Payment of Participants with Disability in Research: A Scoping Review and Framework

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Dear colleagues

I am very grateful for your precise work on inclusive research projects. May I offer the following tips and questions to you?

 

1. I believe that recent criticism of the ‘standard assignment’ of the characteristic ‘vulnerability’ to persons with disabilities can better explain and counteract the emergence of prejudices among both researchers and ethics committees. To elaborate on this further in the introduction to the article, reference can be made to, for example, Beck (2024), Connon (2021), Fineman (2019) and Snipstadt (2022).

 

2. The methodological section of the article is very clear and provides the most relevant information. One small suggestion could be added (in a table?): namely, the refinement of the following phrase:  ... The research question was refined iteratively with initial testing of the search strategy, which resulted in it being expanded to consider ‘vulnerable’ groups more broadly rather than disability solely. This could help to clarify the very precise working method. (page 3)

 

3. On page 4 we can read: ….Other ‘vulnerable groups’ focused on were children (Blake et al. 2011, Song et al. 2023)… We know that throughout history, people with disabilities have often been (and still are) seen as ‘eternal children’.... The mixing of vulnerable groups could perhaps be accompanied by a footnote from the authors on this subject.

 

4. May I find it strange that throughout the entire article, few or no links are made to what Fricker (2003) has called ‘epistemic injustice’ and, more specifically, ‘hermeneutic injustice’? Especially because on page 10 the authors describe … Within the papers included in this review the key ethical concepts brought into the discussion of vulnerability related to consent, justice, and reciprocity….

 5. The authors argue that it is now necessary to test their framework against concrete research projects. It is unfortunate that they are unable to present any planned future real partnerships: this could have added considerable value in terms of the sustainability of their framework.

 

 

 

 

 

Author Response

Please see the attachment

Author Response File: Author Response.pdf

Reviewer 2 Report

Comments and Suggestions for Authors

Abstract - the term “participants with disability” could be updated to “participants with disabilities” or “disabled participants” based on inclusive language standards. Need a concise mention of the methodological approach (e.g., PRISMA-ScR adherence, thematic synthesis). Could briefly reference international scope or limitations in geographic representation. Clarify that this is a scoping review of payment ethics in research involving people with disabilities and provide a one-line description of the framework's purpose and scope.

 

Introduction - The framing is heavily anchored in Western bioethical discourse without sufficient engagement with global perspectives or disability rights theory. The critique of the "vulnerability" concept could be strengthened by citing critiques from disability studies (e.g., Goodley, Shakespeare). Could better highlight the practical implications of excluding disabled people from research. Include more international examples and critical disability theory in framing. Reframe vulnerability in terms of systemic exclusion rather than individual deficit.

 

Methods - No discussion of how papers were assessed for relevance or quality beyond inclusion criteria. There is no critical differentiation between empirical studies and theoretical papers. Thematic analysis process is under-described (e.g., coding, reviewer involvement). Detail how themes were derived (e.g., inductive/deductive coding), how reviewer agreement was managed, and how methodological rigor was maintained.

 

Results - The diversity of the included studies is not systematically compared or critically interrogated (e.g., variation in methodology, sample size, or region). The table summarising articles is helpful but could benefit from clearer typology (empirical vs. commentary, global North vs. South). Minimal attention to intersecting oppressions (e.g., disability and race/gender). Add a cross-comparison of studies to highlight gaps, reinforce claims, and improve representation. ? Use subheadings to break up long thematic discussions.

 

Discussion - The paper could benefit from a stronger normative stance, what should be done differently in ethics committees, not just what is observed. Underdeveloped engagement with disability justice frameworks and decolonial perspectives. Over-relies on Western ethical codes and lacks critical interrogation of their limits. Integrate global disability rights perspectives, such as from the CRPD, and discuss how power, epistemic injustice, and participatory approaches can reshape ethical practices.

The framework is not sufficiently visualised or operationalised (e.g., as a table, flowchart, or checklist). Lacks concrete application examples, how would it apply to specific studies? Clarify how researchers and ethics boards can apply each dimension of the framework in practice. 

 

Conclusion - To modest in its recommendations for policy change or institutional reform. Could end with a stronger call to action or outline specific next steps for researchers, funders, or ethics boards. Strengthen the conclusion by connecting it to structural reform in research systems and proposing concrete next steps (e.g., updating ethics training, funding guidelines).

 

Overall - The writing is largely clear and well-structured, though occasionally dense. Be consistent with terms like "disabled people," "people with disabilities," and “vulnerable groups.” Consider aligning with the social model of disability. Include first-person perspectives or participatory research examples to elevate lived experience. 

Include more detailed comparative analyses of how structural and cultural contexts shape payment ethics in different regions (e.g., social security frameworks in high-income countries vs. informal economies in LMICs). Expand the discussion of contextual vulnerability with examples of intersectionality (e.g., how gender, ethnicity, or migration status intersects with disability). Anchor the analysis with real-world case studies that demonstrate ethical complexities in field settings.

Integrate bioethical guidance from non-Western institutions (e.g., Indian Council of Medical Research, African Union's NEPAD bioethics recommendations). Critically assess how Western ethical paradigms may not always map appropriately onto non-Western contexts (e.g., communal consent, local norms of reciprocity). Explicitly reflect on decolonial ethics or indigenous frameworks that might offer alternative conceptions of payment, consent, and justice.

Provide a table or appendix categorising studies by methodology (e.g., empirical qualitative, quantitative, expert commentary) and level of evidence. Consider a basic quality assessment (even though not standard for scoping reviews) to signal the strength of evidence being reviewed. Clarify how themes were derived during the thematic analysis stage and who conducted this process (e.g., number of reviewers, triangulation methods).

Engage with critical disability studies, including scholars such as Tom Shakespeare, Rosemarie Garland-Thomson, or Fiona Kumari Campbell, to deepen the discussion of power, agency, and epistemic justice. Consider embedding the framework within a rights-based or capabilities approach (e.g., Nussbaum and Sen), particularly when discussing fair participation and inclusion. Explore the concept of “epistemic injustice” (Fricker) as it relates to the valuation of disabled people’s knowledge and contribution to research.

Develop decision-making tools (e.g., checklists or flowcharts) to guide researchers and ethics committees. Clarify how the framework complements or challenges existing ethical guidelines (e.g., NHMRC, Belmont).

Expand discussion on non-monetary forms of compensation and their cultural appropriateness. Integrate participant voices more explicitly to ensure experiential knowledge shapes the ethical discussion. Discuss longitudinal impacts of compensation decisions, how do one-time ethical choices affect long-term engagement or trust?

Comments on the Quality of English Language

Content, flow and clarity could improve. 

Author Response

Please see the attachment.

Author Response File: Author Response.pdf

Round 2

Reviewer 2 Report

Comments and Suggestions for Authors

Thank you for taken the time to revise this paper and you have addressed the comments well in the revised paper.