Medical Genetics Is Not Eugenics

The Chronicle of Higher Education has just published a pair of interesting articles on eugenics, reproductive technologies, medical genetics, and human enhancement (sadly, you need a subscription to access them).

Both are quite interesting and worth reading but I found Ruth Cowan’s position, unambiguously enunciated in her title, “Medical Genetics Is Not Eugenics” somewhat one-dimensional and at times naïve, especially when it comes to her characterization of both technology and the integrity of the medical sciences that we should essentially trust because it is “science” with “good intentions.”

I think the article is important for it reminds us that that we can’t make simple comparisons whereby we collapse past with present, eugenics with medical genetics. It does analytically pay, of course, to pay attention to differences. They matter and often matter for the reasons she highlights, which I will mention in a moment. But to declare the matter closed is far too dangerous in a period when we are still struggling to understand the ethical dilemmas at the heart of many new genetic enterprises and looking to the past, for possible ethical or conceptual connections, may in fact make these more clear.

Here are a few of her basic claims:

“There is, to start with, no meaningful historical connection between the enterprise once called eugenics and the enterprise now called medical genetics.”

“Technological systems are built to achieve certain goals; those goals get hard-wired, as it were, into the components of the system. The chief goal of the eugenicists, “improvement of the race,” was never one of the goals of genetic screening — and it did not become one, even after genomic research had identified the locations of dozens of disease-causing mutations.”

“From the very beginning, the founders of medical genetics — people like Neel, Fritz Fuchs, Michael Kaback, and Robert Guthrie — viewed their basic project as the relief of human suffering, not improvement of the race. Relief of suffering might, in their view, also improve the health of races or populations or societies, but improving the health and well-being of individuals was always their primary goal.”

While I agree with her basic premise—eugenics in the past is not some carbon copy of medical genetics/genetic testing today—there are important reasons to critically engage with current forms of genetic testing through the lens of eugenics in the past. But if we are to take her claim to its logical conclusion, then we should not even bother with this critical exercise; and if we were to simply categorize these two endeavors as radically distinct and unrelated, we would lose an opportunity to cultivate a valuable and critical perspective about the ways in which genetic testing may be replicating some older eugenics logics and biases.

Even if, as she rightly states that genetic testing is oriented primarily toward easing human suffering, genetic testing is still entangled with fraught ethical questions about what types of life we value, what is acceptable human life, and what is not—the very sorts of questions central to eugenics. Much of her argument is based also on the idea that we can trust the good-intentions of real scientific practitioners (the medical geneticists of today), as well as the purposeful design of technology. However, scientific intentions and purposeful design of technology never have fully determined the social life, use, and impact of science or technology, a central insight and mantra of her own historical field that she seems to overlook.

I am sure Antonio Egaz Moniz who invented the lobotomy had all the best intentions in the world and wanted to relieve the suffering of his patients, but with some historical perspective, we can see how good intentions to ease suffering do not necessarily or automatically translate into being morally right. In fact, those good intentions sometimes get in the way of seeing the real harm being done. Today, psychiatric survivors compare being placed on a cocktail of psychiatric drugs as being akin to a chemical lobotomy. Surely, there are limits to this comparison, and many of them make this claim and still take the drugs. But surely there is a value in this comparison. There is now evidence that being on these cocktails is also harmful to the brain and thus, the past comes creeping into our present in ways that should make us uncomfortable so that we can reassess the practices of today.

And technologies often escape, in positive and negative ways, the so-called “hard-wiring of goals” she speaks of. Because technologies and their use are always situated and marshaled in a much wider political and cultural field, and are only delivered though social mechanisms (in the case of genetic testing, for example, the technology is delivered by genetic counselors who convey a certain idea of disability when counsellings on genetics as Rayna Rapp’s work has keenly shown), I am equally skeptical of being comforted by the idea these reproductive technologies are OK, just because they were designed with a certain purpose (and not another in mind). They have a social life and we need to understands it total social life and use and the wider cultural values that bring them to life.

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7 thoughts on “Medical Genetics Is Not Eugenics

  1. Thanks for this excellent post Biella.

    Surely, too, to ‘do’ science without engaging critical faculties about what one is doing and its relation to society—and to simply ‘trust’ in science’s good intentions (as if science in itself could have any intentions at all)—is to labotomize science.

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  3. Gazzaniga, in the Ethical Brain, has a similar optimism about the proper use of the technology.

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  5. I mostly agree that medical genetics as practiced today is not eugenics BUT I would strongly disagree with the premise that there is no meaningful historical connection between the two. Just to mention a few examples of clear connections. (1) Frederick Osborn, a founder of and leader in the American Eugenics Society began to argue that the goals of eugenics could be better achieved by convincing people that it was in their best interests rather than forcing them. He began this in the 1940s but this quote is from 1956:

    “People simply are not willing to accept the idea that the genetic base on which their character was formed is inferior and should not be repeated in the next generation…. [It] is surely possible to build a system of voluntary unconscious selection. But the reasons advanced must be generally acceptable reasons. Let’s stop telling anyone that they have a generally inferior genetic quality, for they will never agree. Let’s base our proposals on the desirability of having children born in homes where they will get affectionate and responsible care, and perhaps our proposals will be accepted.”

    Sheldon Reed, generally recognized as the father of genetic counseling and the man to coined the term presented the idea for “genetic counseling” in 1947 to the board of the Dight Institute which was openly in an advocacy agency for eugenics. The institute was founded and funded by Charles Freemont Dight who was an avid eugenicist, who among other things wrote a letter to Hitler praising his work in eugenics. Here in Canada, Professor Margaret Thompson, who served on the Alberta Eugenics Board and ordered forced sterilizations, became a leading figure in Genetic Counseling and received the Order of Canada for her work.
    So, while I believe that most contemporary genetic counselors are not secretly trying to accomplish eugenic agendae, I also think it is silly to say that there is no meaningful historical connection.

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