Privacy Issues in Biomedical and Clinical Research (1998) / Chapter Skim
Currently Skimming:
The Potential—and the Threat—of Genetic Information
The Potential—and the Threat—of Genetic Information
Pages 3-6
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From page 3... ...
The discovery of this gene, like countless other biomedical advances made each year, hinged upon the ability of researchers to test DNA from hundreds or thousands of tissue samples, looking for a shared genetic flaw. This ability, which did not exist little more than a decade ago, has made it possible for scientists to trace the causes of any disease that has a genetic basis or component, from Huntington's disease and sickle-cell anemia to heart disease, most forms of cancer, and Alzheimer's.
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From page 4... ...
"Genetic discrimination arising from genetic information available from medical records exists in the United States, and there are real losses and vulnerabilities associated with the participation in genetic research and genetic testing." In the early 1990s Billings published the first evidence of genetic discrimination in insurance and employment matters, and he has now reviewed more than five hundred cases of people reporting discrimination based on genetic information. The degree of this discrimination has not yet been quantified.
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From page 5... ...
Vicky Whittemore of the National Tuberous Sclerosis Association feels fear of discrimination is widespread among those who belong to her association. "The thing that I hear from our members in terms of genetic privacy and all of the issues that are being discussed here is fear fear of discrimination, fear that release of their medical information or genetic information will have an influence on their eligibility for life insurance, health insurance, or how it will impact them
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From page 6... ...
because of the fear of that information getting out to the public." Such worries are just one part of the public's uneasiness with genetic testing, said Paul Berg, chairman of the Beckman Center at Stanford Medical Center. "In addition to the concern that the results of genetic testing could be used to deny health care coverage, there are other issues that concern many people.
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