Privacy Issues in Biomedical and Clinical Research by Board on Biology

Author:Board on Biology
Language: eng
Format: epub
Tags: Health and Medicine : Policy, Reviews and Evaluations
Publisher: NATIONAL ACADEMY PRESS
Published: 1998-11-10T00:00:00+00:00

What, if Anything, Should the Federal Government Do?

While the immediate impetus for the workshop was the worry that ill-considered federal legislation could harm genetic research, participants at the meeting were not necessarily asking that the federal government stay out of the issue altogether. Indeed, as Anne Phelps of the Senate Committee on Labor and Human Relations noted, "A lot of [Congress’s involvement] has been at the request of the research community and the genetics community. They came to Congress and said, ’You need to act.’" But act how? Much of the discussion at the workshop centered on the question of what the federal role should be.

Some participants, particularly Paul Billings, thought that the federal government should play little if any role, given current conditions, in the areas of genetic privacy and genetic discrimination in health insurance. Because health insurance is primarily regulated at the state level, Billings argued, the individual states have more experience and are better equipped to legislate. "I would suggest that federal legislation should only be directed at reducing the stranglehold that the ERISA exemption has had on the states’ ability to legislate in areas of genetic discrimination, and to ERISA, the Employees Retirement Income Security Act of 1974, imposed federal regulation on insurance plans offered by companies to their employees and thus preempted much of what states can do to oversee such medical coverage. Congress should return to the states much of their traditional ability to regulate health insurance, including issues of genetic discrimination, Billings said. Otherwise, it should stay out of the area for now, "except to rectify gross inequities of state legislation."

Billings said that if states were given this power they would be unlikely to pass legislation that would harm research. There has been no negative impact arising from the genetic discrimination legislation that was passed in California on the conduct of clinical or basic science in that state."

Other researchers disagreed, however. David Foster of Genzyme Corporation in Cambridge, Massachusetts, described how the Massachusetts legislature was close to passing a law that would have crippled certain types of research in the state. "They have been at this [writing genetic discrimination legislation] for two years, and now that some of our key research folks, like Massachusetts General Hospital, are starting to review legislation which is actually ready for passage, they have discovered that it would shut us down. When the research folks look at this and think it through, they are dumb founded. They cannot believe that state legislatures would pass certain things that would really prohibit a lot of the research that we take for granted today."

As observed by Eleanor Kerr of SmithKline Beecham, "it is a mixed bag out there." California legislators may have done their homework and produced a reasonable law, but other legislatures have not. "The danger here is that without federal legislation states are racing ahead. You saw a list of ten bills in Congress. There are literally hundreds on the state level. I think about twenty states have now passed statutes.

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