Could the pending federal law prohibit an involuntary genetic test for the likes of Saddam Hussein? What about you or me? [Source: NYT 120303]

If there is an emerging genetic underclass, as bioethicist Dorothy Nelkin predicted in 1992, I could run for class president or class clown. Discrimination based on genetic information, and more significantly, discrimination based on perceptions of the meaning of genetic information, has been one of my central concerns ever since my genetic retina disease was diagnosed in 1973. I explored my own complex perspective on genetic identity, testing and research in Not This Pig.

So it is with guarded optimism that I greet the news that Congress finally passed the nation’s first legislation outlawing discrimination based on genetic information in employment and health care. Here is how Reuters/NYT reported the news yesterday:

A landmark bill to forbid discrimination against people whose genetic information shows a predisposition to certain illnesses won final U.S. congressional approval on Thursday.

Thirteen years after such legislation was first introduced, the House of Representatives passed the bill, 414-1, and sent it to President George W. Bush, who has promised to sign it into law. The Senate approved the bipartisan measure last week, 95-0.

The bill would bar health insurers from rejecting coverage or raising premiums for healthy people based on personal or familial genetic predisposition to develop a particular disease such as cancer, diabetes, heart ailments or many others.

In addition, it would prohibit employers, unions and employment agencies from using genetic information in hiring, firing, pay or promotion decisions. It would also forbid health insurers from compelling a person to take a genetic test.

Backers of the measure said people have declined genetic tests that could help lead to treatment of their ailments out of fear they could lose their jobs or insurance coverage.

The pending law isn’t comprehensive. It won’t end or prevent discrimination that we barely know how to recognize or understand. But in a nation governed by the rule of law (that’s the claim, at least), getting something in writing is the place to begin. The Civil Rights Act of 1964 didn’t end racial discrimination. The ADA didn’t end disability discrimination. For that matter, the Declaration of Independence didn’t make all Americans equal or free. Fulfilling the promises of such social contracts takes generations of struggle.

For the record, here is Dorothy Nelkin’s prescient observation about the future “genetic underclass.” It is the conclusion of her 1992 paper, “The Social Power of Genetic Information,” in The Code of Codes: Scientific and Social Issues in the Human Genome Project (edited by Daniel J. Kevles and Leroy Hood):

The rising tide of biological testing poses a broad range of challenges to standards of civil liberty-particularly the right of privacy to medical information. Numerous organizations, such as insurers and crime control agencies, may insist, with legal and policy support, that their access to medical information is a necessity and a right in view of their responsibilities. But their insistence is at the least debatable, given the exclusion, stigmatization, and discrimination that may ensue from the use and abuse of testing.

The growing availability of biological tests are also challenging standards of professional responsibility-particularly the obligations of confidentiality. As the biological and genetic underpinnings of disease are exposed, the role of the medical expert in nonclinical contexts becomes increasingly important. The company doctor, the school psychologist, the forensic psychiatrist — all professionals with conflicting interests-have assumed greater responsibility in their respective institutions. Sometimes called “double agents,” physicians in these ambiguous roles have dual loyalties-to the company they work for and to their patients. As the responsibilities of physicians in nonclinical settings increase, so too do dilemmas of professional ethics.

The most serious implication of biological testing is the risk of expanding the number of people who simply do not “fit in.” The refinement of food-product testing in the 1960s and 1970s allowed greater sensitivity in the detection of carcinogens, and the number of products defined as problematic greatly increased. In very similar ways, improved diagnostics are refining our capacity to identify deviations from the norm, and, as in the case of product testing, more precise tests are expanding the number of persons defined as diseased. Morever, by allowing anticipation of future problems that may not be symptomatically expressed for years, tests are, in effect, creating a new category of persons, the “pre-symptomatic ill.”

Even as tests improve in certainty and extend the range of what they can predict, questions of interpretation will remain. What degree of correlation will be necessary between existing markers and subsequent physical or behavioral manifestations before social action-such as exclusion from work, tracking in special education programs, or establishing competency to stand trial-may be taken? How do we balance the institutional need for economic stability against the rights of the individual? What is to be defined as normal or abnormal? And whose yardsticks should prevail? In all, we risk increasing the number of people defined as unemployable, uneducable, or uninsurable. We risk, in other words, creating a genetic underclass.

About the image: In the media-giddy hours after the announcement of Saddam Hussein’s capture in December 2003, the U.S. military provided conflicting explanations about what is happening here. An early account said the medic in latex gloves was collecting a DNA sample from inside Saddam’s cheek. Later accounts said it was a routine medical exam, implying humanitarian concern for the prisoner’s well-being. Read more about the implications in Blowback: Saddam’s DNA.