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Issues in Genetics

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Coverage and Reimbursement of Genetic Tests

Information about insurance coverage for genetic testing

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


We need your input: dbGaP Data Submission and Access Process

MelanomaNHGRI believes that broadly sharing research data will result in maximum public benefit, and we're committed to providing researchers with access to genomic data. The National Institutes of Health (NIH) Genomic Data Sharing Policy establishes a system to promote data sharing, while also protecting research participants involved in genomics studies. We need your help to improve one of NIH's central data sharing tools for human genomic data: the database of Genotypes and Phenotypes, or dbGaP.

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 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.

FDA requests comments on draft guidance for Precision Medicine Initiative

Sequence data and a DNA double helixThe U.S. Food and Drug Administration (FDA) has announced two draft guidances to support President Obama's Precision Medicine Initiative. The guidances will help provide oversight for tests based on next generation sequencing. 

Advisory committee addresses building a medical information commons

Letters of A T C G around the globe While generating large amounts of medical and genomic data may improve health, questions about access and use remain. To address these challenges, an NHGRI-funded project titled, Building the Medical Information Commons: Participant Engagement and Policy, held its first advisory committee meeting March 2-3 in Houston. 

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