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NIH

Issues in Genetics

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Coverage and Reimbursement of Genetic Tests

Information about insurance coverage for genetic testing
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Human Subjects Research

Human subject participation for biomedical, clinical and social-behavioral research
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Genetic Discrimination

How Americans are protected from discrimination based on their genetics
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Regulation of Genetic Tests

How the federal government regulates genetic tests.
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Privacy in Genomics

How best to ensure that genomic information remains private
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Informed Consent

The rights of participants when consenting to research projects
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Intellectual Property and Genomics

Can a gene be patented?
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Genomics and Health Disparities

Ensuring that all populations benefit from the advances of genomics research

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Genome Statute and Legislation Database

A database of state statutes and bills from 2007-2017 U.S. state legislative sessions

Highlights

New policy to protect research participants of NIH-funded research

Combination Lock with the Letters A-T-C-GThe 21st Century Cures Act, enacted December 13, 2016, strengthened privacy protections for research participants. Now, a new policy specifically requires additional protections for sensitive information collected from participants as part of federally-funded research. The National Institutes of Health (NIH) recently put forth this new policy requiring all NIH-funded investigators conducting sensitive, health-related human subjects research be issued Certificates of Confidentiality instead of by researcher request.

NIH to Host Webinar on Proposed Update to Genomic Data Sharing Policy

Scientific Data ManagementIn follow up to the September 20 release  of the Request for Public Comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing (GDS) Policy, experts from the NIH Office of Science Policy (OSP) and NHGRI will host a webinar at 12:00 p.m. Eastern on October 4, 2017. An overview of the proposed update will be provided as well as time for questions from the public. To participate in this Webinar, please pre-register here.

NIH seeks comment on proposal to update data management of genomic summary results

Scientific Data ManagementThe National Institutes of Health (NIH) has issued a notice in its Guide to Grants and Contracts seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to the data management practices would help support NIH's goals to promote scientific advances and protect research participants' privacy interests by allowing genomic summary results to be provided via a public, rapid-access model.

Learn about Genome Editing

Zebrafish and DNAThe American Society of Human Genetics and ten other organizations just issued a policy statement on germline genome editing in humans in the journal Cell on August 3rd.. Germline editing is adding, removing or replacing parts of DNA in the cells that will get passed down to the next generation. Want to learn more about genome editing? Check out our new resource here!"

HHS takes steps to provide more information about clinical trials to the public

Doctor with patientTo make information about clinical trials widely available to the public, the U.S. Department of Health and Human Services (HHS) has issued a final rule specifying requirements for registering and reporting summary results information to ClinicalTrials.gov. The new rule expands the legal requirements for submitting results. NIH also has issued a complementary policy for submitting summary results information for all NIH-funded clinical trials.

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