Thursday, December 08, 2005

Mooting the Disability Debate

Two recent articles discuss breakthroughs in Down syndrome research. The first, published several weeks ago in the New York Times, discusses a recently announced screening technique designed to detect fetuses with Down. The second, appearing Tuesday on the BBC’s website, describes a recent study that identifies a molecule associated with Down that may be a potential target for developing treatments for the syndrome.

Both articles hasten to point out that these new developments do not constitute anything like a cure for Down Syndrome. The piece in the Times goes much farther, discussing the ethical issues surrounding the provision of prenatal genetic testing for such conditions.
One issue that the article touches on, but doesn’t address in detail, is how we determine what traits or characteristics will be classified as “disabilities.” With respect to many conditions, of which Down is just one example, the application of the disability label is highly contested. One of the key concerns, then, is whether the development of targeted genetic screening will render these important debates moot.

How or why would this happen? The reasons are two-fold – one more obvious than the other. The obvious reason is that the very act of searching for and developing treatments, cures, and screens indicates that the condition is likely considered a disability. After all, there aren’t two many research labs actively pursuing a cure for musical ability.

The less obvious reason is that what some people consider a disability others would prefer to consider a normal human trait. Adjudication of this issue requires us to determine which characteristics are part of the normal range of diversity within the human population, and which constitute disabilities. Whether we choose to consider an individual with Down (or one who is deaf, or left-handed, or has poor eyesight) as disabled is a matter of definition and opinion, about which people can and do disagree (although not always reasonably).

What is not open for dispute is that, in the absence of societal support for a particular condition, typically in the form of resources and tolerance, any condition can become functionally disabling. To illustrate, let’s consider the trivial example, mentioned above, of impaired vision. Few would deny near- or far-sightedness as a form of physical disability. However, due to the presence of corrective lenses, ophthalmologists, etc., this condition is hardly disabling in any real sense for most members of our society.

Consider, however, what would happen if a genetic test was developed to screen out embryos likely to develop impaired eyesight later in life. Now, all of a sudden, a minor visual impairment has the potential to become a serious disability. As genetic screening reduces the number of individuals in the population with visual impairment, demand for vision correction technologies and services decreases, and may ultimately wither away due to numeric and economic considerations. This loss of support (discussed at some length in the NY Times piece) can help convert an inconsequential impairment into a socially constructed disability.

This particular example is, of course, both trivial and far-fetched. But it illustrates one of the underlying objections to genetic screening for conditions that are not unambiguously disabilities. A genetic screen, though ostensibly neutral, can potentially tip the balance and moot the debate about whether or not to classify a condition, Down syndrome for example, as a disability.

None of this is intended to suggest that genetic screens should not be developed or that, once developed and demonstrated to be accurate, they should not be employed. However, when using such techniques it is important that we are mindful that they possess the potential to produce results far beyond a simple positive or negative probabilistic test. Making this point clear, to those that offer as well as to those that make use of such tests, is fundamental to providing informed consent.


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