Should health insurers be able to use genetic information?

The results of genetic tests should be passed on to insurance companies to allow them to assess the health risks of potential customers, a professor of bioethics says.

 

Prof Soren Holm, from Cardiff University Law School, argues that genetic information is no more "sensitive or private" than other information about a person's health, including cholesterol levels and body mass index, which insurers can use to help them to set premiums. Professor Holm said that the information used to make these calculations was no less private than genetic test results.

 

"If we allow insurers to obtain some kinds of health information, such as body mass index, cholesterol concentration, or results of a physical examination, we no longer have any principled reasons for excluding genetic information. It is not inherently more specific, predictive, sensitive or private than other kinds of health information. It is true that many so-called genetic risk factors are not well validated, but the same is true of other risk factors measured by non-genetic means."

 

The professor appears unaware of the worldwide move to legislate to stop insurers using any genetic information in deciding price, terms or acceptance.

 

Other experts point out that allowing insurers to use genetic information is very dangerous. They add that a positive test for a "disease" gene does not mean illness is certain. There are now dozens of genetic "markers" for common serious diseases such as cancer and heart disease.

 

Scientists claim to have found 10 new genes linked to seven of the most common diseases, including heart disease, bipolar disorder and rheumatoid arthritis. The Wellcome Trust recently announced that its own research had pinpointed genetic variants linked to depression, Crohn's disease, high blood pressure, rheumatoid arthritis and diabetes.

 

However, having the relevant gene or genes may only slightly increase a person's overall risk of developing that disease at some point in their lifetime, and a positive test does not mean that the illness is certain.

 

Richard Ashcroft, a biomedical ethicist from Queen Mary, University of London, says that insurers might use the information for "irrational discrimination. It is important to note how genetic information can be misunderstood, or its importance overestimated, and therefore used in discriminatory ways that would not be justified on sound actuarial grounds."

 

He gives the example of the BRCA1 gene in breast cancer, which actually makes little difference to the life expectancy of the woman. "A naive insurance salesperson might think she represented a poor risk for life insurance," he says. This example is very relevant, as the insurance trade body has twice tried to get these cancer gene tests exempted from the current ban that stops insurers using such information. The glare of publicity has twice stopped such attempts, and the trade body now glibly asserts that it has no plans to change things.

 

There is currently a moratorium until 2011 on the right of companies to ask for disclosure of all but one genetic test. People who test positive for the gene which causes Huntington's Disease are 100% certain to develop this disabling and ultimately fatal disease, and insurers have the right to ask for results to be revealed to them.

 

Those who fear that insurers could misuse genetic test information point to the recent problems of cancer sufferers and older travellers in getting cover at a reasonable price. They also add that for decades, motor and home insurers have “redlined" certain inner city postal codes, either refusing to quote or only offering prices too high for the less well off citizens who live there to afford cover.

 

Health charities worry that greater openness could lead to "a genetic underclass", with people identified at risk of disease facing higher insurance premiums and becoming afraid to take tests for fear of what it could do to insurance prices.

 

Several European countries have introduced laws banning insurers from using predictive genetic test results to decide premiums.

 

Dr Helen Wallace, director of GeneWatch UK, says: " There should be legislation to prevent the insurance industry from refusing someone insurance, or charging a higher premium on the basis of a predictive genetic test."

 

In the US, the Genetic Information and Non-discrimination Act (Gina) has been passed by the House of Representatives and will go before the Senate later this year.

 

The act would prohibit insurers from requesting or using genetic information when establishing premiums and prevent employers from using such information when hiring or promoting individuals.

 

Scientists like Professor Holm, and the repeated behind the scenes attempts by the ABI to add to the number of tests that insurers can take into account, add pressure for the voluntary ban to be replaced by law.

 

Insurers who feel that the government would not make such a law only have to look at the upcoming smoking ban. There, tired of arguments on what pubs and clubs could be exempt, a confused and irritated government went for a simple total ban. With the average consumer unable to comprehend why some tests are allowed but not others, and science now making huge inroads into genetic testing and inheritance, government could opt for a new law which stops insurers using or asking about predictive genetic tests or any other genetic information on individuals.