NHGRI revamps state-level legislative database
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, February 12. Of note, this past September, we celebrated the 100th meeting of this council, during which we recognized the career of Bettie Graham, Ph.D., who we wish the best in retirement. To learn more about her remarkable career and the history of our institute, you can now watch Dr. Graham’s oral history on NHGRI’s YouTube channel, GenomeTV.
I am also delighted to announce that I am now on Instagram! You can find me at @nhgri_director. By following, you will get updates about the institute, highlights from my life as NHGRI director, and many, many photographs, including my “Wildlife Wednesday” routine. Many of you may not realize that I am a serious amateur photographer, with a particular fondness for wildlife photography.
All the best,
NHGRI revamps state-level legislative database
As genomics advances, relevant legislation must advance with it, such as new laws related to the use of genomics in healthcare and protections that preserve privacy and prevent discrimination. Many of these laws are being passed at the state level, and while multiple tools exist for organizing and searching federal-level legislation, fewer resources are available for state-level legislation. That is why in 2014, NHGRI created the Genome Statute and Legislation Database (GSLD), which recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level legislation related to genomics.
GSLD is a publicly available database that catalogues state-level legislation related to genetics and genomics. Without such a tool, one would need to search across the many legislative repositories of individual states. Additionally, most state-level legislative databases have limited information available or have barriers to access, such as paywalls. The lack of coordinated, publicly available repositories for state-level legislation on genetics and genomics was the initial reason that NHGRI created GSLD
The new updates significantly expand the volume of legislation catalogued in GSLD. The database contains over 1,200 entries, each detailing a statute or piece of legislation. More than 10% of these were added in this recent update. The revamp has also updated the current statuses of many pieces of legislation already included in GSLD, with the database now more accurately noting whether each is pending, vetoed, enacted or was otherwise not moved forward in a state’s legislative process.
This last metric, known as bill status, is one of the many searchable features in GSLD. Users can look up entries by keyword, state, bill status, or even topic. Some featured topics include employment and insurance discrimination, genetic data privacy, genetics and genomics research, and the use of genetics in law enforcement. The search results provide a quick summary along with the current statuses, and users can click the citation link to read the full text of any legislation or statute.
Using this database to track state-level trends can be helpful for understanding the direction of federal legislation. By tracking how different states have proposed or enacted laws related to specific topics, one can observe how interest in a particular topic ebbs and flows among different legislative bodies. For instance, as federal regulation about genetic testing evolves, there has been a complementary increase in state legislation regarding insurance coverage and reimbursement for genetic tests. These statutes and legislation vary from state to state, and GSLD helps to capture the current landscape.
Moving forward, GSLD will be reviewed and updated bi-weekly to add or update all relevant legislation as it emerges or changes. The database is managed by NHGRI’s Policy and Program Analysis Branch (PPAB), which is seeking feedback from the community and suggestions for additional changes that would enhance the database. Please reach out to PPAB Health Policy Analyst Kayla Titialii-Torres, Ph.D., with such suggestions.
New videos of scientific directors celebrate 30 years of NHGRI intramural research
From a draft of an organizational plan written on a napkin to a laboratory in the sub-subbasement to shredding up brochures at an institute retreat to an experiment titrating butter in a chocolate chip cookie mix, NHGRI’s current and former scientific directors had a wide-ranging discussion in a recently released two-part video. At NHGRI, the scientific director leads the institute’s robust Intramural Research Program (IRP), and over its 30-year existence, the IRP has had four scientific directors: Jefferey Trent, Ph.D.; Eric Green, M.D., Ph.D.; Dan Kastner, M.D., Ph.D.; and Charles Rotimi, Ph.D., who is the current scientific director. In their conversation, moderated by Office of Communications Director Sarah Bates, M.S., the four scientific directors discussed the history of the IRP, the important contributions of its researchers and administrators, the many hurdles and successes, and some fun stories along the way. Additionally, each scientific director reflected on how their leadership style contributed to shaping the IRP’s science and culture. Both parts of the video, recorded in 2023 to celebrate the IRP’s 30th anniversary, are now available on NHGRI’s YouTube channel, GenomeTV.
New report recommends ways to support the postdoctoral workforce
Over the past few years, there has been a perceived shortage of researchers with Ph.D. degrees seeking postdoctoral positions in the United States. An NIH working group was assembled to assess the factors that could be contributing to this situation. The working group solicited feedback from the most relevant communities, specifically current postdoctoral fellows and graduate students, and used the resulting information to formulate guiding principles and recommendations, which they issued in a report that was accepted at the December meeting of the NIH Advisory Committee to the Director. Major areas of concern included poor quality of life related to pay and cost of living, lack of accountability of postdoctoral mentors, and unclear career paths for postdoctoral fellows. The working group recommendations include improving the support of the postdoctoral scholar community through better pay and benefits, providing more training for postdoctoral fellows and their mentors, and measuring and monitoring career progression to better understand the issues and devise career support programs in the future.
Meeting explores future research directions related to the genetic architecture of human complex traits
In November 2023, NHGRI hosted a workshop on Advances in the Genetic Architecture of Complex Human Traits. Involving more than 60 researchers from a variety of disciplines, the workshop aimed to assess how genetics fits into the many ways that people vary in their risk for and expression of diseases and traits. The presentations and discussions were structured around the theme of levels of biological organization, ranging from cells and tissues to families and populations. Many talks covered research beyond humans, extending the discussion to other animals. For example, to learn what New England ticks or Belgian Blue cattle can do to inform our understanding of complex human traits, see the recordings of the workshop’s proceedings, which are now available on NHGRI’s YouTube channel, GenomeTV. In conjunction, NHGRI has also issued funding opportunities focused on developing novel theories and methods for studying the genetic architecture of human complex traits, and an executive summary and meeting report are also available on genome.gov.
Intramural trainees across NIH form new union
Trainees within the NIH Intramural Research Program have established a new union, NIH Fellows United-UAW. This new union represents over 5,000 intramural trainees at NIH, including postbaccalaureate, predoctoral, postdoctoral, and clinical fellows. The vote to unionize was certified by the U.S. Federal Labor Relations Authority at the end of 2023.
Building a vertically integrated genomic learning health system: The biobank at the Colorado Center for Personalized Medicine
Wiley et al.
Am J Hum Genet. 2024 Jan 4 PMID: 38181729
Precision medicine, often referred to as personalized medicine, represents a novel approach to clinical management that incorporates patients' genetic information, medical health records, and individual circumstances to tailor a more individualized medical plan for each patient. The effectiveness of a personalized medical system hinges on research using BioBanks — facilities that collect, store, and analyze large amounts of biological samples and the associated health information about the individuals who provided those samples. In this article, University of Colorado researchers describe the Colorado Center for Personalized Medicine, a BioBank derived from a highly diverse patient population. They pinpoint essential strategies for creating a successful BioBank and underscore the value of collaboration between clinicians and researchers in advancing the field of personalized medicine.
This research was funded in part by the NIH with a grant to Christopher Gignoux, Ph.D., who is a professor at the University of Colorado; that grant is part of the Investigator-Initiated Genomic Medicine Research Program (PAR-18-735).
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About The Genomics Landscape
A monthly update from the NHGRI Director on activities and accomplishments from the institute and the field of genomics.
Last updated: February 8, 2024