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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. 

 

Patient Research Protections

Request for Comment Period Extension on OHRP Draft Guidance, November 18, 2014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

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

Comments to Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, May 5, 2005

Testimony to Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, September 23, 2004

 

Genetic Testing

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Coalition for 21st Century Medicine Responds to the Food and Drug Administration’s Request for Comments regarding “Draft Guidance for Industry and FDA Staff on In Vitro Companion Diagnostic Devices”, October 11, 2011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

Comments to the Food and Drug Administration on the Draft Guidance for Industry, Clinical Laboratories, and FDA Staff on In Vitro Diagnostic Multivariate Index Assays, July 26, 2007

Comments to the Food and Drug Administration (FDA) in Response to Their Draft Guidance on Analyte Specific Reagents (ASRs), February 22, 2007

Comments to the Food and Drug Administration (FDA) in Response to Their Draft Guidance on In Vitro Diagnostic Multivariate Index Assays (IVDMIAs), February 22, 2007

Letter to the Centers for Medicare and Medicaid Services (CMS) Requesting a Genetics Specialty Under the Clinical Laboratory Improvement Amendments (CLIA), October 11, 2006

Citizen’s Petition to the Centers for Medicare and Medicaid Services (CMS) Requesting a Genetics Specialty Under the Clinical Laboratory Improvement Amendments (CLIA), September 26, 2006

Press Conference Statement on the Citizen’s Petition to the Centers for Medicare and Medicaid Services (CMS) Requesting a Genetics Specialty Under the Clinical Laboratory Improvement Amendments (CLIA), September 26, 2006

Letter to the Centers for Medicare and Medicaid Services (CMS) Requesting a Genetics Specialty Under the Clinical Laboratory Improvement Amendments (CLIA),  June 6, 2006

Letter to the Centers for Medicare and Medicaid Services (CMS) Requesting a Genetics Specialty Under the Clinical Laboratory Improvement Amendments (CLIA), February 28, 2006

Comments to the Food and Drug Administration (FDA) on Direct-to-Consumer Marketing of Genetic Tests, November 2, 2005

Comments to the Secretary’s Advisory Committee on Genetics, Health, and Society, May 6, 2005

 

Open Access

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

Letter to Senate on National Institutes of Health (NIH) Public Access Policy, October 17, 2007

Letter to House and Senate Appropriations Committee Members on National Institutes of Health (NIH) Public Access Policy, June 19, 2007

Comments to the National Institutes of Health (NIH) in Response to Their Request for Information on Data-Sharing Policy in Relation to Genome-Wide Association Studies (GWAS), November 30, 2006

Comments to the National Institutes of Health (NIH) in Response to Their Request for Information on the Roadmap Initiative, November 17, 2006

 

Gene Patenting

Sharon Terry Testifies at House Appropriations Committee Hearing, January 29, 2010

 

Genetic Discrimination

Comments on Passage of the Genetic Information Nondiscrimination Act (S. 306) in the Senate, February 17, 2005

 

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

Comments to the Secretary’s Advisory Committee on Genetics, Health, and Society on Pharmacogenomics, June 1, 2007

Letter to the Chairs of the Senate and House Appropriations Subcommittees on Labor-HHS, May 21, 2007

Comments to the Secretary’s Advisory Committee on Genetics, Health, and Society, March 1, 2004

Testimony Before the House Committee on Energy and Commerce Subcommittee on Oversight and Investigations Hearing on Human Cloning, March 28, 2001

 

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