Friday, March 17, 2006
Concepts of Therapy and Normal Human Experience
BY NICHOLAS AGAR

Just before Christmas last year I became a father. The three months now passed have been astonishing and exhausting in equal measure. But it's the time leading up to the birth of our son that got me thinking. Pregnancy in the early twenty first century is an occasion for much worrying. Doctors, midwives, and Web sites directed at expecting parents are quick to warn of threats to a child's wellbeing from eating too much of the wrong or too little of the right food, drinking the occasional gewürztraminer, doing too much or too little exercise, or just being older parents with slightly more mutated sperm and older eggs (my wife, a 35-year-old first time mum, is what is known medically as an "elderly primigravida").

I began to think about these warnings in the context of the distinction between therapy and enhancement familiar to those who follow the debate about human genetic engineering. Behind this distinction is the idea that therapies-those interventions motivated by curing or preventing disease-should be evaluated differently from interventions motivated by different desires, such as the desire to enhance traits. Philosophers who defend the distinction disagree on what this moral difference amounts to. Jürgen Habermas and Francis Fukuyama are among those who think gene therapies are morally acceptable, while genetic enhancements are not. Allen Buchanan, Dan Brock, Norman Daniels, and Daniel Wikler argue that the state is morally obliged to provide therapies, whereas no such obligation exists in the case of enhancements, some of which raise serious moral issues.

All this supposes that we have a workable account of disease. Pharmaceutical companies often seem to be assuming that something is a disease if and only if they sell a drug for it. We make our view of disease independent of the goals of Big Pharma and any other morally suspect agenda by appealing to objective biological facts. The consensus account in the philosophy of biology literature defines disease as a failure in biological functioning. We can be agnostic on the question of whether it is evolution or some intelligent designer who assigns biological functions-the key point is that the functions are independent of human interests. Pfizer doesn't get to invent female sexual dysfunction just because they would like to double the market for Viagra, nor do racists get to describe people whose skin color differs from their own as diseased just because that's the way they like to see things. They will have to demonstrate that the condition at issue corresponds with a departure from proper biological functioning-a demand that cannot be met by racists and looks a tough ask for Pfizer.

The therapy/enhancement distinction is invoked in the debate about human genetic engineering to set limits on the use of technology to shape our natures. I'm interested in a potential expansion of the domain of therapy abetted by the account of biological function and medical science's increasing power to detect departures from proper biological functioning.

For example, it has long been understood that women who drink during their pregnancies subject their children to the risk of fetal alcohol syndrome (FAS). FAS is now recognized as the most severe manifestation of a spectrum disorder called fetal alcohol spectrum disorder (FASD). Less severe versions of FASD are the alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD). Children with ARND lack the observable deformities associated with FAS, but they may have difficulty with memory, attention, or mathematical skills, perform poorly at school, and exhibit poor impulse control. Another example of a spectrum disorder is Autistic Spectrum Disorder (ASD), which encompasses Autistic Disorder as a more severe manifestation and Asperger's Syndrome as a milder one.

Spectrum disorders result from perfectly legitimate explorations of departures from proper biological functioning. As medical scientists develop more sensitive tools for detecting the effects on fetuses of alcohol, it's not surprising that they have identified departures from proper biological functioning milder than the gross deviations characteristic of FAS. In the future, there may be still better diagnostic tools enabling detection of departures from proper biological functioning corresponding with still milder manifestations of FASD. Perhaps they will expose departures from proper biological functioning that result from a couple of glasses of gewürztraminer a day. We can imagine that the effects of such departures may be limited to mild, occasional social awkwardness.

The moral implications of this scientifically abetted expansion of our disease categories are not obvious. For example, Buchanan et al. are quite explicit about the fact that some departures from proper biological functioning do not constitute disability. But the expansion still seems to me worrisome for those who want to make moral use of the therapy/enhancement distinction. It is potentially subversive of our conception of normal human experience. This conception allows for considerable variation. We recognize that some normal human beings are shy when others are socially bold, some are studious while others show little interest in lessons, and some are temperamentally placid while others are quick to anger. Spectrum disorders, in the context of the moral distinction between therapy and enhancement, may legitimize a certain kind of moral question. Some varieties of shyness and impulsiveness may become subject to a kind of moral scrutiny that other varieties are immune from.

What should we learn from this potential for scientific subversion of normal human experience? Here's a suggestion. The therapy/enhancement distinction shouldn't serve as a shortcut to answers to questions about the morality of intervening in the heterogeneous collection of influences that make human beings. Rather it should be recognized as short-circuiting this thinking. Notions that can be defended philosophically as capturing what matters in human lives, such as wellbeing and autonomy, are better starting points for this inquiry.

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