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.

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. 

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.

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.

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.