The United States Can Learn from Europe’s Genetic Privacy Laws
A commentary on Europe’s genetic privacy laws in Wednesday’s Journal of the American Medical Association reiterates how far we lag behind Europe in terms of regulating genetic information and how much we can learn from the holes in their policies. (Michael Rugnetta wrote recently here on Science Progress about British insurers moving voluntarily to protect genetic privacy.) Ine Van Hoyweghen and Klasien Horstman point out that Belgium enacted the first genetic privacy legislation in 1990, and the rest of Europe was quick to follow. The problems that arise in European law, and that may arise here in the United States as well, are problems of definition: as we learn more about our genome, more and more of our health can be linked back to our DNA, which leaves insurance and care providers in the position of having to determine what tests and information are considered “genetic.” Van Hoyweghen and Horstman also note that while those with genetic risk factors are protected, insurance costs for groups with nongenetic or lifestyle risk factors have sharply increased, creating a coverage disparity between groups who are similarly situated.
We are still learning to what extent our genomes influence our health and we still have lots of gaps to fill in our coverage of genetic privacy. GINA was an important first step, and we are fortunate to be able to draw on European experience to guide future legislation.
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