THE RECKONING; Science, March 7, 2024

CATHLEEN O’GRADY , Science; THE RECKONING

"Part of the failure lies with France’s law on research ethics, Amiel says, which is out of step with international standards. “It’s provincial,” he says. “And it’s really a problem.” Because the law allows some human studies to proceed without ethical approval, Amiel says, similar violations are ongoing elsewhere in France, though not at the scale of the IHU’s. The best solution would be to overhaul the law, he says—but “I don’t think it’s a priority for the government at the moment.”

The close relationship between political powers and scientific institutions in France is also to blame for the foot-dragging institutional response, Lacombe says. Without external voices—like Bik, Frank, Besançon, Molimard, and Garcia—“I’m not sure that things would have moved,” she says."

PLOS flags nearly 50 papers by controversial French COVID researcher for ethics concerns; Retraction Watch, December 13, 2022

Retraction Watch ; PLOS flags nearly 50 papers by controversial French COVID researcher for ethics concerns

"The publisher PLOS is marking nearly 50 articles by Didier Raoult, the French scientist who became controversial for promoting hydroxychloroquine for treating COVID-19, with expressions of concern while it investigates potential research ethics violations in the work."

3 Questions: Designing software for research ethics; MIT News, April 26, 2022

Rachel Gordon , MIT News; 3 Questions: Designing software for research ethics

"Jonathan Zong, a PhD candidate in electrical engineering and computer science at MIT, and an affiliate of the Computer Science and Artificial Intelligence Laboratory, thinks consent can be baked into the design of the software that gathers our data for online research. He created Bartleby, a system for debriefing research participants and eliciting their views about social media research that involved them. Using Bartleby, he says, researchers can automatically direct each of their study participants to a website where they can learn about their involvement in research, view what data researchers collected about them, and give feedback. Most importantly, participants can use the website to opt out and request to delete their data.  

Zong and his co-author, Nathan Matias SM '13, PhD '17, evaluated Bartleby by debriefing thousands of participants in observational and experimental studies on Twitter and Reddit. They found that Bartleby addresses procedural concerns by creating opportunities for participants to exercise autonomy, and the tool enabled substantive, value-driven conversations about participant voice and power. Here, Zong discusses the implications of their recent work as well as the future of social, ethical, and responsible computing."

Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World; Undark, February 24, 2022

DYNA ROCHMYANINGSIH, Undark; Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World

"Various ethics guidelines on health-related research — including UNESCO’s International Declaration on Human Genetic Data and international ethical guidelines published by the Council for International Organizations of Medical Sciences, or CIOMS, in collaboration with the World Health Organization — advise researchers to seek approval from an ethics committee in the host country. Such reviews are critical, bioethicists say, because cultural and social considerations of research ethics might vary between countries. In low-resource countries especially, ethics reviews are essential to protect the interests of participants and ensure that data are used in ways that benefit local communities.

Nowhere in Larena and Jakobsson’s paper, or in any of the subsequent publications based on the Philippines study, does the Uppsala team mention obtaining such an ethics approval in the Philippines — and Philippines officials say they never granted the team such an approval."

Vote now in the 2022 Morgridge Ethics Cartooning Competition; Morgridge Institute for Research, February 11, 2022

Morgridge Institute for Research ; Vote now in the 2022 Morgridge Ethics Cartooning Competition

"Sixteen cartoons have been selected as finalists in the 2022 Ethics Cartooning Competition, an annual contest sponsored by the Morgridge Institute. 

The competition encourages ethics conversations and deliberation among scientists conducting biomedical research at the University of Wisconsin-Madison and affiliated biomedical research centers or institutes.

A panel of judges has chosen the following cartoons for display to the public. You can vote below and help determine the 2022 winners! 

This year’s cartoons depict a variety of research ethics topics, such as the ethics of scientific funding and publishing, the moral status of brain organoids, the ethics of experimenting on animals, environmental and social impacts of science, and problems of communication between scientists and non-scientists."

Facing Backlash, Chinese Scientist Defends Gene-Editing Research On Babies; NPR, November 28, 2018

Rob Stein, NPR; Facing Backlash, Chinese Scientist Defends Gene-Editing Research On Babies

"University of Wisconsin bioethicist Alta Charo, who helped organize the summit, issued an even harsher critique of He's work, calling it "misguided, premature, unnecessary and largely useless."

"The children were already at virtually no risk of contracting HIV, because it was the father and not the mother who was infected," she said.

"The patients were given a consent form that falsely stated this was an AIDS vaccine trial, and which conflated research with therapy by claiming they were 'likely' to benefit," Charo said. "In fact there is not only very little chance these babies would be in need of a benefit, given their low risk, but there is no way to evaluate if this indeed conferred any benefit."

She spoke after Harvard Medical School Dean George Daley alluded to He's claims as "missteps" that he worried might set back a highly promising field of research. "Scientists who go rogue carry a deep, deep cost to the scientific community," Daley said.

Still, Daley argued that He's experiment shouldn't tar the potential work of other scientists. "Just because the first steps into a new technology are missteps, doesn't mean we shouldn't step back, restart and think about a plausible and responsible path forward," Daley said.

"The fact that the first instance came forward as a misstep should in no way leave us to stick our heads in the sand and not consider the very, very positive efforts that could come forward," Daley said. "I hope we just don't stick our heads in the sand."

Daley stressed that the world hadn't yet reached a scientific consensus on how to ethically and safely use new gene-editing techniques to modify embryos that become babies.

But Daley argued that a consensus was emerging that "if we can solve the scientific challenges, it may be a moral imperative that it should be permitted." The most likely first legitimate use of gene-edited embryos would be to prevent serious genetic disorders for which there are no alternatives, Daley said.

"Solving and assessing these deep issues [is] essential," Daley says.

Daley also defended the fact that scientists have long relied on self-regulation to prevent the abuse of new technologies. He's claims represented "a major failure" that called for much stronger regulation and possibly a moratorium on such research, Daley said. "I do think the principle of self-regulation is defensible.""

Medicine and ethics: Will we learn to take research scandals seriously?; Star Tribune, October 29, 2018

Carl Elliott, Star Tribune; Medicine and ethics: Will we learn to take research scandals seriously?

"“The Experiments” is a cautionary tale of how the refusal of institutional leaders to look honestly at ethical problems can lead to the deaths of unsuspecting patients. And while the jury is still out as to whether the Karolinska Institute will reform itself, at least the Swedish public and concerned politicians are trying to hold the institution accountable. 

That is more than we can claim for Minnesota. As they say in the rehabilitation units: The first step to recovery is admitting you have a problem."

Do We Need To Teach Ethics And Empathy To Data Scientists?; Forbes, October 8, 2018

Kalev Leetaru, Forbes; Do We Need To Teach Ethics And Empathy To Data Scientists?

[Kip Currier: A thought-provoking and timely piece, especially as I'm presently writing a chapter on research ethics for my ethics textbook and was just reviewing and thinking about the history of informed consent and Institutional Review Boards-cum-Human-Research-Protection-Offices. Medical ethics lapses like those involving Henrietta Lacks and the Tuskegee Syphilis Study are potent reminders of the concomitant imperative for ethics oversight and informed consent vis-a-vis digital age research.]

"The growing shift away from ethics and empathy in the creation of our digital future is both profoundly frightening for the Orwellian world it is ushering in, but also a sad commentary on the academic world that trains the data scientists and programmers that are shifting the online world away from privacy. How might the web change if we taught ethics and empathy as primary components of computer science curriculums?

One of the most frightening aspects of the modern web is the speed at which it has struck down decades of legislation and professional norms regarding personal privacy and the ethics of turning ordinary citizens into laboratory rats to be experimented on against their wills. In the space of just two decades the online world has weaponized personalization and data brokering, stripped away the last vestiges of privacy, centralized control over the world’s information and communications channels, changed the public’s understanding of the right over their digital selves and profoundly reshaped how the scholarly world views research ethics, informed consent and the right to opt out of being turned into a digital guinea pig.

It is the latter which in many ways has driven each of the former changes. Academia’s changing views towards IRB and ethical review has produced a new generation of programmers and data scientists who view research ethics as merely an outdated obsolete historical relic that was an obnoxious barrier preventing them from doing as they pleased to an unsuspecting public."

VW suspends media chief amid scandal over fume tests on monkeys; Guardian, January 30, 2018

Kate Connolly, Guardian; VW suspends media chief amid scandal over fume tests on monkeys

"The company initially tried to distance itself from the institute which commissioned the tests, the European Research Group of Environment and Health in the Transport Sector (EUGT), a car lobby group funded by Volkswagen, Daimler and BMW. But it is now known that VW managers were informed about the testing before and after it was carried out...

VW is already under close scrutiny over “dieselgate”, in which the carmaker manipulated tests on about 11m cars worldwide to make it appear they met emissions tests when in reality they exceeded levels many times over when used on the road.

The company said on Monday a small internal group had mistakenly pushed for the animal tests to be carried out and that they did not reflect VW’s ethos. But industry observers said the excuses held little water, as the experiments had been well-documented and the results presented to managers at BMW, Daimler and VW, all of whom belonged to the EUGT, which has since been disbanded."

Major publisher retracts 43 scientific papers amid wider fake peer-review scandal; Washington Post, 3/28/15

Fred Barbash, Washington Post; Major publisher retracts 43 scientific papers amid wider fake peer-review scandal:

"A major publisher of scholarly medical and science articles has retracted 43 papers because of “fabricated” peer reviews amid signs of a broader fake peer review racket affecting many more publications.

The publisher is BioMed Central, based in the United Kingdom, which puts out 277 peer-reviewed journals. A partial list of the retracted articles suggests most of them were written by scholars at universities in China, including China Medical University, Sichuan University, Shandong University and Jiaotong University Medical School. But Jigisha Patel, associate editorial director for research integrity at BioMed Central, said it’s not “a China problem. We get a lot of robust research of China. We see this as a broader problem of how scientists are judged.”

Meanwhile, the Committee on Publication Ethics, a multidisciplinary group that includes more than 9,000 journal editors, issued a statement suggesting a much broader potential problem. The committee, it said, “has become aware of systematic, inappropriate attempts to manipulate the peer review processes of several journals across different publishers.” Those journals are now reviewing manuscripts to determine how many may need to be retracted, it said."