Privacy

Medical records can be misused unless they are coded to hide patients' identifying information. If a patient has been treated for a particular disease and his or her medical records are not held in confidence, a company selling products related to the disease could directly contact the patient. Although this may not pose a problem in most cases, in some situations, such as if a patient was treated for a sexually transmitted disease, the patient might not want family members or others with access to his or her mail to know about the treatment. There are also concerns about the potential for discrimination arising from the use of these data in determining a patient's eligibility for employment, housing, or other services.

In the United States, legislation has been passed to deal with issues surrounding genetic and health information. The Health Insurance Portability and Accountability Act of 1996 was enacted to address privacy issues related to personal health information. This act requires that health care providers, health plans, and health care clearinghouses implement certain privacy standards regarding health information.

Although the act protects "all medical records and other individually identifiable health information," there is some concern that it does not provide sufficient protection for the privacy of genetic information. In 2001 additional protection was proposed in at least three bills in the U.S. Congress. These bills were intended to prohibit discrimination on the basis of genetic information with respect to health insurance. The area of privacy and genetic information continues to develop, with additional legislation on the federal and state levels certain to arise.

European countries have addressed issues of privacy and personal information in a Directive on Data Protection. This directive, which became effective in October 1998, established a comprehensive legal regime in the European Union that governs the collection and use of personal information.

Privacy questions abound when it comes to genetic testing to determine if a person carries particular genes. One concern is that patients affected by genetic diseases, as well as those potentially at risk of disease, could be discriminated against. Another is that genetic information could also lead to discrimination against the children of those directly affected by a genetic disease.