John Hawks discusses how messy the abuse of genetic testing results could get:
Imagine a custody battle, in which the father hires a private investigator to get a mother's genome. With two variants that yield a 15 percent higher risk of schizophrenia, will the mother's genetic risk be held against her? Or think of corporate boards, looking for a way to dismiss a CEO without paying that golden parachute. Could a genetic test result showing a higher risk for early Alzheimer's give them a reason to invoke a "health" clause in the contract?
Or what about, Hawks asks, "a sitting President, whose public genome data show a newfound association with a personality disorder?"
I once wrote that I thought there should be no regulations against getting yourself genotyped, but that the medical interpretation of that genotype by companies like 23andMe should be governed by the same standards as any other diagnostic test. That won't prevent scenarios like this from happening, where personal genome data is obtained and made public involuntarily. These scenarios would be bad enough if we started making such judgments even if our risk estimates were very good. What makes them potentially so much worse is that we don't have great risk estimates yet.
As Hawks points out (and as I wrote about here), the studies our risk predictions are based on focus on the effects of single gene variants, and don't do a good job of taking into account the impact of combinations of genetic variants. You may have one variant of one gene associated with a risk for heart disease, but the effects of that variant may be modified by variants in other genes that reduce your risk for heart disease. If we don't know how these different variants act in combination, we can't make accurate risk assessments on an individual level, even though we may be able to talk about average effects of a genetic variant in a population.
Our society doesn't always do a great job of keeping junk science out of major decisions in policy or law, and the wide public availability of personalized genetic information has the potential for producing disruptive junk science on a massive scale. This may call for extremely strict privacy laws, with hefty penalties for 'genomic eavesdropping', and tight regulation on how such information can be used in court. Even with such regulations, I predict that we'll see a Supreme Court case on genetic privacy within the next 15 years.
