Engaging community stakeholders in research on best practices for clinical genomic sequencing

被引：9

作者：

Griesemer, Ida ^{[1
,2
]}

Staley, Brooke S. ^{[3
]}

Lightfoot, Alexandra F. ^{[1
,4
]}

Bain, Lizzy

Byrd, Derrick ^{[5
]}

Conway, Carol ^{[6
]}

Grant, Tracey L. ^{[7
]}

Leach, Barbara ^{[8
]}

Milko, Laura ^{[7
]}

Mollison, Lonna ^{[7
]}

Porter, Nadiah

Reid, Sharron ^{[9
]}

Smith, Gerri

Waltz, Margaret ^{[10
]}

Berg, Jonathan S. ^{[7
]}

Rini, Christine ^{[11
,12
]}

O'Daniel, Julianne M. ^{[7
]}

机构：

[1] Univ N Carolina, Dept Hlth Behav, Chapel Hill, NC 27599 USA

[2] Univ N Carolina, Cecil G Sheps Ctr Hlth Serv Res, Chapel Hill, NC 27599 USA

[3] Univ N Carolina, Dept Epidemiol, Chapel Hill, NC USA

[4] Univ N Carolina, Ctr Hlth Promot & Dis Prevent, Chapel Hill, NC USA

[5] Family Resource Ctr South Atlantic, Raleigh, NC USA

[6] Parent Advocates Adult Children Intellectual & De, Chapel Hill, NC USA

[7] Univ N Carolina, Dept Genet, Chapel Hill, NC USA

[8] Univ N Carolina, Sch Social Work, Family Support Program, Chapel Hill, NC USA

[9] Wake Cty Sickle Cell Support Grp, Raleigh, NC USA

[10] Univ N Carolina, Dept Social Med, Chapel Hill, NC USA

[11] Northwestern Univ, Dept Med Social Sci, Feinberg Sch Med, Chicago, IL 60611 USA

[12] Northwestern Univ, Robert H Lurie Comprehens Canc Ctr, Chicago, IL 60611 USA

来源：

PERSONALIZED MEDICINE | 2020年 / 17卷 / 06期

基金：

美国医疗保健研究与质量局;

关键词：

clinical trial; community-academic partnerships; community engagement; diagnostic odyssey; genetics; genomic sequencing; health equity; health services research; precision medicine; underserved populations; AFRICAN-AMERICANS; ENGAGEMENT; PARTICIPATION; LESSONS; LEGACY; RECRUITMENT; BIOBANKING; FAMILIES; PROJECT; POLICY;

D O I：

10.2217/pme-2020-0074

中图分类号：

R9 [药学];

学科分类号：

1007 ;

摘要：

Aim:Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study.Methods:A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed.Results:Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population.Discussion:This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants.

引用

页码：435 / 444

页数：10

共 34 条

[1] The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations
Amendola, Laura M.
Berg, Jonathan S.
Horowitz, Carol R.
Angelo, Frank
Bensen, Jeannette T.
Biesecker, Barbara B.
Biesecker, Leslie G.
Cooper, Gregory M.
East, Kelly
Filipski, Kelly
Fullerton, Stephanie M.
Gelb, Bruce D.
Goddard, Katrina A. B.
Hailu, Benyam
Hart, Ragan
Hassmiller-Lich, Kristen
Joseph, Galen
Kenny, Eimear E.
Koenig, Barbara A.
Knight, Sara
Kwok, Pui-Yan
Lewis, Katie L.
McGuire, Amy L.
Norton, Mary E.
Ou, Jeffrey
Parsons, Donald W.
Powell, Bradford C.
Risch, Neil
Robinson, Mimsie
Rini, Christine
Scollon, Sarah
Slavotinek, Anne M.
Veenstra, David L.
Wasserstein, Melissa P.
Wilfond, Benjamin S.
Hindorff, Lucia A.
Plon, Sharon E.
Jarvik, Gail P.
[J]. AMERICAN JOURNAL OF HUMAN GENETICS, 2018, 103 (03) : 319 - 327
[2] Engaging Maori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities
Beaton, Angela
Hudson, Maui
Milne, Moe
Port, Ramari Viola
Russell, Khyla
Smith, Barry
Toki, Valmaine
Uerata, Lynley
Wilcox, Phillip
Bartholomew, Karen
Wihongi, Helen
[J]. GENETICS IN MEDICINE, 2017, 19 (03) : 345 - 351
[3] Lessons from HeLa Cells: The Ethics and Policy of Biospecimens
Beskow, Laura M.
[J]. ANNUAL REVIEW OF GENOMICS AND HUMAN GENETICS, VOL 17, 2016, 17 : 395 - 417
[4] RACISM AND RESEARCH - CASE OF TUSKEGEE SYPHILIS STUDY
BRANDT, AM
[J]. HASTINGS CENTER REPORT, 1978, 8 (06) : 21 - 29
[5] Increasing Participation in Genomic Research and Biobanking Through Community-Based Capacity Building
Cohn, Elizabeth Gross
Husamudeen, Maryam
Larson, Elaine L.
Williams, Janet K.
[J]. JOURNAL OF GENETIC COUNSELING, 2015, 24 (03) : 491 - 502
[6] Practical Guidance for Involving Stakeholders in Health Research
Concannon, Thomas W.
Grant, Sean
Welch, Vivian
Petkovic, Jennifer
Selby, Joseph
Crowe, Sally
Synnot, Anneliese
Greer-Smith, Regina
Mayo-Wilson, Evan
Tambor, Ellen
Tugwell, Peter
[J]. JOURNAL OF GENERAL INTERNAL MEDICINE, 2019, 34 (03) : 458 - 463
[7] A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research
Concannon, Thomas W.
Fuster, Melissa
Saunders, Tully
Patel, Kamal
Wong, John B.
Leslie, Laurel K.
Lau, Joseph
[J]. JOURNAL OF GENERAL INTERNAL MEDICINE, 2014, 29 (12) : 1692 - 1701
[8] The continuing legacy of the Tuskegee Syphilis Study: Considerations for clinical investigation
Corbie-Smith, G
[J]. AMERICAN JOURNAL OF THE MEDICAL SCIENCES, 1999, 317 (01) : 5 - 8
[9] Evaluation of literacy level of patient education pages in health-related journals
Cotugna, N
Vickery, CE
Carpenter-Haefele, KM
[J]. JOURNAL OF COMMUNITY HEALTH, 2005, 30 (03) : 213 - 219
[10] Toward clinical genomics in everyday medicine: perspectives and recommendations
Delaney, Susan K.
Hultner, Michael L.
Jacob, Howard J.
Ledbetter, David H.
McCarthy, Jeanette J.
Ball, Michael
Beckman, Kenneth B.
Belmont, John W.
Bloss, Cinnamon S.
Christman, Michael F.
Cosgrove, Andy
Damiani, Stephen A.
Danis, Timothy
Delledonne, Massimo
Dougherty, Michael J.
Dudley, Joel T.
Faucett, W. Andrew
Friedman, Jennifer R.
Haase, David H.
Hays, Tom S.
Heilsberg, Stu
Huber, Jeff
Kaminsky, Leah
Ledbetter, Nikki
Lee, Warren H.
Levin, Elissa
Libiger, Ondrej
Linderman, Michael
Love, Richard L.
Magnus, David C.
Martland, AnneMarie
McClure, Susan L.
Megill, Scott E.
Messier, Helen
Nussbaum, Robert L.
Palaniappan, Latha
Patay, Bradley A.
Popovich, Bradley W.
Quackenbush, John
Savant, Mark J.
Su, Michael M.
Terry, Sharon F.
Tucker, Steven
Wong, William T.
Green, Robert C.
[J]. EXPERT REVIEW OF MOLECULAR DIAGNOSTICS, 2016, 16 (05) : 521 - 532

← 1 2 3 4 →