Direct-to-Consumer Genetic Testing Summary of a Workshop (2011) / Chapter Skim
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Personal and Social Issues
Personal and Social Issues
Pages 13-18
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From page 13... ...
Two issues with far-reaching implications are privacy and public awareness, understanding, and education. PRIVACy1 Privacy has been a long-standing issue in health care and medical research.2 In December 2000, the Clinton administration released the Medical Information Privacy Regulation mandated by the Health Insurance Portability and Accountability Act of 1996 (HIPAA)
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From page 14... ...
ear of genetic discrimination threatens to slow both the advance of such groundbreaking biomedical research and the integration of the fruits of that research into our nation's health care. If individuals continue to worry that they will be denied health insurance or refused employment because they have a predisposition to a particu lar disease, they may forego genetic testing that could help guide medical professionals to lessen their risk."3 Such concerns had spurred the Human Genome Project in 1989 to designate three percent of its total budget for ongoing study of the proj ect's ethical, legal and social implications (ELSI)
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From page 15... ...
What remains unclear at this point is whether GINA extends to genetic information that an employer might request as part of a voluntary workplace wellness program. Such information could range from family history to genetic testing offered through the workplace -- a new market that some DTC genetic testing companies are looking to address.
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From page 16... ...
In terms of information now available online, a study published in 20097 compared the information about genetic testing for venous throm 4 Unless otherwise noted, the section "Public Awareness, Understanding and Education" is taken from the remarks of Katrina Goddard, Senior Investigator, Kaiser Permanente Center for Health Research. 5 Goddard K, Moore C, Ottman D, Szegda K, Bradley L, Khoury M., Awareness and use of direct to-consumer nutrigenomic tests, United States, 2006, Genetics in Medicine, 2007, 9(8)
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From page 17... ...
Moreover, in contrast with the ACMG and CAP sites, both of which listed several benefits and several risks of genetic testing, two of the commercial sites listed fewer of both, and the other three provided no information whatsoever on either benefits or risks. Another study,8 also published in 2009, looked at the impact of risk information on public attitudes toward DTC genetic testing.
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From page 18... ...
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 QUESTIONS RAISED FOR FURTHER DISCUSSION • How can consumers' genetic privacy be protected, and how can consumers be reassured that their genetic information will indeed remain private?
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