Panel Discusses Importance, Ethics of Genetic Privacy

Panelists explored the legal and ethical frameworks of genetic privacy in the second of a series of discussions on the Human Genome Project last night at Harvard Law School (HLS).

The series--sponsored by the Harvard Health Caucus--seeks to explore the social implications of the Human Genome Project.

"Without protection [of genetic privacy], the whole process of care disintegrates," said Charles A. Welch, a panelist who is vice president of the Massachusetts Medical Society.

Many of the panelists advocated greater legal protection for individual genetic information.

A.G. Breitenstein, a nationally recognized expert on data privacy and security, said that people do not currently have sufficient legal control over their own genetic data.

"Patients have been shut out of making any property claims," she said.

Mark A. Rothstein, director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine, said that employers should be limited in the amount information they have access to.

"Don't allow employers to weasel their way into collecting data during the hiring process," he said. "There should be a focus on access, not just use [of the data]."

Welch said one reason that access to genetic data should be restricted is because of the incentives for third parties to procure an individual's medical record.

He said that the risk rating insurance system--in which an individual's insurance plan depends on his or her level of medical risk--creates an incentive for insurance companies to access medical records.

"We need much better protection against inappropriate access to medical records," he said.

But Breitenstein said that it is difficult to keep genetic information private.

"The boundaries of your physical body or cellular structure have no integrity," she said.

People shed genetic data constantly on such things as hairbrushes and door handles, Breitenstein said.

Breitenstein and panelist Allan T. Bombard said that genetic data should not be treated separately from a patient's traditional medical record.

"Genetics shouldn't be separated. It's part of medicine. It's part of medical records," Bombard said.

Audience member Sarah T. Evans, a Harvard Medical School student, said she appreciated the diversity of the panel but worried that clear remedies to the problem were not given.

"Everyone agreed that there is some sort of a problem," she said. "I don't think anyone offered a really good solution, but they all recognized the need for discussion and education about it."

The Harvard Health Caucus, created in 1999, is an interdisciplinary think tank created to discuss health policy.

The next discussion in the series on the Human Genome Project, to be held March 7, is entitled "The HGP, the Patient-Doctor Relationship and Translating Advances in Genomics into Better Health."

--Staff writer William M. Rasmussen can be reached at wrasmuss@fas.harvard.edu.