How should we deal with the arrival of very common prenatal testing for a broad set of genetic characteristics?

What ELSI is new (article)This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Hank Greely, Stanford University.

Each year, about 60,000 pregnant women undergo prenatal genetic testing in the United States, out of more than 4.2 million live births. Within five years, new testing methods, made possible by the rise of cheap forms of genomic analysis, will be able to test cell-free fetal DNA from the pregnant woman’s blood. These tests, feasible as early as the fifth week of pregnancy, will require a simple 10 milliliter blood draw, avoiding the invasive procedures of amniocentesis or chorionic villi sampling, with their attendant high costs, discomfort, and miscarriage risks.

Cell-free fetal DNA testing will be able to reveal aneuoploidies, single gene diseases, broad disease risks, and some non-disease traits: certainly sex and probably skin, eye, and hair color; hair type; likely height; and male pattern baldness, among others. The price of this analysis should be $1000 or less. At that price, insurers will likely find this testing cost-effective for every pregnancy, not just high-risk pregnancies. Safe, early, comfortable, broad, and fully insured fetal genetic testing is likely to be used by far more than the current 1.5 percent of pregnant women – probably fifty to eighty percent. As a result, abortions for serious genetic conditions will increase substantially and children born with such conditions are likely to be concentrated in populations particularly opposed to genetic testing or abortion.

How should our society react? Should we encourage, discourage, or view as neutral this kind of testing? What kind of quality regulation should we impose on this testing? Should we – can we – impose other, non-quality regulation, aimed either at preventing prospective parents from terminating pregnancies based on some genetic characteristics or at preventing testing (or communication of test results) for some kinds of genetic risks? We all will soon have to answer these questions, but we are only beginning to pose them.

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