Some children may come from a gene pool that enables them to play the violin at age four and to compose symphonies at ten. We search for genetic markers of these exceptional desirable abilities as well. The possibility of genes that protect against diseases is also spurring genetic hunts. For example, Alzheimer’s disease shows up rarely or not at all among certain Aboriginal American communities. Something genetic may confer immunity to, or delay, the advance of senility. If so, finding this protection factor will be of great importance. A certain ambivalence, or ambiguity, also surrounds the genetic imperative. Consider the well-publicised searches for a gay gene (typically in men) and an alcoholism gene. Those who hope for a gay gene believe that such a discovery will prove beyond all doubt that homosexuality is not a disease or disability. Such contradictory pairings remind us that we are still in the adolescent phase of thinking about biosociality. Ashoka dwells on the risks of preventive pharmacogenetics, disease genetics, theatre as a metaphor for chosen identities, and identity politics, in the second and final part of his two-part narrative. Here’s an in-depth research into genes and identity, in the weekly column, exclusively for Different Truths.
So we have plenty of things to worry about. I myself am more than perturbed about pharmaceutical companies marketing risk-oriented medications based on genetic treasure hunts. It is also troubling that preventive pharmacogenetics will be developed mostly for new drugs, whose patent writs will continue for a good time into the future. Preventive pharmacogenetics? I did not invent the noun. In the future, we will have the ability to screen patients for bad side effects of a drug, by picking out their genetic markers. Such ‘tailoring,’ as it tends to be called, will become standard for future drugs, but not for the large and useful pharmacopoeia of older medicines, many of which, like all potent chemicals, have awful unintended effects on some people. In this section, I have only been labouring the obvious: the intersection of medical, social, personal, and profit-making interests ensures that the avalanche of genetic information available about individuals and populations has only begun.
We need informed debate from many points of view. Though we must also give blanket opposition its proper weight in the spectrum of dissent, it tends to stay of its nature long behind the cusp of what is actually and irreversibly happening. The genetic imperative is the drive to find genetic markers in humans. It commands out of its own intrinsic strength, but it fits in neatly with our ‘risk society.’ Ulrich Beck was the first to use this term to describe the industrialised world. Beck was initially concerned with risks that we ourselves create by innovation, and its military and industrial applications, but the concept now applies also to risks that are not primarily of our own making, such as the risk of inherited disease or disability.
Disease Genetics Track Risks
Disease genetics tends to track risks, not causes. There have certainly been unequivocal triumphs in discovering the latter, such as Jérôme Lejeune’s 1959 identification of the association between an extra chromosome 21 and Down’s syndrome. Almost every foetus with an extra chromosome 21 will develop into a child with Down’s syndrome, if it is allowed to live. This is so probable that it is unnatural to speak of risk here. The foetus is bound to develop in that way because of a programming malfunction – or so we imagine in our computer driven era.
There we have a true success story of the genetic imperative in medicine. The genetic defect is now quite often identified with the syndrome, and this has been made part of French semantics, where the syndrome is usually just called trisomie. (This has turned out to be a less than exact label, for triplings of certain other chromosomes produce other birth defects or disabilities, so one must now say trisomie vingt-et- un.) There are other success stories, for which the teams that discovered them are justly honoured. But the medical-research community is now fully convinced that most further correlations between genetic information and manifest illness or disability will be ‘multifactorial.’ Genetic markers will not be causes but risk factors.
Though ‘risk’ implies danger, and danger implies harm, not every genetic search is a search for harm. Some children may come from a gene pool that enables them to play the violin at age four and to compose symphonies at ten. We search for genetic markers of these exceptional desirable abilities as well. The possibility of genes that protect against diseases is also spurring genetic hunts. For example, Alzheimer’s disease shows up rarely or not at all among certain Aboriginal American communities. Something genetic may confer immunity to, or delay, the advance of senility. If so, finding this protection factor will be of great importance. A certain ambivalence, or ambiguity, also surrounds the genetic imperative.
Consider the well-publicised searches for a gay gene (typically in men) and an alcoholism gene. Those who hope for an alcoholism gene believe that the discovery will prove beyond all doubt that alcoholism is a disease or, at any rate, an innate disability. Those who hope for a gay gene believe that such a discovery will prove beyond all doubt that homosexuality is not a disease or disability. Such contradictory pairings remind us that we are still in the adolescent phase of thinking about biosociality.
After taking these ambiguities into account, though, we still cannot ignore this central phenomenon: the genetic imperative ends its natural home in the risk society. Even a relatively abstract search, the genome project, was funded because just identifying genes was going to help locate risk factors for disease or disability. The dream was eventually to eliminate the markers and thus remove that source of risk. But instead of genetic medicine we got risk factors. We shall undoubtedly continue to be bombarded with hype about discovering the Alzheimer’s gene or the schizophrenia gene–with the implication that this ‘gene’ causes this disease or that disease–but we should expect mostly indicators of risk.
Though cases where genes can predict the occurrence of a disease with virtual certainty, like trisomy 21, are rare, the probabilities can nevertheless be great, as in the early-onset forms of diseases such as breast cancer, colonorectal cancer, or Alzheimer’s. Indeed, early-onset forms seem to show most clearly a direct causal connection between genetic markers and the appearance of the disease at a definite stage in the body’s aging process. This may give us real hope in the case of schizophrenia. One form of schizophrenia, first labelled dementia praecox, is triggered specifically by maturity, surfacing mostly in males around age seventeen or eighteen. Early-onset dementia, or so it was first described.
Alzheimer’s Disease and Autism
Scientists are devoting an immense amount of research to finding genetic antecedents of two other disorders: Alzheimer’s disease and autism. Who knows how all these diseases are entangled? Alzheimer’s is a type of dementia produced by aging; one kind of schizophrenia is early-onset dementia; and autism was first identified as a kind of infantile schizophrenia (the noun ‘autism’ was originally the name of a symptom of adult schizophrenics). Maybe those early guesses will have a genetic resurrection. Certainly autistic children and late-adolescent-onset schizophrenics are mostly male, suggesting a sex linked locus for any genetic carrier.
Yet, in spite of all these tempting connections, what we should expect to see is not a gene for any of these disorders but many genes on numerous sites that increase the probability of the disorder appearing at some point. Some of these sites may contribute to several disorders, while each disorder may require in addition its own unique sites. Or maybe the genetic conjectures just will not pan out. In any case, we anticipate not determinism but risk factors, or worse, multifactorial risk. But for simplicity’s sake, I’ll refer to the gene or genes that heighten one’s chances of getting a particular disorder–whether single or multiple–as a ‘risk factor.’
A set of people with a risk factor is a biological, not social, group. But people at risk for the same disease will clump together for mutual support, joint advocacy, and, in many cases, activism. The emergence of these advocacy groups will be one of the most important topics for any history of medicine in late twentieth-century America.
Most advocacy groups in existence today are for people who are afflicted with a disease or disability, or have family members or friends who suffer from it. These groups often have names like ‘Friends of Schizophrenia.’ They are, of course, biosocial, that is, societies formed around a biological condition. And many are effective. Today, autism is on the front burner thanks to the intense advocacy of groups going back to the 1960’s on behalf of children with developmental difficulties. Parents, understandably, make the fiercest activists, but they were greatly aided by the fact that President Kennedy had a sister with special needs. We owe the ubiquity of special-needs services and programs in American schools to that concatenation of events. Until now, however, these groups have had little or no dealings with genetics, except to urge, and occasionally contribute financially to, the search for the genetic origins of their diseases. Now we step into the future. We will increasingly be able to identify families that are genetically at risk for various disorders. The advocacy groups will then consist not of those who are ill but of those who are at risk of becoming ill.
Such groups bring something rather new to the discussion of identity, a concept which Mediterranean, and then European, philosophers have debated for as long as they have waxed philosophical. Built into their conception of identity was the idea that one’s essential features, not accidental characteristics, should constitute one’s identity. Those words ‘essential’ and ‘accidental’ reek of high metaphysics. The metaphysics has gone underground, at least among English-language secular philosophers, ever since John Locke trashed essences over three centuries ago. Locke gave accounts of identity that are splendidly free of any waffle about essences. But those who wish to talk identities ignore the surreptitious idea of essence at their peril. And that is where genetic markers make a decisive difference.
Because no matter how much intellectuals, both humanists and scientists, may inveigh against it, people can hardly avoid thinking of their genetic inheritance as part of what constitutes them, as part of who they are, as their essence. But now comes a curious turn. We all carry an enormous mix of inheritance, and the greater the extent to which a person’s recent forebears came from geographically disparate parts of the globe, the greater the possibilities for picking out and identifying with this or that distinct strand.
Up until now, this has been possible only for those whose physiognomy is sufficiently ambiguous. Life experiences exploiting ambiguity have been turned into art by novelists, most recently by Philip Roth, in The Human Stain. A boy in a black family, who had rather olive skin, chose to identify as Jewish, and thereby hangs the tale. That is a pregenetic tale–but it emphatically revolves around one recent fruit of biotechnology. Biotech and biopharma are going to be integral to many future novels that are true-to-life in the prosperous parts of the world. Some mentions will be so banal that no one will notice. In this case, the septuagenarian hero is disgraced when he falls in love with a woman in her thirties who works as a janitor. He chooses products from the biopharmaceutical industry to rejuvenate himself, to be a younger man than his undrugged body teaches. Pfizer’s Viagra turns a once-essential property, the natural limitations of age, into what scholastic philosophers would have called an accident.
Metaphor for Chosen Identities
The novelist Philip Roth and the sociologist Erving Goffman share the idea of theatre as a metaphor for chosen identities. Drama is more generous than society. Roth seems to imply at the end of the book that his protagonist can reject any of the identities he has chosen or that have been thrust upon him. He becomes truly free in a sense that the existentialists of half a century ago would have warmed to. I suspect Goffman, a child of that time, who knew Sartre’s work quite well, would reply that you cannot exist without a roster of acted identities, or else you are taken for mad. And madness itself is not a role that can be played any old how.
In every generation, there are quite firm rules about how you should behave when you are crazy. Soon we shall have novels about people who send in their saliva to a gene testing company and learn that their ancestry is more tinctured than they thought – or more pure than they feared. What will be the real-life effect on the self-consciousness of individuals, of how they think of themselves, of who they take themselves to be? In the near future it is as likely to be denial as anything else.
The parable of Thomas Jefferson’s daughter speaks for itself: only those who want to listen to their genes will do so. Perhaps one of the first public demonstrations will be political. Imagine a very white-looking Brazilian capitalist turned politician. He wishes to declare himself a man of the people. He sends off his spit and back comes the desired answer: he is more African than Portuguese, with a convenient dollop of Amerindian thrown in. His party blazons these facts across the nation. The opposition repeats to no effect that this hardly distinguishes him from anyone else in Brazil, that he is nothing but a playboy from São Paulo whose grandparents were smart enough to become very rich. We are experiencing and will continue to experience another feature of this phenomenon.
A common objection to the most stringent kind of identity politics is that every human being has many ‘identities.’ Identity politics was particularly urged on minorities wishing to obtain their due and not only repudiate but also overcome past oppression. A friend of mine, dedicated to a number of struggles, furnishes a poignant example of being a multiple minority. Yes, she is black and a woman. More importantly, she is a Haitian, born and educated in Montreal. She was a minority even among Haitian Montréalais, for she had received an ‘excellent’ education at a bourgeois school and did not speak Creole at home. Then she was a francophone working in anglophone Toronto. Among Toronto Caribbeans, she had a hard time as a Haitian by a population that traces its roots mostly from Jamaica and Trinidad. Every single minority status demanded struggle, with allies on one front often not understanding her actions on another.
So much is a familiar story. It also happens that my friend was afflicted, at about age thirty, by a very nasty, little understood, and almost certainly inherited aging disorder, prevalent only among Haitians. It causes very rapid deterioration of the muscles, and not a great deal is known about it. And we are not likely to learn more about it for the simple reason that no one is willing to spend any money on a rare ailment that afflicts a small and mostly poor population. (That could change: New York, Paris, and Montreal have many well-to do Haitian emigrés; Canada about a decade ago a Haitian-Canadian Governor-General.) Here we have a rather startling example of what may prove to be a new genetic identity, being at risk genetically for this disorder. My friend could decide that the pressing battle for her today is not the previous battles, for which she had many allies, but advocacy for those at risk for this disease.
My example may gain a specious plausibility from the fact that the disease appears to affect a subset of an already identifiable group, namely people of Haitian descent. But it is merely a dramatic way to illustrate the formation of new biosocial identities around risk factors, where those who have the factor are not markedly different in any other way. This is not an individual affair: those at risk often create organizations. And while their initial motivation might be advocacy or support, increasingly we shall have ‘making up people’ with a vengeance. That is, new kinds of people will come into being, people characterized by a certain risk factor, who band together to create a social group that evolves its own collective characteristics.
Thus far we have considered biology as given. It is not. By now we take for granted the biotechnology of organ transplants. The ways in which we come to regard our body parts as interchangeable is producing a curious reversal of much modern wisdom: body and mind are separating into their Cartesian habitats.In the old days, we used only to tattoo, pierce, and bind our body parts. These have been turned into new art forms, witness Orlan in Paris and the Australian performance artist Stelarc. They both use a lot of biotechnology, and their thoughts border on science. Sterlac, who favours extra ears, has lectured the surgeons at the Radcliffe Hospital in Oxford. The fate of people who want fewer appendages also seems grotesque. Yet real subcultures of individuals who are unhappy with their legs or other body parts exist. There are more biosocial groups on earth, Horatio, than are dreamt of in your philosophy.
Sex Change Operations
Sex is an aspect of biology about which there are various kinds of discontent. Likewise, gender. Transsexuals have completed or are undergoing sex change chemistry and surgery; transgendered people adopt the lifestyle of the opposite sex without a major use of chemicals or surgery. While stories of successful sex-change operations are well known, many misfortunes, unfortunately go unpublicised. But these misfortunes are one of the reasons that transgendered people are becoming more common and transsexuals less prominent. There are many variations on these two themes, of which transhumanism is more remarkable.
Francis Fukuyama was one of ten intellectuals whom Foreign Policy had asked which current idea would be most harmful to the world as we know it. He imaginatively answered, “Transhumanism.” He was referring to the idea that the human race should use all available technology to improve itself, an idea that has sparked a viable movement institutionalised in many organisations around the world. Fukuyama was his usual prescient self in picking something that few soothsayers would have noticed. Why is it so dangerous? Fukuyama answered in the truest, and best, conservative way. He gave Burkian reasons that one associate with von Hayek, Popper, or Oakeshott (or Fukuyama): don’t make big changes; if you must change, change slowly and be sure you know what you are doing.
In a talk to a group of students in New York a few years ago, I quoted Fukuyama, and then asked the people in the room, “What do you think is the most dangerous idea around today?” I received the expected answers from people my age: genetically modified food and so forth. Then a young woman said very quietly, “The idea that we should not evolve.” I would have said she was an impeccably groomed woman of about thirty, of Chinese ancestry, her accent standard well-educated. I ought to have been prepared, for I had given a more highbrow talk with a similar theme in Philadelphia a few weeks earlier. There, a young black man asked me very strong direct questions in standard educated upper class English. I was later told he was an officer in the local transhumanist society.
As the discussion proceeded with various members of the audience, the penny dropped more slowly than it should have. Half the population in this audience already knew all about transhumanism. A fair number of them had chosen their identities–in some cases, perhaps only for the day. I, the bland permissive liberal, became more and more uncomfortable. I realised how much I depend on knowing to whom I am speaking. I had no reason to think that the respondent was female, thirty, or Chinese. Yet, I wanted to know ‘who’ she was–and the same for a number of others. But they were rejecting that question. Refusing to choose a society or a biology, they were in essence, denying in every gesture the very concept of a biosocial identity.
©Ashoka Jahnavi Prasad
Photos from the internet.
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