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Policy Issues
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 companies and Medicare need systematic ways of evaluating genetic tests for reimbursement. … capacity to revolutionize clinical practice. The mapping of the human genome has created new opportunities for genetic …
Staff
Leonard Ross is the director of the Ethics Branch at the National Human Genome Research Institute. ​
… Leonard Ross, J.D., M.B.A., is the director of the Ethics Branch and the ethics coordinator of the National Human Genome Research Institute (NHGRI) at the  National Institutes of Health (NIH). Mr. Ross has a Bachelor's and Master's … Leonard Ross is the director of the Ethics Branch at the National Human Genome Research …
The Genomics Landscape
In the February 2024 issue of The Genomics Landscape, NHGRI Director Eric Green spotlights the Genome Statute and Legislation Database, which recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level legislation related to genomics.
… As February begins, many of us at NHGRI are working hard in preparation for the upcoming 101st meeting of the  National Advisory Council for Human Genome Research . I invite you to  watch the Open Session of our council meeting starting at 10:30 a.m. ET on Monday, …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… It is essential to respect the rights and interests of research participants, given that their contributions, … health-related information, are critical for the success of most human scientific research. Researchers and research … For instance, the NIH Genomic Data Sharing (GDS) policy expects that researchers obtain consent when they plan …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… to participate in the research needed for the development of new tests, therapies, and cures. This page provides an overview of the Genetic Information Nondiscrimination Act (GINA) and … The Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from discrimination based on their …
Staff
Dr. Nicole Lockhart is a program director in NHGRI's Division of Genomics and Society.
… (NHGRI) in 2012 as a program director in the Division of Genomics and Society. Dr. Lockhart oversees a portfolio of research and career development grants related to the … (NCI). While at NCI, she focused on ethical, legal and policy issues related to biobanking. Her academic training is …
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 more common in, and out of, the clinic. Yet most genetic tests today are not … without any independent analysis to verify the claims of the seller. … (FTC). Genetic and Genomic tests, like other types of diagnostic tests, can be evaluated and regulated on the …
Policy Issues
NHGRI wants to ensure that all populations benefit from the advances of genomics research.
… Genomics research is shaping the future of medicine. For these advances of this research to benefit everyone more equally and improve health equity, it is important that the diversity of the study participants reflect the diversity of the … to ensure that all populations benefit from the advances of genomics research, and have the opportunity to participate …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
… Synthetic biology is a field of science that involves redesigning organisms for useful … and companies around the world are harnessing the power of nature to solve problems in medicine, manufacturing and … as sensing something in the environment, are common goals of synthetic biology projects. Some examples of what …
Policy Issues
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 … Patients, patient advocates, and families of patients with genetic disorders have diverse views on … that those with disabilities often report a high quality of life. 1 The Pew Research Center, a nonpartisan group that …