A sensitive treatment of a fascinating subject, this two-hour film profiles patients, doctors and family members as it examines the deeply personal and ethical issues surrounding new breakthroughs in genetic testing. Learning one's predisposition for certain diseases rarely puts one's mind at rest, reveals producer/director/writer Noel Schwerin, a Nova veteran.
If you could look into the future to find out the likelihood of contracting a potentially fatal disease, would you?
Once limited to the hypothetical realm, such questions are asked with increasing regularity in the world of real science. Advances in genetic testing mean that individuals with family histories of cancer, Alzheimer's and heart disease can do more than wonder about their fates. Rather than explain the science behind the story, producer Noel Schwerin turns the camera on the emotional decision-making process of the people involved.
"What was always compelling to me was what it (genetics) means to the way people live their lives," Schwerin said. "What does it mean about our futures? We asked that rhetorically at the end of most Nova shows, but I wanted to start a project with those questions." It took the producer several years to find three families willing to be profiled in A Question of Genes.
The film's success is due largely to the subjects' willingness, Schwerin said. "Documentaries about scientific issues tend to ask experts what they think. The only people who can be experts on their experiences are the people who have gone through the testing themselves. Among the stories are the California couple who learn through genetic testing that their unborn twins will both have cystic fibrosis. (They decide to have the babies.)
There are also two sisters with a family history of cancer: One learns she doesn't have the cancer gene, the other that she does.
The reactions of each aren't what one might expect. The healthy woman experiences "tremendous survivor's guilt" that keeps her from sharing the good news with many people, Schwerin said.
"People tend to think of medical decisions as purely rational," Schwerin explains. "But when you're talking about your family, emotions are not irrelevant to life decisions."
PROBING RISKS AND REWARDS OF GENETIC TESTING
Thomas H. Maugh II, Medical Writer
Virtually every week, this newspaper prints a story about the discovery of a gene that causes another inherited disease. An immediate benefit of the identification, each story will say, is that it makes possible testing to identify individuals who carry the gene and are thus at risk of developing the disorder.fact, desirable, and what impact it will have on the patient. Discovering that you or your children are almost certain to develop breast cancer or cystic fibrosis or Alzheimer's disease can have a devastating effect. Discovering you do not have it while the rest of your family does, in contrast, can also have a powerful effect, triggering survivor's guilt and other problems.
"A Question of Genes: Inherited Risks," a two-hour special appearing tonight on PBS, explores these agonizing questions through the medium of several families that are presented with the option of undergoing such testing.
Polly Liss, for example, lost all three of her sisters to breast cancer. She herself had both breasts removed as a prophylactic measure. Although she is in her 60s, she agreed to undergo a new testing program to determine whether she carries one of the two genes known to predispose toward breast and ovarian cancer.
Her son David also agrees to the test, wanting to learn about potential risks for his own daughters. But Polly's daughter Sherri refuses. If she is found to have the genes, she thinks, she will have difficulty obtaining health insurance, thereby imperiling her own children.she is left with the realization that both h er agonizing and her double mastectomy were unnecessary. Perhaps more important, however, she also endures guilt similar to that encountered by the survivors of German death camps in World War II: Why did my sisters die and I survived? Why will their daughters face death while mine are spared?
"We hear a lot about the promise of genetics, but rarely about the moral dilemmas it creates for people," says producer Noel Schwerin. "This program asks as many questions as it answers, but beginning the dialogue about genetics is vital."