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

Kimberly Zayhowski, Emily Glanton, Ian M. MacFarlane, Rebekah J Pratt, Crystal Y. Lumpkins, Heather Zierhut

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


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.

Original languageEnglish (US)
JournalJournal of Genetic Counseling
StateAccepted/In press - 2024

Bibliographical note

Publisher Copyright:
© 2024 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.


  • community-engaged research
  • diversity
  • education
  • genetic counseling
  • patient-oriented research
  • restorative justice

PubMed: MeSH publication types

  • Journal Article


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