“Who Am I to Judge These Things”
Intersectional Dimensions of Self-Silencing of People with a Neuromuscular Disease in a Clinical Trial
Bibliographic Data
| ID | 17814221 |
|---|---|
| Authors | Floor Cuijpers (corresponding author), Maaike Muntinga (0000-0002-3014-5716), Minne Bakker, Gönül Dilaver (0000-0002-6227-2197), Mariette Van Den Hoven (0000-0003-1416-0972), Petra Verdonk (0000-0003-0464-8210) |
| Year | 2022 |
| Volume | 15 |
| Issue | 2 |
| Pages | 51-75 |
| Publication date | 2022-08-01 |
| Peer Reviewed | Yes |
| Open Access | No |
| Type | ARTICLE |
| Venue | International Journal of Feminist Approaches to Bioethics (JOURNAL) |
| Journal identifiers | ISSN: 1937-4577 • E-ISSN: 1937-4585 |
| Publisher | University of Toronto Press Inc. (UTPress) (PUBLISHER) |
| DOI | 10.3138/ijfab.15.2.04 |
| OpenAlex | W4294300347 |
| Language | EN |
| References cited | 50 |
Ethical guidelines protecting medical research participants have been criticized for stripping the sociocultural contexts of research. This critique is urgent considering ongoing calls to account for participant diversity in recruitment and inclusion procedures. Our intersectional analysis of illness narratives explores how sociostructural factors might play a role in participants’ exposure to research-related harm in clinical trials. Although widening participation does respond to generalizability concerns, we argue that gendered, classed, and ableist processes of self-silencing could simultaneously enhance risk of harm for participants with multiple oppressed identities. To prevent this, researchers might actively involve participants when designing trials
Clinical trial · Developmental psychology · Disability studies · Generalizability theory · Harm · Narrative · Sociology · Biomedical Ethics and Regulation · Ethics in Clinical Research · Ethics in medical practice · Gender Studies · Medicine · Psychology · Social Psychology
Beyond curriculum reform
What Makes Clinical Research Ethical?
Distinction
Global bioethics and respect for cultural diversity
Demarginalizing the Intersection of Race and Sex
Conducting secondary analysis of qualitative data
Identifying and evaluating layers of vulnerability – a way forward
An exploration of women's experience of taking part in a randomized controlled trial of a diagnostic test during pregnancy
Elucidating the concept of vulnerability
Age-period-cohort analysis on the cancer mortality in rural China
The social determinants of chronic disease management
Even if I Don't Know What I'm Doing I Can Make It Look like I Know What I'm Doing”
The social construction of contested illness legitimacy
Habitus and social class
A culture of silence
Care as a Basis for Radical Political Judgments
Domesticating Bodies
The Silencing the Self Scale
The Costs of Silencing the Self and Divided Self in the Context of Physical Abuse, Racial/Ethnic Identity, and Medication Adherence in Women Living with HIV
Philosophical Challenges for Researchers at the Interface between Neuroscience and Education
The Role of Internalization of Gender Norms in Regulating Self-Evaluations in Response to Anticipated Delinquency
Risk and Emotion Among Healthy Volunteers in Clinical Trials
Diverse Perceptions of the Informed Consent Process
Conducting Accessible Research
Self-Silencing to Sexism
Research Synthesis
Why do women consent to surgery, even when they do not want to? An interactionist and Bourdieusian analysis
Empty ethics
Participatory Research for Health and Social Well-Being
| Citation velocity | historical |
|---|---|
| Highly cited | No |