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  1. Exit from Brain Device Research: A Modified Grounded Theory Study of Researcher Obligations and Participant Experiences.Lauren R. Sankary, Megan Zelinsky, Andre Machado, Taylor Rush, Alexandra White & Paul J. Ford - 2022 - American Journal of Bioethics Neuroscience 13 (4):215-226.
    As clinical trials end, little is understood about how participants exiting from clinical trials approach decisions related to the removal or post-trial use of investigational brain implants, such as deep brain stimulation (DBS) devices. This empirical bioethics study examines how research participants experience the process of exit from research at the end of clinical trials of implanted neural devices. Using a modified grounded theory study design, we conducted semi-structured, in-depth interviews with 16 former research participants from clinical trials of DBS (...)
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  • First Do No Harm: Ethical Concerns of Health Researchers That Discourage the Sharing of Results With Research Participants.Rachel S. Purvis, Christopher R. Long, Leah R. Eisenberg, D. Micah Hester, Thomas V. Cunningham, Angel Holland, Harish E. Chatrathi & Pearl A. McElfish - 2020 - AJOB Empirical Bioethics 11 (2):104-113.
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  • Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.Gershim Asiki, Michele Ramsay, Anita Ghansah, Paulina Tindana, Catherine Kyobutungi, Shukri F. Mohamed & Isaac Kisiangani - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundA fundamental ethical challenge in conducting genomics research is the question of what and how individual level genetic findings and aggregate genomic results should be conveyed to research participants and communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim of this study was to explore the perspectives of key stakeholders' on returning genomics research results to participants in Kenya.MethodsThis qualitative study involved focus group discussions (FGDs) and in-depth interviews (IDIs) with 69 stakeholders. (...)
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