HomeHealthGenetics and Genomics for Patients and the PublicGenetic Disorders, Genomics and Healthcare Issues in Genetics, Genomics and Health

Issues in Genetics and Health

Genomics is the study of an organism's whole hereditary information that is present in its genes (DNA) and the use of its genes. It deals with the use of genome information associated with other information to provide answers in biology and medicine.

Genomic research may greatly change the practice of health care. But genomic research alone is not enough to apply this new knowledge to improving human health. We need to carefully study the many ethical, legal and social issues raised by this research. Such study is crucial to being able to use genomic research to help patients and to preventing misuse of new genetic technologies and information.

Ethical, legal and social issues raised by genomic research include:

• Possible discrimination by employers or health insurers
• The need for ethical standards for work with human research subjects or tissues
• Consideration of social, cultural and religious perspectives on genetics and health

Controversial issues such as cloning, stem cell research and eugenics also need to be carefully studied.

Since the beginning of the Human Genome Project, the National Human Genome Research Institute (NHGRI) has understood the need to address these issues as part of advancing the science of genomic research. We have an Ethical, Legal and Social Implications (ELSI) program, which is the federal government's largest funding source for study of these issues. Within NHGRI, the director's Office of Policy, Communications and Education (OPCE) examines the intersection of ELSI issues with legislative policy and provides recommendations for federal policy and legislation. NHGRI also works to increase public awareness of ELSI issues in genomic research.

To learn more about ethics and policy topics and other resources for more information, follow these links to the Policy and Ethics section of this Web site.

Genetic Discrimination

• Legislation on Genetic Information
• Genetic Discrimination in Employment or Insurance

Intellectual Property and Genomics

• Overview
• Pending Legislation
• NHGRI Interest in Itellectual Property
• Report and Policies

Genetic Testing

• Overview
• The Growth of Genetic Testing
• Legislation
• Policy Recommendations
• Reports

Health Issues in Genetics

• Personalized Medicine
• Direct to Consumer Marketing of Genetic Tests
• Genetic Testing and Counseling
• Informed Consent

Social, Cultural and Religious Issues in Genetic Research

• Genetics, Race and Ethnicity
• Genetics, Gender and the Family
• Genetics, Behavior and Mental Illness
• Genetics and the Media
• Philosophical and Religious Perspectives

Biomedical Research Issues In Genetics

• Genetic Engineering and Enhancement
• Cloning
• Stem Cell Research
• Eugenics

Where can I get more information?

• Fact Sheets: About Science, Ethics, Research Technique and the Institute

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Last Reviewed: March 11, 2008