Policy and Legislation Database
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Current Issues:

Coverage and Reimbursement of Genetic Tests
Who will pay for genetic testing?
Genetic Discrimination
Protection for personal genetic information.
Genetic Testing
Issues, questions, legislation, policy.
Health Issues
Genetic testing, Personalized Medicine, Informed Consent.
Informed Consent for Genomics Research
Guidelines, sample language, forms, more.
Intellectual Property and Genomics
Gene patenting, guidelines, policy.

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

Interim Final Regulations Issued for Part of the Genetic Information Non-Discrimination Act

People with a D N A double-helix and letters of A T C G in the background
On October 1, 2009, the Internal Revenue Service, Department of Labor and Department of Health and Human Services released the joint, final interim regulations under Title I of the Genetic Information Nondiscrimination Act of 2008 (GINA). These final regulations will be effective December 7, 2009. Find out how to comment. (Read more)



Highlights

bullet 2010 Genetics and Public Policy Fellowship
This fellowship program is designed for genetics professionals with an advanced degree who are early in their careers and interested in the development and implementation of genetics health and research policies at the national level.

bullet Genetics and Public Policy FellowshipPDF file
Fellowship flyer for distribution
bullet The Genetic Information Nondiscrimination Act of 2008: Information for Researchers and Health Care ProfessionalsPDF file
bullet Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards (IRBs) [hhs.gov]
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 Updated: November 12, 2009



See Also:
Genetics and Public Policy Fellowship

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