The National Human Genome Research Institute’s Genetics/Genomics Competency Center (G2C2) has been a valued resource for healthcare provider educators and learners alike for over 10 years. The resource, now called GenomeEd, has recently undergone a refresh to make it easier for educators and current practitioners to find high-quality resources for group instruction or self-directed learning.
Learn more on the National Human Genome Research Institute website.
Sabrina N. Powell, Grace Byfield, Ashley Bennetone, Annabelle M. Frantz, Langston K. Harrison, Erin R. James-Crook, Heather Osborne, Thomas H. Owens, Jonathan L. Shaw, Julianne O’Daniel, and Laura V. Milko
Recent advances in genomic sequencing and genomic medicine are reshaping the landscape of clinical care. As a screening modality, genetic sequencing has the potential to dramatically expand the clinical utility of newborn screening (NBS), though significant barriers remain regarding ethical, legal, and social implications (ELSI) and technical and evidentiary challenges. Stakeholder-informed implementation research is poised to grapple with many of these barriers, and parents are crucial stakeholders in this process. We describe the formation and activities of a Community Research Board (CRB) composed of parents with diverse backgrounds assembled to participate in an ongoing research partnership with genomic and public health researchers at the University of North Carolina. The mission of the CRB is to provide insight into parental perspectives regarding the prospect of adding genomic sequencing to NBS and collaboratively develop strategies to ensure its equitable uptake. We describe how these contributions can improve the accessibility of research and recruitment methods and promote trust and inclusivity within diverse communities to maximize the societal benefit of population genomic screening in healthy children.
Read the full article in Frontiers in Genetics.
Keywords: genomic sequencing, newborn screening, community research board, engaging parents, stakeholders, public health, equity, accessibility
Caitlin G. Allen, Daniel P. Judge, Elissa Levin, Katherine Sterba, Kelly Hunt, Paula S. Ramos, Cathy Melvin, Karen Wager, Kenneth Catchpole, Catherine Clinton, Marvella Ford, Lori L. McMahon, and Leslie Lenert
Caitlin G. Allen, Leslie Lenert, Kelly Hunt, Amy Jackson, Elissa Levin, Catherine Clinton, John T. Clark, Kelli Garrison, Sam Gallegos, Karen Wager, Wenjun He, Katherine Sterba, Paula S. Ramos, Cathy Melvin, Marvella Ford, Kenneth Catchpole, Lori McMahon, and Daniel P. Judge
DOI: 10.3390/jpm12081228
The World Health Organization (WHO) Science Council of experts has issued its first report, on accelerating access to genomics for global health. The report argues that it is not justifiable ethically or scientifically for less-resourced countries to gain access to such technologies long after rich countries do.
The field of genomics uses methods from biochemistry, genetics, and molecular biology to understand and use biological information in DNA and RNA, with benefits for medicine and public health – especially during the COVID-19 pandemic – as well as agriculture, biological research and more. The report calls for expanding access to genomic technologies, particularly in low- and middle-income countries (LMICs), by addressing shortfalls in financing, laboratory infrastructure, materials, and highly trained personnel.
Read the full article and the Science Council’s report on the WHO website.
In June, the National Human Genome Research Institute (NHGRI) concluded the seven-part virtual “Genomics and the Media Seminar Series.” The series featured trailblazers in science communication. Each speaker, an expert in communicating about genomics across media – including radio, podcasting, writing, speaking, publishing, and everything in between – was provided the opportunity to talk about what it is like to cover genomics today, such as the special challenges in reporting about such a quickly growing scientific field, and how that has changed since the Human Genome Project. The series aimed to demonstrate the various approaches for communicating about genomics as well as the unique challenges and opportunities each medium can bring. The seminars attracted an average of 150 live attendees and each included a robust moderated question-and-answer session. The recordings of all seven seminars are available for viewing on GenomeTV.
On June 13, Dr. Andrés Moreno Estrada delivered a lecture for the Genomics and Health Disparities Lecture Series, co-sponsored by institutes in the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).
The Genomics and Health Disparities Lecture Series was formed to enhance opportunities for dialogue about how innovations in genomics research and technology can impact health disparities. Topics range from basic science to translational research.
View Dr. Moreno’s session and other recordings on the NHGRI’s website.
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