U.S. Department of Health & Human Services
All of Us has released a white paper building on the June 2019 ELSI workshop learnings and insights.
The All of Us Research Program’s Policy Office will be hosting its Ethical, Legal, and Social Implications (ELSI) Priorities Workshop on June 24-25, 2019. All of Us is committed to advancing efforts to identify and assess the ethical, legal, and social issues in research using the All of Us data resources to benefit both the program and the broader research community. The workshop is a two-day endeavor to help All of Us refine its ELSI goals.
The agenda will include a series of speakers, including a keynote by Stephanie Devaney, PhD, the Deputy Director. Additionally, the workshop will feature talks from key All of Us staff and consortia members to provide a deeper overview of the program’s many parts. For the rest of the workshop, attendees will break out into working groups dedicated to three topic areas: genomics, social determinants of health, and regulatory and legal policy. These working group sessions will address crucial ELSI research questions pertinent to All of Us and the information and tools needed to answer them.
Workshop attendees will include ELSI experts, consortia members, federal staff from the National Institutes of Health and Health and Human Services, citizen and community scientists, participant ambassadors, and early career ELSI researchers. Attendees will explore the All of Us data resources in detail, including the data architecture and data types, highlighting any additional data collection, data structural changes, and research tools needed to advance ELSI research. The workshop’s open sessions will be streamed via NIH Videocast and archived for on-demand viewing. We will interact with our viewers through Twitter using the hashtag #JoinAllofUs. We urge you join the conversation, leave us your questions, and provide us your feedback.
View ELSI Workshop Agenda.
View ELSI Workshop Summary.
For more information, please contact AOUELSI@od.nih.gov
Resources for Workshop Attendees
Please explore these sites to learn more about the All of Us Research Hub, data browser, data sources, and overview of participant characteristics and types of data collected from participants.
General (All participants)
- The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues.
Sankar PL, Parker LS. Genet Med. 2017;19(7):743-750. PMID:27929525
Genomics Workstream
- Precisely where are we going? charting the new terrain of precision prevention.
Meagher KM, McGowan ML, Settersten RA Jr, Fishman JR, Juengst ET. Annu Rev Genomics Hum Genet. 2017;18: 369-387. PMID: 28441061
- Clinical use of current polygenic risk scores may exacerbate health disparities.
Martin AR, Kanai M, Kamatani Y, Okada Y, Neale BM, Daly MJ. Nat Genet. 2019;51(4):584-591. PMID:30926966
Social Determinants Workstream
- Translational health disparities research in a data-rich world PDF | 486.77 KB.
Breen NS, Jackson JS, Wood F, Wong DWS, Zhang X and The Data in Health Disparities Writing Team. American Journal of Public Health. 2019;109(S1): S41–S42
- Integrating social and medical care: could it worsen health and increase inequity?
Gottlieb LM, Alderwick H. Ann Fam Med. 2019;17(1):77-8. PMID:30670400
Policy/Legal Workstream
- Tensions in ethics and policy created by National Precision Medicine Programs.
Minari J, Brothers KB, Morrison M. Hum Genomics. 2018;12(1):22. DOI: 0.1186/s40246-018-0151-9. PMID: 29665847
- Citizen science on your smartphone: an ELSI research agenda.
Rothstein MA, Wilbanks JT, Brothers KB. J Law Med Ethics. 2015;43(4):897-903. PMID:26711425
- The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues.
Sankar PL, Parker LS. Genet Med. 2017;19(7):743-750. PMID:27929525
Genomics Workstream
- The approach to predictive medicine that is taking genomics research by storm.
Warren M. Nature. 2019;562(7752):181-183. DOI: 10.1038/d41586-018-06956-3.
- Facing up to injustice in genome science.
Guglielmi G. Nature. 2019;568(7752):290-293. DOI: 10.1038/d41586-019-01166-x.
Social Determinants Workstream
- Social determinants of health in the digital age: Determining the source for nurture.
Abnousi F, Rumsfeld JS, Krumholz HM. JAMA. 2019; 321(3):247-248. DOI: 10.001/jama.2018.19763.
- Precision medicine's post-racial promise.
Newkirk II VR. https://www.theatlantic.com/politics/archive/2016/06/precision-medicine-race-future/486143/. Published June 8, 2016. Accessed June 17, 2019.
Policy/Legal Workstream
- The US urgently needs new genetic privacy laws.
Molteni M. https://www.wired.com/story/the-us-urgently-needs-new-genetic-privacy-laws/. Published May 1, 2019. Accessed June 17, 2019
- Tensions in ethics and policy created by National Precision Medicine Programs.
Minari J, Brothers KB, Morrison M. Hum Genomics. 2018 Apr 17;12(1):22. doi: 10.1186/s40246-018-0151-9. PMID: 29665847
General
- A new initiative on precision medicine.
Collins FS, Varmus H. N Engl J Med. 2015;372(9):793-5. PMID:25635347
- Thought leader perspectives on benefits and harms in precision medicine research.
Beskow LM, Hammack CM, Brelsford KM. PLoS One. 2018;13(11): e0207842. DOI: 10.1371/journal.pone.0207842. PMID:30475858
- Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence.
Sabatello M. J Community Genet. 2018. DOI: 10.1007/s12687-018-0402-4. [Epub ahead of print] PMID:30539340
Genomics Workstream
- Genomics is failing on diversity.
Popejoy AB, Fullerton SM. Nature. 2016;538:161-164. PMID:27734877
- Genomic research through an indigenous lens: understanding the expectations.
Garrison NA, Hudson M, Ballantyne LL, Garba I, Martinez A, Taualii M, Arbour L, Caron NR, Carroll Rainie S. Annu Rev Genomics Hum Genet. 2019 Mar. DOI 10.1146/annurev-genom-083118-015434. [Epub ahead of print] PMID: 30892943
- The precision medicine nation.
Sabatello M, Appelbaum PS. Hastings Cent Rep. 2017;47(4):19-29. PMID:28749054
Social Determinants Workstream
- Patient monitoring, big data, and the future of healthcare.
DeAngelis, SF. https://www.wired.com/insights/2014/08/patient-monitoring-big-data-future-healthcare/. Published August 6, 2014. Accessed June 14, 2019.
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The overhyping of precision medicine.
Comfort, N. https://www.theatlantic.com/health/archive/2016/12/the-peril-of-overhyping-precision-medicine/510326/. Piblished December 12, 2016. Accessed June 14, 2019. - Will precision medicine improve population health?
Khoury MJ, Galea S. JAMA. 2016;316(13):1357-1358. DOI: 10.1001/jama.2016.12260. PMID:27541310
- From the outside in: Biological mechanisms linking social and environmental exposures to chronic disease and to health disparities PDF | 715.87
Bagby SF, Martin D, Chung ST, and Rajapakse N. American Journal of Public Health. 2019;09(S1):S56–S63
- Convergence of implementation science, precision medicine, and the learning health care system: a New model for biomedical research.
Chambers DA, Feero WG, Khoury MJ. JAMA. 2016;315(18):1941-2. PMID: 27163980
- Big data hurdles in precision medicine and precision public health.
Mattia Prosperi, Jae S. Min, Jiang Bian, and François Modave. BMC Medical Informatics and Decision Making. 2018;18:139
Policy/Legal Workstream
- Precision medicine and the changing role of regulatory agencies.
Breckenridge A, Eichler HG, Jarow JP. Nat Rev Drug Discov. 2016;15(12):805-806. PMID:27739512
