ASHG is committed to championing the importance of genetics, and advocating for policies that advance the field. We accomplish these goals by promoting the awareness of key issues that are of importance to the genetics community, and empowering members with information and tools to take action.

For Questions Contact: policy@ashg.org


Oppose H.R. 1313 and Prevent Genetic Discrimination

The Preserving Employee Wellness Programs Act is currently under consideration by the U.S. Congress. This bill would fundamentally undermine the privacy provisions of the Genetic Information Nondiscrimination Act (GINA). Send a letter to your elected representatives asking them to oppose this legislation.

Support Research Funding

Congress will soon determine the total funding for the National Institutes of Health (NIH) in Fiscal Year 2018 (which began on October 2017). Write to your elected representatives in Congress urging them to support a $2 billion increase in funding for the NIH.

PRESS RELEASES & MEDIA

Stay current with Press Releases and News Clips regarding ASHG advocacy.

LETTERS, COMMENTS & STATEMENTS

Read recent Letters and Comments to policymakers and public statements on key science policy and advocacy issues.

 

BLOG POSTS


Explore Blog Posts related to ASHG policy & advocacy.

ADVOCACY TOOLS


Check out these helpful advocacy resources.

 

ASHG advocates for policies consistent with its policy platform that support robust scientific inquiry, the translation of new discoveries into health advances, and the appropriate application of genetics tools within society. We further support policies that advance the understanding of genetics by healthcare professionals and the public.

ASHG opposes H.R. 1313. ASHG advocated for many years for the passage of the Genetic Information Nondiscrimination Act (GINA) to establish strong protections for the American public against genetic discrimination. If enacted, H.R. 1313 would create a loophole in GINA that allows employers to ask employees invasive questions about their and their families’ health, including genetic tests they or their families may have undergone. The bill would also allow employers to impose stiff financial penalties of up to 30 percent of the total cost the employee’s health insurance on employees who choose to keep such information private. Read more on ASHG’s work preventing genetic discrimination.

ASHG supports robust biomedical research funding. ASHG supports the robust, predictable, and sustainable federal funding of biomedical research to fuel future scientific advances. The lack of such funding not only harms the progress of research but also makes careers in science less attractive to the next generation of potential biomedical researchers. The level of funding for the NIH is determined each year by Congress, and ASHG partners with FASEB to advocate for funding levels that ensure continued scientific progress. For Fiscal Year 2018, which starts on October 1, 2017, ASHG, and FASEB partner societies, are asking for at least $35 billion dollars.

ASHG opposes the travel restrictions. On March 6, 2017, the White House issued a new Executive Order with the intent of suspending entry of nationals from six countries into the United States, and of refugees whose applications have not yet been approved by the Department of State. As a global organization that deeply values collaboration, we believe this order will harm the progress of scientific research in the U.S. and abroad. ASHG opposes the travel ban and is monitoring the effect on our members.

 

Share Your Advocacy Experience. Have you done advocacy work in the past? We hope to know more about how members have affected and informed policy and policymakers. Let us know if you have experience or connections with lawmakers that you believe could assist ASHG in its advocacy. (Please note: we greatly respect your privacy and will not share any information you provide without permission.)

LETTERS, COMMENTS & STATEMENTS

Read recent Letters and Comments to policymakers and public statements regarding key science policy and advocacy issues.

Letters

3/7/17: ASHG Letter from president Nancy Cox on the Executive Order Protecting The Nation From Foreign Terrorist Entry Into The United States
3/7/17: ASHG Letter to U.S. Committee on Education and the Workforce Opposing the Preserving Employee Wellness Programs Act (H.R.1313)
3/7/17: Multi-organization Letter to U.S. Committee on Education and the Workforce Opposing the Preserving Employee Wellness Programs Act (H.R.1313)
6/24/16: ASHG Letter of Support for the Genetic Research Privacy Protection Act 
3/20/15: Multi-organization Letter of Support to Preserve Nondiscrimination Protections Afforded by GINA and the ADA


Comments Submitted

10/6/16: ASHG Comments Submitted in Response to FDA's Draft Guidance: Use of Standards in FDA Regulatory Oversight of Next Generation Sequencing (NGS)-Based In Vitro Diagnostics (IVDs) Used for Diagnosing Germline Diseases
10/6/16: ASHG Comments Submitted in Response to FDA's Draft Guidance: Use of Public Human Genetic Variant Databases to Support Clinical Validity for Next Generation Sequencing (NGS)-Based In Vitro Diagnostics
12/16: ASHG Comments Submitted in Response to FDA's Discussion Paper: Use of Databases for Establishing the Clinical Relevance of Human Genetic Variants


Statements

8/3/17: ASHG Position Statement: Human Germline Genome Editing
3/18/16: ASHG Policy Statement on the Collection and Use of Genetic Information for Law Enforcement 
5/18/16: ASHG Policy Statement on the Canadian Genetic Non-Discrimination Act (S-201) 


See Statement Archive and Policy Platform for other ASHG policy positions.

ADVOCACY TOOLS

Check out these helpful advocacy resources.

Faseb logo

ASHG is a member of the Federation of American Societies for Experimental Biology (FASEB) and partners with other member societies to advocate for robust, predictable, and sustainable funding for biomedical research.


Please contact us at policy@ashg.org to give us your feedback on ASHG’s policy and advocacy work.