advertising campaign, more than two-thirds of those interested before the campaign were appropriate candidates for the testing; after the campaign, a bit less than half were appropriate candidates. The campaign clearly succeeded in generating interest in the test; it was far less successful, however, in clarifying who might and might not benefit from it and why.

As the results of genetic research increasingly inform health care and influence medical decisions, consumers will need to understand genetic tests’ risks and benefits, their relevance and limitations. To encourage a common language that facilitates discussions between patients and their health care providers, education for the public and for health professionals should be complementary.10


  • How can consumers’ genetic privacy be protected, and how can consumers be reassured that their genetic information will indeed remain private?

  • Should GINA explicitly extend to employers’ wellness programs and to genetic information gathered on the Internet?

  • Should HIPAA’s privacy protections be extended explicitly to genetic information, no matter where it is collected and stored?

  • Should there be a single privacy policy to which all DTC genetic testing companies are required to adhere? If so, how should it be developed and enforced?

  • Should there be guidelines that all DTC genetic testing companies must follow in describing the risks, benefits and appropriate applications of the tests they offer? If so, how should these be developed and enforced?

  • What is the most effective way of educating the general public on genetics, genetic testing, and risk?

  • What kinds of interventions will be effective in helping to reduce disparities in awareness and understanding of genetics and genetic testing among ethnic and socioeconomic groups?


 From the remarks of Joseph McInerney, Executive Director, National Coalition for Health Professional Education in Genetics.

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