Probing Risks and Rewards of Genetic Testing

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.

Left undiscussed, however, is the question of whether such testing is, in 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.

Polly’s story has a happy ending--sort of. She doesn’t have the genes. But she is left with the realization that both her 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.”

The program relies a little too much on talking heads, but it is gripping nonetheless.

* “A Question of Genes: Inherited Risks” airs 9-11 tonight on KCET-TV Channel 28.