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

Author:

Zayhowski Kimberly12ORCID,Glanton Emily23ORCID,MacFarlane Ian M.2ORCID,Pratt Rebekah4ORCID,Lumpkins Crystal Y.5ORCID,Zierhut Heather2ORCID

Affiliation:

1. Department of Obstetrics and Gynecology Boston University Chobanian & Avedisian School of Medicine Boston Massachusetts USA

2. Department of Genetics, Cell Biology, and Development University of Minnesota Minneapolis Minnesota USA

3. Department of Biomedical Informatics Harvard Medical School Boston Massachusetts USA

4. Department of Family Medicine and Community Health University of Minnesota Minneapolis Minnesota USA

5. Department of Communication, Huntsman Cancer Institute University of Utah Salt Lake City Utah USA

Abstract

AbstractGenetic 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.

Funder

National Human Genome Research Institute

Publisher

Wiley

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