Hot Topics: Research Ethics
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
by Keisha Ray, Ph.D.
In May a twitter user posted a picture depicting the muscular system of a female that included milk ducts.…Full Article
Written by Julian Savulescu Today, the Journal of the American Medical Association published an article entitled “Three Identical Strangers and The Twinning Reaction— Clarifying History and Lessons for Today From Peter Neubauer’s Twins Study” written by Leon Hoffman and Lois Oppenheim. It provides background to a documentary, Three Identical Strangers, which gained a lot of […]Full Article
The Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) is pleased to announce that the following individuals have been selected as 2019 Fellows: The Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI), now in its 9th year, is a training grant sponsored by the National Institute on Drug Abuse (NIDA) (R25 DA031608-08), Principal Investigator, Dr. Celia B. […]Full Article
by Craig Klugman, Ph.D.
In 1983, NBC broadcast an alien invasion limited series calledV. In one episode, as the U.S.…Full Article
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
Trust and Expectations of Researchers and Public Health Departments for the Use of HIV Molecular Epidemiology
Cancer Clinical Trial Patient-Participants’ Perceptions about Provider Communication and Dropout Intentions
Older Teens’ Understanding and Perceptions of Risks in Studies With Genetic Testing: A Pilot Study
Ethical Leadership and Employees’ Perceptions About Raising Ethical Concerns to Managers in the Veterans Health Administration
There are key moments in the history of every disruptive technology that can make or break its public perception and acceptance. For CRISPR-based genome editing, such a moment occurred 1 year ago—an unsettling push into an era that will test how society decides to use this revolutionary technology.Full Article
Structured training in research integrity, research ethics and responsible conduct of research is one strategy to reduce research misconduct and strengthen reliability of and trust in scientific evidence. However, how researchers develop their sense of integrity is not fully understood. We examined the factors and circumstances that shape researchers’ understanding of research integrity.Full Article
While rich medical, behavioral, and socio-demographic data are key to modern data-driven research, their collection and use raise legitimate privacy concerns. Anonymizing datasets through de-identification and sampling before sharing them has been the main tool used to address those concerns. Here researchers propose a generative copula-based method that can accurately estimate the likelihood of a specific person to be correctly re-identified, even in a heavily incomplete dataset.Full Article
Russian biologist Denis Rebrikov has started gene editing in eggs donated by women who can hear to learn how to allow some deaf couples to give birth to children without the genetic mutation that impairs hearing.Full Article
Citing a lack of evidence, the agency will require Gilead to conduct further trials in women.Full Article
A surprising new study challenged decades of nutrition advice and gave consumers the green light to eat more red and processed meat. But what the study didn’t say is that its lead author has past research ties to the meat and food industry.Full Article
Making genes from scratch used to be laborious and time consuming, but not anymore. That’s why federal officials are now considering new measures to prevent this rapidly advancing technology from being misused to create dangerous viruses or bioweapons.Full Article
An explosion this week in a Russian lab, one of only two labs in the world known to store live samples of the variola virus, which causes smallpox, has raised anew questions that have been asked since the disease was eradicated in 1980.Full Article
Scientists have invented a device that can quickly produce large numbers of living entities that resemble very primitive human embryos.
Researchers welcomed the development, described Wednesday in the journal Nature, as an important advance for studying the earliest days of human embryonic development. But it also raises questions about where to draw the line in manufacturing “synthetic” human life.Full Article
Clusters of living brain cells are teaching scientists about diseases like autism. With a new finding, some experts wonder if these organoids may become too much like the real thing.Full Article