Researchers and clinicians are sequencing human genomes faster than ever, so considering the societal implications of genomic data and what we can learn from it is even more crucial. On January 29, 2018, NHGRI hosted a Reddit "Ask Me Anything" (AMA) with program directors from the Ethical, Legal and Societal Implications research program and NHGRI policy experts. Questions ran the gamut of who owns an individual's DNA and the information stored in it, to the implications of genetic testing for children and newborns.
On January 18, 2018, NHGRI hosted a CRISPR "Ask Me Anything" (AMA) with Jennifer Doudna, Ph.D., and her research group that was so popular it landed on the front page of Reddit, reaching a total of 10.5 million people worldwide! Dr. Doudna, along with program directors for the Centers of Excellence in Genomic Science (CEGS) Research Program in NHGRI's Division of Genome Sciences, answered nearly a hundred questions about CRISPR, the immune system, and how CRISPR can be used to treat specific diseases. Here's a recap.
The health and medical care of Americans is greatly influenced by the policy decisions that guide genomic research. NHGRI and the American Society for Human Genetics (ASHG) are committed to strengthening the workforce of policy makers and analysts with genetics professionals through their Genetics and Public Policy Fellowship. The 2017-2018 fellow, Nikki Meadows, Ph.D., has just finished her first rotation at NHGRI. Learn about her experiences and what motivates her to pursue a career in science policy.
As you celebrate Thanksgiving with your family, remember that this special day is also National Family Health History Day, a day that can be important to the health of you and your family. Collecting your family health history can help you detect unique disease risks, manage them before becoming sick, and aid in treatment and diagnosis if you do become sick.
The 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.
The 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.
Healthcare professionals now have access to a variety of educational and clinical genomics resources thanks to a new partnership between the National Human Genome Research Institute, part of the National Institutes of Health, and several professional medical societies. The Genetics/Genomics Competency Center (G2C2) website has made available this free, online collection of more than 500 materials for use in the classroom and the clinic.
The National Human Genome Research Institute will mark its fourteenth annual National DNA Day by organizing a nationwide network of educational events for students, teachers and health professionals. Celebrated on April 25th every year, National DNA Day aims to educate people about important scientific advances in genomics and how those advances may impact their lives. National DNA Day commemorates the successful completion of the Human Genome Project in 2003 and the discovery of DNA's double helix in 1953.
Young NHGRI investigators and post-docs share their early interest in science, their journey to the lab and what excites them about their work in a new video series called The Human Faces of Medical Research. LabTV, which produced the series with NIH, hopes the videos will encourage young people to pursue careers in science.
Informed consent is the basic and primary tool through which investigators communicate with each potential study participant and is vital to ensuring that the research purpose, any risks and possible benefits, or other implications of participation are understood. NHGRI's online Informed Consent Resource has helped thousands of researchers navigate the informed consent process since 2009. Now, the ICR has been updated to keep pace with advances in genomics over the past several years.
Following a four-month engagement at the Reuben H. Fleet Science Center in San Diego, the high-impact interactive exhibition, Genome: Unlocking Life's Code, is making its second stop in California. The exhibition will open at The Tech Museum of Innovation, in San Jose, on Jan. 22, 2015, where the public will be able to visit it through April 27, 2015.
Carla Easter, Ph.D., a biologist and science educator, has been named chief of the National Human Genome Research Institute (NHGRI) Education and Community Involvement Branch (ECIB). The branch is a part of NHGRI's Division of Policy, Communication and Education (DPCE). She will lead the division's program of genomics education and outreach activities that engage a variety of communities, from pre-college students, to teachers to members of the general public.
Last Updated: February 12, 2018