No one has control over his or her genetics. Thus, it is wrong to deny employment or insurance coverage because someone's genes render them more susceptible to certain diseases, conditions or disorders.
That's precisely the intent of legislation that has passed the U.S. Senate and is now under consideration in the House. The bill, the Genetic Information Nondiscrimination Act, takes aim at genetic discrimination, providing a layer of protection to people with illnesses that have a genetic component.
The last decade has brought many promising genetic discoveries. Genetic markers can be used to determine whether offspring are genetically predisposed to certain disorders. Some people use the information to make lifestyle changes that can reduce their chances of developing the disease. Some women with family histories of breast cancer elect to have pre-emptive mastectomies.
Researchers say that in the coming years, genetic research will be used for personalized medicine — that treatments will be tailored to people with certain genetic characteristics. That area of medicine holds very exciting prospects.
However, the downside of genetic testing is that many people who should have access to this potentially life-saving information shun the tests for fear that health insurance companies will cancel their coverage or they will be deemed uninsurable. Nearly one-third of women offered genetic testing for breast cancer risks by the National Institutes of Health refuse, citing insurance concerns, according to a Los Angeles Times report.
That's tragic, because determining genetic risks can help health-care providers and patients prevent, diagnose and treat diseases.
People shouldn't have to make the choice between ongoing health-care coverage and tests that can detect risks and enable their providers to detect symptoms or recommend lifestyle changes that can prevent diseases or certain conditions.
The Genetic Information Nondiscrimination Act is particularly important for people who are self-employed or buy their own coverage. They do not have the same degree of federal protection as people in group health insurance plans when it comes to using genetic information to decide whether to extend coverage or to set premiums.
This legislation passed overwhelmingly in the Senate. Members of the House need to demonstrate a similar sensibility about this issue.