Policy Statements Archive

This archive holds a collection of past policy statements issued by Genetic Alliance. The archive runs from 2001 to 2011; for current policy statements, please click here. When policy statements are ready for archiving, they are transferred here; as such, this archive is continually being expanding.

Genetic Alliance policy statements are not released as files, but rather as unique web pages. When a policy statement is archived, the material from its page is entered into a PDF file. This file is then cataloged below, while the original web page for the statement is deactivated.

Policy Statements (2011-2001)

2011 | 2010 | 2009 | 2008 | 2007 | 2006 | 2005 | 2004-2001

2011

Genetic Alliance Supports Patient Access to Laboratory Test Results, November 15, 2011

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

Genetic Alliance sends Congress Letter in Support of the National Center for Advancing Translational Science, February 1, 2011

2010

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

Sharon Terry Testifies at Public Access Federally-funded Research Hearing, July 29, 2010

Sharon Terry Testifies About Increasing Oversight of Laboratory Developed Tests (LDTs), July 28, 2010

Comments to HHS HITECH Privacy and Security Modifications, July 14, 2010 

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

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 Asks FDA for Oversight of Advanced Diagnostic Tests and Proposed IVDMIA Guidance, February 2, 2010 

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

2009

Genetic Alliance Speak at FDA Transparency Task Force Meeting, June 24, 2009 

Sharon Terry Testifies at House Appropriations Committee Hearing, March 18, 2009

Genetic Alliance Position Statement on Earmarking, March 18, 2009 

2008

Comments to the National Institutes of Health on Open Access Policy, March 20, 2008

Remarks to Capitol Hill Staff at the Health IT Now! Coalition Briefing, March 14, 2008

Comments to the Secretary's Advisory Committee on Genetics, Health, and Society on Oversight of Genetic Tests, February 11, 2008

2007

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

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

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

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 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

2006

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

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

2005

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

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

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

2004-2001

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

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