Genetic testing: Ethical and economic issues
The Dilemmas of Genetic Testing (Genetics & Inherited Conditions)
Historically, it was impossible to determine whether a person was a carrier of a genetic disease or whether a fetus was affected by a genetic disease. Now both of these things and much more can be determined through genetic testing. Although there are obvious advantages to acquiring this kind of information, there are also potential ethical problems. For example, if two married people are both found to be carriers of cystic fibrosis, each child born to them will have a 25 percent chance of having cystic fibrosis. Using this information, they could choose not to have any children, or, under an oppressive government desiring to improve the genetics of the population, they could be forcibly sterilized. Alternatively, they could choose to have each child tested prenatally and abort any child that tests positive for cystic fibrosis. Ethical dilemmas similar to these are destined to become increasingly common as scientists develop tests for more genetic diseases.
Another dilemma arises in the case of diseases such as Huntington’s disease (Huntington’s chorea), which is caused by a single dominant gene and is always lethal but which does not generally cause physical symptoms until middle age or later. A parent with such a disease has a 50 percent chance of passing it on to each child. Now that people can be tested, it is possible for a child to know whether he or she has inherited the deadly gene. If a person...
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How Should Genetic Testing Information Be Used? (Genetics & Inherited Conditions)
Scientists are now able to test for more than just specific, prominent genetic defects. Genetic tests are now available for determining potential risks for such things as cancer, alcoholism, Alzheimer’s disease, and obesity. A positive result for the alcoholism gene does not mean that a person is doomed to be an alcoholic but rather that he or she has a genetic tendency toward behavior patterns that lead to alcoholism or other addictions. Knowing this, a person can then seek counseling, as needed, to prevent alcoholism and make lifestyle decisions to help prevent alcohol abuse.
Unfortunately, a positive test for genes that predispose people to diseases such as cancer may be more ominous. It is believed that people showing a predisposition can largely prevent the eventual development of cancer with aggressive early screening (for example, breast exams and colonoscopies) and lifestyle changes. Some preemptive strategies, however, have come under fire. For example, some women at risk for breast cancer have chosen prophylactic mastectomies. In some cases, however, cancer still develops after a mastectomy, and some studies have shown lumpectomy and other less radical treatments to be as effective as mastectomy.
Another concern centers on who should have access to the test results. Should employers be allowed to require genetic testing as a screening tool for hiring decisions? Should...
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Impact and Applications (Genetics & Inherited Conditions)
The long track record and accuracy of some tests, such as the tests for cystic fibrosis and Tay-Sachs disease, has led to the suggestion that they could be used to screen the general population. Although this would seem to provide positive benefits to the population at large, there is a concern about the cost of testing on such a broad scale. Would the costs of testing outweigh the benefits? What other medical needs might not receive funding if such a program were started? The medical community will have to consider the options carefully before more widespread testing takes place.
As more genetic tests become available, it will eventually be possible to develop a fairly comprehensive genetic profile for each person. Such profiles could be stored on CD-ROMs or other storage devices and be used by individuals, in consultation with their personal physicians, to make lifestyle decisions that would counteract the effects of some of the defects in their genetic profiles. The information could also be used to determine a couple’s genetic compatibility before they get married. When a woman becomes pregnant, a prenatal genetic profile of the fetus could be produced; if it does not match certain minimum standards, the fetus could be aborted. The same genetic profile could be used to shape the child’s life and help determine the child’s profession. Although such comprehensive testing is now prohibitively expensive, the...
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Further Reading (Genetics & Inherited Conditions)
Deane-Drummond, Celia. Genetics and Christian Ethics. New York: Cambridge University Press, 2006. Draws on a classical understanding of Christian virtues, especially prudence and justice, to examine ethical issues arising out of genetic testing, genetic counseling, and other genetic practices.
Finger, Anne L. “How Would You Handle These Ethical Dilemmas?” Medical Economics 74, no. 21 (October 27, 1997): 105. Presents results of a survey in which readers were asked to settle two ethical dilemmas involving genetic testing.
Marteau, Theresa, and Martin Richards, eds. The Troubled Helix: Social and Psychological Implications of the New Human Genetics. New York: Cambridge University Press, 1999. Offers brief personal narratives of some of the psychosocial affects of genetic testing for diseases. Illustrations, bibliography, index.
Monsen, Rita Black, ed. Genetics and Ethics in Health Care: New Questions in the Age of Genomic Health. Silver Spring, Md.: American Nurses Association, 2009. A range of essays examine the ethical responsibilities of nurses in the practice of genetic medicine, including religious and cultural perspectives on genetic health care from Hindus, Jews, Catholics, Muslims, Christians, Sikhs, Native Americans, Hispanics, and African Americans. There are also several case studies of the ethics involved in the care of patients with sickle cell disease, breast...
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Web Sites of Interest (Genetics & Inherited Conditions)
American Medical Association. http://ama-assn.org. Contains information on genetic testing and the association’s guidelines on the ethical considerations of this practice.
Human Genome Project Information: Ethical, Legal, and Social Issues. http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml. Discusses fairness, privacy, stigmatization, and other ethical issues arising from the “new genetics.” Provides links to additional sources of information.
National Information Resource on Ethics and Human Genetics. http://Genethx.georgetown.edu. Supports links to databases, annotated bibliographies, and articles about the ethics of genetic testing and human genetics.
National Institutes of Health, Bioethics Resources on the Web. http://bioethics.od.nih.gov/Genetictesting.html. Lists numerous links to Web sites providing information on the ethics of genetic testing and other bioethical issues.
University of Minnesota, Center for Bioethics. http://www.ahc.umn.edu/bioethics/prod/groups/ahc/@pub/@ahc/documents/asset/ahc_75695.pdf. This fact sheet describes genetic testing techniques and spells out the ethical issues generated by these procedures. Includes a bibliography and a list of additional online resources.
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