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Policy Statements

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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Request for Comment Period Extension on OHRP Draft Guidance, November 18, 2014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 Applauds Establishment of the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC), May 22, 2013

Genetic Alliance Opposes Cuts to Maternal and Child Health, February 14, 2011

Natasha Bonhomme Presents Public Comments to HIT Policy Committee Regarding Inclusion of NBS as an Area of Focus for Meaningful Use for 2013July 29, 2010

Genetic Alliance Submits Recommendations Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening, July 1, 2010


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

Sign On Letter for Restoration of Coverage of Laboratory Developed Tests (LDTs) for Military Service Members and Their Families, June 2014

Beast of Burden? Comments on the NIH Genetic Testing Registry, March 2012

Coalition for 21st Century Medicine Responds to the Food and Drug Administration’s Request for Comments regarding “Draft Guidance for Industry and FDA Staff on In Vitro Companion Diagnostic Devices”, October 11, 2011

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



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



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26400 Woodfield Road #189, Damascus MD 20872 | Tel: 202.966.5557 | EIN 52-1571905

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