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 […]
Category: Research Ethics
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Unethical World Medical Association Standards for Placebo Trials?
Guest post by Jeremy Howick Trials show that drugs called ‘interferon alpha’ extend life in people with advanced skin cancer (by a bit). If we invented a new drug to treat advanced skin cancer, most patients would want to know whether the new drug was better than interferon alpha. It would be less useful […]
Surrogacy, Obstetric Risk and the Kardashian Wests
Guest post by Nathan Hodson Kim Kardashian West and her husband Kanye West announced the birth of their third child, named Chicago, last month. Chicago West was born via surrogate. All the significant events of Kardashian West’s life have been documented season by season on Keeping Up With The Kardashians and naturally her surrogacy […]