Policy and Legislation Database
Search federal and state laws and policy.

Current Issues:

Genetic Discrimination
Protection for personal genetic information.
Informed Consent for Genomics Research
Guidelines, sample language, forms, more.
Genetic Testing
Issues, questions, legislation, policy.
Intellectual Property and Genomics
Gene patenting, guidelines, policy.
Coverage and Reimbursement of Genetic Tests
Who will pay for genetic testing?
Health Issues
Genetic testing, Personalized Medicine, Informed Consent.
Social, Cultural and Religious Issues in Genetic Research
Race, ethnicity, gender.
Biomedical Research Issues
Genetic engineering, cloning, stem cell research.

Ethics Research

Online Bioethics Resources


In Other Sections:

Initiatives and Resources Related to Minorities and Special Populations

Budget and Financial Information



Policy & Ethics
Critical issues and legislation surrounding genetic research

Feature

HHS Issues New Guidance on GINA

Doctor with patient
Biomedical researchers who want to learn more about the Genetic Information Nondiscrimination Act of 2008 (GINA) — and what it means for their research and the informed consent process — should check out a guidance document from the U.S. Department of Health and Human Services (HHS). (Read more)


The Guidance

Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards (IRBs) [hhs.gov]

Fact Sheet for Researchers About the Guidance
The Genetic Information Nondiscrimination Act of 2008: Information for Researchers and Health Care ProfessionalsPDF file
Fact Sheet for the Public About GINA
Frequently Asked Quesitons About the Genetic Information Nondiscrimination Act


Highlights

bullet Genomic Medicine: A Revolution in Medical Practice in the 21st Century
NHGRI Director Dr. Francis S. Collins speaks at the 3rd Annual World Health Care Congress in Washington, D.C. on April 17, 2006.
bullet Balancing Intellectual Property Rights With Research Needs: A Report from the National Academy of Sciences [nap.edu]
The National Academy of Sciences' (NAS) Committee on Intellectual Property Rights in Genomic and Protein Research and Innovation has released a report Patenting And Licensing of Genomic and Proteomic Innovations. The report was funded by the National Institutes of Health (NIH).This well-crafted report identifies some of the most pressing issues regarding use of intellectual property in the life sciences, lays out these issues clearly and recommends actions to a variety of stakeholders.

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Last Reviewed: August 3, 2009






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Policy and Program Analysis Branch
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Ethical, Legal and Social Implications Research Program
NHGRI Extramural Research Program

Social and Behavioral Research Branch
NHGRI Intramural Research Program