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  1. Not-So-Straightforward Decisions to Keep or Explant a Device: When Does Neural Device Removal Become Patient Coercion?Frederic Gilbert, Paul Tubig & Alexander R. Harris - 2022 - American Journal of Bioethics Neuroscience 13 (4):230-232.
    In their article, Sankary et al. (2022) provided important preliminary findings on how research participants exiting from clinical trials engage in decisions related to the removal or post-trial us...
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  • 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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  • Ethical and practical considerations in HIV drug trial closure: perspectives of research staff in Uganda.Sylivia Nalubega, Karen Cox, Henry Mugerwa & Catrin Evans - 2021 - Research Ethics 17 (4):423-434.
    There is a gap in evidence regarding how research trial closure processes are managed to ensure continuity of HIV care for HIV positive participants following trial closure within low income settin...
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  • Formulating an Ethics of Pharmaceutical Disinvestment.Jessica Pace, Tracey-Lea Laba, Marie-Paul Nisingizwe & Wendy Lipworth - 2020 - Journal of Bioethical Inquiry 17 (1):75-86.
    There is growing interest among pharmaceutical policymakers in how to “disinvest” from subsidized medicines. This is due to both the rapidly rising costs of healthcare and the increasing use of accelerated and conditional reimbursement pathways which mean that medicines are being subsidized on the basis of less robust evidence of safety and efficacy. It is crucial that disinvestment decisions are morally sound and socially legitimate, but there is currently no framework to facilitate this. We therefore reviewed the bioethics literature in (...)
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  • Afterlife: the post-research affect and effect of software.Nicolas E. Gold, Ian Lawson & Neil P. Oxtoby - 2023 - Research Ethics 19 (4):433-448.
    Software plays an important role in contemporary research. Aside from its use for administering traditional instruments like surveys and in data analysis, the widespread use of mobile and web apps for social, medical and lifestyle engagement has led to software becoming a research intervention in its own right. For example, it is not unusual to find apps being studied for their utility as interventions in health and social life. Since the software may persist in use beyond the life of an (...)
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