When What We Know Outstrips What We Can Do

When What We Know Outstrips

What We Can Do

Written by Margaret R. McLean

Biotechnology and Health Care Ethics

Markkula Center for Applied Ethics.

When What We Know Outstrips What We Can Do

Very informative article written in the Spring of 1998 using a Huntington's Disease family as the basis for the article.

Excerpt:

"Stop pacing, Mom. It'll be all right." Meghan and her mother, Anne, fidget nervously in the waiting area of the genetic testing center.

"I need to have this test, Mom," Meghan continues. "I want to know if I'm going to wind up like Uncle Harry. I want to know the chances that my children will inherit Huntington's disease."

Meghan and her husband, Rick, want to start a family-a family untouched by Huntington's bizarre dances, frightening mood swings, and untimely death. "I'd rather not have children if it means sentencing them to a death like that," Meghan says.

Anne halts and faces her daughter. "I wish it wasn't this way, Meghan."

Anne's family has been haunted by Huntington's since anyone can remember; those who get it always die from it. Her brother Harry was just fine until his mid- 40sthen came the depression, the twitching arms.

"I would do anything to spare you," Anne says. "But, Meghan, please understand that I don't want to be tested. 'So far, so good' is my philosophy. I'm only 42. I want to live my life and make my decisions without a Huntington's diagnosis hanging over my head."

"But Mom, you're not the one being tested; I am."

Falling into the chair next to her daughter, Anne pleads, "Don't you see? If your test is positive, it means I've got the gene, too. And I don't want to know. I have a right not to know, don't I?"

Anne and Meghan face a tentative future. Members of families with a history of Huntington's disease have long known that this neurological disorder-with its loss of motor control, personality changes, depression, dementia, and death-might eventually be their fate.