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

被引:1
|
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
  • [1] Experience conducting a community-engaged student research project involving an underrepresented community: A reflective essay
    Grieve, LilyAnne M.
    Murthy, Vinaya S.
    JOURNAL OF GENETIC COUNSELING, 2023, 32 (06) : 1232 - 1237
  • [2] Technology and community-engaged research
    Brown, Mary Ellen
    Dinecola, Cassie
    JOURNAL OF TECHNOLOGY IN HUMAN SERVICES, 2020, 38 (01) : 3 - 21
  • [3] Review of Community-Engaged Research in Pediatric Diabetes
    Butler, Ashley M.
    Hilliard, Marisa E.
    Comer-HaGans, DeLawnia
    CURRENT DIABETES REPORTS, 2018, 18 (08)
  • [4] Symposium on Community-Engaged Environmental Justice Rhetorics
    Walker, Kenneth
    Casas, Ruben
    Hinojosa, Carolina
    King-Kostelac, Amelia
    RHETORIC REVIEW, 2024, 43 (04) : 227 - 302
  • [5] Community-Engaged Research and Evaluation in Counseling: Building Partnerships and Applying Program Evaluation
    Minton, Casey A. Barrio
    Gibbons, Melinda M.
    Hightower, Jennifer M.
    JOURNAL OF COUNSELING AND DEVELOPMENT, 2021, 99 (02) : 210 - 220
  • [6] Community-Engaged Research for Economic Justice: Reflections on Concepts and Practices
    Bertram, Eva
    Bullock, Heather E.
    SOCIAL SCIENCES-BASEL, 2023, 12 (09):
  • [7] Aligning Community-Engaged Research Methods with Diverse Community Organizing Approaches
    Raphael, Chad
    Matsuoka, Martha
    SOCIAL SCIENCES-BASEL, 2023, 12 (06):
  • [8] Research and scholarly methods: Community-engaged research
    Moczygemba, Leticia R.
    Singh, Reshmi L.
    Baffoe, James O.
    JOURNAL OF THE AMERICAN COLLEGE OF CLINICAL PHARMACY, 2023, 6 (12): : 1366 - 1373
  • [9] Collaboration and Context in the Design of Community-Engaged Research Training
    Ziegahn, Linda
    Joosten, Yvonne
    Nevarez, Lucinda
    Hurd, Thelma
    Evans, Jill
    Dumbauld, Jill
    Eder, Milton Mickey
    HEALTH PROMOTION PRACTICE, 2021, 22 (03) : 358 - 366
  • [10] Clinical Psychology Student Perspectives on Graduate Training in Community-Engaged Research Methods
    Fitzpatrick, Olivia M.
    Gonzalez, J. C.
    Moses, Jacqueline
    Drain, Alexis
    Giusto, Ali
    Galan, Chardee A.
    TRAINING AND EDUCATION IN PROFESSIONAL PSYCHOLOGY, 2025, 19 (02) : 144 - 153