Genetic research is designed to advance our understanding of the human genome and the role of individual genes or groups of genes in human health. However, beyond the hoped-for improvements in the medical profession's ability to treat and cure diseases, genetic research raises questions concerning how the information and technologies it yields will affect standards of patient care.
Genetic testing and counseling, as well as gene therapy, raise difficult questions. Should physicians and health counselors, for example, tell patients that they might be at high risk for developing an illness because of their genetic makeup when there is no effective treatment or cure for that disease now? Should health care practitioners perform genetic testing of an unborn fetus when the results might lead its parents to abort the pregnancy? Does the nature of genetic information create a need to revisit issues of informed consent and other ethical questions in the use of human subjects in genetics research? And how can the biomedical community use genetic information to improve standards of patient care?
The National Human Genome Research Institute (NHGRI) supports highly technical genetic research that is rapidly advancing our understanding of the human genome. This new information, although potentially beneficial to the health of Americans, can also be misused. The insights gained through the Ethical, Legal and Social Implications (ELSI) Research Program inform the development of federal guidelines, regulations and legislation to guard against misuse of genetic information.
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Last Updated: October 15, 2012