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Key Points

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  • A variety of complex ethical and legal issues are included under the broad heading of “genetic privacy.”

  • Federal laws exist to protect individual genetic privacy and protect against discrimination.

  • Emerging threats to genetic privacy include electronic health records, compelled disclosure, and direct-to-consumer genetic testing.

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Table 171-1Definitions
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Why Is Genetic Privacy Important

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Numerous public opinion surveys in the last decade confirm that the public overwhelmingly supports the concept of genetic privacy. Genetic information is widely regarded as sensitive information that should not be readily accessible to any other individuals or entities without the explicit consent of the individual. Unauthorized access, use, or disclosure of genetic information may be considered to result in two types of harms. First is intangible harms, such as mental anguish, embarrassment, stigmatization, and undermining of personal and familial relationships, which can be lessened by limiting access to genetic information. In addition, there is also support for the principle that individuals should have a right “not to know” the predictive and sometimes unsettling information in their DNA. Second, the disclosure of genetic information may lead to tangible harms, such as adverse treatment by employers and various insurers, loss of government benefits, or disadvantage in educational or other opportunities. Collectively, these concerns are often referred to as “genetic discrimination.” Many of the laws enacted to deal with genetic privacy focus on preventing genetic discrimination.

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There is a close connection between genetic privacy (including discrimination) and research and clinical genetics. Individuals who believe they—or their children and other family members—might experience genetic discrimination are likely to forego genetic testing and other potentially beneficial medical interventions. Thus, legislative efforts to protect privacy and prohibit discrimination are less about redressing the relatively few cases of tangible harm than the widespread need to reassure individuals that they can avail themselves of genetic services without worrying about the social consequences.

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How Does the Law Define Genetic Information

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The definition of genetic information selected by a legislature in a statute has important practical implications. A narrow definition, such as only the results of an individual’s genetic test, would not extend protection to individuals who were subject to discrimination on the basis of a family history of a genetic disorder. On the other hand, a broad definition that included family history might be regarded as too far-reaching. The ...

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