Mar 18, 2007

Facing Life With a Lethal Gene

The test, the counselor said, had come back positive.
Ms. Moser was 23. It had taken her months to convince the clinic at NewYork-Presbyterian Hospital/Columbia University Medical Center in Manhattan that she wanted, at such a young age, to find out whether she carried the gene for Huntington’s disease.
Huntington’s, the incurable brain disorder that possessed her grandfather’s body and ravaged his mind for three decades, typically strikes in middle age. But most young adults who know the disease runs in their family have avoided the DNA test that can tell whether they will get it, preferring the torture — and hope — of not knowing.
Ms. Moser is part of a vanguard of people at risk for Huntington’s who are choosing to learn early what their future holds. Facing their genetic heritage, they say, will help them decide how to live their lives.

Breakthroughs in genetic testing offer insight into whether individuals will suffer from a growing number of diseases. These tests can tell us whether a fetus in the womb carries disease-causing genetic defects, such as cystic fibrosis. Should parents use such a test to decide on abortion? Tests can be used to confirm a suspected diagnosis of genetically-related disease such as Alzheimer's. Should it be used to predict whether relatives of a person with the disease is also predisposed to it? Tests can also predict whether an individual will develop a disease later in life, such as Huntington's.Should it be available to young people, even children, when the onset of the disease will only occur much later in life? And because of the complex relationship among genes and with the environment, even when a test predicts a genetic disease there is no way to predict how serious its effects will be.
Should parents use such a test to decide on abortion?
Should it be used to predict whether relatives of a person with a disease is also predisposed to it?
Should it be available to young people, even children, when the onset of the disease will only occur much later in life?
These are but a few of the questions that need answering. Where do you stand? What do you think?

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