British Diligence on Genetic Privacy for Life Insurance Policyholders

The British keep on moving ahead as the United States has just gained its footing on genetic nondiscrimination. In spite of the President Bush signing of the historic Genetic Information Nondiscrimination—which protects people from genetic discrimination in health insurance and employment—the United States still lags behind the United Kingdom in protecting people’s privacy from life insurance companies trying to access genetic testing results. Indeed, British insurers have adopted privacy protections voluntarily, and were not mandated to do so by the U.K. government. On June 13, the Association of British Insurers announced the renewal of its ban on insurance provider access to genetic testing results until 2014. According to an ABI press release, Stephen Haddrill, the groups’s director general said, “The moratorium has proved effective since its introduction in 2001 and can now continue.” The moratorium will be reviewed in 2011.

For now, British insurers may not require customers to disclose the results of genetic tests for holders of life insurance policies of up to £500,000, critical illness insurance of up to £300,000, and income protection insurance of up to £30,000 a year. Only 3 percent of insurance policies exceed these amounts, and even for policies outside those limits, only government-approved genetic tests may be incorporated into an insurance company’s calculus. So far, the only genetic condition for which the U.K. government’s Genetics and Insurance Committee has approved insurance premium adjustments is Huntington’s disease, for which there exists two tests that can determine with 100 percent certainty that a person will get the disease. According to the GAIC, insurance companies may only adjust life insurance policies of over £500,000 if a policyholder tests positive as a carrier for the Huntington’s gene. GAIC stipulates, however, that, “This decision does not mean that individuals will be asked to have a genetic test for Huntington’s Disease before obtaining insurance but, where individuals have already been tested as part of their medical care, then there is nothing to prevent insurance companies asking for that information.”

These policies from the U.K. government and private sector are keeping pace with the ever-changing area of genetic medicine, where new studies frequently propose links between genetic mutations and disorders.

But Mark Henderson, Science Editor of The Times of London, presents a dissenting view of genetic testing, arguing that allowing insurance to companies to make decisions based on the results of genetic testing is not unfair discrimination. The consensus against genetic discrimination is wrong, he writes: “It breaks with precedent, is unfair to businesses and many consumers, and imagines a threat to equality that is actually rather marginal, because of a misunderstanding of how DNA influences human health.” He argues that family history has been used for years to determine insurance premiums and genetic tests are a more accurate indicator for which family history is just a proxy. He also mentions that genetic testing might clear individuals of presumed genetic risks indicated by family history. For instance, if a person has one parent with Huntington’s, they would be considered 50 percent likely to develop the disease themselves, but a genetic test can tell them with certainty whether or not they actually have it.

But Henderson misses a key provision of the moratorium. According the ABI’s brochure, “You may choose to tell the insurer about the result of a predictive genetic test that is in your favour in order to override family history information. Insurers may take this voluntarily disclosed information into account. Each case will be assessed individually.”

Henderson also brings up evidence from a Duke University study that patients who test positive for an Alzheimer’s gene are more likely to take out long-term nursing care insurance. This knowledge of a genetic predisposition would give high-risk customers too much of an upper hand and would result in a rise in premiums for all those in the insurance pool just to take care of those who are high-risk. Finally, Henderson makes the point that genetic testing will eventually prove to be a poor basis for determining life insurance premiums because “there is no such thing as a perfect genome.” But the probability that a gene will express a disorder varies. In fact, variable probabilities in multiple genes can cancel each other out in terms of risk conferred to the carrier. It would not be wise for an insurance company to pick and choose genetic predispositions, since it would loose business that way. He concedes, however, that customers with particularly detrimental genetic predispositions, such as Huntington’s, should be taken care of by the government; especially because, for many such diseases, insurance companies don’t need to look at genes and can just raise premiums based on family history.

Most of these are excellent points, but again, Henderson neglects to consider that without the moratorium, insurance companies might jump the gun and start discriminating to gain a slight, if temporary, edge over competitors. Discrimination does not wait for the market to respond.

In the United States, insurers would do well to learn from their British counterparts, where trade associations make voluntary agreements and defer to the government on certain standards. The business community’s support for GINA indicates that there is some promise for such a move on our side of the pond. For example, companies such as IBM and Eli Lilly have added genetic non-discrimination to their employment policies. More importantly the trade group American Health Insurance Plans  did not “oppose the bill and agree[d] with its intent.” Nevertheless, with the ABI’s recurring reviews of the moratorium and the GAIC’s approval of genetic tests that are relevant enough for insurance purposes, the United Kingdom’s public and private sectors have proven to be exceptionally diligent in developing policy that keeps up with the ever-developing science of personal genomics.

Tags: genetics

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