What are the debates about genetic screening?

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With great knowledge comes great responsibility – and possibly unnecessary fear. Now that we have the power to test for disease carrying genes, big questions arise. What should we do if we find out we have a gene for breast or ovarian cancer (BRCA1 and BRCA2)? How do we manage that knowledge? Do we have a radical mastectomy or a hysterectomy as a preventative measure? And if we find out we don’t have the gene, should we be complacent?

With prenatal genetic testing another spectrum of issues arise – from discrimination against disabled people to sex selection – that also rest heavily on the shoulders of women. We look at these issues here.

Genetic screening for diseases in women

Ovarian Cancer Screenings Are Not Effective, Panel Says
By Denise Grady, New York Times, September 10, 2012
Report on the most recent recommendation by the US Preventative Task Force that healthy women should not be tested for ovarian cancer using genetic blood tests and ultrasounds. This recommendation is based on new evidence that these tests often lead doctors to perform needless surgeries that cause serious complications in many patients.

BRCA Genes and Cancer Outcomes
Our Bodies, Our Blog, 2011
While women who have BRCA1/2 mutations may be advised to have earlier or more frequent cancer screenings than other women, it’s not yet completely clear who should get tested for these mutations or if women should be tested once they’re diagnosed with breast or ovarian cancer. 

When Breast Cancer Tests Get it Wrong
By Elizabeth Cohen, CNN, October 2011
Discusses how breast cancer genetic testing can be inaccurate, and talks about the ethics of this testing.

Debate Ensues on Over-the-Counter Genetic Testing
Our Bodies, Our Blog, 2010
Discusses the debate over the U.S. government approval – and the increased use – of over-the-counter genetic tests. Makes the point that a positive test for a disease gene does not necessarily mean you have or will develop that disease.

Genetic Testing for Cancer Risk not Clinically Useful
By Tim Wogan, Science Now, March 2010
Reports on evidence from the U.S. National Cancer Institute (NCI) that DNA doesn't predict breast cancer risk much better than does a questionnaire. The small improvement does not yet justify the cost of introducing the technique into the clinic, they say.

BRCA1 and BRCA2 Predictive Genetic Testing for Breast and Ovarian Cancers: A Systematic Review
Canadian Coordinating Office for Health Technology Assessment, 2006
Found no clear evidence that genetic screening for breast and ovarian cancer “will lead to decisions that result in long-term health benefits.”

Genetic Screening for Breast Cancer and Ovarian Cancer Unique to Women: Genetic Testing and Inherited Risk
Our Bodies, Ourselves, 2005
Discusses the risks of genetic testing for cancer, such as the consequences of finding out you have the gene for breast or ovarian cancer.

Policy on Genetic Testing for Breast Cancer Susceptibility
Breast Cancer Action San Francisco
Looks at the medical issues, psychological impacts, insurance and job discrimination issues related to genetic screening for breast cancer susceptibility.

Prenatal genetic screening 

Unnatural Selection: Is Evolving Reproductive Technology Ushering in a New Age of Eugenics?
By Carolyn Abrahams, The Globe and Mail, January 7, 2012
Discusses the issues involved in genetic selection and the lack of regulation of it in Canada.

Unnatural Selection: Choosing Boys over Girls, and the Consequences of a World Full of Men
By Mara Hvistendahl, Public Affairs, 2011
Examines sex-selection and how selective abortion favours males. Argues that this is a growing practice in the world, aided by widely available and relatively cheap ultrasound tests.

New Prenatal Screening Recommendations Discriminatory: “People with Down Syndrome Enhance the Learning, Lives and Citizenship in Our Schools, Workplaces and Families”
The Canadian Down Syndrome Society, Network Spring/Summer 2007
Argues that laws in Canada governing prenatal genetic testing discriminate against people with Down syndrome.

Prenatal Genetic Testing: The Genetic Construction of Prenatal Testing: Choice, Consent, or Conformity for Women?
By Abby Lippman, in Women and Prenatal Testing: Facing the Challenges of Genetic Technology, Karen H. Rothenberg and Elizabeth J. Thomson (eds.), Columbus, OH: Ohio State University Press, 1994, pp. 9-33
Examines how prenatal testing raises fundamental concerns related to women's health and health care simply because they are techniques applied to women. How, when, why, and to and by whom they are applied will be conditioned by prevailing attitudes about women, their bodies, and their roles.

About Sex Selection
Center for Genetics and Society
A listing of resources about sex selection.

What could be the matter with screening for heart disease?

Women, gender and medical screening