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Policy & Position Statement Archives



Policy & Advocacy Overview



Seeking Member Comments: Genome Editing Statement

The Workgroup on the Implications of Genome Editing (Co-Chairs Doug Mortlock and Kelly Ormond) welcome your comments throughout the process of developing a policy statement in this area. We have posted the policy forum slides to the ASHG website for members who were not able to attend the 2015 Policy Forum and Business Meeting on Friday, October 9. We are at an early stage in our process, and the attached slides do not yet reach any proposed guidelines. We look forward to thoughts from the ASHG membership on the potential societal implications of genome editing, particularly germline genome editing. You may also feel free to contact either of the co-chairs directly with your thoughts or questions:

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ASHG Policy Fellowships & Grants

ASHG/NHGRI Genetics & Public Policy Fellowship


ASHG Position Statements & Comments on Public Policy

ASHG Policy & Position Statement Archives


Gene Patent Issues


Principles for protecting intellectual property



American Medical Association, American Society of Human Genetics, American College of Obstetricians and Gynecologists, American College of Embryology, and The Medical Society of the State of New York


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ASHG Testimony to SACGHS

Comment on District Court Ruling



Genetic Information Nondiscrimination Act (GINA) Information & Resources

ASHG Response to Request for Information Regarding Sections 101 through 104 of the Genetic Information Nondiscrimination Act (GINA) of 2008


GINA Op-Ed Articles by ASHG’s Executive Vice President, Joann Boughman, PhD

Coalition for Genetic Fairness: “What does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act” - This resource provides a functional outline of GINA’s protections and how the legislation impacts every individual in the nation. It also includes a history of the legislation, hypothetical situations of genetic discrimination, and key examples and definitions. We encourage individuals and organizations to utilize the guide either as a resource for answering questions or as a flexible tool to adapt and customize for use within your community.

Johns Hopkins University Genetics and Public Policy Center: “Fact Sheet on the Genetic Information Nondiscrimination Act (GINA)” - Following GINA’s passage, the Center generated this widely-distributed fact sheet summarizing GINA’s provisions. This resource provides a concise overview of what the current GINA legislation does and does not do. It also provides the terms and definitions of what protections are covered under GINA’s stipulations, as well as an outline of the scope and enforcement of this legislation.


ASHG & Genetics Advocacy

ASHG Genetics Advocacy Efforts


Genetics Advocacy Overview

"Genetics Advocacy: Opportunity and Obligation" (from AJHG, March 2006)

Genetic Information Nondiscrimination Act (GINA)


The ASHG/Genetic Alliance Advocates Training Partnership Program


Overview (ASHG)

Overview (Genetic Alliance)

Upcoming Events & Opportunities


NIH Genomic Data Sharing Policy (PDF; Aug 2014)


FASEB Washington Update


Breakthroughs in Bioscience


Other Resources

Public Policy Web Sites of Interest


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