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Health Issues in Genetics
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.
Through the ELSI Research Program, NHGRI also supports a variety of ethics- and policy-related research studies, workshops and conferences to further explore and address such issues. Between 1990 and 2001, these ELSI-funded activities included some 235 research and education projects, more than 550 peer-reviewed journal articles, books, newsletters, Web sites and television and radio programs, as well as dozens of workshops, conferences and related activities focused on translating ELSI research into clinical and public health practices.
Genetic Testing and Counseling
Issues related to the use of genetic technologies to test and counsel individuals and families regarding their risk of certain diseases.
Informed Consent
Examines whether new requirements for informed consent are needed to protect subjects in research studies on the human genome.
Gene Therapy
The use of gene therapy and its relationship to human genomic research.
Clinical Ethics and Standards of Care
Investigating ways the biomedical community can use genetic information to improve standards of patient care.
Last Updated: June 2004
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