![]() Please direct correspondence to Building sustainable global collaborative networks: Recommendations from music studies and the social sciences. to Please note: We welcome questions, comments, citation, and constructive criticism, bearing in mind that this is a draft preprint subject to revision. As researchers in music and the social sciences with experience building and sustaining such networks, we participated in a virtual symposium on February 7, 2021. Global collaborative networks have been established in multiple fields to move beyond research that over-relies on "WEIRD" participants and to consider central questions from cross-cultural and epistemological perspectives. These divergent perspectives create an ethical and legal quandary, and further empirical and normative work is needed to fully characterize the implications of substantive differences in participant rights and protections. However, the extent to which they perceived such variability as problematic differed, as did their perceptions of stakeholder roles and responsibilities for addressing state law variation, and their estimations of requisite knowledge among IRBs and researchers. ![]() Interviewees were aware of state-based variation in laws that could be applied to research. Our goal was to better understand their experiences with choice of law issues, the effects of state law variation on research practices and stakeholder groups, and approaches to addressing such variation. To shed light on this topic, we conducted interviews with experts in law, human research protections, and precision medicine research. Thus, the determination of which state's laws apply, and under what circumstances, can substantially alter participant rights and protections. Precision medicine research in particular implicates state laws that govern an array of topics, including human subjects research, genetic testing, and both general and genetic privacy and discrimination. ![]() Pharmaceutical industry research spending exceeds the National Institutes of Health (NIH) budget, which increased from approximately $1 billion in 1970 to $30 billion in 2010.2 Multisite research, expansion into international and community settings, novel scientific opportunities, freezers of stored samples, expanded categories of researchers, and entities including contract research organizations, data and safety monitoring committees, clinical trial coordinating centers, and commercial IRBs have transformed the clinical research enterprise.įederal law establishes minimum standards for protecting human research participants, but many states have enacted laws that may apply to research. Institutional review boards were initially created to provide independent review of research conducted by researchers at their own institutions, impartial assessment of the ethical acceptability of proposed research, and a check on investigators' interests.1 Subsequently, advances in knowledge, technology, and resources have changed the face of research. Unregulated (Facebook) and regulated (Cornell University) activities were combined in the PNAS publication ( 1), the former by experimenting with large numbers of unwitting participants, the latter by approving the use of preexisting experimental data as exempt from the university’s ethical review.Institutional review boards (IRBs) are the core of the well-established US system for the protection of human research participants. One might well wonder why academic research is more subject to ethical review than that of business enterprises. In contrast, academic research is almost always governed by the provisions of the “Common Rule,” the US Department of Health and Human Services’ Code of Federal Regulations Title 45 Part 46 (45CFR46), “common” because it has been adopted by numerous federal agencies and applied to many research institutions. In commerce and on the Internet, experimentation is ubiquitous and invisible, and there are no protections for human participants beyond typically unread use agreements. Those events were recognized in an Expression of Concern in PNAS ( 2). Facebook’s experimental manipulation of newsfeed content and the subsequent PNAS publication of significant findings from it ( 1) have drawn attention to the regulation of human participation in academic research and to the differences between commercial and academic research.
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