Hot Topics: Research Ethics
by Hannah Giunta D.O., Ph.D. & Richard Sharp, Ph.D.
In their article, MacKay and Saylor analyze the issue of fair subject selection in clinical research and suggest that this overarching principle is best understood as a collection of four sub-principles, namely fair inclusion, fair opportunity, fair burden sharing, and fair distribution of third-party risks.…Full Article
by Craig Klugman, Ph.D.
Last week, NPR reported on a new pre-publication article published in the journal Human Reproduction (HR).…Full Article
by Craig Klugman, Ph.D.
As the legend goes, in the 16th Century, when he was 51 years of age, Ponce de Leon received permission from the King and Queen of Spain to explore the islands north of Puerto Rico to search for the fountain of youth, a fabled spring that would grant eternal life and youth to whomever drank from it or bathed in it.…Full Article
Professionals and the public in China first learned of the jail sentence of He Jiankui from the report of Xinhua News Agency. No information, including any interpretation, was provided by the Court. But the reported words of the sentence are so ambiguous as to leave room for different interpretations. We believe that the public has the right to know more than Xinhua News Agency reported.
The post Chinese Bioethicists: He Jiankui’s Crime is More than Illegal Medical Practice appeared first on The Hastings Center.Full Article
by Craig Klugman, Ph.D.
A commentary in Nature this past week suggested that bioethics may no longer be relevant. The author argues that the pace of technological change is so fast that bioethics can’t keep up: “Bioethics, once a beacon of principled pathways to policy, is increasingly lost, like Simba, in a sea of thundering wildebeest.” The author is Sarah Franklin, a sociologist and director of the Reproduce Sociology Research Group at the University of Cambridge (UK).…Full Article
By Charles Foster Informed consent, in practice, is a bad joke. It’s a notion created by lawyers, and like many such notions it bears little relationship to the concerns that real humans have when they’re left to themselves, but it creates many artificial, lucrative, and expensive concerns. Of course there are a few clinical situations […]Full Article
by Marieke Bak, MSc, MA, PhD(c)
When people die nowadays, they no longer leave behind only physical assets. Their estate includes large amounts of personal data that remain in existence after they pass away.…Full Article
This editorial is co-posted with the American Journal of Bioethics.
by Emily A. Largent JD, PhD, RN, Ezekiel J.…Full Article
by Bray Patrick-Lake MD, MSC & Jennifer C. Goldsack MS, MBA
The target article by Wiggins and Wilbanks reports on the history and typology of the models of citizen science emerging in health and biomedical research with the rapid dispersion and repurposing of technology.…Full Article
The ethics of research trials for young people with gender dysphoria are complicated. Billion Photos/Shutterstock Dominic Wilkinson, University of Oxford and Julian Savulescu, University of Oxford A recent Newsnight programme reported that a major UK puberty-blocking trial is under investigation. Doctors at a London clinic provided drugs to block the development of puberty in young […]Full Article
Can the Principles of Research Ethics Help Us Distribute Clinical Resources More Fairly?
Misrepresenting “Usual Care” in Research: An Ethical and Scientific Error
Ethics and Collateral Findings in Pragmatic Clinical Trials
Operational Characteristics of Institutional Review Boards (IRBs) in the United States
Return of Value in the New Era of Biomedical Research—One Size Will Not Fit All
How Payment for Research Participation Can Be Coercive
“Paid to Endure”: Paid Research Participation, Passivity, and the Goods of Work
The Continued Complexities of Paying Research Participants
Filthy Lucre or Fitting Offer? Understanding Worries About Payments to Research Participants
The use of crowd workers as research participants is fast becoming commonplace in social, behavioral, and educational research, and institutional review boards are encountering more and more research protocols concerning these workers. In what sense are crowd workers vulnerable as research participants, and what should ethics reviewers look out for in evaluating a crowdsourced research protocol?Full Article
Brain organoids, often called “minibrains,” have changed the way scientists study human brain development and disorders like autism. But the cells in these organoids differ from those in an actual brain in some important ways, scientists reported Wednesday in the journal Nature.The finding suggests that scientists need to be cautious about extrapolating results found in organoids to people.Full Article
Scientists can now create clumps of cells that resemble human embryos, raising hopes that they could study the elusive first stages of human development while avoiding the ethical concerns that make it difficult to study actual human embryos. But US researchers say they are finding it increasingly difficult to obtain federal funding for such work.Full Article
Researchers have conducted a controversial study that involved paying dozens of young women at a hospital near Puerto Vallarta, Mexico, to get artificially inseminated so their embryos could be flushed out of their bodies and analyzed for research purposes.Full Article
A new genetic engineering technology could help eliminate malaria and stave off extinctions — if humanity decides to unleash it.Full Article
The return is part of a groundbreaking approach that could inspire other institutions grappling with how to use historical samples ethically in research.Full Article
He Jiankui’s work was also carried out on a third infant, according to China’s state media, in a new disclosure that is likely to add to the global uproar over such experiments.Full Article
Two piglets recently born in China look like average swine on the outside, but on the inside, they are (a very small) part monkey.Full Article
He Jiankui’s manuscript shows how he ignored ethical and scientific norms in creating the gene-edited twins Lulu and Nana.Full Article
Scientists are raising questions about the ethics of studies backed by Chinese surveillance agencies. Prestigious journals are taking action.Full Article