Allocating scarce biospecimens

By Leah Pierson, Sophia Gibert, and Joseph Millum Clinical researchers frequently collect samples of blood, skin, and other bodily tissues from their patient-participants and have samples left over when their research is complete. These biospecimens are often in high demand from other scientists who want them for their own research. How should such collections of […]

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Do you, and should you, own your clinical data?

By Angela Ballantyne Rhetoric of ‘ownership’ is increasingly important to debates about the ethical management of clinical data. But the precise meaning of “ownership” remains opaque.  A dominant refrain in the media and some bioethics literature is that patients own their health data: “There is broad agreement that it is individuals who should not only […]

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Risks, Benefits, and Taking Participants’ Values Seriously: The Case of HIV Cure Research

By Robert Steel The introduction and refinement of highly effective antiretroviral treatments has transformed HIV into a manageable chronic condition. Nonetheless, treatment is lifelong, burdening people living with HIV and health systems. So there is interest in a cure. But cure trials can be risky and the medical benefit of potentially being cured is limited […]

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Take care when testing manufactured organs on the deceased

By Laura Kimberly, Brendan Parent Every article about the organ transplant crisis starts something like this: In the United States in 2018, over 116,000 individuals were on the waiting list for an organ transplant. Yet of those on the waiting list, only 36,000 (31%) received a much-needed transplant to treat their end-stage organ failure, and […]

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Building bridges between the global south and north in research ethics

By Cory Goldstein, Tiwonge Mtande, and Charles Weijer. How does successful international collaboration in research ethics happen? We would like to share our experience. Tiwonge Mtande’s Perspective: I am a health researcher working at UNC-Project Malawi in Lilongwe, Malawi. In November 2017, while I was working on my Master’s degree, my supervisor, Prof. Doug Wassenaar, […]

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He Jiankui’s Genetic Misadventure: Why Him? Why China?

By Jing-Bao Nie This post first appeared on The Hastings Center Forum on 5 December, 2018. The birth of gene-edited twin girls was announced by a young Chinese scientist He Jiankui through one of four self-made promotional videos in English on YouTube (a website officially banned in China) on November 25. Three days later, at the Second […]

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Rogue scientist: the human CRISPR experiment

By Jeanne Snelling and Mike King Chinese researcher, He Jiankui, claims to have implanted CRISPR-cas9 gene-edited embryos into potentially six women resulting in at least one successful pregnancy (of twins). Given the unconventional and inadequate way information has been released by He, and the fact that the research has not had thorough oversight, the facts […]

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How we can make better decisions in review and design of research using a simple ethics model

By Hugh Davies It’s right that all with a legitimate interest in research contribute to its design, review, conduct and dissemination. To thrive, research must be an honest partnership between ALL involved. Few would argue but, in accepting this, we need a process to allow us resolve differences when they arise. Here, in this blog, I […]

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In defence of participants buying their way onto drug trials

By Angela Ballantyne and Mike King Donor-funded research is research funded by private donors in exchange for research-related benefits, such as trial participation or access to the trial intervention. An example of this is the oncolytic virus trial for neuroendocrine cancer at Uppsala University, for which Alexander Masters procured £2 million in funding from a […]

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First principles: The need for ethical guidance for pragmatic trials

Post authors: Dean Fergusson, Monica Taljaard and Charles Weijer [authors listed alphabetically] Paper: Thinking clearly about the FIRST trial: addressing ethical challenges in cluster randomised trials of policy interventions involving health providers Recently, members of our research team published an ethical analysis of the Flexibility in Duty Hour Requirements for Surgical Trainees (FIRST) trial in the Journal […]

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