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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Guest Post: The eternal life of the biobank participant

Authors: Maria Stuifbergen, Lars Ursin Paper: The Ethics of dead participants: policy recommendations for biobank research Have you ever been operated at a hospital, donated blood, or participated in a health survey? Then you might have agreed to let health information and tissue samples from you be stored in a research biobank. You gave your […]

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Protection by Exclusion? Capacity as a Gatekeeper to Research

Authors: Victoria Shepherd, Richard Griffith, Mark Sheehan, Fiona Wood, Kerenza Hood Paper: Healthcare professionals’ understanding of the legislation governing research involving adults lacking mental capacity in England and Wales: a national survey  People who lack capacity to provide informed consent are often excluded from medical research, leading to concerns that there is an evidence-bias in the […]

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Moving Towards a New Ethical Governance Framework for Research-Clinical Hybrid Genomic Medicine

Authors: Gabrielle Samuel, Sandi Dheensa, Anneke Lucassen, Bobbie Farsides Paper: Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project [OPEN ACCESS] The Chief Medical Officers’ 2017 report Generation Genome calls for a move towards integrated research and clinical practice in genomic medicine (i.e., research-clinical […]

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