Abstract
Scientists conduct genetic research to find ways to prevent and to cure diseases caused by genetic predispositions. It is critically important that the research be conducted in a way that protects the privacy of the participants. The main way to achieve that goal is to take steps to ensure that no one discloses confidential genetic information. That task is made more difficult by the fact that researchers are turning to electronic databases to keep up with the massive amount of information they have to decipher. Privacy laws were put in place at a time when most medical information was kept on paper. In fact, numerous health care providers still keep their medical records in paper form. Unfortunately, privacy laws have not kept pace with the ingenuity of persons seeking to steal sensitive health information. Genetic privacy is crucial because if a person’s genetic information ends up in the wrong hands he or she may be the subject of genetic discrimination. Most genetic discrimination occurs in health and employment settings, the two places were persons are the most vulnerable. Congress has enacted statutes to protect people from being discriminated against because of their genetic predispositions. Nonetheless, the laws contain loopholes and weak enforcement mechanisms. In a profit-driven world, it is not surprising that there is now a market for genetic information and genetic materials. The law makes it clear that a person cannot sell a kidney or a liver; however, that person can sell blood or sperm. It is too early to tell whether genetic material will be treated like the former or the latter. But, we do know that as long as private companies are involved in genetic research commercialization will continue to occur.
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Lewis, B.C. (2017). Genetic Research and the Law. In: Sharma, P., Meschia, J. (eds) Stroke Genetics. Springer, Cham. https://doi.org/10.1007/978-3-319-56210-0_18
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