Preventing Genetic Discrimination

Currently, as many as nine pieces of proposed legislation in the U.S. Congress, plus many state initiatives, include provisions aimed at protecting us from genetic discrimination. Prompted by ethicists operating out of rights theory, these proposals invoke the principles of confidentiality and privacy. They argue that genetic testing should be voluntary and that the information contained in one’s genome be controlled by the patient. This “privacy defense” argument presumes that if information can be controlled, then the rights of the individual for employment, insurance, and medical care can be protected.

There are some grounds for believing  this approach will succeed. Title VII of the 1964 Civil Rights Act restricts preemployment questioning to work-related health conditions, and its paragraph 102.b.4 potentially protects coverage for the employee’s spouse and children. Current legislative proposals seem to favor privacy.

Nevertheless, it seems the privacy defense can, at best, be a mere stop-gap effort. In the long run, it will probably fail. Insurance carriers will press for legislation more fair to them, and eventually protection of privacy may slip. In addition, the existing state of computer linkage makes it difficult to prevent the movement of data from hospital to insurance carrier and to anyone else intent on finding out. In addition, one of the most important factors is the principle that genome information should not ultimately  be restricted. The more we know and the more who know, the better the health care planning can be. But this is contingent on whether we can have information without discrimination. The only way to obtain this is to restructure the employment-insurance health care relationship. The current structure seems to make it profitable for employers and insurance carriers to discriminate against individuals with certain genetic configurations—that is, it is in their best financial interest to limit or even deny health care. A restructuring seems called for so that it becomes profitable to deliver, not withhold, health care. To accomplish this the whole nation will have to become more egalitarian—that is, to think of the nation itself as a single community willing to care for its own constituents

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