Remarks by Susan Lindee

Remarks by Susan Lindee
Dinner Reflections

The Bleeding Edge

The biological sciences in the twentieth century have played a remarkable role in the negotiation of what should be understood as a metaphysical question: What kind of animal is the human animal? Supporters of the human genome project would commonly suggest in the early years that mapping human DNA would shed light on "what it means to be human" and many commentators have proposed that individual identity is "in the genes" where the real self resides. Questions about meaning and identity, of course, are never just about biology, and the history of the biological sciences demonstrates the point. Race, gender, class, ethnicity and intelligence have all been confidently made biological in ways that privileged the perspectives of those already in power, a phenomenon we can readily recognize in the past (think of nineteenth-century race science) but perhaps notice less in the present, where differences are seamlessly naturalized in perfect synchrony with the social order. As so many observers have suggested, we should at least be suspicious when "what it means to be human" seems to validate current practices and power imbalances.

I open with this observation because I want to suggest that as we think about the "new human biotechnologies," in Marcy Darnovsky's phrase, the points of synchronicity and quiet consensus are important and revealing. Individuals, confronted with the uninformative information of the genomic age, might find themselves standing "alone," making autonomous decisions, in an almost standardized frame that produces a uniformity of action, despite their own experience of isolation. The anthropologist Hugh Gusterson, in his interviews with those engaged in the production of nuclear weapons, found that scientists at Lawrence Livermore had privatized ethics, in a way that was consistent with the general norms of middle class culture in the United States. They expressed an emphasis on extraordinary isolation and independence in matters of choice, conscience and identity which nonetheless produced a remarkable uniformity of behavior, and belief. Their ethical choices were synchronized outcomes understood by those participating in them to be entirely privatized and solitary—a phenomenon that scholars have also documented in American perspectives on the experience of love, of religious salvation, and of therapy (Gusterson, 55).

In contemporary medical practice, individuals are confronted with a bewildering array of options and possibilities, the resolution of which all depends (or so it seems) on their individual choices, while at the same time these seemingly individualized choices reflect much broader social and institutional forces. The anguish of those granted the powers to make personal decisions about the application of the new biotechnologies—offered the options of the new worlds of biological control—may be both shared and solitary, a community's social product that is, by social consensus, understood and experienced as an independent crisis. The notion that we act alone in fields uninflected by history and social order is a luxury we cannot afford, and it is time to move the independent, personal, autonomous crisis out into the sun. I do not think it will be easy to map the consensus or to figure out how it functions. But I would argue that we should be interested in the points of agreement and isolation, and the ideas about both conformity and rugged individualism, that are shaping the experiences of individuals as they come to terms with networks of knowledge, technology and politics that vastly (necessarily? automatically) exceed their understanding and navigational skills—partly because they exceed the skills of everyone involved, including the scientists.

I have been working on a study of Cystic Fibrosis and on one of the patient listserves a participant described life on the "bleeding edge" of biomedical research. There are a lot of people on that edge in genomic medicine, and it seems to me that they are the point at which we as a community can and should come together. They are the people to whom we have a primary allegiance, as scholars, activists, and participants in public debate. They include populations all over the globe who have stakes in genomics and biotechnology that we cannot take lightly, and we must recognize and respect those stakes.

Those on the bleeding edge include anyone marked by race—by that category of biological order that has shaped so much human history—and those frozen and now long dead whose DNA can nonetheless be enrolled in the order-making regimes of science. They include those yet to be born—the ones we imagine whose future depends on the decisions we make now—and those never to be born, those chosen and unchosen in the networks of biological control. They include the donors, the surrogates, and the AI children in the world of the new reproductive technologies, and all the parents to be who can expect to be confronted with information and options that would have been unthinkable to their parents. They include those who will be told things that they cannot interpret—indeed, that the experts who speak to them cannot interpret—about SNPS and alleles and mutations and genes that may or may not cause suffering or disease or death. They include the consumers of genotainment who pay to be tested for ancestry, for health, for prediction. And most of all, they include those who have genetic diseases, whose families have genetic diseases, who are right at that most remarkable point, where their existence or non-existence is in negotiation, and their value and legitimacy as human is "in play," subject to a calculus of industrialized productivity and efficiency. What it means to be human is from some perspectives the central problem of contemporary biotechnology.

The legacy of twentieth century biology—of eugenics, the evolutionary synthesis, radiation risk, neonatal testing, cytogenetics, the genome project, and epigenetics—coalesces around the people on the bleeding edge. And we as a community must stand with them. That is our mandate and that is where we are allies, standing by those who must face the bewildering technical networks that engage so deeply with metaphysics.

None of us make decisions of any kind in autonomous glory, standing alone. Our communal efforts are an opportunity to make decisions together explicitly, to recognize the social stakes, and to come to terms with the consensual nature of the deep values, that permit us to move, act, choose.