. 2018 Sep 6;28(Suppl 2):503-510.

doi: 10.18865/ed.28.S2.503. eCollection 2018.

Community Partnership in Precision Medicine: Themes from a Community Engagement Conference

Loretta Jones^{1

2}, Kenneth Wells³, Henry J Lin⁴, Christina Wang⁵, Audrey Kawaiopua Alo⁶, Pluscedia Williams^{1

2

5}, Felica Jones¹, Patricia I Dickson⁵, Sophia Han⁵, Dominga Pardo⁷, Keith Norris⁸, Andrea Jones^{1

2}, Aziza Wright^{1

2

9}, Kawen Young¹⁰, Jerome I Rotter⁴

Affiliations

¹ Healthy African American Families Phase II, Los Angeles, CA.
² Charles R. Drew University of Medicine and Science, Los Angeles, CA.
³ Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine, Semel Institute, Department of Health Policy and Management, Fielding School of Public Health, RAND Health Program, Los Angeles, CA.
⁴ Institute for Translational Genomics and Population Sciences, Los Angeles Biomedical Research Institute, Harbor-UCLA Medical Center, Torrance, CA.
⁵ Clinical and Translational Science Institute, Los Angeles Biomedical Research Institute/ Harbor-UCLA Medical Center, Torrance, CA.
⁶ Pacific Islander Health Partnership, Director, UCLA Clinical and Translational Institute, External Advisory Committee, Patient Advocate, Los Angeles, CA.
⁷ Robert F. Kennedy Institute, Wilmington, CA.
⁸ David Geffen School of Medicine at UCLA, Los Angeles, CA.
⁹ The RAND Corporation, Los Angeles, CA.
¹⁰ Native Hawaiian and Pacific Islander Alliance, Gardena, CA.

PMID: 30202204
PMCID: PMC6128349
DOI: 10.18865/ed.28.S2.503

Community Partnership in Precision Medicine: Themes from a Community Engagement Conference

Loretta Jones et al. Ethn Dis. 2018.

. 2018 Sep 6;28(Suppl 2):503-510.

doi: 10.18865/ed.28.S2.503. eCollection 2018.

Authors

Affiliations

¹ Healthy African American Families Phase II, Los Angeles, CA.
² Charles R. Drew University of Medicine and Science, Los Angeles, CA.
³ Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine, Semel Institute, Department of Health Policy and Management, Fielding School of Public Health, RAND Health Program, Los Angeles, CA.
⁴ Institute for Translational Genomics and Population Sciences, Los Angeles Biomedical Research Institute, Harbor-UCLA Medical Center, Torrance, CA.
⁵ Clinical and Translational Science Institute, Los Angeles Biomedical Research Institute/ Harbor-UCLA Medical Center, Torrance, CA.
⁶ Pacific Islander Health Partnership, Director, UCLA Clinical and Translational Institute, External Advisory Committee, Patient Advocate, Los Angeles, CA.
⁷ Robert F. Kennedy Institute, Wilmington, CA.
⁸ David Geffen School of Medicine at UCLA, Los Angeles, CA.
⁹ The RAND Corporation, Los Angeles, CA.
¹⁰ Native Hawaiian and Pacific Islander Alliance, Gardena, CA.

PMID: 30202204
PMCID: PMC6128349
DOI: 10.18865/ed.28.S2.503

Abstract

Background: Patient and community engagement in under-resourced communities is a key issue for precision medicine research. We report proceedings from a community-academic partnered conference in Los Angeles to promote community understanding of precision medicine and generate engagement recommendations.

Methods: Planning group review of planning, presentations, and audience discussions from facilitator notes and participant survey data from a one-day conference.

Findings: Community-academic planning broadened community participation and presentations. More than 80% of survey participants indicated they would participate in the national precision medicine initiative, and most were willing to share diverse sources of data. Discussions identified trust concerns related to historical research abuses, data privacy, potential effects of findings on health care, personal safety, research procedures, the time-frame for benefit, and confusion about different initiatives. Concerns were balanced by belief in science to improve health. Recommendations included a community partnered participatory approach with support for local community and academic teams to engage stakeholders with written/online resources and partnered workgroups addressing key concerns.

Conclusion: Conference participants expressed high willingness to participate in precision medicine studies, but discussions highlighted trust and transparency issues and suggested community partnered research with local capacity building.

Keywords: Community Engagement; Partnered Research; Precision Medicine; Research Ethics; Under-resourced Communities.

PubMed Disclaimer

Conflict of interest statement

Competing Interests: None declared.

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Community Partnership in Precision Medicine: Themes from a Community Engagement Conference

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Community Partnership in Precision Medicine: Themes from a Community Engagement Conference

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