review: “The things we can measure are never exactly what we care about.”
It is also unclear whether people will rush to share this most personal kind of data. It’s one thing to take action on social networks following DNA testing – say, to join a Facebook group to discuss a shared gene variant – but enabling widespread sharing of the genetic data itself may ultimately benefit biotech companies at your or your family’s expense.
A recent news story published in The New Orleans Advocate, and later covered by the Electronic Frontier Foundation, highlights the potential for genetic data shared for a particular purpose with a private company to later be used for familial genetic surveillance in the name of law enforcement.
Ancestry.com, which owns a trove of genetic data called the Sorenson Database, allowed Idaho police investigators to search through 100,000 DNA samples in their attempt to shed new light on a 20-year-old murder case.
The investigators found a DNA sample from a man that matched on 34 out of 35 alleles of DNA from the crime scene, indicating a close familial relationship. They then used the database’s genealogical information to track down all of the man’s family members. Subsequent Google and Facebook searches led them directly to his son, who turned out to be a filmmaker known for his depiction of gruesome murder scenes.
As it turned out, he wasn’t the murderer, and was able to establish that. But he got lucky. Given the proliferating use of trace DNA in forensics, the acceptable margin of error for genetic “matches” is a problem. If the original crime scene had only provided trace DNA, the evidence stacked against this guy may very well have ended in a conviction.
If widespread sharing of our genetic data is soon enabled by Apple, it may be smart to swipe left.
Previously on Biopolitical Times:
Stopping or Selling Human Germline Modification?
Posted by Pete Shanks on May 7th, 2015
One failed experiment can crystallize a discussion. On April 18, a paper describing an attempt to use CRISPR gene-editing technology to modify a human embryo was published in Protein & Cell, an obscure Chinese journal. On April 22, Nature, which had rejected the paper on ethical grounds, published a news article about the publication, which was the first many people had heard of it. And then pretty much everyone in the biotech/bioethics world had something to say.
The pump had been primed by recent commentaries in Nature and Science that called, with significantly different emphasis, for a moratorium on human germline interventions. An earlier widely circulated article in MIT Technology Review had suggested such experiments were soon to be published.
Creating genetically modified humans has long been seen as dangerously unacceptable, and is prohibited by law in dozens of countries. Until the recent advent of new gene-editing tools, scientists had also refrained from human germline experiments.
The Center for Genetics and Society’s reasons for supporting these prohibitions are described in these press releases (1, 2) and this backgrounder. In short, CGS supports the prospect of somatic gene therapy, which if successful would help consenting patients by treating disease but would not affect their descendants; and opposes inheritable genetic modification (or germline intervention) for multiple reasons, including dire safety risks, ethical considerations and social consequences.
Most responses to the prospects of GM humans can be roughly grouped into a few categories, each of which covers a spectrum of views: opposition, either permanent or conditional; calls for dialog, with varying implications; and support, even enthusiasm. Views also vary on whether, when and under what conditions it would be appropriate or acceptable to modify the genes of human embryos for research purposes.
The lines are frequently blurry, and not everyone is convinced of the good faith of those with whom they disagree. Moreover, the discussion has so far largely been confined to professionals working in the field — researchers and bioethicists. The controversy has now reached the national and international media, and anecdotally there is growing public awareness. But we’re nowhere near the broad participation that the high stakes of this conversation demand.
What follows is by no means complete, but an attempt to lay out the current parameters of the evolving discussion. Links are included below, including to some of the most useful summaries, and readers are encouraged to follow them for further clarification.
Don’t Do It
Edward Lanphier of Sangamo BioSciences and the Alliance for Regenerative Medicine, with four co-authors, laid down an early marker on March 12, with an op-ed in Nature succinctly titled:
Don’t edit the human germ line
They opposed not only creating and bringing to term genetically modified humans but also "research involving genetic modification of human germ cells.” That is an important distinction, and controversial even among those who firmly oppose using heritable genetic modification for reproductive purposes. Those who support germline modification argue for continuing research to establish safety (if possible, which is by no means certain). Those who oppose such applications are concerned that such research "could be exploited for non-therapeutic modifications,” as Lanphier et al. wrote.
They called for a moratorium — the term “ban” is evidently considered impolitic, although many countries and international organizations have in fact banned germline intervention. Many prominent figures agreed with all or part of their approach. Broad Institute Director Eric Lander asserted that there is "no therapeutic application he could think of that would justify gene editing in human germline cells” and said:
"The call for a moratorium isn't based on a probability calculation that someone will do it. We need to truly ban this from a moral standpoint. We should forbid this for at least a while — not by law, but by agreement."
Francis Collins formally reiterated NIH policy against funding "any use of gene-editing technologies in human embryos." The Society for Developmental Biology agreed [pdf]. The International Society for Stem Cell Research called for a moratorium on clinical applications, but not research.
In addition to CGS, several activist organizations including Human Genetics Alert, the Council for Responsible Genetics and the International Center for Technology Assessment have long opposed human germline interventions. So have many religious commentators, sometimes with secular arguments such as control (referencing C. S. Lewis and The Abolition of Man). It is heartening to see that many scientists, faced with a developing technology, are willing to take a critical stance.
Calls for Dialog
Everyone says they support wide-ranging discussion of the prospect of genetically modified humans. Just how wide-ranging is a point of contention, with some scientists apparently insisting on technical expertise as a precondition for decision making, or preferring that scientists keep the conversation close and proceed with voluntary agreements or self-regulation, or assuming that “public participation” means that they will educate the public to let them do what they want. Bioethicists and other experts naturally disagree, as do public interest advocates and everyone committed to democratic participation.
A week after the Nature article by Lanphier et al., Science published one by Nobel laureate David Baltimore and 17 others titled:
A prudent path forward for genomic engineering and germline gene modification
This may not be quite the cynical, enabling position it seems to be at first: it likely represents a compromise among widely varying views. The Science commentary arose from a meeting organized by CRISPR expert Jennifer Doudna, who has previously expressed ethical doubts about the practice and its possible “dark side." But the co-authors also include Harvard expert George Church, who has frequently been enthusiastic about human germline interventions.
Another co-author was Stanford law professor Hank Greely, who thinks that the fuss has been overstated, because the technology will not be practical in humans "for a long time, if ever.” Nobel laureate Craig Mello seems to agree, saying "It’s not something that’s going to be easy, cost-effective or safe, given existing technology,” (Mello’s position has, however, also been characterized as, if it’s safe, go for it.) British expert Robin Lovell Badge, otherwise a strong supporter of refining techniques to create genetically modified humans, agrees that "a lot of the fuss about the possibility of germline gene editing is misplaced,” not least because PGD can be used to avoid many heritable conditions.
Transhumanists, including James Hughes and Zoltan Istvan, and libertarians such as Ron Bailey who have long argued in support of human germline interventions have predictably chimed in to affirm their positions. So have some philosophers associated with this view, including Julian Savulescu et al. in Nature [behind paywall and on a blog]. One of the co-authors, Chris Gyngell, wrote an op-ed in The Guardian titled “The case for genetically engineered babies,” in which he fails to mention that what he proposes is explicitly illegal in the UK, where he lives. He bases his argument on the prevention of inherited diseases, without acknowledging that this can be accomplished through already-existing embryo screening techniques. He also includes this remarkable sentence:
Genes fashionable in one generation may prove to be harmful in the next.
Many mostly rather passive supporters were quoted in this selection by the Science Media Centre, including Dusko Ilic, Ewan Birney, Darren Griffin (who mentioned a possible “moral imperative to make sure that we do it”) and Anna Smajdor, who cited the recent UK decision to allow nuclear transfer to avoid mitochondrial disease.
More worrying is the appearance of at least notional support from some self-described environmentalists, such as Amelia Urry in Grist, though that piece seems somewhat muddled on the basic distinction between somatic gene editing and germline interventions.
Press coverage has been extensive. The following are some of the articles that include comments from scientists and others:
- Chinese scientists genetically modify human embryos, David Cyranoski and Sara Reardon, Nature, April 22, 2015
- Chinese Scientists Edit Genes of Human Embryos, Raising Concerns, Gina Kolata, The New York Times, April 23, 2015
- Critics Lash Out At Chinese Scientists Who Edited DNA In Human Embryos, Rob Stein, NPR, April 23, 2015
- Chinese scientists genetically modify human embryos for the first time, Stephen Chen, South China Morning Post, April 23, 2015
- Chinese researchers alter embryo DNA: Do results cross ethical tripwires?, Pete Spotts, The Christian Science Monitor, April 24, 2015
- Embryo editing sparks epic debate, David Cyranoski and Sara Reardon, Nature, April 29, 2015
- CRISPR germline editing reverberates through biotech community, Bioentrepreneur, Nature blogs, April 30, 2015
- DNA editing takes a serious step forward — for better or worse, Eryn Brown, Los Angeles Times, May 3, 2015
- Editing human germline cells sparks ethics debate, Tina Hesman Saey, Science News, May 6, 2015
Previously on Biopolitical Times:
DIY Bio-Engineering: Disrupting Democracy
Posted by Colleen Cordes on May 1st, 2015
The Do-It-Yourself synthetic biology movement (or, DIY synbio) is mixed up, in a naive and dangerous way. What it's advocating is not "citizen science," let alone "democratizing science." It's not about science or democracy.
The folks promoting DIY synbio — Counter Culture Labs, in Berkeley, for instance — are actually discouraging people from practicing science. Science is a quest to understand the nature of reality, with an appreciation with each new insight of how much more remains to be comprehended. It's a serious quest, because the stakes of misunderstanding reality are so high. But the goal in synbio is not about understanding reality, or one's own ignorance. It's about trying to fundamentally change reality, based on one's own narrow perspective and fantasies.
Rejecting reality is really at the root of synbio. Some synbio engineers go so far as to strive to rid our species of aging and death, which are essential aspects of being alive. Yes, there's an eagerness for more knowledge — but only the tidbits about the extremely narrow slice of reality that synbio engineers think they need to know to force an organism to do whatever they desire to force it to do. The word "hacking" captures the inherent violence of this mindset.
That's not good science; it's bad engineering. And the same kind of thinking about the natural world that got us into the current ecological mess. So Counter Culture and their ilk promote "citizen genetic engineers," or "citizen bioengineers." But not "citizen scientists."
How democratic is the idea of "citizen bioengineers"? Not at all. It's a kind of anarchy. (No wonder the movement has attracted anarchists.) But this is a weird anarchy that insists upon conformity. It confers power only on those who are willing to conform to the vision pushed by very powerful commercial forces that the natural world, including human beings, must be and will be redesigned.
In fact, the DIY synbio movement unwittingly supports the profoundly anti-democratic nature of the entire synbio enterprise. The DIY branch, by intent or not, is a valuable ally for companies like Dow AgroSciences, whose bioengineers have helped spread the idea that synbio revolutionizes who can "do" biology. (See here and here.)
The DIY buzz that synbio is exciting, fun, and empowers each person to tinker with life suggests that everyone has the right to play the game pretty much the way they want. That serves powerful corporate and academic interests because it means no one has much right to participate in decisions about common, enforceable rules. Won't that make just about anything that the synbio industry and patent-heavy universities want to commercialize acceptable too? That neatly negates the whole possibility of democratically decided limits or prohibitions on designing or using these unprecedented technologies. In short, it nixes democracy.
And, no, voluntary codes of ethics designed by the hackers themselves won't cut it. Participatory democracy is government of, by, and for the people. It's about all citizens' shared power to govern synbio, whether we fantasize about engineering life or not.
Ethically speaking, the redesigns of the natural world — including the human body — visualized by many synthetic bioengineers are so dramatic and potentially irreversible that a good case can be made that they should require some kind of global consensus. And ethically speaking, a good case could also be made that it would need to be a consensus not just of us humans who happen to be alive right now, but a consensus that included other species and future generations.
Is that an impossibly high bar? Yes. But the living world is not the property of a relatively small elite of academic, corporate and DIY bioengineers, venture capitalists, and self-interested stockholders. The synbio enterprise, from this perspective, is inherently anti-democratic and elitist.
Counter Culture and others promoting the "democratizing science" myth of DIY bioengineering don't get that. Most of humanity is not wishing they could create a new life form. Most people don't even have the issue on their radar.
And many of us who are aware of what's going on in synbio are appalled because we love the natural world as it is. We not only don't want to re-design it ourselves, we absolutely resist the proposition that a small elite has the right to rush forward and try to redesign it for the rest of us.
So racing ahead despite the fact that billions of your fellow global citizens are either unaware of your agenda or opposed to it is the opposite of promoting democracy. It serves only the powerful players — the for-profits, universities, and government agencies — that have the most invested in winning that race and the least enthusiasm for letting genuine democracy interfere.
Colleen Cordes, writing here in her personal capacity, is director of outreach and development for The Nature Institute. She is a former co-chair of the Loka Institute, which advocates for greater public participation in decisions about the design and use of technologies, anad former executive director of Psychologists for Social Responsibility. She reported on issues of science and technology policy for more than a decade for The Chronicle of Higher Education.
Previously on Biopolitical Times:
Why Facebook’s Egg Donor Ads Freak Me Out (And Should Freak You Out Too)
Posted by Sayantani DasGupta, Biopolitical Times guest contributor on April 27th, 2015
[This blog is cross-posted at Adios Barbie]
Three white chicken eggs with smiley faces drawn on them peer out at me from a Facebook ad. (Notably, a Facebook ad forwarded to a listserv by a young woman in college, not one that popped up in my own middle-aged Facebook feed.) One of the smiling eggs exclaims, “Donate Me and Help Make a Family!”
Fifteen or twenty years ago, this ad would have made little sense. Donate a chicken egg to create a family? But in today’s brave new reproductive world, where in-vitro fertilization, commercial surrogacy, and sperm and egg donation are no longer obscure medical secrets but commonplace knowledge, it’s fairly obvious to most people viewing this ad that it is targeted at young women, encouraging them to “donate” their ova.
I put the word “donate” in quotes above because unlike kidneys, ova are not usually “donated” in this country. While it is illegal to offer economic compensation to people for other sorts of organ donation (due, rightfully, to the bioethical concern that this will create a market for human organs, and impoverished people will be unequally coerced into selling their body parts), getting paid for giving up your ova (and sperm) is perfectly legal in the U.S.
But why is it particularly worrisome that ads for ova donation have made it onto personalized Facebook feeds?
The Commodification of Women’s Bodies: Economic Coercion
Back when the only egg donation ads I saw were in the hallways of the Ivy League medical school in which I teach, I was equally concerned. Whether on digital or brick-and-mortar walls, ova donation ads make clear that women’s bodies and body parts are commodities to be bought and sold. Which of course begs the deeply troubling question — are women’s bodies things to be owned and traded on the open market?
Whatever a young woman’s opinion on bodily “ownership,” the economic inducement is so significant ($5,000–10,000, with higher fees going to donors with Ivy League educations, high IQs and preferred ethnic and racial features) that a young woman does not need to be in dire financial straits to feel tempted by the quick and supposedly easy money of egg donation. From medical bills to house payments to college and graduate school debts, young women use egg donation payments in myriad ways. And besides, you get to help someone, right?
Yet, the altruistic rhetoric of “helping create families” and “women helping women” only serves to distract us from the fact that ova donation is ultimately a booming business, and as such, it is about the money, honey. (Without the economic compensation, would many young women do it?) As of 2007, the assisted reproductive technology industry in the U.S. was a $6.5 billion for-profit industry, and growing. Fertility clinics and other middlemen are clearly invested in keeping this lucrative business going.
Lack of Transparency About Health Risks, and the Lack of Research
Unlike sperm donation, which has few to no health risks and indeed usually involves free porn, ova donation is a risky business. As a complex medical procedure involving hormones, injections, blood draws, anesthesia, and a surgical procedure to extract a body part, many things can go wrong with ova donation. The risks of egg donation include bleeding, pain, stroke, kidney disease, ovarian cysts, torsion, infertility, and even death. The Center for Bioethics and Culture argues,
OHSS (ovarian hyperstimulation syndrome) is caused by the process of superovulation and is well-documented in the medical literature as a risk associated with women who take fertility drugs to stimulate ovulation. It is also documented in the literature that young women are more at risk for OHSS.
These risks are not, however, freely shared with the young women donating their ova. Indeed, there is very little research being conducted, little data being gathered about the long-term health effects of ova donation — if donating ova earlier in life affects later-in-life fertility, cancer rates, or other diseases. And that, as the award-winning documentary film Eggsploitation suggests, is the fertility industry’s “dirty little secret.”
Racist Elitism: A New Eugenics
“Make another woman’s dreams come true!” cried the advertisement I used to see (and systematically take down) on the walls of the medical school where I teach. The ad infuriated me not only due to how it signaled a commodification of women’s bodies, but also in its obviously racist, and elitist, implications. “Ivy League Donors Wanted,” read the subheading. The photograph in the advertisement was of a young, smiling blonde woman, clearly indicating that this was the kind of Ivy League–educated woman who was desired. In the words of an article from The Journal of Health Care Law,
Wealthy couples, who utilize egg brokers or high-profile advertisements, do not seek general traits. These couples are seeking a “perfect gene pool” for their commodity — notice the highly sought-after donor is a woman who has blonde hair, blue eyes, received a 1400 on her SAT, attends an Ivy League school, and who preferably has some additional talents such as music, sports, or theatre.
These perspectives make women with such highly desirable traits prized reproductive commodities, and clearly sends the broader social message to all women that we are only valued for our abilities to produce genetically favorable offspring. Interestingly, a more recent study indicates that this racially motivated preference may be changing, as couples using egg donors choose “brains” over perceived “beauty.” (Although I would argue it’s just a shift in what is seen as genetically “valuable.”) In the words of Robin Marantz Henig, writing at NPR’s health blog,
But as the practice [of using donated eggs] becomes more widespread, a recent study finds, women are no longer trying to hide the fact that their babies come from donor eggs by working hard to find donors who are physically or genetically similar to them. Instead, the researchers say, recipients tend to look for other qualities, such as intelligence and athletic ability, that they hope to pass on to their children.
Whether it’s shopping for blonde hair or brainiacs, the eugenic implications are still the same. These sorts of genetic preferences in choosing an egg donor are still part and parcel of the social pressure on people to produce “perfect” children genetically related to at least one parent. They are still part and parcel of a mentality which, for lack of a better word, is ultimately about “designer babies.”
The Surveillance Society: Facebook Algorithms See All
With all of these disturbing aspects of the ova donation industry in mind, the commodification of bodies, the eugenic tendencies, and the ill-explained or known health risks, the additional digital twist of the personalized Facebook ova ad is particularly disturbing. Like Big Brother or some dystopian fascist corporation from Blade Runner or Minority Report, Facebook algorithms see all — our age, gender, height, weight, ethnicity, and education — and make conclusions about the genetic desirability of our reproductive parts, our possible willingness or need to donate ova for compensation. As early as 2009, Jennifer Lahl, the president of the Center for Bioethics and Culture, was demanding that Facebook take down egg donor ads targeting young women. One blogger posted a critique of multiple aspects of the practice in 2011 called “Facebook Thinks I’m an Asian Egg Donor.”
Where to begin?? Let’s start with the copy:
“Asian Egg Donors Earn $8K”
I get that they’re trying to customize this ad somewhat to my ethnicity by putting “Asian” on there. But does this mean if I were of another race, that I would earn more or less? Does my ethnicity equate my monetary potential in this market of egg donors?
I’m assuming this company went about facebook [sic] targeting the same way a lot of us do — select from Facebook’s menu of options and then add some keywords. They probably entered some common Chinese/Japanese/whatever they think is “Asian names — and I guess my last name (which is a pretty popular Asian name) fit into the category they are targeting. However, I wonder if they considered the fact that I may be adopted, or that I may be half-Asian, or I married an Asian guy. But I guess this sort of crass targeting fits into their overall way of thinking …
Similarly, another young woman posts the following about Facebook’s targeted ova donor ads:
Amongst the weight loss, cellulite reduction, online dating, and hair removal advertisements featured in the margins of my Facebook account, there have been an increasing amount of advertisements requesting college-age egg donors. With an alluring compensation of $100,000, I couldn’t help but click on the ad. The ad took me directly to a site called “Elite Donors: Creating Happy Families,” a site that recruits egg donors for infertile couples for the purpose of In Vitro Fertilization into the female client or surrogate. The site was plastered with photos of smiling babies and mothers, all with blonde hair, blue eyes, and perfect white teeth.
Intrigued to determine whether or not I have “elite” status, I searched their criteria for an eligible donor. The standards were as follows:
- Height 5’9″ or taller: You may apply if you are shorter, but it helps to have family members who are 5’9″ or taller.
- Caucasian: Check back in the future if you are a different heritage.
- Very Attractive: Modeling experience is a plus, but not required.
- Must be 18–28 years old.
- Proven Intelligence: We are looking for a donor who has graduated from a top 100 four-year college.
- Athletic Ability: Looking for a donor who has a history of participating in athletics or dance. Playing or performing at a college or professional level is ideal.
- No Genetic Medical Issues: This criterion is absolute.
The writer goes on to wonder if with her history of braces, her less-than-4.0 grade point average, and her non-modeling / normal woman weight, her ability to earn might go down and down. She concludes, “I guess if these are the standards by which one measures women, we’re not worth a whole lot, are we? Be more than what someone is willing to pay for you: Protest egg donation advertisements on Facebook today.”
In the end, I agree with the writer above. It’s creepy enough that Facebook knows whether I am in the market for a new dentist or dining room table. It freaks me out infuriates me that the digital giant is also now in the business of luring young women into selling their body parts for profit. But as I wrote about recently in regard to Facebook offering to pay for female employees who want to freeze their ova, the corporate giant clearly thinks that women’s reproductive parts and wholes are part and parcel of their global purview. Facebook’s ova donation ads don’t signal a brave new world, just old exploitations packaged in slick, sophisticated, and frighteningly targeted digital packaging.
Sayantani DasGupta is an assistant clinical professor of pediatrics and a core faculty member of the Program in Narrative Medicine at Columbia University. She also teaches in the graduate program in Health Advocacy at Sarah Lawrence College, and is a prose faculty member in the summer writing conference Writing the Medical Experience at Sarah Lawrence College. Dr. DasGupta is co-author of The Demon Slayers and Other Stories: Bengali Folktales (1995), author of Her Own Medicine: A Woman's Journey from Student to Doctor (1999), and co-editor of Stories of Illness and Healing: Women Write Their Bodies (2007).