Inconvenient sampling: Community-engaged and restorative justice approaches to genetic counseling student research

被引:5
作者
Zayhowski, Kimberly [1 ,2 ]
Glanton, Emily [2 ,3 ]
Macfarlane, Ian M. [2 ]
Pratt, Rebekah [4 ]
Lumpkins, Crystal Y. [5 ]
Zierhut, Heather [2 ]
机构
[1] Boston Univ, Chobanian & Avedisian Sch Med, Dept Obstet & Gynecol, Boston, MA 02215 USA
[2] Univ Minnesota, Dept Genet Cell Biol & Dev, Minneapolis, MN 55455 USA
[3] Harvard Med Sch, Dept Biomed Informat, Boston, MA USA
[4] Univ Minnesota, Dept Family Med & Community Hlth, Minneapolis, MN USA
[5] Univ Utah, Huntsman Canc Inst, Dept Commun, Salt Lake City, UT USA
基金
美国国家卫生研究院;
关键词
community-engaged research; diversity; education; genetic counseling; patient-oriented research; restorative justice; PARTICIPATORY RESEARCH; HEALTH; SCIENTISTS; EDUCATION; OUTREACH;
D O I
10.1002/jgc4.1869
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Genetic counseling research requires a comprehensive approach since it frequently serves as the foundation for clinical care practice. Genetic counseling students play a pivotal role in advancing the profession, as they contribute a significant proportion of the research conducted within the genetic counseling community. However, a prevailing trend of convenience sampling of genetic counselors has limited the diversity of perspectives in student research projects. This article promotes a strategy for greater inclusivity and equity in research by emphasizing community-engaged and empowered research through the perspective of restorative justice. Reflecting on the shadow of the harmful ideologies of eugenics in our profession underscores the need to amplify patients' voices and diverse experiences. Community-engaged research-in collaboration with individuals, families, and communities directly impacted by genetic counseling-transcends traditional research paradigms, empowering patients and addressing systemic inequities. Incorporating community-engaged research into genetic counseling student projects aims to empower future professionals to better understand patient perspectives and needs while working toward addressing historical injustices. This article explores the potential benefits and pathways of incorporating community-engaged research and restorative justice principles into genetic counseling scholarly work, promoting empathy, cultural responsiveness, and ultimately, a more patient-centered approach to research and clinical care. By embracing this collective journey toward authentic partnership in the production of high-quality evidence in genetic counseling student research and more broadly, genetic counseling can become a more just and inclusive practice.
引用
收藏
页数:9
相关论文
共 50 条
[21]   Building a Narrative of Equity: Weaving Indigenous Approaches into Community-Engaged Research [J].
Hardy, Lisa J. ;
Shaw, Kevin ;
Hughes, Amy ;
Hulen, Elizabeth ;
Sanderson, Priscilla R. ;
Corrales, Candi ;
Pinn, Travis ;
Esplain, Jamie ;
Begay, R. Cruz .
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH, 2020, 17 (14) :1-9
[22]   Dental student perceptions of teamwork during a community-engaged interprofessional learning experience [J].
Raponi, Jayne-Marie ;
Black, Erik W. ;
Rush, Caronne C. ;
Childs, Gail Schneider ;
Blue, Amy V. .
EUROPEAN JOURNAL OF DENTAL EDUCATION, 2023, 27 (01) :56-62
[23]   Action Learning Cohort Series: An Innovative Community-Engaged Approach for Translating Research Into Practice [J].
Young, Tiffany L. ;
Carter-Edwards, Lori ;
Frerichs, Leah ;
Green, Melissa A. ;
Hassmiller-Lich, Kristen ;
Quarles, Elisa ;
Dave, Gaurav ;
Corbie-Smith, Giselle .
HEALTH PROMOTION PRACTICE, 2021, 22 (01) :63-71
[24]   Aligning Community-Engaged Research to Context [J].
London, Jonathan K. ;
Haapanen, Krista A. ;
Backus, Ann ;
Mack, Savannah M. ;
Lindsey, Marti ;
Andrade, Karen .
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH, 2020, 17 (04)
[25]   Community-Engaged Research Perspectives: Then and Now [J].
Barkin, Shari ;
Schlundt, David ;
Smith, Padget .
ACADEMIC PEDIATRICS, 2013, 13 (02) :93-97
[26]   Fostering Community-Engaged Research on Criminal Legal Innovations with Logic Models [J].
Epperson, Matthew W. ;
Guz, Samantha ;
Sarantakos, Sophia P. .
SOCIAL WORK, 2023, 68 (04) :307-319
[27]   RESEARCH ETHICS EDUCATION FOR COMMUNITY-ENGAGED RESEARCH: A REVIEW AND RESEARCH AGENDA [J].
Anderson, Emily E. ;
Solomon, Stephanie ;
Heitman, Elizabeth ;
DuBois, James M. ;
Fisher, Celia B. ;
Kost, Rhonda G. ;
Lawless, Mary Ellen ;
Ramsey, Cornelia ;
Jones, Bonnie ;
Ammerman, Alice ;
Ross, Lainie Friedman .
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS, 2012, 7 (02) :3-19
[28]   Community-Engaged Economics Research for the Clean Energy Transition [J].
Spiller, Elisheba ;
Hernandez-Cortes, Danae ;
Khanna, Neha ;
Mohebbi, Mehri .
REVIEW OF ENVIRONMENTAL ECONOMICS AND POLICY, 2025,
[29]   Waimanalo Pono Research: Indigenizing Community-Engaged Research with a Native Hawaiian Community [J].
Chung-Do, Jane J. ;
Scott, Samantha Keaulana ;
Ho-Lastimosa, Ilima ;
Deitschman, Kirk ;
Vegas, J. Kahau ;
Keli'iholokai, LeShay ;
Rogerson, Ikaika ;
Radovich, Theodore ;
Ho, Kenneth, Jr. ;
Ho, A. Hi'ipoi ;
Antonio, Mapuana C. K. .
GENEALOGY, 2022, 6 (04)
[30]   Data sharing in the context of community-engaged research partnerships [J].
Emmons, Karen M. ;
Mendez, Samuel ;
Lee, Rebekka M. ;
Erani, Diana ;
Mascioli, Lynette ;
Abreu, Marlene ;
Adams, Susan ;
Daly, James ;
Bierer, Barbara E. .
SOCIAL SCIENCE & MEDICINE, 2023, 325