“What will commercial genome-reading – from cheap 23andMe to costly but complete Knome – do to middle-class conceptions of personal identity?”
Say the name Knome out loud, not in one syllable but as two:– “know-me.” The corporation unabashedly offers “Know thyself” at the masthead of its Home Page.
I accept the implied invitation to connect modern technology with the Delphic injunction. “It is a matter of placing the imperative to ‘know oneself” … back in a much broader context of questioning that is either implicit or explicit. What should one do with oneself? What work should be carried out on the self?” That is Michel Foucault, talking about the “techniques or procedures … that are suggested or prescribed to individuals in order to determine their identity, maintain it, transform it.”
Are the direct-to-consumer online genome services forging a new technology of the self? There are quite a few good companies that go beyond specific ancestry tracing or specific risk evaluation (say for breast cancer). The very name of the global-Icelandic deCODEme invites “decode me so that I can know me”, but I shall focus only on the two American firms mentioned. Note that in these names it’s “me-me-me” at the end: personal identity is only a stone’s throw away.
Knome differs from 23andMe in many ways, starting with the fact that it offers your complete genome, while 23andMe is partial, looking at particular sites. More important: 23andMe encourages sharing your genetic data, while Knome emphasizes privacy. Hence they bear on your identity, as a person, in different ways.
23andMe does health and ancestry, but creates, as a byproduct, new biosocial groups. That is a phrase I adapted from Paul Rabinow, and explained in my “Genetics, biosocial groups & the future of identity.” Families are biosocial groups in which the proportion of biology ranges from zero to 100% (from an always-single person with adopted children, to an idealized nuclear family). So are races. In both cases the biosocial group can be integral to the identity of members of the group. Start saying who you are and you will soon be referring to biosocial groups. To create new ones is to generate new possibilities for new biosocial identity.
A few weeks after you have paid your $400 and sent in your spit, 23andMe writes back with a link to your genetic profile. It does not say “Welcome” but welcome to you. It is “You”, that’s Me, all the way. The implication is clear, you are about to learn about the real you.
Next, we are urged to “explore, share and discuss” our DNA. It is like Facebook. I get to join groups of fellow subscribers with whom I share some DNA commonalities, be they connected with health or haplotype. For some, these will be support groups of those said to share a significant risk of something awful. For others it will be a new way to forge genealogical links. New groups are formed, almost a parody of the idea of biosocial identity that I envisaged in the piece at the link above.
At first glance this looks like a pretty thin type of identity, not deserving of a connection with the grander philosophical ideas of the self. Yet the ways in which people come to think of themselves in terms of their support groups or their extended families cannot be exaggerated. Don’t underestimate the Facebook mode. It should be recognized as a contemporary public forum in the same business as the confessional, a device, which, from the Church to the analytic couch, has played an integral role in forming the Western idea of the self. The story, it may be suggested, continues with the “sharing” of identities on online within the framework of the likes of 23andMe. Of course, the traditional confessional was a private, two-way street, so let us turn to the private.
Knome incarnates a far stronger impulse to self-knowledge than 23andMe. It is the first company to offer a complete sequencing of your genome for cash (now down to $99,500). One sales pitch is an unabashed appeal to narcissism. Four human genomes have been sequenced with public funds (Ventner, Watson, unknown Han, and an unknown Yoruba.) Now you can join with a few more individuals whom Knome is sequencing. For a short time only, this elite group will be less numerous than astronauts who have stood on the moon. That is temporary fluff. Costs will drop radically. Complete sequencing will become a middle class luxury option. What’ll it be, honey, that week in Paris or our genomes?
The week in Paris seldom leaves much of a trace, but the genome surely will. The picture is, that you have learned your essential you. That is why the small investment will be “suggested or prescribed to individuals in order to determine their identity, maintain it, and transform it.” To determine, in the sense of find out their identity, to maintain (first in the sense of prevention of disease), and finally to transform themselves, in manifold senses.
Today a vice-president of Knome will take you through the hoops, but in a few years, competitors will outsource phone consultations that will not much differ from the useful chat you had with the tech person last time your computer broke down. Incidentally, Knome already outsources its sequencing to Shenzen, where the Beijing Genomics Institute has outstanding facilities. Even it seems to have an eye on the “me” market. In February it had a training workshop whose theme, in awkward translation, was “BGI&Me—Innovation Development Guided by Scientific Concept of Development.”
I am a conservative reactionary. I know that although my genetic inheritance constrains my possibilities of action and choice, I do not believe it is my essence or constitutes my identity. My question could be put: how long will it take before this attitude becomes extinct? We know that the genomic revolution will radically change the material conditions of life for soon-to-be-born generations. My question is: what will be the conception of self for those people soon to come?
Know Thyself and Know what you know
Ian Hacking’s incisive piece poses the problem of future identities forming around knowledge claims.
I would only add that the genetic and genomic information is far less sure that these companies or many others would have us believe.
Just a few examples of how the biosciences actually advance in their knowledge:
(1) on the eve of the announcement of the sequencing of the human genome there was a pool among leading scientists as to how many genes there would be. With the exception of one French scientist all of the responses clustered in the 80,000 to 120,000 range. The number is closer to 24,000.
(2) Clearly, as Sydney Brenner would have it, the gene was no longer the gene.
(3) A whole new field of exploration flourished of how so few genes could produce as much variation as they did. An ever-growing number of RNAs were discovered and discovered to have important genetic functions. No one knew they existed before a different question was posed.
(4) Very little is known about human genomic variation (with only a handful of genomes sequenced) and next to nothing is known about the functioning of the inner and outer milieux in which such variation takes on functional importance. Fortunately we have a lot to learn. Again, Brenner’s quip that we are at the beginning of a century of biology is to the point.
So, perhaps we need another industry or another set of facebooks to respond to the “Know thyself” stuff coming out today. The care of the self in the future may well require more knowledge.
Lest this seem implausible: anyone who has dealt with “cutting edge” medicine will know how little is actually understood and how much disagreement there is even about what the biological questions are in say cancer, asthma, diabetes etc. From there, the art of Knowing and Caring for the Self and Others begins to get challenging.
In Professor Hacking’s response to ‘genome reading’, the use of this phrase is an extremely lucid way of framing the issues. Genome reading, as Professor Hacking clarifies, is no longer a question of medical testing on the one side, or ancestry on the other. Many things come together, or converge, in sequencing bits of, or whole genomes. Whole genome sequencing, like that offered by Knome, is not testing for anything less or more specific than ‘you’. As Professor Hacking indicates, this offers a genomic version of the self, and this has been taken up in celebrity accounts of these services. However, because so many things come together, the same convergence opens up these genomes for interpretation and critique. Genome reading offers a text to be read, not because the genome must be read as the book of life [as certain protagonists would have it], but because a personal genome is a digital media object, a text in circulation.
As Professor Rabinow also makes clear, potential readings are uncertain, but not infinite. Audiences for genomics are cued to look for certain types of reading like disease and ancestry.
Professor Hacking points out that Knome and 23andMe offer different ways of reading your genome. In the case of Knome privacy is guaranteed through the offline object – an encrypted genome – on a data stick.
However, we could also turn to publics. 23andMe suggests reading practices that are networked, interactive and online. This personal genome is not given as an object, but browsed in a networked mode. Sharing, annotation, questionnaires and other interactions are encouraged in order to improve the value for both the customers and for genomic research. This kind of interaction is work. Making up the numbers, and leveraging everyone’s data, is the Web 2.0 type promise of 23andMe. 23andMe has the requisite ‘me’ of all things genome. It also offers the work of ‘we’. It is pure Facebook as Professor Hacking points out, and rather a lot of Google, putting the bio in social networking, and the labour of audiences at the centre of genomic research.
Genome reading, hopefully, will not necessarily signal the extinction of conservative reactionaries, although it exacerbates the ‘me’ of contemporary modes of subjectivity. However, it does mean different reading practices, publics as genome readers, with new intermediaries, and new ways of being both public and private. What new ways of being public, or creating privacy, come when your own genome is part of the media address?
Even sacred texts are open to negotiation once they circulate, and they make unpredictable audiences and publics of their readers. SNPedia [the personal genome wiki], for example, offers a limited opening for comparative readings, between the proprietary systems of Knome and 23andMe. Genome reading figures a genomic self, and that will be exacerbated by cuing up behaviour and race for reading in the genome, but it is also about new reading practices, ways of being public and private, and about the relationships between genomic science and its audiences.
My genome and me.
With respect to personal identity, most of us are probably “conservative reactionary”, as Ian Hacking claims to be. Thus, we doubt that the genome is a good candidate for defining personal identity. The reasons are obvious. What’s personal in personal identity cannot be reduced to the biological. Even without returning to an old fashioned dualist babbling, it seems unreasonable to put it all on the body side. My body is a (huge) part of my identity, but only a part of it. But I can use it to express my personal identity, through body modifications, for instance. Bodily appearance is a tool for in-outgrouping, through clothing, for the most casual, tattooing, piercing, branding, etc., for more extreme versions. My body seems to be something that can be appropriated, that I can transform to make it really mine and to express what I really am – at the time of the transformation, I should add (try to remove a tattoo). Needless to say, even without intentional appropriation or expression, my bodily appearance reveals a lot of what I am. What does my genome reveal? Biological features – important ones notably when it comes to health risk or forensic issues – and biosocial history – the bio-geographic past of the population I am affiliated with. Health and roots. That’s not enough for identity, in my view.
My body is the result of my biosocial past. What is really personal is what I make out of it. Identity means, at least, a body – with genome embedded – plus history. I mean my own personal history, the one that I write, which begins where the past one, the unchangeable, ends. Or make it a genome -with body as a vehicle (if you are Dawkins-minded and believe that the right level of selection is the gene and not the organism) – plus history. To be personal, identity means that I have the possibility to act and to change myself, to make myself what I am or what I want to be. To be personal, identity must be biopsychosocial and leave room to my becoming myself. Strangely enough, the personal stuff you can find on Facebook and other social networks is often very intimate, but displayed without much care about privacy, making Facebook the best friend of private detectives. “My own private little self” tends to be widely shared on the internet: 23andme has serious rivals, as regards sharing personal data.
Maybe tomorrow genetic screening will feature in our children’s papers, among health insurance numbers and blood group, together with notices on special allergy risks, emergency phone numbers and organ donor cards. Maybe they will induce some looping effects of the kind described by Ian Hacking, leading people to change their behavior because of the acquired knowledge about their own potential genetic risks: thus, by controlling the environmental factors, they could limit the threat and escape what has never really been a genetic fate, in most cases. Useful knowledge, which protects against yourself. Genetic screening is probably an important medical turn for prevention and personalized care, important also for personal ancestry – but in both cases, it’s mostly a matter of degree: genetics provides more information, and more precise, than other techniques, medical or genealogical. Yet I feel in a rather deflationist mood concerning its importance with respect to personal identity.
Concerning classes and self-conceptions, are there as many middle-class conceptions of identity as there are middle-classes? Assuming x number of subgroups in the middle-classes, will x decrease as members of the subgroups get access to personal genomic info? Will access to the technologies have homogenizing effects on those who benefit from it?
Imagine that personalized genomic info remains expensive for many decades and is only available to the upper-middle-and-up classes. Will those people become more and more alike as the quality of their lives increases? It seems intuitive that, as a group, they would become more and more unlike those lacking access.
Hello, Ian! First time-blogger! (Is there—can there be? —a smiley icon for deadpan?) These questions/comments are provoked by your Saturday 28 March talk at the LSE Symposium on Human Genomic Diversity and Biomedical Practice, where you invited the participants to contribute to this blog.
I’m wondering about your views on the ethical slash aesthetic assessment of identities and the project of identification. I mean the latter expression as an umbrella term for the whole enterprise of inventing/discovering subjectively acknowledged/affirmed identities.
The more immediate starting point for my question is found in reflection on my immediate, unreflective (and here uncensored) reaction to some of the new online identities you mentioned in your talk—which specific identities they were, I thankfully don’t remember (middle-age memory loss as a force for generality). The reaction took the form of the thought “Boy, that’s a dumb identity.”
Now even to mention this fleeting thought trips the (thought-constraining) ethical imperative “Don’t diss anybody’s identity.” I need to bracket that demand (whose force I feel and which if properly formulated I would endorse) just for the moment even to get at what I want to try to say.
Anyway I found myself stepping back from the immediate first-order thought (imagining you taking umbrage) and wondering what you yourself thought about (a) the online identities you mentioned, (b) the very idea of online identities (very crudely, are they a good thing? or a bad thing?) and (c) what you think about the ethical (and aesthetic) evaluation of identities in general.
You seem to be at pains to avoid adopting an evaluative position. Is this correct? If so, is there some principled motivation for the avoidance?
One possible basis for identity evaluation (abstracting from the question whether the identity in question is one’s own or someone else’s) would involve the epistemic standing of the basis for identity. An example: it seems to me that there is (a) something wrong with the (white, Northern European) racist’s (call him John or Hans or Jean-the-racist) self-identification as Aryan (b) having to do with false and confused beliefs about who he is, who his ancestors were, the ontological standing of the “racial” group to which he takes himself to belong, the actual identities of the original Aryans, etc. This is presumably not the only or main thing wrong with John/Hans/Jean’s act of identification and the identity he claims as his own. I chose the example to see how you would respond to a stock question (are there any identifications you would disapprove of?) and to get at your view about the relevance of cognitive or epistemic error in the evaluation of identities.
Reflection on this point leads to the question I had in mind about your view on the whole project of identification. Is identification essentially essentialistic? (Are there, can there be non-essentialized identities?). I imagine your answer to this is probably No, but I wanted to see for sure. Many people certainly exhibit a strong inclination to essentialize identity-ingredient labels, properties, descriptions. The tendency to essentialize the self seems to be a deeply seated associate of self-identification.
Now, you, Ian, think there’s something wrong (namely, falsehood) with idea that people have essences. Can we distinguish between more and less central identities or identity-features if we give up on the idea of essential identity components? Or do all identity features end up being on a par. One personal (possibly impertinent) question related to this last question to check your sense or these things is this: You indicated in the LSE talk (in connection to the theme of genetic/genealogical ancestry) that the results of your personal commercial genome reading showed that you are the product of generations upon generations of white, Anglo-Saxon, Protestants—WASPs all the way back. My question is How does the fact your ancestry is thus and such figures in your own identity? Actually the more specific question I had in mind concerned the way in which your “WASPhood” figures in your identity. Do you think of it as important? Of it as something to be affirmed? As something requiring a critical stand? As something requiring no stand at all? Also (slightly different point)
How does having a white Anglo Saxon background figure in your sense of being-a-WASP? My own hunch is that one is born the product of white Anglo Saxon forbearers but becomes a WASP. Could the new genomic technology lead people to misunderstand the socially constructed character of certain identities (such as being a WASP) as something purely biological?
I was also wondering what you think of “authenticity” (Eigentlichkeit) as a possible dimension of identity evaluation. It’s become fashionable recently to dump on the whole idea of authenticity — on the ground that it necessarily presupposes an essentialist view of the self or a commitment to the idea that there is one true self to which one could be true. That seems to me intuitively wrong even if it becomes more difficult to specify the content of authenticity or the grounds for ascriptions of authenticity or inauthenticity. One thing to say in this connection is that as I understand it inauthenticity (not authenticity) is the idea that “wears the pants.” Inauthenticity seems to me a real possibility even if one doubts that there is a determinate state of being authentic. In this vein Winncott is supposed to have used ‘true self’ as a counterpart to ‘false self’. Another, rather indirect reason for thinking the notion that authenticity requires essence wrong is that the early Heidegger seems to like the former idea (I realize that the idea’s “official” role in Sein und Zeit is purely methodological) and self-consciously and emphatically eschews Wesen (essence) talk in favor of Sein (being) talk. His inquiry into self, as you well know, is an investigation of selfhood without essence. Inasmuch as authenticity is a possibility for a self-with-no-essence, essence is not a presupposition of authenticity. All of this was meant to clear the way to see whether you think that authenticity-inauthenticity is or can be a coherent and well motivated dimension of evaluation of the self’s identity. If you do, what sort of things do you think go into the evaluation of the authenticity of an identity?
I’m now remembering more specifically some of the identities you mentioned that provoked my possibly intemperate thoughts. In your talk you suggested that geographically identified alleles or allele associated geography constitutes a possible new source of identity not available before the recent appearance of the new genomic technologies. That seems right, interesting, and noteworthy. But I’m interested in your evaluative take on such identities and your take on taking an evaluative position on them. Let me indicate something of my own attitude as a way of eliciting (perhaps by provocation) your thoughts. I can make sense of interest in the results of “personal genomic” profiles insofar as they are understood as markers of genealogical ancestry (a traditional and intelligible object of identification) and I can see the value of acknowledging the geographical (and perhaps morphological) diversity of the “ancestral home” of certain alleles as a way of acknowledging the geographic/morphological diversity of ones ancestors. Recognition of diversity in one’s ancestry is likely to promote greater tolerance of diversity überhaupt. On the other hand the idea that one would care about the evolutionary vintage of some fraction of one’s genes as something in its own right seems just nutty to me. Does it seem nutty to you?
I suppose IF one was inclined toward genetic reductionism the history of the constituents of one’s own personal genome might become an intelligible object of interest in itself (owing its relation to you-the-gene-collection), but the underlying view of self seems neither plausible nor appealing to me. I take it that it’s not a view you find attractive either. Did you mean to be suggesting that the new genomic technologies are likely to foster misconceptions of the self?
It seems to me that in assessing the role that biological developments such as the new genomic technology or new biological ideas such as populationist race, it is important to distinguish between (a) the dumb ways that people can identify with almost anything and (b) forms of identification that are fostered by proper understanding of the possible object of identification be it technology, the results of that technology, or the new biological idea.
Thoughts?
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Decode me!
Ian Hacking has put his finger on important aspects of the personal genomics offered by 23andMe, deCODEme, and similar services. They all represent both late-modern narcissism, the fascination with technologies of the self, and the “biosocial” networking Rabinow associated with the collapsing of the biological and social. This is, indeed, consuming genomics, a rapidly growing business receiving both substantial financial support and intense public attention. Soon after its launching, one may note, in 2008, 23andMe held a “spit party” during New York fashion week; celebrities would gather and spit into a test tube, celebrating their public selves and their private genomes at the same time in the process of making a new biosocial craze. By the end of 2008, Time Magazine declared the retail DNA test of 23andMe the best innovation of the year.
The archaeology of such genomic exercises has several layers, among them maps of human genome diversity, population biobanks, digital genealogies, and the Internet. One influential development was the personal genomics developed by Bryan Sykes through his Oxford Ancestors service, offering to trace ancestry to the “seven daughters of Eve”. Significantly, Sykes’ book on the subject (2001), opens with the question “Where do I come from?” and closes with a chapter on “A sense of self”. The genomics of ancestry, it is assumed, provide an important avenue into identity. A number of websites testify to a lively discourse, including thinkgene.com, dna-forums.org, Eye on DNA, Dienekes’ Anthropology Blog, and Urban Semiotics. Here, the virtual community of genetic citizens actively debates and negotiates roots, identities, and health risks fusing the expertise of geneticists and non-professionals for the purpose of scrutinizing SNPs and comparing haplotypes. Clearly, as Hacking emphasizes, these are biosocial communities in the making, social networks based on identification with genomic characteristics.
Here I want to draw attention to the possibility of extending the notion of biosociality into a somewhat different direction. Combining insights from Marx, Rabinow, and some others, one can speak of biosocial relations of production, for the purpose of underlining the labor and hierarchies of emergent biocapital: see my article in the latest issue of Comparative Studies in Society and History (http://journals.cambridge.org/action/displayFulltext?type=6&fid=5092776&jid=CSS&volumeId=51&issueId=02&aid=5092772&fulltextType=RA&fileId=S0010417509000139). Arguably, the middle class people contributing cheek swabs to personal genomics services are engaging in a labor process that ultimately results in large-scale biobanking. The spokespersons for 23andMe, unlike most of the other projects, are quite open about the issue of banking and alternative uses of their data. Whatever their current ambitions, such schemes are likely to connect with larger biomedical projects in the future. Thanks to the development of bioinformatics and the Internet, it is no longer necessary to assume a central “hub” with monopoly of access. Already, there is much talk of federated databases. Record details from remote database may be directly searchable by other computers taking part in federation. Spitting and snipping, after all, is biosocial work, contributing to the global networks and hierarchies involved in the manufacture of biovalue.
I am an ultra-conservative reactionary. Consider this: There is a man with amnesia. He can’t remember any of his past, his relationships or, more importantly, who he is. Do we assume that Knome can allow him to Know Himself once again? That assumption, I think, would be absurd.
To answer professor Hacking’s question, I think future generations will see through the genome craze for the same reason I have mentioned. Genetic inheritance does not constitute “Thyself” under any stretch of the imagination, nor will it enable us to “Know” much of anything, given professor Rabinow’s point. The future conception of “self” will likely be very much like our own, and if it does become extinct, it is only because we as a species have met that same fate.
What I found most striking about the KNOME website was the digitization of self. At once, your human traces are uploaded into the system then decoded in light of scientific knowledge. Downloaded on to USB is a map of your capacities of self hyperlinked to the latest journal articles on what it might mean to be human, or rather, to have a certain genetic make up. Certainly, this would have a profound effect on the middle class’ stability of identity or perhaps even reveal a lack of identity. These services produce two modes of understanding one’s identity, the potential self and the historical self. Here, the cultural imperative to know me combines with another imperative to know technology (as Barry writes in Political Machines). The access to technology gives the seeker a look into a “deeper ancestry” (as articulated by national geographic’s genographic project), and a “deeper self”, one infused with the potential of their capacities.
In terms of the potential self, sociologists will worry about the creation of new subjectivities such as the “potentially ill” population or the reconceptualization of race, where my father, a white Irish man from Boston, finds out that he’s African just like the rest of us. In this way, nationalism may triumph over ethnicity, giving rise to crises in what it means to be a modern me. As well, some might find other skeletons that families have hid for years such as their own intersexuality or any socially abhorrent genes not fit for reproduction. I don’t think this, however, draws a clear line towards old eugenics though as biological screening services have existed for sometime without these kinds of repercussions (although, never before has a technology professed to go so deep while in reality being so shallow). Instead, responsibility for knowing one’s potential and living up to these capacities, which is come cases would mean avoiding disease etc, would give a sense of both impending doom from the moment of download, leading to worried and anxious interactions with the environment, as well as joyous celebration in knowing that a certain bad gene skipped a generation. In this way, the potential self will harbor resentment towards prior generations misshapen DNA, while also sigh relief in knowing freedoms from other diseases.
Middle class identity is constituted through this technology as both ancient and modern. The modern self, the real you, is imbued with potential and experience, while the ancient self is burgeoning, not yet fully formed. While archeological studies on the Fertile Crescent posit a sense of human historicity, the linking of one’s bodily fluid through time and space seems to resonate as truly authentic, giving it the quality of a hyperreal you. What this could mean for how people speak about their ethnicity, their history, their genealogy is difficult to determine, except that the emphasis on themselves, their potential and their history, will be affected by this new knowledge of who they really are in light of who they might become.
Without a doubt though, these companies are offering a unique way to experience the self that should only extend given time. Instead of going to Paris, I await the African tourist industry that will follow this pursuit of happ-ME-ness.
Let us all be conservative reactionaries; let us know that our genetic inheritance constrains our possibilities but does not constitute our identities. We could ask Ian Hacking’s question: when will genetic determinism fade away? Suppose the best arguments against genetic determinism sway. These arguments go: our identity is constituted by “genome + other stuff“, where other stuff are factors that we reactionaries think are causally relevant to our identity; therefore it is false that our identity is constituted solely by our genes; our genes are insufficient to determine our identity. As Paul Rabinow says, we know so little about genetic information. We might now worry that the next version of Knome or 23andMe – call it 23andother stuffandMe – will respond to this reactionary argument by offering to decode our “genome + other stuff“; their marketing will be similar; they will have science on their rhetorical side. We conservative reactionaries will respond with an updated version of our current worry: we will say that our “genome + other stuff” does not constitute our identity, because we will know that our identity is constituted by “genome + other stuff + even more other stuff“. Get it? Meanwhile, identities will be formed around other stuff criteria; biosocial groups will coalesce on Facebook-like forums; there will be a looping effect of other stuff kinds. And we conservative reactionaries will lament ignorance of even more other stuff.
The New Technology of the Self?
Two words in Ian Hacking’s title say a great deal that he otherwise does not discuss: “commercial” and “middle-class.” 23andME (to which I restrict my remarks) is selling a “cool” product to a relatively well-off and well-educated population. The sales pitch is a form of direct-to-consumer marketing, backed up by the latest scientific research, guaranteed by a prestigious team of academic experts, and including even caveats about missing evidence and uncertainties. It resembles a sophisticated version of the marketing of a blockbuster drug like Lipitor, citing 400 studies and including a rapid-fire list of side effects (which one supposedly ignores). But what is on offer from “the world’s trusted source of personal genetic information”?
With respect to health, there are two levels of diagnostics, Clinical Reports (more reliable) for 28 conditions and Research Reports (less reliable) for 79. A few of the Clinical Reports, e.g., for lactose tolerance or bitter taste, concern simple traits that depend on single mutations and thus seem definitive. Others, e.g. for muscle performance, concern very complex traits but suggest that a single mutation “may contribute to whether you are a sprinter or a marathoner.” Well, perhaps; the subject is controversial, but the controversy is not reported. For the Research Reports, things get worse. For schizophrenia, your genetic data is compared to just one study. The trouble is, there have been multiple studies (not reported) and they apparently yield no consistent result. Thus 23andME claims only that a correlation “may—if confirmed—affect your odds of having or developing a trait.” It would seem they are selling highly selective and speculative information aimed at arousing curiosity, or more likely middle-class anxiety, about what might befall us as individuals.
If this is the new technology of the self, it is indeed pretty thin stuff. I want to say that it is hardly likely to have much affect on anyone’s sense of self. But Hacking rightly warns us not to underestimate things like Facebook and 23andME in forming new social identities. As a historian, I am reminded of astrology and phrenology as technologies for defining and predicting the self, but the caution is the same: they had enormous personal and social significance in their day. The reason seems pretty clear. They offered a physical, causal account of individual traits, making them more “real.” We humans seem to have an inordinate respect for such reductionist views of what in our more sober moments we know to be enormously complex phenomena, even biologically. The bits of information with which 23andME is dealing will become more credible in terms of personal identity when they incorporate a great deal more of this complexity, including epigenetic characteristics and the significance for gene expression of things like nutrition, mental states, and social relations. The self affects the biology.
In Professor Hacking’s insightful discussion above, he observes that the genetic identities that undergird new biosocial groupings appear, at first glace, to be a pretty thin type of identity. However, he quickly goes on to caution, I think absolutely rightly, against underestimating the importance of individual identification with support groups. This is especially true when the biosocial groupings in question centre around the shared risk of (genetically ‘revealed’) predisposition to disease or, as Hacking puts it, “a shared risk of something awful”. The potential for groups to coalesce around shared genetic traits – independent of geographic location, for example – is only enhanced by internet networking sites, thus Hacking’s directive: “Don’t underestimate the Facebook mode”.
It is the emergence of new biosocial groupings around genetic risk that I think speak to the heart of Foucault’s comments about ‘technologies of the self’ with which Hacking begins his reflection. What actions upon the self does the knowledge of one’s genetic code – and of genetic predispositions – entail? Once one holds the knowledge of their genetic self, what should one do? What work should be carried out in order to determine, maintain, or transform one’s identity and sense of self?
It is in the concrete actions that genetic information inspires that, in my opinion, the consequences of genetic identity are most readily seen. Here we are no longer in the territory of speculation or mere rumination, for very real medical interventions are not infrequently undertaken on the basis of particular genetic identities – by carriers of the breast cancer genes BRCA –1 and 2, for example. In fact, in 2007 Time magazine listed as one of its top ten ‘buzzwords’ of the year the term “Previvor” – someone who is a “survivor of a genetic predisposition to breast or ovarian cancer”. A veritable previvor movement, largely internet-based, has coalesced around this shared identity of being ‘genetically at-risk’. Women who undergo genetic screening and are identified as ‘at risk’ undertake such radical surgical procedures as prophylactic double mastectomies and oophorectomies in order to minimize their individual risk. Far from being ‘pretty thin stuff’, I imagine that the motivation to undertake prophylactic surgeries of this magnitude could only come from a drastic reorientation of one’s sense of self as a result of the knowledge of their genetic code.
Of course, how the new genomics articulates with the various axes of inequality in society largely remains to be seen. Nevertheless, these new genetic technologies seem to posit the same provident and prudent neoliberal subject, so while new biosocial groupings might have the potential to recast with whom we identify, it isn’t hard to imagine that well-established patterns of white, urban, well-educated, middle-class privilege will simply be reinforced.
Would this make me the lone liberal anti-reactionary?
We can all agree that identity probably can not be reduced to a digital code, even if this code comes from every (nucleated) cell in our bodies. Yes, most of us have seen GATTACA and we don’t think a digital sequence is the end-all of self identity. Because of this, I’m going to avoid the “genomic reductivism” trap. However, as a historian, I cannot help but think that the genome testing doesn’t really do anything truly revolutionary. Instead of offering a novel concept of self, genome sequencing offers “updated” arrangements of old identity categories. The newer arrangements certainly create some interesting questions, but people have identified themselves through scientific and biological categories long before the “discovery” of genetics.
I’ll give one quick example. Just to shake it up, I’ll use an example where people found empowerment and validation through biological identity (for better or for worse). In the late Victorian period, sexologists formulated an evolutionary description of “homosexuality” and “sexual inversion.” These scientific and medical descriptions of “the homosexual,” complete with case studies, reached the masses through various books. Not long after, individuals replied to the sexologists (the most notable being Ellis, Krafft-Ebing, and Hirschfeld) via letters. These readers, in essence, were writing to tell the evolutionary scientists that they read the medical book and joyously decided to adopt the new identity as defined by the sexologist. For the first time, these people found a commonality (and a shared evolutionary identity) with others even though they did not know these other homosexuals in person.
When genetics overtook older evolutionary-biological categories, the biological homosexual identity didn’t disappear. Instead, this category eventually transferred into the hotly-contested Xq28 allele, also known as the gay gene. Before one jumps to say “of course the identities shifted,” I should point out that not all evolutionary identities survived the molecular genetic shift. For instance, poverty and class were almost completely abandoned as biological categories. However, the genetic category of homosexual (and, therefore, heterosexual) remains a bio-political group identity. Again, many individuals choose to identify with this newly-genetic identity, much like they did when it was an evolutionary identity around 1880.
I’m going to make a bit of a leap because I don’t want to make this post too long, so please bear with me. The adoption of genetic identities shows a dual aspect the image of the self. On one hand (one that is emphasized in white American culture), we have an internal source of the self. Identity is found within us somewhere, whether this is in our cells or within our psyches. On the other hand, we have the self that is external. Here, identity is found through social labels given to us by others. This happens in two ways: not only do we seek commonality with others, but others label us with or without our consent.
There is no way to avoid the Janus-faces of self. However, the two versions of self do not constitute an identity. Instead, identity is formed from the navigation between the external self and the internal self. Furthermore, genomic identity potentially changes both types of self. You are AT LEAST categorized by others when your sequence becomes public information. However, most of us would identify as Tay Sachs carriers if we were told that we were by a geneticist, so there is a great chance that genomic identity influences internal self as well.
Can this genetic information tell us everything about us? No. However, it does influence our identity in PROFOUND ways (the final “P” to genetic identity, to paraphrase an American GINA congressional hearing). Not only does the information tells us about ourselves, it also tells others about our children and our ancestors in a different way than evolutionary identities did in 1880. Like any type of identity, sometimes this can lead to discrimination. Other times, this can lead to empowerment and new ways of relating to others.
Perhaps we should talk about who establishes these identities (for instance, why is there only one gay gene? Could there not be multiple types of homosexuality?), scientific authority, genetic information confidentiality, and how we use these new identities to establish our conception of the state (or the citizen). Whether we like it or not, genetic identities are here to stay so long as we accept the genetic “central dogma.” Our genomes (and our bodies) give us a new form of self, one that’s, in some way, beyond the self we can create in our own psyches; our genotypes don’t change the same way our desires and fantasies do. I believe that genomic identity is more than a happ-ME-ness fad. Genomic identities are just one chapter in a historical and deeply-rooted human phenomenon.
The comparison to astrology (M.Norton Wise above) is apt, I think. We can expect as in astrology a prevailing social tendency to over-interpret the data, which is barely interpretable at all right now. In any event, what we can expect by way of interpretation will be the kind of information we learn by looking up the characteristics of people who were born under the same sign as ourselves. Except for the odd telltale single-gene-disease mutation (for cystic fibrosis, for example) that you might have the misfortune of carrying, all we can reasonably expect for awhile at least from a genome reading are vague generalities. Instead of “You, Aries, like to…” x,y and z, “excel at” a,b and c and “attract people who” t, u and v, just substitute “AAC” or other haplotype for “Aries” and there you have a likely format. I think the analogy also shows that we don’t identify with data. A self-identified Aries identifies with a common characterization of what an Aries is like or what it means to be an Aries. Such an Aries does not identify (in anything like the same sense of the word “identify”) with a particular orientation of the sun against the constellations or with a calendar date. Unlike the meanings of being born under various astrological signs, though, the meanings of the vastly more various possible human haplotypes have yet to be constructed. Facebook does allow people who share beliefs to find each other and commune quickly, and monopoly broadcasters can universalize an idea quickly, so maybe haplotype meanings will cohere quickly, creating dozens or hundreds of additional labels or tags to append to ourselves and to others. Note they’ll still have to compete for currency against other available labels, like your DSM diagnosis and maybe soon your MRI or encephalographic type. If you can pick a lot of them, it’s hardly an identity. Perhaps the outcome will be a widespread allowance that we are all mosaic and not simply a this or a that. That would be a step forward.
Last summer, I went to visit my family in Warsaw, Poland for the first time in fourteen years. Having grown up in the United States with my mother and siblings, the idea of having aunts, uncles, cousins and grandparents was alien to me. Yet when I stepped into the home of my aunt and uncle, they went from being strangers to family in the time it takes for a large teary-eyed man to gather his niece in a strong embrace.
What does it mean to perceive a group of people as strangers one moment, and as family the next? What does such a shift in perspective require? It requires reconceptualizing oneself to some degree. One must move from seeing oneself as a student on summer break, a tourist amidst strangers, to a niece, a cousin, a granddaughter.
In my case, it was not the discovery of an essential property of the self that brought about this change in perspective. It was the social practices of an extended family, and an invitation to participate. Of course, something served as a launching point for this social interaction (genetic relatedness or—more likely—a common family history), but it was the participation in the group that brought about the reconceptualization.
One may undergo a similar shift in perspective upon discovering that there is a group of people in the world (or in one’s local community) with a genetic propensity similar to one’s own. What would unite this group is not a belief that all of its members will develop the phenotype in question, but rather the more moderate idea that they have a genetic propensity in common. In other words, faith in determinism is not required for genetic information to affect the formation of biosocial groups, and it is the practices of such groups that are important in shaping one’s identity.
In 2005, a speech by Harvard President Larry Summers inspired outrage when he posited that the underrepresentation of women in science may be partly due to innate differences in ability. In the 1990s, a book by Herrnstein and Murray also caused controversy by positing a genetic contribution to intelligence differences across race. Could a widespread technology of the self, insofar as these technologies help people to understand themselves as individuals in terms of their relative innate abilities, shore up such simplistic and dangerous views of innateness and difference? Or might the opposite happen: contemporary stereotypical notions of group difference would be eroded as we generate the new categories of human that Ian Hacking describes. These are politically explosive questions, and ones that I raise because these technologies have the potential of reinforcing rote notions of genetic determinism: rote notions that reinforce the status quo. But there are other possibilities.
There is one thing these technologies do for sure: focus people’s attention on their genes. As people come to identify with their genetic codes, they may come to understand themselves in new ways in terms of their abilities (in addition to disease risks, etc). But there are two things I wish to assert about genetic propensities for ability. First, it is imperative that a genetic focus not turn our gaze away from the multiplicity of factors that lead to a trait like an ability. Second, genes for ability are derived from genetic similarities among groups of people already coded as having a particular ability; therefore, in a system where particular genes are correlated with abilities, there is no stable referent. So even if it turns out that a genetic association between being in a particular group and having some ability exists, the genetic code used was derived from similarities between people already coded for an ability within a complex web of multiple causes.
But as a geneticist recently reminded me, the connections between genes and traits such as behaviors and abilities are quite loose. So imagine everyone engaging with a technology of the self that includes education about the rich complexity of the role (and non-role) of genes in their lives, including being educated about what is not known. This could lead us all beyond rote understandings of genetics that underlie discriminatory essentialist views along traditional fractures (race, class, gender, sexuality). But this may require regulation, as it may not be in the interests of profit-making corporations offering these services to educate people about how their genes actually work.
Yet perhaps the disconnects that people will inevitably experience between their genetic codes and their abilities could foster deeper appreciation of complexity. Perhaps a person will learn that he or she has a genetic propensity for some skill which shores up their social position, or perhaps this person will learn that they have failed in light their genetic gifts. And even more interesting, perhaps many will learn that they have far outpaced the predictions for ability coded in their genes. Unfortunately, I fear that individuals in future generations may encounter knowledge about genetic ability at a young age, and this may become a self-fulfilling prophecy for some. But hopefully for many there will be stories of resistance. Nevertheless, widespread understanding of the complexities of genetics will be necessary in connection with these technologies of the self, or genetic determinism could become a more formidable force.
My hope is that more widespread personal genome sequencing could lead to greater recognition of the complex ways our genomes develop and interact with our environments to yield such varied persons. If these technologies help clarify that particular genotypes manifest so many divergent phenotypes, that will be a positive change. These developments could complicate or our too-common acceptance of genetic determinism and essentialism.
My concern is that the consumer demand for personal genome technologies is fueled by genetic determinism and essentialism which are now completely unconnected to the biological science from which these doctrines were initially derived. Perhaps no expert warnings (however articulated in the fine print of test results) will now curb the popular enthusiasm for knowing one’s true self that only Schrodinger’s “hereditary code-script” can promise.
We ought to ask to what extent geneticists and other experts can help remedy misconceptions that may exist about the deterministic aspects of nucleic acids, especially as private companies are encouraged to formulate more speculative categories and claims. Market pressures for personal genomic technologies likely do not align with biologically responsible claims. Also, we ought to consider whether European-style regulation will alleviate the troublesome aspects of these technologies, which, by training our attention on the genetic, could obfuscate other significant biological insights, and at worse replace other meaningful sources of our identities.
Hacking’s reply to comments is here.
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