Policy Statements
Congressional committees, advisory committees, and other deliberative bodies periodically call on Genetic Alliance to testify at hearings on particular issues. In addition, Genetic Alliance actively leverages the voices of its network in formal communication with government officials and agencies.
Open Access
Sign-on Letter for a Strong National Open Access Policy, January 13, 2019
Genetic Alliance Supports Patient Access to Laboratory Test Results, November 15, 2011
Sharon Terry Testifies at Public Access Federally-funded Research Hearing, July 29, 2010
Genetic Alliance Speaks at FDA Transparency Task Force Meeting, June 24, 2009
Comments to the National Institutes of Health on Open Access Policy, March 20, 2008
Patient Research Protections
Comments on NPRM Amendments to the Common Rule, January 2, 2016
OHRP Comments Sign On Letter, January 22, 2015
Request for Comment Period Extension on OHRP Draft Guidance, November 18, 2014
Data Sharing
Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy, November 20, 2013
Genetic Alliance Response to the NIH Draft Genomic Data Sharing (GDS) Policy, November 20, 2013
Health Information Technology
Comments to 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program, June 3, 2019
Genetic Alliance response to the Notice of Proposed Rulemaking (NPRM) to implement the Health Information Technology for Economic and Clinical Health (HITECH) Act, September 13, 2010
Comments to HHS HITECH Privacy and Security Modifications, July 14, 2010
Remarks to Capitol Hill Staff at the Health IT Now! Coalition Briefing, March 14, 2008
Newborn Screening
Genetic Alliance Opposes Cuts to Maternal and Child Health, February 14, 2011
Genetic Testing
Organizations Sign on to Support bill HR.4144, the "Ending the Diagnostic Odyssey Act of 2019.", October 1, 2019
Sharon Terry Asks Organizations to Sign on to support bill H.R.4144, the “Ending the Diagnostic Odyssey Act.”, September 17, 2019
Genetic Alliance Response to FDA LDT Guidance, February 2, 2015
Beast of Burden? Comments on the NIH Genetic Testing Registry, March 2012
Sharon Terry Testifies about Increasing Oversight of Laboratory Developed Tests (LDTs), July 28, 2010
Genetic Alliance Asks FDA for Oversight of Advanced Diagnostic Tests and Proposed IVDMIA Guidance, February 2, 2010
Comments to the Secretary's Advisory Committee on Genetics, Health, and Society on Oversight of Genetic Tests, February 11, 2008
Gene Patenting
Sharon Terry Testifies at House Appropriations Committee Hearing, January 29, 2010
Genetic Discrimination
Comments on Proposed Rule, Amendments to regulations under the Genetic Information Nondiscrimination Act of 2008, RIN 3046-AB02, January 28, 2016
Other
Reopen the Government. October 4, 2013
Genetic Alliance Applauds Supreme Court Decision on Affordable Care Act, June 28, 2012
Genetic Alliance Responds to ANPRM Regarding the Common Rule, October 26, 2011
Genetic Alliance Argues New Proposed Rule on HIPAA is Misguided, August 1, 2011
Genetic Alliance sends Congress Letter in Support of the National Center for Advancing Translational Science, February 1, 2011
Sharon Terry Provides Testimony on the Topic of Genetic Information to the National Committee on Vital and Health Statistics (NCVHS), June 15, 2010
Sharon Terry Testifies at the House Committee on Science and Technology, February 24, 2010
Genetic Alliance Position Statement on Earmarking, March 18, 2009
Sharon Terry Testifies at House Approbations Committee Hearing, March 18, 2009
