Genetic Discrimination

One ethical issue on the genetic horizon that has already begun to take focus is genetic discrimination.A possible scenario runs like this. In the next few years researchers will identify and locate most, if not all, genes in the human genome that either condition or in some cases cause disease. Already we know that the gene for Cystic Fibrosis is found on chromosome 7 and the gene for Huntington’s disease on chromosome 4. Alzheimer’s disease is probably due to a defective gene on chromosome 21, and certain incidences of colon cancer to one on chromosome 2. Disposition to muscular dystrophy, sickle-cell anemia, Tay-Sachs disease, certain cancers and numerous other diseases also have locatable genetic origins. More knowledge is yet to come. When it comes, it may be accompanied by an inexpensive method for testing the genome of each individual to see if he or she has any genes for any diseases. Screening for all genetic diseases may become routine for newborns, just as testing for phenylketonuria (PKU) has been since the 1960s. A person’s individual genome would become part of a data bank to which each of us, as well as our health care providers, would have future access. The advantage is clear:  medical care from birth to grave could be carefully planned to delay onset, appropriately treat, and perhaps even cure genetically based diseases.

This is an unlikely scenario, however. As good as it may sound, the specter of genetic discrimination may slow it down, if not retard it completely. Any grand plan to employ new genetic knowledge for preventive health care for Americans is likely to be impeded, if not blocked entirely, by the U.S. system of financing medical care through commercial insurance. The problem begins with insurability, and may end up in a form of discrimination that for genetic reasons prevents certain individuals from obtaining employment and, hence, medical services. Even with a government regulated program of access to basic health services, the need to purchase supplemental insurance to cover serious diseases makes many of us with certain genetic configurations vulnerable to discrimination.

Insurance works by sharing risk. When risk is uncertain to all, then all can be asked to contribute equally to the insurance pool. Premiums can be equalized. Once the genetic disorders of individuals become known, however, this could justify higher premiums for those demonstrating greater risk. The greater the risk, the higher the premium. Insurance may even be denied those whose genes predict extended or expensive medical treatment.

For three-quarters of Americans, medical insurance is tied to employment. Among the Fortune 500, twelve companies already report using genetic screening for employment purposes. Although screening in the past was justified initially for public health purposes, employers may increasingly be motivated to use screening to cut premium costs for the medical insurance they pay on behalf of employees. Underwriters already deny or limit coverage to some gene-related conditions such as sickle-cell anemia, atherosclerosis, Huntington’s disease, Down’s syndrome, and muscular dystrophy.This list could increase.. Between thirty to forty million persons in the United States currently live with insufficient or no medical coverage; and, despite its promises for a better life, HGP could inadvertently add a whole new class of poor and uninsured people.

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