Lesbian, gay, bisexual, and transgender (LGBT) adolescents experience disparities in mental and sexual health. There is also a lack of research on this population relative to other adolescents, which limits our ability to effectively address these health disparities. Researchers may unfortunately avoid conducting research with this population because of anticipated or actual experiences with difficulties in obtaining IRB approval. A case example is provided to illustrate the ethical and regulatory issues related to research with LGBT adolescents. Relevant U.S. federal and local regulations related to research on sexual and mental health with adolescents is then reviewed. Data are presented demonstrating that requiring parental consent for LGBT youth under age 18 would likely alter study result. Data are also presented on participants’ appraisals of the risks and discomforts associated with research participation. The provision of such empirical data on the risks of research participation is consistent with the goal of moving the IRB process of risk/benefit assessment from being entirely subjective to being evidence-based. Finally, recommendations are provided on how to approach these issues in IRB applications and investigators are called to help to build a corpus of scholarship that can advance empirical knowledge in this area.

Ethical and regulatory issues with conducting sexuality research with LGBT adolescents: A call to action for a scientifically informed approach

This review outlines the key ethical issues with which visual researchers need to engage, drawing on literature from established visual researchers as well as practical illustrations from current research projects being undertaken within the National Centre for Research Methods (NCRM). Its focus is on the ethical issues associated with research using photographs, film and video images (created by researchers, respondents or others) rather than other visual methods. It is intended as an introduction to assist researchers in identifying what ethical issues might arise in undertaking visual research and how these might be addressed. The review commences with an outline of research ethics frameworks, professional guidance, regulation and legal rights and duties which, to varying degrees, shape visual researchers’ ethical decision making. It then goes on to explore the core ethical issues of consent, confidentiality and anonymity and discusses the ethical considerations that these raise with examples of how these can be managed. The paper concludes with a brief discussion of the ethical issues raised in relation to the construction and consumption of images. The authors stress the importance of researchers engaging with theories (or approaches) to research ethics in their ethical decision making in order to protect the reputation and integrity of visual research.

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Visual Ethics: Ethical Issues in Visual Research

[1] We set forth an argument for the integration of social science research with natural science and engineering research in major research infrastructure investments addressing water science. A program of integrated observation of water resources offers great opportunities to address several environmental “grand challenges” identified by the National Research Council, including climate variability, institutions and resource use, and land use dynamics, and their importance for hydrologic forecasting. We argue that such a program has the potential to advance both water science and the contributing disciplines. However, to realize this potential, it is essential to recognize that social science requires critical infrastructure funding on the scale of advanced research facilities in the natural sciences and engineering.

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Social science in a water observing system

Much of the literature on human subject regulation asserts that Institutional Review Boards (IRBs) have failed at the task of regulating human subjects research. These critiques of IRB law can be grouped into three loose categories: critiques of IRB law as law, critiques of IRBs as regulation, and critiques of IRBs as a system of norm creation. Moving beyond critique, we rethink the literature on IRBs drawing on the tools and scholarship of the social sciences. In particular, we examine human subjects regulation as an insufficient remedy to inequalities between weak and powerful actors, as a site of professional claims- and career-making, and as an occasion for institutionalization. Finally, distinguishing between the regulation of science and the regulation of ethics, we observe that the latter is far more difficult because ethics are contextual and subject to social construction. For these reasons, IRBs often substitute bureaucratic ethics for professional ethics.

Bureaucratic Ethics: IRBs and the Legal Regulation of Human Subjects Research

A central ethical issue confronting researchers using visual methods is how to manage the use of identifiable images Photographic and other visual materials can make the anonymisation of individuals problematic; at the same time many researchers, as well as research participants, view image manipulation as undesirable Anonymisation is one of a range of ethical concerns that need consideration in relation to the use of identifiable images Other concerns include the contexts in which images were produced and through which they may be consumed, the longevity of images in the public domain and the potential for future uses and secondary analysis of images This paper explores some of the ways in which researchers specifically approach anonymisation in relation to visual methods, drawing on a qualitative study of ethical issues in visual research Focus group discussions and interviews with researchers who use visual methods revealed the ongoing challenges of identification and anonymisation While decisions about visual identification are inevitably complex and situated, our explorations revealed ongoing tensions between, on the one hand, research participants’ rights and researchers’ desire for participants to be seen as well as heard and, on the other hand, researchers’ real and perceived ethical responsibility to safeguard participants

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Anonymisation and visual images: Issues of respect, 'voice' and protection

Our system of research self-regulation, designed to provide internal checks and balances for those who participate in research involving human subjects, is under considerable stress. Much of this c...

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Masumi Iriye

Papers

The Illinois White Paper: Improving the System for Protecting Human Subjects--Counteracting IRB "Mission Creep".