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.