New 5th ELSI Congress Special Issue of AJOB Empirical Bioethics
We are pleased to announce the publication of a special issue of the AJOB Empirical Bioethics.
This special issue includes four primary research papers, which were initially presented at the 5th ELSI Congress: Innovating for a Just and Equitable Future held June 1–3, 2022, a biennial conference supported by the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) and organized by the ELSI Congress 2022 Organizing Committee.1
After the congress, the Center for ELSI Resources and Analysis (CERA) issued a separate call for papers devoted to the congress theme of advancing equity and justice for this issue. We invited all conference presenters to submit a proposal for an article based on their congress presentation. Four proposals were selected by the journal for inclusion. To contextualize these four papers, CERA added a report of results from its empirical study of the results dissemination goals and practices of ELSI researchers and an invited editorial by Rajagopalan, Cakici, and Bloss that envisions a future in which empirical ELSI research is deployed early and continuously in the translation pipeline to ensure the alignment of the goals of publicly funded science with local, public interests.
Authors in this issue highlight gaps in our knowledge about the broadening set of genomic medicine users, including how they interact with, and what they would need to overcome, access barriers at the health system and provider level.
Editorials:
- Dolan, D. D., Cho, M. K., & Lee, S. S.-J. Spotlighting structural constraints on decisions about participation in genomic and precision medicine.
- Rajagopalan, R. M., Cakici, J., & Bloss, C. S. A vision for empirical ELSI along the R&D pipeline.
Research Articles:
- Coulombe, F., & Laberge, A.-M. The need to consider context: A systematic review of factors involved in the consent process for genetic tests from the perspective of patients.
- McMahon, C., Foti, N., Jeske, M., Britton, W. R., Fullerton, S. M., Shim, J. K., & Lee, S. S.-J. Interrogating the value of return of results for diverse populations.
- Thomas, S. P., Fletcher, F. E., Willard, R., Ranson, T. M., & Bonham, V. L. Patient perceptions on the advancement of noninvasive prenatal testing for sickle cell disease among Black women in the United States.
- Oladayo, A. M., Prochaska, S., Busch, T., Adeyemo, W. L., Gowans, L. J. J., Eshete, M., Awotoye, W., Sule, V., Alade, A., Adeyemo, A. A., Mossey, P. A, Prince, A., Murray, J. C., & Butali, A. Parents and provider perspectives on the return of genomic findings for cleft families in Africa.
- Dolan, D. D., Lee, R. H., Cho, M. K., & Lee, S. S.-J. Understanding the gap: A cross-sectional survey of ELSI scholars’ dissemination practices and translation goals.
1 The ELSI Congress was co-directed by Sandra Soo-Jin Lee and Mildred Cho, who convened an organizing committee that included Dounya Alami-Nassif (Columbia University), Paul Appelbaum (Columbia University), Jessica Blanchard (University of Oklahoma), Joy Boyer (NHGRI), Larry Brody (NHGRI), Shawneequa Callier (George Washington University), Mildred Cho (Stanford University), Deanne Dunbar Dolan (Stanford University), Gail Henderson (University of North Carolina), Steven Joffe (University of Pennsylvania), Angelica Johnson (Columbia University), Dave Kaufman (NHGRI), Gabriel Lázaro-Muñoz (Harvard Medical School), Sandra Soo-Jin Lee (Columbia University), Nicole Lockhart (NHGRI), Caroline Moore (Stanford University), Osagie Obasogie (UC Berkeley), Lisa Parker (University of Pittsburgh), Kayte Spector-Bagdady (University of Michigan), Rene Sterling (NHGRI), James Tabery (University of Utah), Wendy Uhlmann (University of Michigan), Emily Van Poetsch (Stanford University), Joe Vitti (Broad/Harvard/MIT), Alexis Walker (Columbia University), Joon-Ho Yu (University of Washington), and Rachel Yarmolinsky (Columbia University).
