Fear Of Genetic Discrimination Fuelling Fall In DNA Testing

The number of Americans taking advantage of precautionary DNA testing appears to be going down, and the reason is thought to be fear of genetic discrimination from health insurers and employers.

Some health experts are so concerned that they have called for new legislation to protect US citizens from being discriminated against should their DNA test reveal health risks.

A bill which was passed by the House of Representatives last year and is yet to reach the Senate, the Genetic Information Nondiscrimination Act, would prohibit insurers from denying benefits or raising premiums as a results of genetic information, and it would probit employers from collecting or making use of genetic information for hiring, firing or compensation decisions.

The New York Times (NYT) on Sunday, 24th February, reported that Dr Francis S. Collins of the National Human Genome Research Institute said that Americans feared the reaction of their health insurers and employers if they discovered any negative results from their DNA test.

Collins told the NYT:

"It's pretty clear that the public is afraid of taking advantage of genetic testing."

"If that continues, the future of medicine that we would all like to see happen stands the chance of being dead on arrival," said Collins.

Another trend that could be fuelling this concern is the rising use of home test kits for DNA. You send a DNA sample to a private service that sends the results directly to you, without your doctor or anyone else knowing about it.

There are advantages and disadvantages to this. On the one hand, it gives people increasing control over their own medical data, but on the other hand, if people want help, but are frightened of the consequences, it could develop into a public health crisis with people denying themselves prompt care and not revealing conditions until symptoms have progressed.

The NYT reports experts saying that the benefits of the increasingly personalized approach to health care are being lost because Americans are too afraid of the potential consequences to take advantage of it. Doctors say people can make better informed decisions about their health if they know what risk factors they may have inherited, for instance breast cancer or colon cancer, but this advantage is lost if they fear the consequences will leave them worse off financially.

The NYT recounts the story of Ms Grove from Woodbury, Minnesota, who wanted to know if she was likely to develop a type of emphysema that results from alpha 1 antitrypsin deficiency. She knew it ran in her family, but she was afraid to ask her doctor to run a DNA test because the result would go on her medical records, and if it confirmed she had a high risk of the condition, it might affect her ability to get health insurance or threaten her job security or career prospects.

It costs over 100,000 dollars a year to treat this type of emphysema, and any pneumonia symptoms have to be treated promptly to avoid lung damage.

Ms Grove bought a home test kit and had the results sent to her directly. The result revealed she was likely to get the disease, and she still did not tell her doctor. She decided she would visit the clinic at the first sign of symptoms, but when she got there the nurse who examined her told her she just had a cold and did not need an X ray.

Ms Grove told the NYT she had an ongoing battle with herself whether to tell the doctors about the DNA result or wait until her condition got worse. In the end, she did reveal she had the condition and the clinic sent antibiotics to her home when they knew the reason. Ms Grove said something should be done to assure people they will not be discriminated against if they reveal genetic information so they do not find themselves caught in a bind like she was.

Some say this is all a case of fear exceeding reality, for as the NYT reports, while there are those pressing for anti-discriminatory legislation in this area, there are hardly any examples of it happening. A spokesman for America's Health Insurance Plans, who cover 200 million Americans, said it was more a case of "anecdotal fear" and that health insurers were "not interested in any way, shape or form in discriminating based on a genetic marker".

There are those who point to existing legislation such as the Americans with Disabilities Act which protects access to medical records by employers for example. But others suggest this would not stop employers screening out employees who were more likely to fall ill.

Whether discrimination actually occurs or not is not the issue, say some health experts, because the anxiety is what needs to be addressed and the sooner the legislation is put in place to protect citizens the better. Dr Kenneth Offit, chief of the clinical genetics service at the Memorial Sloan-Kettering Cancer Center in New York, said fear of genetic discrimination was the main reason people were cancelling appointments to find out if they had cancer risks:

"It's a tragedy that people are being scared off by this," said Offit, "we are dealing with potential lifesaving interventions".