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How Genetic Discrimination Works

Insuring DNA
Will research suffer if people are afraid to have their DNA tested?
Will research suffer if people are afraid to have their DNA tested?
Steve Russell/Toronto Star via Getty Images

The thing is, if insurers can nose around in your DNA, some scientists worry that fewer people will risk ever having their genes tested in the first place. Say a volunteer offers to be tested for research purposes but then, some years later, decides to take out a life insurance policy. Should the insurers have access to the data from those tests? Researchers fear that such a scenario could be a disincentive for potential research subjects [source: Collins].

Research aside, allowing insurers or other parties access to our genetic information might diminish enthusiasm for sequencing our spiral helixes. That, in turn, might damage our long-term health prospects. What if, for instance, we decide against genetic testing because we're worried our life insurance premium might be affected? It might be that we'll develop a heart disease that could have been predicted by testing. That's the argument advanced by the Council for Responsible Genetics (CRG).

CRG fears, among other things, that we might leap to uninformed conclusions about an individual's future health outcome based on poor information. As it stands, they argue, we don't really have a good understanding of the relationship between our genes and our health [source: Gruber].

Take this example: When a woman in her mid-40s had her DNA tested, the results indicated she had a higher likelihood than normal of developing schizophrenia. But when she consulted an expert, she learned that her particular genetic variation was relevant only for men from a specific island population. In her case, it had no meaning at all. Had an insurer been provided with this information without the benefit of an expert's insight, the woman's policy might have been adversely affected [source: Haidle].

CRG points out that because genetic disorders aren't infectious diseases, they occur at a steady rate. In other words, the incidence at which they occur should already be encoded in the actuarial tables used by insurers. Therefore, according to CRG, there should be no need for insurance companies to gain access to genetic information [source: CRG].

It appears that public opinion might be on the side of CRG. Already, many states have adopted laws banning different types of insurers from factoring genetic test results into their policies.

But all that said, and while there have been documented cases of genetic discrimination, when researchers look at the data, there's no evidence of widespread discrimination by insurers [source: Knoppers]. Not yet anyway.