Emily asked in Science & MathematicsMedicine · 1 decade ago

Research Paper: Ethics of Genetic Testing for Incurable Disease (10pg)?

I'm planning a 10 page research paper on ethics of genetic testing on incurable diseases like Huntington's Disease, Mitochondrial Diseases, Cystic Fibrosis...

My paper would most likely focus on Patient Confidentiality-->who has the right to know the results of a genetic test? Are there laws or (should there be laws) governing information obtained from genetic tests?

I was wondering if anyone had any websites/links, books, or journal articles regarding this topic?

Any suggestions would be greatly appreciated

1 Answer

  • 1 decade ago
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    Government Regulation:

    Currently, there is no strong federal regulation moderating the DTC market. Though there are several hundred tests available, only a handful are approved by the FDA, which are sold as at-home test kits. Due to the nature of the majority of DTC tests as mailed in DNA samples, it is difficult for the FDA to exercise a form of jurisdiction as the tests are completed in the laboratories of providers, and are not in fact sold as medical devices. Additionally, the FDA has not yet officially substantiated with scientific evidence the claimed accuracy of the majority of direct-to-consumer genetic tests.

    On April 24, 2008, the United States Senate passed the Genetic Information Nondiscrimination Act with a vote of 95-0. The act is the first of its kind in the U.S. to prevent discrimination against people based on their genetic information.

    For more info:



    cite web "Definitions of Genetic Testing". Definitions of Genetic Testing (Jorge Sequeiros and Bárbara Guimarães). EuroGentest Network of Excellence Project. 2008-09-11. http://www.eurogentest.org/patient/public_health/i... Retrieved on 2008-08-10.

    Holtzman NA, Murphy PD, Watson MS, Barr PA (October 1997). "Predictive genetic testing: from basic research to clinical practice". Science (journal) 278 (5338): 602–5. PMID 9381169. http://www.sciencemag.org/cgi/pmidlookup?view=long...

    Allingham-Hawkins, Diane (2008-08-01). "Successful Genetic Tests Are Predicated on Clinical Utility". Genetic Engineering & Biotechnology News (Mary Ann Liebert) 28 : pp. 6, 9. ISSN 1935-472X. http://www.genengnews.com/articles/chitem.aspx?aid... Retrieved on 2008-09-23.

    Amy Harmon, "Insurance Fears Lead Many to Shun DNA Tests," The New York Times, February 24, 2008

    "Genetic Information and Medical Expense Insurance", American Academy of Actuaries, June 2000

    Statement of Administration policy, Executive Office of the President, Office of Management and Budget, 27 April 2007

    Keim, Brandon (May 212008). "Genetic Discrimination by Insurers, Employers Becomes a Crime". Wired.com. http://blog.wired.com/wiredscience/2008/05/the-gen... Retrieved on 2008-05-28.

    "Administration News | President Bush Signs Genetic Nondiscrimination Legislation Into Law," Kaiser Daily Health Policy Report, Kaiser Family Foundation, May 22, 2008

    Hunter et al., "Letting the Genome out of the Bottle" New England Journal of Medicine

    Gollust et al., "Limitations of Direct-to-Consumer Advertising for Clinical Genetic Testing," JAMA.2002; 288: 1762-1767

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