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  • Common Reader

    One small correction to this interesting essay: Daedalus is not a story, and it is not science fiction (or even “sci fi”). It’s a short book, or long essay, of scientific speculation that is still worth reading even 90 years or so after it was published. It is not “sunny” either: it’s a series of thoughtful and thought-provoking observations by a leading biologist who also happened to be a Marxist who, unlike the mystical and romanticising Huxley, knew how to write clearly
    . TL;DR: Justice for J.B.S. Haldane!

  • Dredd

    Very informative. Thank you.

    Some recent data indicates that our genomes are not unique (On The Origin of Genieology).

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Who hasn’t thought of genetic engineering as a “brave new world”? In Aldous Huxley’s eponymous 1932 novel, the One World State uses what we would now call in-vitro fertilization to create a genetically tailored, highly stratified society, kept complacent and happy with a drug called “soma.” The book was a bitter, brilliant response to J. B. S. Haldane’s sunny sci-fi story Daedalus, which first proposed the concept of IVF, or “ectogenesis.” Haldane was a techno-optimist: he believed that science could address or even repair mankind’s defects and weaknesses. Techno-pessimists such as Huxley, in contrast, take a darker view. For Huxley, the cultural authority of science inherently veered toward totalitarianism. Whether one is an optimist or pessimist, genetics is certainly changing our social roles, our social mobility, our social relations. Modern biology challenges conventional understandings of autonomy, surveillance and privacy. In short, advances in DNA science have surely placed us in some kind of brave new world—the question is, which kind.

WELCOME TO YOU

For a hundred dollars you can spit in a test tube, mail it off, and in a few weeks receive a detailed profile of your genes. “Welcome to you,” proclaims the cheerful kit that arrives from 23andMe, a direct-to-consumer, or DTC, genomics company. The message on that box is unambiguous: your genes are your essential, true identity. If we accept that message, we permit a private company to deliver to us our selves. If we reject it, we alienate ourselves from a thriving genetic community that sees itself as the bright future: open, progressive, and winning the timeless war against illness, senescence and death. At first blush, the choice seems easy.

The notion that your genes are your essential self—genetic essentialism—is fairly recent. Although the idea that heredity contributes to our health and identity is ancient, the idea that for practical purposes it is all that matters dates only to the nineteenth century. The English statistician Francis Galton conceived of heredity as a subterranean stream of “germ plasm,” flowing down the generations, isolated and insulated from the environment’s buffeting of any individual body. In determining who we are, Galton wrote, nature was “far more important than nurture.”

That stream was increasingly polluted, Galton was convinced. Vexed by the fact that people paid more attention to breeding their cattle than themselves, in 1883 he proposed a scheme of hereditary improvement he called “eugenics,” meaning “well-born.” The stream of British germ plasm could be socially filtered, and even enriched, by persuading the “fittest” people (borrowing loosely from Darwin) to have more children; the “unfit,” fewer. A techno-optimist to the core, Galton believed that, given proper instruction, people would see the logic of this scheme and participate voluntarily. In this he was naïve—at least about the abstinence part. After 1900, eugenics became coercive, while the state’s trust in the population shriveled. Marriage restriction and sexual sterilization laws were keystones of state-run programs of hereditary improvement. When most people think of eugenics, they think of a scientifically rationalized program of racial purification, which it was. But eugenics always had a medical and public health dimension as well. The vast majority of forced sterilizations were carried out in a medical milieu—particularly in psychiatric hospitals. Eugenic sterilization was considered preventive medicine for incurable mental or other hereditary disease. This is the origin of medical genetics. Mainstream genetic medicine today isn’t eugenics, but it has a deep taproot in ideas of hereditary social control.

These medical roots of genetic selfhood shaped emerging notions of genetic privacy. When genetic tests for disease were introduced, beginning with phenylketonuria in 1960, their results were subject to the standards of medical confidentiality—and the shadow of eugenics hung over them. In the 1990s, for example, scandal erupted at the Lawrence Berkeley Laboratory in California, when it came out that prospective employees had been compelled to undergo tests for pregnancy, syphilis and sickle cell disease. (Sickle cell, a simple recessive genetic disease, was considered a “black” disease because of its prevalence in African Americans.) Positive tests for any of these conditions were grounds for rejection. The Ninth Circuit Court surely had no idea of the debt it owed to Galton when it ruled this policy unconstitutional, writing in the decision, “One can think of few subject areas more personal and more likely to implicate privacy interests than that of one’s health or genetic make-up.”

Like all medical records, genetic data has implications for employment and insurance. Yet genetics has always been treated as a special case. In 2008, after a dozen years of negotiation and revision, the Genetic Information Nondiscrimination Act (GINA) was signed into law. Past abuses, the authors reasoned, made genetic information particularly important to safeguard. As the law’s name implies, its principal concern is discrimination on the basis of the ultimate pre-existing condition: your genes. Genetic test results thus joined other supposedly innate qualities, such as race, creed and gender, as characteristics for which it was illegal to deny someone a job, home or insurance policy.

Yet science always seems to race ahead of culture and bioethics, and therein lies a tension. Ironically, the more central genes become to science, the less central they become to biology. By that I mean that the more we study DNA, the more Galton’s notion of an isolated, protected germ line seems to melt away. The genome proves to be highly dynamic, with gene activity and even gene structure changing over the course of a life. Further, our genome isn’t ours alone: studies of the “microbiome” show that the genes one inherits are supplemented by those of the dozens, perhaps hundreds, of different kinds of microbes that live in our bodies. To cap it all, “genetic” no longer necessarily means “innate.” Techniques such as gene therapy and genome editing enable us to imagine a future, perhaps not far off, in which we will modify our own genomes or those of our children. The more we learn, the more difficult it becomes to formulate a strict genetic definition of “me.”

The evidence from the labs, then, strongly refutes genetic essentialism. Yet the idea not only persists—it has been strengthening. Recent news stories have covered the “gay gene,” the “violent drunk” gene, the “couch potato” gene and even the “slut” gene. Not coincidentally, such headline-grabbing genes just happen to reflect contemporary social preoccupations. Dig deeper and it often turns out that the putative gene explains little: it may contribute only 2 or 3 percent of the risk for the condition; frequently it isn’t a gene at all but merely a “marker,” perhaps a single DNA building block, that correlates with the “trait.”

The ever-widening gap between science’s understanding of genetics and the public’s understanding of science greatly complicates the idea of genetic privacy. For what exactly do I protect when I protect my genetic information? Is it “really” me—or only an idea of me? If an idea, whose idea? Almost paradoxically, the better we understand genomes, the more genetic identity becomes a social construct rather than a scientific fact. In contrast to humanistic methods of self-understanding, knowing our genetic identity requires interpreters. That 23andMe profile, after all, is not raw data but an analysis prepared by a company. The more biologists learn about genes, then, the more important it becomes to question who is constructing genetic identity. Cui bono here, anyway?

SEQUENCE JUST WANTS TO BE FREE

The explosive advances in genome sequencing in recent years have provoked a remarkable rethinking of medical privacy. A twist of the helix came just a year after the completion of the Human Genome Project in 2004. The genome project gave us a reference sequence for human heredity, but of course what’s medically interesting is the ways in which we are different, not the same. In 2005, the Harvard professor George Church launched the Personal Genome Project (PGP). He and nine other scientists, tech leaders, and a journalist agreed to sequence their genomes and put all the data on the web. The “PGP-10” branded themselves as brave pioneers in a new age of shared information. In the next three years, Craig Venter, the genome scientist, and James Watson, co-discoverer of the double helix, sequenced their own genomes and published them online. These celebrity sequences gave a burgeoning open-genomes movement valuable publicity.

Church and his followers promote genetic openness with evangelistic fervor. The PGP-10 added more members, and another scientific consortium established the 1000 Genomes Project. At the time of writing, a thousand had grown to 2,535. The group is still not much more than a sect, but because the members are highly educated and scientifically literate their potency exceeds their numbers. Prospective members are examined on their knowledge of genome science and privacy issues. They are the tech aristocracy. They won’t be for long, however, if they meet their goals: their current target is to expand the congregation to 100,000 genomes.[1]

Before deciding whether the gazillion genomes project is right for you, consider the following. Whether or not I believe my genome is “me,” there is little doubt that it contains intimate, perhaps compromising information about me. Why should I share it with the world? Don’t think of yourself, answer the PGPers. Do it for the sake of medical research. Feed the database for the sake of the database. Now, “medical research” is a complex beast. It is, among other things, a communal knowledge base (“scientific knowledge”); a body—thousands strong—of devoted, skillful, underpaid post-docs; an international, collegial and highly competitive community of principal investigators; a legion of highly profitable nonprofit universities and medical schools; and a large for-profit sector that includes gratuitously wealthy biotech and pharmaceutical executives. The PGPers idealize medical research, neglecting its more mercenary elements. In the long term, of course, individuals (or, more likely, their children) may benefit from accelerated medical research: the hope is for improved diagnoses and therapies. But in the short term—where Americans think best—the impetus is not always so noble.

You needn’t be a tech aristocrat to join a genetic community, however. Once you pay your C-note, spit in the tube and create an account with 23andMe or one of the other DTC genomics companies, you can join a variety of forums devoted to people who share some part of your genotype. Until recently, 23andMe offered both a genealogical and a health profile. In November 2013, the Food and Drug Administration shut down the health profile side. A few days later, a class action lawsuit was filed against the company on several grounds, including that they had “falsely and misleadingly” advertised the health claims of their genomic data and that the company used the data it collected from consumers to “generate databases and statistical information that it then markets to other sources.”

All genetic communities—whether they comprise tech aristocrats or what we might call the genetic proletariat—tend to have a populist bent. They think of genetic information as something that should not be the exclusive province of elite medicine. They are right about this. If you can interpret it accurately, having your genetic profile can provide communal support, and it may prompt proper medical consultation, positive lifestyle changes, further diagnostics, even prophylactic treatment.

However, it should be noted that these communities are often run by for-profit companies that collect and store your genetic information, largely without oversight. Data brokers, who buy and sell information about all of us, value health information above any other kind of data. A study by the investigative journalist Emily Steel showed that while demographic information such as age, gender and location was worth only $0.00005 per person, health information, such as specific diseases or drug prescriptions a person was taking was worth $0.26—5,000 times more. You think you get too many Viagra ads now? Imagine your inbox when your 23andMe profile suggests you have a 20-percent higher-than-normal risk of erectile dysfunction.

In sum, there is a tension between the rhetoric of the open-genomes movement and the funding, the knowledge base and the sub rosa statements of its leaders about why we should join up. It’s worth asking how free that data is once we release it. Who is most likely to benefit—and what laymen can do to claim their share of the riches?

SCIENCE SAYS SO

DNA, of course, is only one half of the information revolution of the last half-century. Genetic information may remain the gold standard for identifying you as a person, but we now have electronic identities and communities as well. 23andMe offers a sense of certainty when it welcomes you to You. This certainty is largely illusory—it relies on a conflation of the fundamental with the unavoidable—but nevertheless, on the cultural level, genetic identity is stabilizing. Electronic identities, on the other hand, offer fluidity. On the internet, avatars, screen names and other digital personas enable us to reinvent ourselves and form new kinds of communities without regard for geography, employment or other “true” identity.

The genetic and the electronic worlds are complementary in more ways than one. The four-letter code of DNA translates easily into computer binary. Your entire genome could fit on a CD. A highly detailed and annotated genetic profile could easily be copied onto a flash drive the size of your fingernail (and perhaps tattooed conveniently on your wrist or slipped, on a chip, subdermally). Conversely, DNA can literally store text. George Church at Harvard Medical School and Ewan Birney of the European Bioinformatics Institute have each developed DNA-based repositories that can store hundreds of times the contents of the Library of Congress in a droplet of DNA. Meanwhile, synthetic biologists such as Craig Venter treat the genome as a computer program. They are well on their way to “booting up” a completely artificial cell. Computing and genomics are rapidly merging into a single family of information industries—some dry, some wet. So intimate is this relationship that Anne Wojcicki, 23andMe’s CEO, married Google cofounder Sergey Brin (although apparently the couple has since denatured).

Whether or not the creation of a gigantic commercial biosocial database was ever dinner-table conversation in the Wojcicki-Brin household, it is certainly happening. In 2013, the biologist Yaniv Erlich performed a creepy proof-of-concept experiment. Starting with (anonymized) DNA sequences from the 1000 Genomes Project, Erlich produced DNA profiles of individuals, searched public databases, made a few educated guesses and identified their names. From there, it was just a few clicks to find their Facebook pages, from which, of course, one has access to details of their sexuality, shopping preferences and “major life events” (marriage, pregnancy, jobs, etc.). And Facebook being what it is, one person’s page links to those of family and friends. So by sharing your data you are also sharing others’ data, nonconsensually.

These biosocial networks do have a genuine upside. In a recent New Yorker article, Seth Mnookin profiled Matt Might, a computer scientist at the University of Utah and a savvy blogger with a large internet following. When Might firstborn son Bertrand showed signs of a mysterious disease, the family found a doctor who ordered the complete sequencing of Bertrand’s exome (the 2-percent portion of the genome that codes for proteins). He found a mutation in a little-known gene called NGLY1; Bertrand apparently had an undescribed genetic disease. Might used his internet clout to find other cases. He wrote a blog post that went viral and, as it circulated, prompted other families with children with similar conditions to contact him and his team. There is still no treatment, but the initial research and community-building are underway.

Such stories are often used to illustrate the “democratization” of biology. High-tech biology, the narrative goes, is breaking out of elite academic labs and going public. So-called DIY biology is a growing movement of people who carry out genetic analysis and engineering experiments in their kitchens or in public or private “hacklabs.” The slogan of Drew Endy’s BioBricks Foundation, a leading exchange for biotech “parts” and “devices,” is to pursue “genetic engineering in a responsible, ethical manner.” The poster for DIYbio, the leading group promoting do-it-yourself biotechnology, is a hand wrapped in a raised fist around a pipetteman, the molecular biologist’s signature tool.

But this notion of genetic populism is romantic, if not disingenuous. According to one recent survey, more than a quarter of these amateurs already do research in an academic or corporate laboratory, and nearly one in five has a Ph.D. DIYbio may promise access to biotechnology for all, but practically speaking it is only available to those with the resources and training to use it. Indeed, achieving the democratic ideal of open access to genetic information will be far from straightforward. The techno-optimists seem to assume that once the technological problems are solved, the rest will follow automatically and without incident. In fact, developing the technology is the easy part. Historically, technology has not been a great friend of the working class, and heredity has been a potent tool for shoring up, not smashing, social boundaries.

“Big question is how to mainstream the process so don’t have to be a @mattmight or connected to reap benefits of NGS [Next Generation Sequencing],” Mnookin wrote to me in a tweet. Big question indeed. Until we answer that one, the ability to sequence and understand genetic information will tend to be socially stratifying, not leveling.

COMMUNITY, IDENTITY, STABILITY

The motto of Huxley’s One World State was “Community, Identity, Stability.” We have seen that genetic information contributes powerfully to all three of these values. Genetic essentialism—the idea that our genes carry our fundamental essence—creates an almost irresistible sense of biological identity that seems independent of the state of genetic knowledge. Genetics contributes to the growing trend toward what the sociologist Nikolas Rose calls “biological citizenship”—communities based on health status, rather than on traditional qualities such as labor or nationality. And genetic information might well help stabilize and solidify social strata.

Those parallels do not place us in Huxley’s dystopia. Our brave new world, it turns out, is not an authoritarian government but a strange new marketplace, in which privacy and identity are commodities. From Facebook pop-ups to grocery store discount cards, we constantly exchange our personal information for product suggestions or lower prices. By getting on the data grid, we turn our personal information into a commodity. In the brave new information society, retail companies seek to ease their products into your jeans (and sometimes your genes into their products) as easily and painlessly as possible. Today’s “soma” is convenience.

Biology is an increasing part of this consumer culture. The new iPhone and Android phones can monitor and aggregate your vital signs, such as heart rate and blood pressure. Apps that provide this information could have real health benefits, such as alerting users to danger signs or motivating them to stick with their fitness regimens. But it’s an illusion that your phone tells you this information. In fact, you tell your phone, which in turn tells the companies whose handy little apps you downloaded. Siri may ask, “Low energy? There’s a Starbucks on the next corner. Shall I order your usual double skim latté and blueberry muffin? They will be ready when you get there.” Perhaps iPhone 9 will measure serotonin levels. Maybe on iPhone 11 Siri will know your genome. “Given your tendency toward congestive heart failure, I’ve canceled your cable subscription, signed you up for a six-week aerobics class on Thursday nights, and switched your pizza order to a salad.”

When we relinquish privacy and commodify our data, we should expect something in return. But doing the cost-benefit analysis with our genetic information is as tricky as it is important. We can be confident of two things, however. First, its exchange value is overrated. The persistence of genetic essentialism creates a bubble that consistently inflates the perceived value of genetic information. It is a seller’s market. Second, however, its use-value—what can actually be done with my DNA—is both unknown and in constant flux. Genetics does matter to health, of course, but in what ways and to what extent changes at the hectic pace of scientific discovery. For these reasons, it seems wise to share our genetic information judiciously and with due skepticism.

This brave new world need only be dystopian if we surrender our agency. If we are aware of the exchanges we are making and how our information is valued—if we are alert to the commodification of personal data—we can remain active players instead of becoming pawns.

*This article appeared in our Issue 9 symposium, What is Privacy for? To read the rest of the privacy symposium in print, subscribe here.

Clarification: The original version of this essay stated that the Food and Drug Administration had shut down the health profile side of 23andMe on the grounds that the company had misled customers about the certainty of their genetic data. That claim did not appear in the FDA’s warning letter but in a class-action lawsuit filed against the company. The language in this article has been updated for clarity.

    Footnotes    (↵ returns to text)
  1. Indeed, the British National Health Service recently announced a 100,000 genomes project of their own.
  • Kindle
  • Common Reader

    One small correction to this interesting essay: Daedalus is not a story, and it is not science fiction (or even “sci fi”). It’s a short book, or long essay, of scientific speculation that is still worth reading even 90 years or so after it was published. It is not “sunny” either: it’s a series of thoughtful and thought-provoking observations by a leading biologist who also happened to be a Marxist who, unlike the mystical and romanticising Huxley, knew how to write clearly
    . TL;DR: Justice for J.B.S. Haldane!

  • Dredd

    Very informative. Thank you.

    Some recent data indicates that our genomes are not unique (On The Origin of Genieology).

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