July 20, 2004

NYT: As Gene Test Menu Grows, Who Gets to Choose?

The New York Times has an article by Amy Harmon called "As Gene Test Menu Grows, Who Gets to Choose?" about genetic testing for offspring. A growing number of prospective parents want the choice--and they're right:
Ms. Coveler says she would not trade Benjamin, now a year old, for the world. But she is one of many people demanding to know why screening tests for certain genetic conditions, including deafness, mental retardation and breast cancer, are not being offered to them - even, in some cases, when they ask.

Too many health care providers, critics say, have not educated themselves about the genetic tests that could benefit their patients. Others, pressed for time, simply do not communicate what can be complex information. And some choose not to inform their patients of certain tests they have deemed inappropriate, in effect making a value judgment about abortion, disabilities and risk that patients say they have a right to make for themselves.

Some critics also blame the professional societies that set policy for specialists, which they say are reluctant to endorse scientifically valid tests for fear of exposing their members to lawsuits. As a result, advocates for patients say, the medical profession is failing to deliver the benefits of the genomic revolution to the public that financed it.

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