Skip Navigation - National Human Genome Research - National Human Genome Research - National Human Genome Research InstituteNational Institutes of Health
       Home | About NHGRI | Newsroom | Staff
Research Grants Health Policy & Ethics Educational Resources Careers & Training
Policy and Legislation Database
Search federal and state laws and policy.

Current Issues:

Genetic Discrimination
Protection for personal genetic information.
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


GINA: Keeping Pace with the Times

People with letters of A T C G in the background The New England Journal of Medicine features an article on the Genetic Information Nondiscrimination Act (GINA) co-authored by NHGRI's Francis Collins, M.D., Ph.D., and M.K. Holohan, J.D., and Kathy Hudson, Ph.D., director of the Johns Hopkins Genetics and Public Policy Center. The new federal law protects people from discrimination in employment and health insurance based on genetic information.

NHGRI Webinar Series
GINA is the subject on July 17, 2008 at 1 p.m. Eastern for our new webinar series on topics related to genomics, health and society.

Read the article and its Quick Guide to GINA []

Learn more about the Genetic Information Nondiscrimination Act of 2008


bullet FDA Issues Guidance On "Home Brew" and In Vitro Tests
Two guidances illustrate FDA efforts to be mindful of the increase in "home brew" tests.

bullet GAO Concludes DTC Genetic Tests Mislead Consumers
A Government Accountability Study (GAO) study concludes that direct-to-consumer genetic tests pass on "misleading" information.

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 The Future of Genomic Medicine: Policy Implications for Research and Medicine
A roundtable that examined what the core policy issues the NHGRI should work on to help ensure that our greatly expanding knowledge of human genomics is translated into improved health care.

bullet Balancing Intellectual Property Rights With Research Needs: A Report from the National Academy of Sciences []
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.

bullet A letter of support from the Secretary for Health and Human Services [] PDF icon
On November 8, 2005 Secretary of Health and Human Services Michael Leavitt expressed his support for federal genetic nondiscrimination legislation in a letter to the Secretary's Advisory Committee on Genetics, Health and Society (SACGHS). Responding to a SACGHS report, Secretary Leavitt expresses his commitment to working with Congress and relevant stakeholders to achieve the timely passage of appropriate legislation.

bullet NHGRI Director Speaks at Personalized Medicine Briefing
National Human Genome Research Institute Director Francis S. Collins spoke recently at a luncheon briefing hosted by the Personalized Medicine Coalition. The luncheon featured comments on genetic discrimination by Dr. Collins and former House Speaker Newt Gingrich.

bullet Task Force Recommends Against Routine Testing for Genetic Risk of Breast or Ovarian Cancer in the General Population
bullet Personalized Medicine: How the Human Genome Era Will Usher in a Health Care Revolution
Personalized medicine has the potential to transform healthcare through earlier diagnosis, more effective prevention and treatment of disease, and avoidance of drug side effects.

bullet Legislative Database Foreign Summaries
The NHGRI Policy and Legislation Database now includes summaries and links to foreign laws and reports on issues of genetics. You are encouraged to search these new entries through the database search engine. NHGRI will de updating these entries, as well as U.S. state laws, as more become available online.


bullet Search the NHGRI Policy and Legislation Database by U.S. State

To view the PDF on this page you will need Adobe Acrobat Reader.Download Adobe Acrobat Reader

Top of page Top of page

Last Updated: July 21, 2008

See Also:

Policy and Program Analysis Branch
Policy Staff Contact Information

Ethical, Legal and Social Implications Research Program
NHGRI Extramural Research Program

Social and Behavioral Research Branch
NHGRI Intramural Research Program

PrivacyCopyrightContactAccessibilitySite MapStaff DirectoryFOIAHome Department of Health and Human Services  National Institutes of Health