Policy
Genetic Alliance has been involved in supporting policies that enable individuals, families, and communities to access services, and find support.
This is a sampling of efforts we have led. New efforts are on hold due to policy changes in the US Government.
September 19, 2019
Database shares that transform research subjects into partners
January 4, 2017
The study is open: Participants are now recruiting investigators
April 3, 2012
From patients to partners: participant-centric initiatives in biomedical research
December 19, 2011
Engaging research participants and building trust
September 18, 2001
Data Sharing Goals for Nonprofit Funders of Clinical Trials
March 20, 2020
Time for NIH to lead on data sharing
September 19, 2019
Database shares that transform research subjects into partners
April 19, 2019
Genetic Alliance and Luna announce partnership
to enable advocacy organizations to recognize individuals control their own health data and use it as they wish to further research.
February 21, 2017
Data sharing as the new norm: what about the people part?
April 20, 2016
The Day the President of the United States Said "That Data is Mine"
March 7, 2018
Including all voices in international data-sharing governance
November 20, 2013
Genetic Alliance Response to the NIH Draft Genomic Data Sharing (GDS) Policy
November 20, 2013
Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy
August 17, 2013
Free the data: the end of genetic data as trade secrets
January 20, 2013
Sharing clinical research data: perspectives on an IOM workshop
February 9, 2011
Power to the people: participant ownership of clinical trial data
November 30, 2006
:::right-offset January 22, 2015
January 2, 2015
Joint responce to NPRM amendments to the Common Rule
November 18, 2014
Request for Comment Period Extension on OHRP Draft Guidance
October 29, 2014
Public Comments in Response to OHRP Guidance
October 26, 2011
Genetic Alliance Responds to ANPRM Regarding the Common Rule
:::January 27, 2020
Joint letter to President Trump in support for a strong national Open Access policy
November 15, 2011
Genetic Alliance supports patient access to laboratory test results
July 29, 2010
Written Public Testimony to House of Representatives on Public Access to Federally-Funded Research
June 24, 2009
Written Public Testimony for FDA Transparency Task Force Meeting
March 20, 2008
Comments to the National Institutes of Health on Open Access Policy
October 17, 2007
Letter to Senate on National Institutes of Health public access policy
June 19, 2007
February 16, 2023
July 16, 2021
Joint Comments on Cures 2.0 Act
July 16, 2021
Genetic Alliance Comments on Cures 2.0 Act
June 3, 2019
April 27, 2016
Senate Inovations Sign-On Letter
October 4, 2013
June 28, 2012
Genetic Alliance Applauds Supreme Court Decision on Affordable Care Act
August 1, 2011
Genetic Alliance Argues New Proposed Rule is on HIPAA is Misguided
July 27, 2009
Genetic Alliance Statement on Current Shortages of Enzyme Replacement Therapy
June 1, 2007
Comments to the Secretary’s Advisory Committee on Genetics, Health, and Society on pharmacogenomics
September 13, 2010
July 14, 2010
Comments to HHS HITECH Privacy and Security Modifications
March 14, 2008
Remarks to Capitol Hill Staff at the Health IT Now! Coalition Briefing
December 24, 2020
Genetic and Disability Discrimination During COVID-19
January 28, 2016
October 12, 2012
“Genetic Information Nondiscrimination Act”, in Genetics and Genomics for Nursing, editors: Carole A Kenner and Judith A. Lewis, published by Prentice Hall.
June 15, 2010
December 13, 2009
Genetic Information Nondiscrimination Act Insurance Protections Issued
February 17, 2005
Comments on passage of the Genetic Information Nondiscrimination Act (S.306) in the Senate
January 7, 2022
Sign-On Letter to Senate for Introducing the S.2022, the “Ending the Diagnostic Odyssey Act.”
August 4, 2021
Sign-On Letter to Senate for Introducing the S.2022, the “Ending the Diagnostic Odyssey Act.”
April 19, 2021
Genetic Testing in the Age of COVID-19 and Beyond
October 15, 2020
June 16, 2020
Sign-On Letter to Senate for Introducing the S.3116, the “Ending the Diagnostic Odyssey Act.”
June 15, 2020
October 1, 2019
Sign-On Letter in Support of H.R.4144, the “Ending the Diagnostic Odyssey Act of 2019.”
September 21, 2019
Letter to Congress in Support of H.R.4144, the “Ending the Diagnostic Odyssey Act.”
January 11, 2019
A Role for Storytelling in Improving Consumer Understanding of Genetic Testing
July 22, 2018
The Price of Precision: Genetic Testing and Drug Costs in America
July 1, 2017
An Evidence Framework for Genetic Testing
November 20, 2016
Expanded Carrier Screening and Its Implication on Genetic Testing Protocols
January 5, 2015
February 2, 2015
Genetic Alliance Response to FDA LDT Guidance
August 18, 2014
Genetic testing and native peoples: the call for community-based participatory research
June 18, 2014
September 27, 2013
The Need to Build Trust: A Perspective on Disparities in Genetic Testing
March 1, 2012
Beast of Burden? Comments on the NIH Genetic Testing Registry
October 11, 2011
August 14, 2010
Not Your Grandfather's Genetic Testing Oversight
July 28, 2010
FDA Public Hearing - Oversight of Laboratory Developed Tests
February 2, 2010
Oversight of Advanced Diagnostic Tests and Proposed IVDMIA Guidance
April 17, 2009
Registry of Genetic Tests: A Critical Stepping Stone to Improving the Genetic Testing System
February 11, 2008
July 26, 2007
February 22, 2007
February 22, 2007
October 11, 2006
September 26, 2006
September 26, 2006
June 6, 2006
February 28, 2006
Letter to CMS Administrator Mark McClellan regarding genetic testing quality
November 2, 2005
Comments to the Food and Drug Administration (FDA) On Direct-to-Consumer Marketing of Genetic Tests
May 6, 2005
Comments to the Secretary's Advisory Committee on Genetics, Health, and Society
March 1, 2004
Comments to the Secretary's Advisory Committee on Genetics, Health, and Society
July 1, 2020
May 22, 2013
February 14, 2011
Genetic Alliances Opposes Cuts to Maternal and Child Health
July 29, 2010
Public Comment to HIT Policy Committee: Meaningful Use Workgroup on Newborn Screening Inclusion
July 1, 2010
May 5, 2005
September 23, 2004
Heritable Disorders and Genetic Diseases in Newborns and Children
February 1, 2011
March 18, 2009
Genetic Alliance Position Statement on Earmarking
March 18, 2009
Sharon Terry Testifies at House Appropriations Committee Hearing
May 21, 2007
Letter to the Chairs of the Senate and House Appropriations Subcommittees on LaborHHS
November 17, 2006
February 24, 2010
September 18, 2009
Joint Letter on Small Business Innovation Research (SBIR) Reauthorization
October 19, 2007
Joint Letter on Small Business Innovation Research (SBIR) Reauthorization