Experts: Genetic data should not be treated differently than general medical inf
June 4, 1999 2 minutes read
Experts: Genetic data should not be treated differently than general medical information
A Healthcare InfoTech Staff Report
Genetic experts at a recent conference issued a call to action to public policy makers to raise the bar in protecting all medical records to protect an individual’s privacy and guard against discrimination.
Hosted by St. Jude Children’s Research Hospital (Memphis, TN), the conference brought together a group of prominent ethicists and genetic experts who argued that information about human genetic make-up should be considered only as one contributing factor to our future health and should not be a barrier to employment.
"We should think of our genes not as a pre-determined medical destiny, but as an indicator of future obstacles we may encounter in our lives," said Thomas Murray, PhD, president of the Hastings Center (Garrison, NY), a member of the National Bioethics Advisory Commission and speaker and moderator of the conference’s first plenary session.
"Other factors like a predisposition toward skydiving or riding a motorcycle without a helmet are equally relevant in our health," Murray said.
Murray and his colleague, Mark Rothstein, JD, director of the Health Law and Policy Institute at the University of Houston, argued that laws created in many states to protect against genetic discrimination are ineffectual. They fail to work because employers have the legal right to obtain a wide variety of general medical information about their employees and prospective employees even under the Americans With Disabilities Act. "It doesn’t make sense for employers to classify an entire class of people as unemployable because of their genetic predisposition to certain illnesses," said Rothstein. "Why penalize them and their families before they become ill?"
Rothstein noted that genetics, and our perspective about it, will go through a process of evolution. As a parallel, he noted the development of fair hiring practices, such as outlawing the right to ask a woman if she was pregnant in a hiring interview. Thirty years ago, he said, a question such as this was common practice.
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