The Morgridge Institute for Research and Wisconsin Institute for Discovery offer an unparalleled opportunity for conducting cutting-edge ethics research integrated with the activities of Discovery scientists and engineers.
Data Release Policies for Genomics: Legal and Ethical Issues
Pilar Ossorio
Policies often mandate that federally-funded biomedical scientists release large quantities of raw data to the public or to other qualified scientists. When those data come from human beings, funders’ goal of advancing science by making data widely accessible can come in tension with the ethical goals of protecting research participants from informational harm. Reidentification of individuals whose sensitive data are in supposedly anonymized datasets has become an increasing concern for scientists, ethicists, and policy makers. Advances in computational science and the proliferation of databases have made it much easier to reidentify people from research data, even when names, medical record numbers and other explicit identifiers are stripped from those data. The currently favored policy option for release of sensitive human data involves a “controlled access” mechanism, including an administrative infrastructure for verifying data users’ scientific credentials, determining that scientists will use the data for projects consistent with the original consent, and for communicating data use restrictions to scientists.
This pilot project will generate a variety of policy options for data release, with a particular emphasis on release of whole genome data. It will do so by: (1) conducting approximately 30 interviews among people who have worked to develop data release policies, individuals who implement data release policies/plans
and researchers who work under these policies; and (2) drawing on approaches to governance that have been developed by administrative law scholars in the context of environmental law. The proposals of this project will pay particular attention to protecting the research participants’ interests in avoiding informational harm, and to designing oversight processes that minimize administrative burdens on science.
This project is funded by NIH grant #R03 HG005776 and the Morgridge Institute for Research.
Regulation and Ethics of Design-Based Research in the Online, Social Networking Context
Pilar Ossorio and R. Benjamin Shapiro
As people around the world have increasingly integrated online social networking sites into their everyday lives, researchers have also migrated to the online space. The computational and analytical developments being used by marketers to target advertising can also be used by academic researchers to study or even manipulate people’s behavior. Researchers are now designing online interventions designed to teach new material, motivate civic and health behaviors, and disclose or change people’s unconscious racial or gender biases. Yet conducting research online raises a host of difficult questions for researchers and research
oversight personnel. When does online research count as regulated research on human participants? When do researchers need to obtain informed consent for their online research? Do researchers need to obtain consent from a person’s Facebook friends if researchers can get data about Facebook friends from the person under study? How should one get consent from people online? What are people’s reasonable expectations of privacy in the online environment? Our research aims to address these and other questions.
This project is funded by the Morgridge Institute for Research and Tufts University.
Interdisciplinary Collaboration and Innovation at the Institutes
Ramya Rajagopalan and Joan Fujimura
The Wisconsin Institutes for Discovery aims to promote new kinds of cross-disciplinary and interdisciplinary collaboration at the cutting-edge of academic research. Using approaches from the sociology of science, this project examines how researchers in the institutes are making efforts to realize these goals. Specifically, the project asks, how does the institutional arrangement of the institutes affect the patterns of research collaboration? How are research practices affected by projects that lie at the interfaces of traditional disciplines? How do researchers negotiate the challenges of working across different spheres of expertise? And what are the larger implications of this kind of research, for the structure of disciplines, for higher education and for the future of the university?
This project is supported by the Morgridge Institute for Research and the UW–Madison Graduate School.