Web Bit 14-1: Is Genetic Discrimination Unfair?
By Mary K. Miller

From the first stirrings of the Human Genome Project, scientists and policy makers recognized that there would be far-reaching social impacts from the research. One of the earliest issues raised was whether personal genetic information, like other medical records, would remain private. Many people worry that insurance companies, employers, or the government could use genetic information to discriminate against them. With the limited information available so far, this hasn't been an issue. But that's about to change.

As the functions of more and more human genes are deciphered, the potential for diagnostic testing is growing. While this could be a great advance for disease prevention and treatment, it also exposes people to potential discrimination. If genetic screening reveals that you are at risk for developing a disease (and probably everyone carries some potential disease risk in their genes), that information might affect whether you get a job, a promotion, or affordable medical and life insurance.

To help reassure the public, Congress recently passed a bill that prohibited companies from demanding or using genetic information to make decisions about employment or insurance eligibility. Nearly every state legislature has also regulated an insurer's access to genetic information.

Not surprisingly, insurance companies beg to differ. They say the bill will ruin their ability to stay in business if individuals have genetic information that they keep off their insurance applications. To be profitable, insurance executives say, their companies must have access to genetic information so they can discriminate between applicants.

Because of racial discrimination, the word "discrimination" sounds evil to us. But discrimination is not inherently bad or unfair. Discrimination is simply the act of making a clear distinction between individuals or groups.

Insurance companies discriminate when they group people according to risk. Twenty-year-old single men pay more for car insurance than 40-year-old married women. Young men may grumble about their high insurance premiums, but as a group they do get into more accidents and cost insurers more money than middle-aged women. On the other hand, life insurance is much cheaper for the young to buy health insurance than older people since young people have a lower risk of death.

But should health insurance companies be allowed to practice genetic risk classification and discrimination as auto insurance companies do? From a public policy standpoint, that's a scary proposition. If insurance companies are allowed to use genetic information to deny or restrict coverage, a lot of people could be left without adequate medical care.

For example, consider the current practice of withholding coverage for "pre-existing medical conditions." When insurance companies take on a new client, they will routinely exclude claims for existing or recent conditions such as pregnancy, injury, or illness. To further reduce the number of medical claims, an insurer might want to expand the definition of a pre-existing condition to include genetic predisposition to disease.

They might want, for instance, to test an insurance applicant for the presence of the BRCA1 gene mutation. Women who inherit this mutation have an 85 percent chance of developing breast cancer in their lifetimes. They may never develop cancer, but the presence of the mutation indicates a high risk. An insurance company might charge a higher premium or deny coverage altogether for breast cancer treatment for carriers of the BRCA1 gene, defining it as a pre-existing genetic condition.

Private medical insurance is currently based on the assumption that, aside from pre-existing conditions, all people are equal in terms of risk. Future ailments, such as heart disease, cancer, and other conditions, are unknown and therefore not taken into consideration. Genetic tests are far more precise than even family medical history in determining an applicant's potential for developing certain genetically linked diseases. Taken to its logical conclusion, this could mean that only people who are healthy, both in the present and in the future, are insurable. Genetic technology, more than any other medical advance, could revolutionize the way medical coverage and care is handled in this country. Indeed, many experts predict that the availability of genetic information will eventually prompt universal, government-funded health care in the United States.

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