The 2020 ELSI Congress/ELSI Virtual Forum Organizing Committee included: Paul Appelbaum (Columbia University), Jonathan Berg (University of North Carolina), Joy Boyer (NHGRI), Larry Brody (NHGRI), Mildred Cho (Stanford University), Sam Cordner (Columbia University), Gail Henderson (University of North Carolina), Vanessa Hiratsuka (South Central Foundation), Steven Joffe (University of Pennsylvania), Dave Kaufman (NHGRI), Gabriel Lazaro-Munoz (Baylor College of Medicine), Sandra Soo-Jin Lee (Columbia University), Nicole Lockhart (NHGRI), Amy McGuire (Baylor College of Medicine), Osagie Obasogie (UC Berkeley), Aaron Panofsky (UCLA), Lisa Parker (University of Pittsburgh), Natalie Pino (NHGRI), James Tabery (University of Utah), Wendy Uhlmann (University of Michigan), and Rachel Yarmolinsky (Columbia University).Google Scholar

To provide a timely forum for accepted ELSI Congress 2020 proposals that could not be included in the ELSI Virtual Forum program, the organizing committee created a new virtual seminar series, ELSIconversations hosted by the Center for ELSI Resources and Analysis (CERA). CERA is funded by NHGRI (1U24HG010733-01) and is co-led by the Stanford Center for Biomedical Ethics and the Division of Ethics at Columbia University in partnership with The Hastings Center and the Personal Genetics Education Project (pgEd) at Harvard University. Recordings of work presented in the ELSIconversations series are hosted on ELSIhub.org, the CERA web platform.Google Scholar

Buck v. Bell, 274 U.S. 200 (1927).Google Scholar

Stern, A. M. et al., “California’s Sterilization Survivors: An Estimate and Call for Redress,” American Journal of Public Health 107, no. 1 (2017): 50–54.CrossRefGoogle ScholarPubMed

Novak, N. L., et al. “Disproportionate Sterilization of Latinos Under California’s Eugenic Sterilization Program, 1920–1945,” American Journal of Public Health 108, no. 5 (2018): 611–613.CrossRefGoogle ScholarPubMed

See Stern et al., supra note 4.Google Scholar

Char, D. S., Shah, N. H., and Magnus, D., “Implementing Machine Learning in Health Care — Addressing Ethical Challenges,” New England Journal of Medicine 378, no. 11 (2018): 981–983.CrossRefGoogle ScholarPubMed

Obermeyer, Z., Powers, B., Vogeli, C., and Mullainathan, S., “Dissecting Racial Bias in an Algorithm Used to Manage the Health of Populations,” Science 366, no. 6464 (2019): 447–453.CrossRefGoogle Scholar

Bustamante, C. D., De La Vega, F. M., and Burchard, E. G., “Genomics for the World,” Nature 475, no. 7355 (2011): 163–165; A. B. Popejoy and S. M. Fullerton. “Genomics is Failing on Diversity,” Nature 538, no. 7624 (2016): 161-164.CrossRefGoogle ScholarPubMed

Richards, C. T., Crawley, L. M., and Magnus, D., “Use of Neurodevelopmental Delay in Pediatric Solid Organ Transplant Listing Decisions: Inconsistencies in Standards Across Major Pediatric Transplant Centers,” Pediatric Transplantation 13, no. 7 (2009): 843–850.CrossRefGoogle ScholarPubMed

Murphy, E. and Tong, J. H., “The Racial Composition of Forensic DNA,” California Law Review 108, no. 6 (2020): 1847–1911.Google Scholar

Hazel, J. W., Clayton, E. W., Malin, B. A., and Slobogin, C., “Is it Time for a Universal Genetic Forensic Database?” Science 362, no. 6417 (2018): 898–900.CrossRefGoogle ScholarPubMed

Cukier, K. and Mayer-Schoenberger, V., “The Rise of Big Data: How It’s Changing the Way We Think About the World,” Foreign Affairs 92, no. 3 (2013): 28–40.Google Scholar

Clarke, R., “Information Technology and Dataveillance,” Communications of the ACM 31, no. 5 (1988): 498–512.CrossRefGoogle Scholar

Becker, J., Burik, C. A. P., Goldman, G., Wang, N., Jayashankar, H., Bennett, M., Belsky, D. W., Linnér, R. K., Ahlskog, R., Kleinman, A., Hinds, D. A., 23 and Me Research Group, et al., “Resource Profile and User Guide of the Polygenic Index Repository,” Nature Human Behaviour 5, no. 12 (2021): 1744–1758.CrossRefGoogle ScholarPubMed

Drabiak-Syed, K., “Lessons from the Havasupai Tribe v. Arizona State University Board of Regents: Recognizing Group, Cultural, and Dignity Harms as Legitimate Risks Warranting Integration into Research Practice,” Journal of Health and Biomedical Law 6, no. 2 (2010): 175–225.; G. R. Hook, “‘Warrior Genes’ and the Disease of Being Māori,” MAI Review 1, no. 2 (2009): 1-11; M. Hudson, “Changing Genes: Science and Being Māori,” MAI Review 1, no. 2 (2009): 1-3; T. Merriman and V. Cameron, “Risk-Taking: Behind the Warrior Gene Story,” The New Zealand Medical Journal 120, no. 1250 (2007): 59-61.Google Scholar

Garrison, N. A., Barton, K. S., Porter, K. M., Mai, T., Burke, W., and Carroll, S. R., “Access and Management: Indigenous Perspectives on Genomic Data Sharing,” Ethnicity & Disease 29, suppl. 3 (2019): 659–668.CrossRefGoogle ScholarPubMed

Garrison, N. A., Hudson, M., Ballantyne, L. L., Garba, I., Martinez, A., Taualii, M., Arbour, L., Caron, N. R., and Rainie, S. C., “Genomic Research through an Indigenous Lens: Understanding the Expectations,” Annual Review of Genomics and Human Genetics 20, no. 1 (2019): 495–517.CrossRefGoogle ScholarPubMed

Carroll, S. Russo, Garba, I., Figueroa-Rodríguez, O. L., Holbrook, J., Lovett, R., Materechera, S., Parsons, M., Raseroka, K., Rodriguez-Lonebear, D., Rowe, R., Sara, R., Walker, J. D., Anderson, J., and Hudson, M., “The CARE Principles for Indigenous Data Governance,” Data Science Journal 19 (2020): 1–12; M. Hudson, N. A. Garrison, R. Sterling, N. R. Caron, K. Fox, J. Yracheta, J. Anderson, P. Wilcox, L. Arbour, A. Brown, M. Taualii, T. Kukutai, R. Haring, B. Te Aika, G. S. Baynam, P. K. Dearden, D. Chagné, R. S. Malhi, I. Garba, N. Tiffin, D. Bolnick, M. Stott, A. K. Rolleston, L. L. Ballantyne, R. Lovett, D. David-Chavez, A. Martinez, A. Sporle, M. Walter, J. Reading, and S. Russo Carroll, “Rights, Interests and Expectations: Indigenous Perspectives on Unrestricted Access to Genomic Data,” Nature Reviews Genetics 21, no. 6 (2020): 377-384; L. Liggins, M. Hudson, and J. Anderson, “Creating Space for Indigenous Perspectives on Access and Benefit-Sharing: Encouraging Researcher Use of the Local Contexts Notices,” Molecular Ecology 30, no. 11 (2021): 2477-2482; K. S. Tsosie, J. M. Yracheta, and D. Dickenson, “Overvaluing Individual Consent Ignores Risks to Tribal Participants,” Nature Reviews Genetics 20, no. 9 (2019): 497-498.Google Scholar

Claw, K. G., Anderson, M. Z., Begay, R. L., Tsosie, K. S., Fox, K., and Garrison, N. A., “A Framework for Enhancing Ethical Genomic Research with Indigenous Communities,” Nature Communications 9, no. 1 (2018): 1–7.CrossRefGoogle ScholarPubMed

Morales, C. T., Muzquiz, L. I., Howlett, K., Azure, B., Bodnar, B., Finley, V., Incashola, T., Mathias, C., Laukes, C., Beatty, P., Burke, W., Pershouse, M. A., Putnam, E. A., Trinidad, S. Brown, James, R., and Woodahl, E. L., “Partnership with the Confederated Salish and Kootenai Tribes: Establishing an Advisory Committee for Pharmacogenetic Research,” Progress in Community Health Partnerships 10, no. 2 (2016): 173–183; E. L. Woodahl, L. J. Lesko, S. Hopkins, R. F. Robinson, K. E. Thummel, and W. Burke, “Pharmacogenetic Research in Partnership with American Indian and Alaska Native Communities,” Pharmacogenomics 15, no. 9 (2014): 1235-1241.CrossRefGoogle ScholarPubMed

James, R., Tsosie, R., Sahota, P., Parker, M., Dillard, D., Sylvester, I., Lewis, J., Klejka, J., Muzquiz, L., Olsen, P., Whitener, R., Burke, W., and Group, Kiana, “Exploring Pathways to Trust: A Tribal Perspective on Data Sharing,” Genetics in Medicine 16, no. 11 (2014): 820–826.CrossRefGoogle Scholar

See Morales et al., supra note 21; see Woodahl et al., supra note 21; Avey, J. P., Hiratsuka, V. Y., Beans, J. A., Trinidad, S. B., Tyndale, R. F., and Robinson, R. F., “Perceptions of Pharmacogenetic Research to Guide Tobacco Cessation by Patients, Providers and Leaders in a Tribal Healthcare Setting,” Pharmacogenomics 17, no. 4 (2016): 405–415.CrossRefGoogle Scholar

Guerrini, C. J., Robinson, J. O., Petersen, D., and Mcguire, A. L., “Should Police have Access to Genetic Genealogy Databases? Capturing the Golden State Killer and Other Criminals Using a Controversial New Forensic Technique,” PLoS Biology 16, no. 10 (2018): 1–9.CrossRefGoogle ScholarPubMed

Guerrini, C. J., Wickenheiser, R. A., Bettinger, B., Mcguire, A. L., and Fullerton, S. M., “Four Misconceptions about Investigative Genetic Genealogy,” Journal of Law and the Biosciences 8, no. 1 (2021): 1–18.CrossRefGoogle ScholarPubMed

The 2022 ELSI Congress Organizing Committee includes: 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), Gail Henderson (University of North Carolina), Steven Joffe (University of Pennsylvania), Angelica Johnson (Columbia University).Google Scholar

Dave Kaufman (NHGRI), Gabriel Lázaro-Muñoz (Baylor College of Medicine), Sandra Soo-Jin Lee (Columbia University), Nicole Lockhart (NHGRI), 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), Joe Vitti (Broad Institute, Harvard University, Massachusetts Institute of Technology), Alexis Walker (Columbia University), Rachel Yarmolinsky (Columbia University), and Joon-Ho Yu, (University of Washington).Google Scholar