Ethical, Legal, and Social Issues
From WikiGenetics
Over the past decade, many ethical, legal, and social implications (ELSI) associated with genetic testing and research have been raised. In order for genetic testing to be used safely and appropriately, these issues should be discussed with patients so that they are aware of risks and benefits.
Several concerns have arisen regarding the use and potential misuse of genetic information. Genetic information may differ from other health information because of its long-term implications for an individual and his or her family. Concerns range from the analytical and clinical validity of a genetic test, to potential discrimination by health insurers or employers, to the duty to disclose genetic information to potentially affected family members.
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[edit] Description of ELSI Issues
To protect patients from additional distress, health care providers should be aware of the relevant ethical, legal, and social issues related to genetics in health care. Genetic specialists may be better able to address patient concerns and questions regarding these issues. A brief discussion of the major ELSI issues related to genetic testing is provided below.
- Communicating Test Results
- Direct-to-consumer Tests
- Duty to Disclose
- Genetic Discrimination
- Informed Consent
- Privacy
[edit] Testing Related Issues
[edit] Psychosocial Impact
Every individual will respond differently to news of his or her genetic test results whether negative or positive. As there is no right or wrong response, health professionals should refrain from judgment and help the patient understand what the test results mean with respect to their own health, available interventions or follow-up, and risks to their family. An individual may respond to genetic information on several levels, the individual level, family level, or on a community and society level. Referrals to genetic counselors, psychologists, or social workers should be made as needed.
[edit] Reproductive Issues
Genetic information is routinely used to inform reproductive decisions and medical care. Risk factors for genetic conditions for which preconception or prenatal genetic testing may be considered include advanced maternal age, family history, multiple miscarriages, or drug and alcohol exposure. As these procedures carry risks and benefits, parents should carefully consider and discuss these options with a physician or genetic counselor. Providers should take a non-directive stance, especially when the only management option is termination of pregnancy.
[edit] Societal Values
Genetic information can raise questions about personal responsibility, personal choice versus genetic determinism/fate, and concepts of health and disease. Personal factors, family values, and community and cultural beliefs will influence responses to these issues. While genetic information may influence one individual to change his or her lifestyle or behavior in order to reduce risk or disease severity, others may choose to respond differently. Health professionals should be respectful and sensitive to cultural and societal values and work with the patient to define the appropriate course of action for them with respect to genetic testing and follow-up care.
[edit] See Also
[edit] References
American Medical Association. Why Physicians Should Know the Legal and Ethical Issues Raised by Genetic Information and Technology. Genethics 2000 http://www.ama-assn.org/ama/pub/category/3719.html
American Society of Human Genetics Professional Disclosure of Familial Genetic Information (Am J Hum Genet, 62:474-483, 1998) http://www.ashg.org/genetics/ashg/pibs/policy/pol-29.htm
Genetic Alliance. 2007. Understanding Genetics: A Guide for Patients and Health Care Professionals. http://www.geneticalliance.org/ws_display.asp?filter=understanding.genetics.download
Lehmann LS, Weeks JC, Klar N, et al. Disclosure of familial genetic information: perceptions of the duty to inform. (Am J Med Genet 2000; 109(9): 705-11.)
March of Dimes Genetics and Your Practice (Financial, Ethical, Legal and Social Issues (FELSI) http://www.marchofdimes.com/gyponline/index.bm2
U.S. Department of Energy Ethical, Legal, and Social Issues http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml
