Preview of PBS Show on Genetic Testing
Raises Hard Questions of Ethics, Practicality

What if someone could access your deepest secrets and use them against you? That's what a panel of experts discussed recently at AAAS after they had viewed segments from two PBS documentaries written, produced, and directed by Noel Schwerin.

Bloodlines, which will air on PBS this June 10, is a follow-up to Schwerin's award-winning video, A Question of Genes. Both films explore the lives of people who have been directly involved with genetic testing.

The segment of Bloodlines shown at the program focuses on a company that conducted genetic testing on employees without their knowledge or consent. Although not proven, some employees believed the company wanted to weed out employees who were predisposed to a job-related health problem. Among these employees was railroad worker Gary Avary, who had been diagnosed with Carpal Tunnel Syndrome, an enlargement of the tendons in the wrist. The condition is often associated with repetitive work-related activities, such as typing, or running a jackhammer.

After his diagnosis, his employer, Burlington Northern Santa Fe (BNSF), asked for seven vials of blood for "routine lab work." Avary's wife, a nurse, dug for more information and was eventually told that BNSF wanted blood samples in order to conduct genetic tests. Avary refused to comply.

The second documentary segment, taken from A Question of Genes. features Polly Liss, a woman who lost all three of her sisters to breast cancer and, as a precautionary measure, underwent a prophylactic double mastectomy. Liss took this drastic measure prior to the availability of a genetic test that could identify markers for some types of breast cancer.

Liss's daughter, Sherri Liss-Ritter, on the other hand, chose not to be tested for fear of jeopardizing her family's access to health insurance.

The panel, moderated by editor-in-chief of Science Donald Kennedy and comprised of Noel Schwerin (the producer), Barbara Bowles Biesecker (a genetic counselor and Director of the JHU/NHGRI Genetic Counseling Training Program ), Polly Liss and Paul Steven Miller (Commissioner of the federal Equal Employment Opportunity Commission), considered the complex issues that Schwerin's documentaries raise.

Referring to Sherri Liss-Ritter's trepidations about getting genetically tested for the mutant breast cancer gene, Barbara Bowles agreed that the test results could have become a liability. "Once you know you have a genetic predisposition, you have to be honest [with health insurance companies] or else you commit fraud," she said.

Miller, of the EEOC, lamented the lack of legislation to protect an individuals' privacy. "There is a gap in public policy trying to catch up with science," he said. He called obtaining a person's consent, "the bedrock principle" of genetic testing, adding that the railroad's failure to do so was at the heart of the outcry against its actions.

"These are intensely private choices," said Miller. "I don't want the government or insurance companies or employers telling me I have to know something I don't want to know — especially if I have a genetic marker for something like Huntington's Disease or Alzheimer's, (with) no therapeutic treatment for it."

As reported in Bloodlines, eventually the EEOC took up Avary's case, along with that of other co-workers, and sued the railroad, under the Americans with Disabilities Act. In May 2002, the parties settled for $2.2 million, split among the 36 employees involved in the case. Avary received both monetary compensation and occupational leave, but since the court never ruled on the legality of the issue, the question of genetic testing of unwitting employees remains unresolved.

The segment on Polly Liss's battle with breast cancer explored the fear at the heart of the debate over genetic testing. How might it be used to benefit people at risk, while maintaining their need for privacy?

Once a test for the breast cancer gene became available, Polly Liss discovers that she is negative for the "bad" gene. Her children confide that this has brought them peace of mind. However, this news comes after Polly had already had her breasts removed.

"I still feel like I made the right decision," she said.

Bloodlines will air on PBS on June 10, 2003 (check local listings). It will feature the BNSF segment among other scenarios, including that of a baby with five "parents," none of whom have legal standing as parents; a patent application for a theoretical creature that would be genetically part-human and part-chimpanzee; and the question of a baby's parentage in a same-sex relationship.

—Carol Hoy

21 May 2003