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Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
… Nondiscrimination Act (GINA), a law that was passed in 2008 and impacts the field of genomics, provides an excellent example of the legislative process in action. … If a Representative is the sponsor, the bill is introduced in the House. If a Senator is the sponsor, the bill is …
The Genomics Landscape
In the October 2021 issue of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., introduces us to new scientific director Charles Rotimi, Ph.D., his background and prior accomplishments.
… to bring to your attention a spectacular recent feature in Science that describes the remarkable work of NHGRI’s … diverse backgrounds will benefit equitably from advances in human genomics. Speakers: Robert Winn, M.D., Virginia Commonwealth … and led major basic science and clinical research projects in human genomics. He is a leader in the development of …
The Genomics Landscape
In the September 3, 2020 edition of The Genomics Landscape, Dr. Eric Green talks about the Impact of Genomic Variation on Function (IGVF) Consortium, the 2020 Genomic Innovator Awards and more.
… from home. If you are seeking some virtual connections to genomics, I would like to offer some “remote learning” … Director) and I answered questions about bioethics and genomics research on Twitter as part of #AskDrGenome . … 30th anniversary of the launch of the Human Genome Project in October 2020. Check out the latest oral histories by …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… about volunteers who have chosen to participate in the studies. This raises the question of when and how it … and incidental findings (IFs) from genomic research. These issues are not new or unique to genomics, but advances in … to examine these questions and inform future NHGRI policy. …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… Many Americans wonder if participating in genetics research or undergoing genetic testing will lead … genetics-based clinical tests or volunteer to participate in the research needed for the development of new tests, … from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II). …
Careers and Training
The Health Disparities Unit (HDU) in the Social and Behavioral Research Branch (SBRB) of the National Human Genome Research Institute (NHGRI) is recruiting a postdoctoral fellow interested in the study of the intersection of genomics, social determinants of health and health inequities.
… The Health Disparities Unit (HDU) in the Social and Behavioral Research Branch (SBRB) of the … fellow interested in the study of the intersection of genomics, social determinants of health and health inequities … genetic therapies into health care, as well as societal issues of genomics, race and human genetic variation. …
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 … oversight of the clinical validity of most genetic tests. In light of this, FDA has proposed new policies to enhance …
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
… The final version of the Common Rule was published in the Federal Register on January 19, 2017, following the … and enhance" oversight for human subjects research in the United States to address changes in the nature of research since the original publication of …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… Researchers and research participants should engage in a dialogue to understand the specific considerations … In designing an effective informed consent process for genomics research, researchers should consider the … For instance, the NIH Genomic Data Sharing (GDS) policy expects that researchers obtain consent when they plan …
The Genomics Landscape
In the June 2021 issue of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D. details the upcoming appointment of acting NHGRI Deputy Director, Vence Bonham Jr., J.D. and what it means for the institute.
… is the 5th session of the “ Bold predictions for human genomics by 2030 ” seminar series, which takes place on … fairs.” The second event is the 2021 Healthcare Provider Genomics Education Week , which takes place June 7-11 and … include webinars and Twitter chats (see additional details in the story below). All the best, …