Privacy

As more diagnostic, screening, and monitoring tests based on genetic data become available, privacy issues are becoming increasingly important. There are concerns that the results of genetic tests showing a person to be pre-disposed to a particular disease will fall into the hands of commercial medical suppliers or financial, legal, insurance, or government agencies, all of which control important products or services.

The confidentiality of medical information is of paramount importance to most consumers and patients. However, maintaining confidentiality ismade difficult by the use of large medical record databases and other electronically stored records, to which any number of individuals may have access.

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 Portabilityand 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.

Many similar concerns arise in the context of criminal law, including the potential uses of DNA databases. There are issues relating to the collection and maintenance of DNA samples or information from everyone who is arrested, whether or not they are convicted. There are issues relating to the collection and maintenance of DNA samples and/or information collected from individuals upon arrest. For example, the DNA and/or information obtained from certain individuals may be saved, even if the person is not convicted. Indeed, prosecutors have issued many arrest warrants in old cases based solely on stored DNA data. These warrants have resulted in successful prosecutions, but the question being asked in the courts is whether it is legal to base arrests solely on "cold hit identification" using DNA evidence.

In contrast to medically oriented genetic tests, the DNA tests used in criminal law generally do not test for the presence or absence of a particular gene, since the noncoding regions of a person's DNA can be distinguished much more easily from the DNA of other individuals. Different individuals have different DNA sequences in these noncoding regions because there is no evolutionary penalty for mutations in such regions, as they are not used to produce proteins.

This helps provide the high level of discrimination required in criminal cases, enabling a jury to say that, based in part on the DNA evidence, an accused person is guilty beyond a reasonable doubt. An important caveat however, and one not always understood by prosecutors or juries, concerns what a DNA match actually proves. While nonmatching DNA proves innocence,matching DNA does not prove guilt. In any large city, there will be at least a handful of people with similar DNA profiles. Even if DNA is found to be matching, a conviction must rely on other evidence, such as other physical evidence or eyewitness testimony.

Although the use of DNA data can assist investigations, there is an element of "big brother is watching" in its use. There are also concerns that by instituting wide programs of DNA collection based on arrests, not necessarily convictions, the practice will expand to other areas. For example, providing a DNA sample could be required, at some point, for obtaining a driver's license, marriage license, or social security number. There is also a question of what entities, including police departments, governmental agencies, employers, financial institutions, credit reporting businesses, and insurance carriers, would have access to the data. There is concern that by having genetic information recorded in a criminal record database, citizens would be subject to a wide variety of discrimination.

Disease, Genetics Of; Dna Profiling; Genetic Discrimination; Genetic Testing; Genetic Testing: Ethical Issues; Human Disease Genes, Identification Of; Legal Issues.

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