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Genetic Testing & Screening

genetic screening imageScientific findings on the genetic underpinnings of disease have greatly expanded over the last decade, leading to many new genetic tests. Once confined to rare genetic disorders and prenatal testing, genetic tests can now estimate susceptibility to breast cancer, hereditary colon cancer, and Alzheimer’s disease. With the recent advent of direct-to-consumer genetic testing, people can order medical and nonmedical tests, including genome scans and DNA analyses that claim to identify ancestry, often over the Internet.

A longstanding concern about genetic testing is discrimination—that people found to be at increased risk of a serious condition could be denied health insurance or employment or face other forms of bias. The federal Genetic Information Nondiscrimination Act (GINA), passed in 2008, prohibits such discrimination. But there are many other unresolved ethical and legal issues.

From the Hastings Center

Bioethics Forum

Behind the Curtain of Personalized Medicine: The Havasupai Tribe Settlement

Susan Gilbert

2008 November-December

The Genetic Information Nondiscrimination Act: Fear Factor or Fantasy Island?

By Benjamin S. Wilfond
The implications of the Genetic Information Nondiscrimination Act are hard to predict—the scope of the law is limited; regulations for implementing it have yet to be written; and its power will only be appreciated once it is challenged. More importantly, however, its implications are difficult to assess because of the “Alice in Wonderland” dimension of the genetic landscape—risks and benefits may be distorted, appearing to be different from what they actually are. And arriving at the hoped-for destination—personalized genetic medicine, where knowledge is power and health care is safer, more affordable, more equitable, and more effective—may require a trip down the proverbial rabbit hole.

Bioethics Briefing Book

Genetic Testing and Screening

By Nancy Press

Bioethics Briefing Book

DNA and Law Enforcement

By Karen Maschke

Bioethics Briefing Book

Biobanks: DNA and Research

By Karen J. Maschke

Bioethics Forum

The Murky Waters of the Law Enforcement Gene Pool

Karen J. Maschke

Bioethics Forum

DNA Profiling: Invaluable Police Tool or Infringement of Civil Liberties?

Hugh Whittall

Bioethics Forum

The President's Proposal for Genetic Discrimination Misses the Point

Wendy E. Parmet

Bioethics Forum

It's Time for the Times to Cut the Gene Hype

Erik Parens

Bioethics Forum

And I am Marie of Romania: Genetics, Genealogy, and the Ethics of Storytelling

Nancy Berlinger

Resources

Bioethics Briefs - Karen Maschke

Bioethics Briefs: Biospecimens, Research, and ConsentHastings Center Research Scholar Karen Maschke discusses controversies surrounding the use of biospecimens in research.

Genetics & Public Policy Center

Genetic Alliance

Council for Responsible Genetics

Center for Genetics and Society

 

Further Reading

Helen Pearson, “Genetic Testing for Everyone,” Nature 453, no. 7195 (2008): 570-571.

Jeanne Lenzer, “Direct to Consumer Genetic Testing,” BMJ, April 21, 2008.

Deborah A. Bolnick et al., “The Science and Business of Genetic Ancestry Testing,” Science 318, no. 5849 (2007): 399-400.

Michael J. Hall and Olufunmilayo I. Olopade, “Disparities in Genetic Testing: Thinking Outside the BRCA Box,” Journal of Clinical Oncology 24, no. 14 (2006): 2197-2203.

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