scholarly journals Avoiding Gender Exploitation and Ethics Dumping in Research with Women

2020 ◽  
Vol 29 (3) ◽  
pp. 470-479
Author(s):  
JULIE COOK

AbstractThere is a long history of women being underrepresented in biomedical and health research. Specific women’s health needs have been, and in some cases still are, comparatively neglected areas of study. Concerns about the health and social impacts of such bias and exclusion have resulted in inclusion policies from governments, research funders, and the scientific establishment since the 1990s. Contemporary understandings of foregrounding sex and gender issues within biomedical research range from women’s rights to inclusion, to links between human rights, women’s health and sustainable development, and the increasing scientific and funding expectation for studies to consider the sex (biological) and gender (cultural) implications of research design, results and impact. However, there are also exploitation issues to consider when foregrounding the inclusion of women as research participants, especially for research ethics committees and institutional review boards. A hidden risk is that exploitative research designs and practices may be missed, particularly by reviewers who may not have a nuanced understanding of gender-based harm. Utilizing contemporary case studies of ethics dumping, this paper highlights some of the concerns, and makes recommendations for IRBs/research ethics reviewers to help ensure that essential research is undertaken to the highest ethical standards.

Author(s):  
Sarah J. L. Edwards ◽  
Tracey Stone ◽  
Teresa Swift

Objectives:To examine differences in the ethical judgments made by Research Ethics Committees (RECs) or Institutional Review Boards (IRBs).Methods:We did a review of the literature and included any study that attempted to compare the ethical judgments made by different RECs or IRBs when reviewing one or more protocol.Results:There were twenty-six articles reporting such discrepancies across Europe, within the United Kingdom, Spain, and United States. Of these studies, there were only five reports of some RECs approving while others rejecting the same protocol. All studies, however, reported differences in the clarifications and revisions asked of researchers regarding consent, recruitment, risks and benefits, compensation arrangements, and scientific issues.Conclusions:The studies were generally anecdotal reports of researchers trying to do research. New rules requiring a single ethical opinion for multi-site research at least in European Member States may simply conceal problematic issues in REC decision making. In the last analysis, we should expect a certain degree of variation and differences if we are to keep a committee system of review, although there is a pressing need to investigate the way in which RECs make these judgments. In particular, we need to identify the source of any aberrations, distortions, or confusions that could arbitrarily affect these judgments. Furthermore, local conditions remain important ethical considerations and should not be sidelined in pursuit of greater “consistency.”


Author(s):  
Michelle McCarron

Ethics in Qualitative Research (Miller, Birch Mauthner, & Jessop, 2012), now in its second edition, uses a feminist framework to present a variety of issues pertinent to qualitative researchers. Topics include traditional challenges for qualitative researchers (e.g., access to potential participants, informed consent, overlapping roles), as well as those that have garnered more attention in recent years, particularly with regard to uses and consequences of technological advances in research. The book is critical of committees whose function it is to review proposed research and grant research ethics approval (e.g., University Research Ethics Committees [URECs], Research Ethics Boards [REBs], and Institutional Review Boards [IRBs]). The authors of this book are situated within the United Kingdom. The editors take the position that ethics oversight by the researchers themselves is preferable and that such boards and committees are not well equipped to review qualitative research. A rebuttal to this position is presented within this review. Ethics in Qualitative Research provides a good overview of ethical issues that researchers face and is effective in merging theory with practice. It would be strengthened by avoiding the debate over URECs or by offering concrete suggestions for how URECs can improve their reviews of qualitative research.


2017 ◽  
Vol 39 (1) ◽  
pp. 14-17
Author(s):  
Flavia Franconi ◽  
Ilaria Campesi

It is important to remember that gender health and illness should not to be conflated with women's health and illness. Turshen1 reports that numerous studies with ‘gender’ in the title use the word gender as a synonym for ‘women’ and as a result, men's gender-specific needs are missed. In addition, in reporting demographic characteristics of the study participants, some clinical trialists use the term ‘gender’ and some ‘sex’ to indicate men and women and this may create confusion. It can be difficult to separate the two concepts, because there are continuous and constant interactions and relationships between sex and gender3. In other words, sex and gender work together. However, little attention is paid to the fact that gender is a sex modifier. It is relevant to have in mind that both sex and gender affect health and illness4.


2020 ◽  
pp. medethics-2020-106880
Author(s):  
Angela Ballantyne ◽  
G Owen Schaefer

In their response to ‘Public interest in health data research: laying out the conceptual groundwork’, Grewal and Newson critique us for inattention to the law and putting forward an impracticably broad conceptual understanding of public interest. While we agree more work is needed to generate a workable framework for Institutional Review Boards/Research Ethics Committees (IRBs/RECs), we would contend that this should be grounded on a broad conception of public interest. This broadness facilitates regulatory agility, and is already reflected by some current frameworks such as that found in the guidelines approved under Australia’s Privacy Act. It remains unclear which elements of our broad account Grewal and Newson would reject, or indeed where the substantive disagreement with our position lies.


Author(s):  
Anna C. Mastroianni ◽  
Leslie Meltzer Henry

Drawing on the ethical principles of the Belmont Report, this chapter critically examines the legacy and current policies and practices in the United States related to the inclusion of women in clinical research. Historically, protectionist policies and practices excluded women from research participation, justified by, for example, reliance on the male norm, male bias, and fears of legal liability resulting from tragic cases of fetal harm. Recognition of the ensuing harms to women’s health from exclusion and underrepresentation in research led to significant policy changes in the 1990s encouraging women’s participation in research. Although the knowledge gap in women’s health is narrowing, significant challenges remain, including the need to develop robust approaches to defining sex and gender, identifying and analyzing sex and gender differences, and acknowledging and addressing intersectionality and women’s health needs across their life spans.


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