Selected Issues > Genetic Testing & Screening
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 tests, including genome scans and DNA analyses that claim to identify ancestry, 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

2010 September-October

Direct-to-Consumer Genetic Tests and the Right to Know

By Ronni Sandroff
Genetic testing can be too much information, but that doesn’t mean it should be kept from consumers.

2011 May-June

That Personal Touch

“That Personal Touch”: letters from Timothy Caulfield, Anne-Marie Laberge, James P. Evans, Robert Roger Lebel, and Paul T. Menzel about a set of essays on personalized medicine (September-October 2010), with a reply from Leonard M. Fleck; also, corrections to “Fable Hospital 2.0: The Business Case for Building Better Health Care Facilities” (January-February 2011) and “Troubled Children: Diagnosing, Treating, and Attending to Context” (March-April 2011).

Special Report

Genetic Grammar: 'Health,' 'Illness,' and the Human Genome Project

This special supplement grew from The Hastings Center project, The Genetic Prism: Understanding Human Health and Responsibility. Participants stressed the active role researchers play in shaping knowledge, planting the seeds of the answers they will arrive at in the way they frame their questions. Much hangs on the language we invoke as we map the human genome. Words like defects, flaws, disorders, and abnormal can foster stigmatization and discrimination. The practical ramifications of the socially constructed language of disease are most evident in the clinic and the workplace. The diagnostic and predictive potential of genetic knowledge has created problems in these settings that must be explored.

Special Report

Public Priorities of Genetic Services

In Priorities in the Clinical Application of Human Genome Research—The Hastings Center project that informed this special supplement—participants returned to two topics of perennial interest: genetics and allocation of health care resources.

Bioethics Briefing Book

Genetic Testing and Screening

By Nancy Press

Bioethics Briefing Book

Biobanks: DNA and Research

By Karen J. Maschke

2010 November-December

The Egg Hunt

“The Egg Hunt”: a letter from Cheryl Cox Macpherson about “Self-Regulation, Compensation, and the Ethical Recruitment of Oocyte Donors” (Mar-Apr 2010). “The Illusory Level Playing Field”:  letters from Myron Genel, Arne Ljungqvist, Joe Leigh Simpson, Elizabeth Ferris, and Alison Carlson about a set of essays on enhancement in sports (Mar-Apr 2010), with a reply by Alice Dreger. “In Distress”: letters from Antal E. Solyom and Doug McCready about “Moral Distress: A Growing Problem in the Health Professions?” (Jan-Feb 2010).

2010 September-October

A Patient's Experience

By Marian Fontana
Sometimes personalized medicine means less medicine.

2010 September-October

The Prospects for Personalized Medicine

By Shara Yurkiewicz
A new label and its difficulties.
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

Government Accountability Office. 2010. Direct-to-Consumer Genetic Tests: Misleading Test Results Are Further Complicated by Deceptive Marketing and Other Questionable Practices.

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

Christine Hauskeller, "Direct to Consumer Genetic Testing," BMJ, April 21, 2011

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.