Moderator Beth Rubin of Dechert, LLP, led a panel discussion with (center) Benjamin Berkman of the National Human Genome Project, and Michael Eastman (right) with the U.S. Chamber of Commerce.
A Preemptive Approach to Bioethics
The passage and signing of new legislation is cause for celebration by its backers. Photos are taken, ceremonial pens are passed around and congratulations are in order.
Then comes the actual implementation of the new law. Often, that’s when the problems start.
One current example might be the Genetic Information Nondiscrimination Act (GINA) signed into law by President Bush in 2008 after 13 years of debate in Congress. The law’s aim is simple: to protect Americans against discrimination based on their genetic information when it comes to health insurance and employment.
How it has worked so far was a chief focus of “The Current State of Bioethics in America,” a half-day symposium at the Columbus School of Law sponsored by CUA’s Journal of Contemporary Health Law and Policy on Nov. 11, 2009.
The first of the two morning panels offered a broad overview of some of the recent legislative and judicial developments in the field. The second panel focused its attention on GINA.
“It’s a law passed to solve a problem that didn’t yet exist,” in the opinion of Ben Berkman, a lawyer and public health expert with the National Human Genome Project, a part of NIH. Berkman emphasized that he was speaking only for himself, not his agency, when he stated that the law was unclear in too many critical areas.
For example, no one argues that health insurance companies have the legal right and obligation to collect some information about the customers they insure. But who is to draw the line between gathering legitimate health history information, as opposed to now off-limits genetic information? It has fallen upon doctors’ offices to be the gatekeepers of personal medical privacy, and they generally do not feel up to the task of discerning the fine points of the law, said Berkman.
“There’s quite a bit of anxiety about this provision of the legislation,” he said.
Many of Berkman’s points were echoed by Michael Eastman, executive director of labor law policy for the U.S. Chamber of Commerce. Also speaking for himself, Eastman called GINA unique in that it was written to deal with a theoretical civil rights problem, not an actual one. In his view, the law was passed in response to fear that personal medical information could be used against people.
But its vagueness in certain areas, such as a clear definition of what constitutes the “manifestation” of a disease, may create unintended confusion for all. Eastman predicts that in the future, many more lawsuits will be brought against employers by workers who believe they have been unfairly denied medical coverage.