Genetic Research and the Law

Document Type

Contribution to Book

Publication Date


Publication Title

Stroke Genetics


Introduction: It has often been said that medicine advances and law restrains. Legal restraint may sometimes be necessary to protect the interests of society and to protect the welfare of the public. Lawmakers have been more reactive than proactive when it comes to regulating the use of genetic information. At times, the law has even been complicit in the abuse and misuse of genetic information. That is especially true during the eugenics movement. Hideo Kojima expressed the belief that access to genetic information can be beneficial if it is used wisely. Nonetheless, he acknowledged that the possession of genetic information may be abused. Kojima's theory that knowledge comes with benefits and burdens can be illustrated using breast cancer as an example.

Researchers have identified more than 1800 mutations in the BRCA1 gene. Many of those mutations are associated with an increased rise in breast cancer and other types of cancer. Those mutations are present in every cell in the human body and can be passed from one generation to the next. As a result, they are associated with cancers that cluster in families. However, not everyone who inherits a mutation in the BRAC1 gene will develop cancer. That fact does not offer solace to anyone who discovers that they have the mutations. For example, after Angelina Jolie was diagnosed with the BRAC1 gene, she chose to undergo surgery because her mother died at the age of fifty-six after an eight-year battle with ovarian cancer. Angelina used the knowledge about her genetic predisposition to take steps to remove the possibility that she would get cancer in the future. She benefited by having access to genetic information pertaining to the BRAC1 gene. She treated the surgery as an insurance policy against cancer. However, under some circumstances, someone might have tried to use that genetic information against Angelina. For example, if she was at the beginning of her career, she might have had a difficult time getting acting roles. . . Therefore, I will briefly discuss concerns with regards to genetic privacy, genetic discrimination and genetic commercialization. Legislators have enacted laws to address each of these issues. Nonetheless, lawmakers must work to ensure that people will be able to avail themselves of beneficial genetic testing without fearing that those test results will be used against them. Lawmakers must also act to prevent genetic information and material from being treated with the same level of respect as a piece of tangible personal property.


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