Key Concepts

• Genetic testing will expand quickly and soon, adding highly targeted data to people’s medical records. As those records go electronic, outsiders will find it increasingly easy to peruse an individual’s health information.
• Able to uncover private details, health and life insurers could deny coverage to someone with a complex medical condition, and employers could fire or refuse to hire the person to avoid burdening the company health plan.
• Existing laws offer weak protection at best; legislation is needed to give individuals more control over their own data, to limit unauthorized disclosures by others and to penalize wrongdoers.

In years gone by, if colon cancer ran in your family all you could do was wait and worry about whether you might get it, too. Today a genetic test can determine whether you have inherited a greater-than-average risk of the disease and so could benefit from preventive care. The more doctors know about your genes, the better able they are to prevent, treat or cure illnesses.

Excitement about such prospects surrounded the start of the Human Genome Project in 1990. But the enthusiasm was soon tempered by widespread concern about the need to protect the privacy of a person’s genetic information. Simple tests that could readily reveal an individual’s genetic endowment could also readily cause embarrassment or stigma. Furthermore, insurers could deny people health coverage or raise the premiums they have to pay. And employers seeing the results could deny people jobs or fire them. At the same time, scientists and public health officials recognized that the potential to improve health care based on genetic studies across large populations could never be achieved if legions of people refused to participate out of fear that the results could be misused.

   
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