Genetic Information: The Voices From The Fault Lines

Posted by Jessica Cussins April 15, 2014
Biopolitical Times

By now the rhetoric of genetic testing enthusiasts is well entrenched. Knowledge is power. Knowing your genome means knowing yourself. Sharing is caring (The Circle, anyone?).

But the fault lines are spreading. It turns out that a lot of genetic information is actually not very accurate, and that not everyone wants to know about their increased chances of dying young or that their future child will have a disability. Many people are realizing they do not wholly control their genetic data and should not expect privacy, and people are rightly suspicious that insurance companies will use their genetic data against them.

This emerging backlash bespeaks the urgency of improvements in the field. We need better science, better oversight, and better protection.

We should probably also stop assuming that everyone would want genetic testing if only they had the means and access.

The good news is that bringing these facts to light is powerful. The FDA no longer allows 23andMe to offer health services, at least until it proves its accuracy. The American College of Medical Genetics (ACMG) has had to reverse its earlier recommendation that required patients to learn about incidental genetic findings.

But warning letters from the FDA, voluntary guidelines, and the significant but limited Genetic Information Nondiscrimination Act are struggling to keep up with this fast-moving field.

As costs drop and plans for the use of genetic testing expand to embryos, fetuses, and newborns, it’s a powerful moment for reflection.

The policy of the future should not only be informed by clever marketing schemes of biotech firms, but also by the voices from the fault lines.

Previously on Biopolitical Times: