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Policy Issues

Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.

… As the field of genomics advances, genetic and genomic tests are becoming … In Vitro Diagnostics Used for Diagnosing Germline Diseases … The FTC’s primary mission is to enforce Section 5 …

Policy Issues

Coverage and Reimbursement of Genetic Tests

Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.

… For patients to have full access to the benefits of genetic testing, payers such as insurance …

Policy Issues

Genetic Discrimination

In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.

… wonder if participating in genetics research or undergoing genetic testing will lead to being discriminated against … to participate in the research needed for the development of new tests, therapies, and cures. This page provides an … from discriminating against patients with genetic diseases by refusing coverage because of 'pre-existing …

News Release

Apply for NHGRI-ASHG's new education fellowship for genetics professionals

The American Society of Human Genetics and NHGRI have teamed up to sponsor the new Genetics and Education Fellowship.

… John Daniels … Realizing the benefits of genomics will require an educated public who can understand the implications of genomics for their health care and evaluate the relevant …

Professional Development Programs

Genetics and Public Policy Fellowship

The Genetics and Public Policy Fellowship is designed for individuals interested in the development and implementation of genetics-related health and research policies at a national level.

… Contact the fellowship program at fellowships@ashg.org or submit our … From guiding research agendas to informing the integration of genetics and genomics in clinical settings, sound … enhance and accelerate equitable access to the benefits of genomics research. These policies are better informed with …

Event

Journeys in Human Genetics and Genomics Colloquium

The Journeys in Human Genetics and Genomics Colloquium is part of a training partnership between ASHG and NHGRI to showcase the depth and breadth of exciting scientific, clinical, and societal elements of human genetics and genomics at an introductory level as well as to illustrate the myriad associated career opportunities.

… The Journeys in Human Genetics and Genomics Colloquium is part of a training partnership between the American Society of Human Genetics (ASHG) and the National Human Genome …

The Genomics Landscape

NIH Undiagnosed Disease Program Celebrates 10th Anniversary

In the July 2018 edition of The Genomics Landscape, NHGRI Director Eric Green highlights the 10th anniversary of the Undiagnosed Diseases Program.

… That event was extremely helpful in revealing some of the major issues that are on the minds of genome … as plot points for television dramas. The Undiagnosed Diseases Program (UDP) was conceived by Dr. William Gahl … cardiology, and genetics. Dr. Gahl, an expert on rare genetic diseases, served as the founding Director of the UDP …

Policy Issues

Timeline of the Genetic Information Nondiscrimination Act (GINA)

The GINA is an important U.S. civil rights law that protects individuals from discrimination based on their genetic information.

… The Genetic Information Nondiscrimination Act, commonly known … protects individuals from discrimination based on their genetic information. It was first introduced into the U.S. … 1995 Rep. Louise Slaughter introduces the first version of the bill in the U.S. House of Representatives. More + 1995 …

The Genomics Landscape

NHGRI medical genetics training programs provide an array of education opportunities

… M.D., Ph.D, announced expansive new efforts for all of NIH to support equity, diversity, and inclusion in … in which NHGRI is centrally involved, such as the Genetic Counseling Training Program that is collaboratively … experiences in clinical and molecular genetics, metabolic diseases, and bioinformatic applications. The program …

Policy Issues

What do People Think About Genome Editing?

Patients with genetic disorders and members of the public have diverse about germline genome editing.

… Patients with genetic disorders and members of the public, both in the United States and around the … it should be used to prevent people from getting genetic diseases, especially ones that do not currently have …