Academic paper based on Uyghur genetic data retracted over ethical concerns; The Guardian, December 29, 2023

Amy Hawkins , The Guardian; Academic paper based on Uyghur genetic data retracted over ethical concerns

"The retraction notice said the article had been withdrawn at the request of the journal that had published it, Forensic Science International: Genetics, after an investigation revealed that the relevant ethical approval had not been obtained for the collection of the genetic samples.

Mark Munsterhjelm, a professor at the University of Windsor, in Ontario, who specialises in racism in genetic research, said the fact that the paper had been published at all was “typical of the culture of complicity in forensic genetics that uncritically accepts ethics and informed consent claims with regards to vulnerable populations”.

Concerns have also been raised about a paper in a journal sponsored by China’s ministry of justice. The study, titled Sequencing of human identification markers in an Uyghur population, analysed Uyghur genetic data based on blood samples collected from individuals in the capital of Xinjiang, in north-west China. Yves Moreau, a professor of engineering at the University of Leuven, in Belgium, who focuses on DNA analysis, raised concerns that the subjects in the study may not have freely consented to their DNA samples being used. He also argued that the research “enables further mass surveillance” of Uyghur people."

Triage and ventilator rationing not the only ethical issues in pandemic, bioethicists say; National Catholic Reporter, April 6, 2020

Heidi Schlumpf, National Catholic Reporter; Triage and ventilator rationing not the only ethical issues in pandemic, bioethicists say

"News of life-saving ventilators being rationed, hospitals issuing blanket "Do Not Resuscitate" orders and politicians suggesting that some human lives are expendable in service of the economy have highlighted the importance of an ethical framework for decision-making during the coronavirus pandemic.

What used to be theoretical, textbook exercises have become real-life dilemmas for overburdened or soon-to-be-overburdened health care systems.

But Catholic bioethicists say clinical triage decisions, while important, are only part of a number of broader ethical concerns, including preventative strategies such as paid sick leave, truthful communication from political leaders and assistance with payment for testing and treatment.

Concern for the common good and for the most vulnerable populations become even more urgent during a pandemic, Catholic ethicists told NCR. And preparedness and prevention are as much moral issues as are end-of-life decisions.

Nearly 1,400 bioethicists and health leaders said as much in a letter to the White House and U.S. Congress dated March 21. The letter was organized by the New York-based Hastings Center, a bioethics research institute, and included a number of prominent Catholic signatories."

For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection; Undark, September 30, 2019

Adrian Pecotic, Undark; For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection

To be equitable, genetics research needs more diverse samples. But collecting that data could present ethical issues.

"“When we do genetic studies, trying to understand the genetic basis of common and complex diseases, we’re getting a biased snapshot,” said Alicia Martin, a geneticist at the Massachusetts General Hospital and the Broad Institute, a biomedical and genomics research center affiliated with Harvard and MIT.

Research to capture these snapshots, called genome-wide association studies, can only draw conclusions about the data that’s been collected. Without studies that look at each underrepresented population, genetic tests and therapies can’t be tailored to everyone. Still, projects intended as correctives, like All of Us and the International HapMap Project, face an ethical conundrum: Collecting that data could exploit the very people the programs intend to help."

For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection; Undark, September 30, 2019

Adrian Pecotic, Undark; For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection

"Research to capture these snapshots, called genome-wide association studies, can only draw conclusions about the data that’s been collected. Without studies that look at each underrepresented population, genetic tests and therapies can’t be tailored to everyone. Still, projects intended as correctives, like All of Us and the International HapMap Project, face an ethical conundrum: Collecting that data could exploit the very people the programs intend to help."

Rethinking Medical Ethics; Forbes, February 11, 2019

FORBES INSIGHTS With Intel AI , Forbes; Rethinking Medical Ethics

"Even so, the technology raises some knotty ethical questions. What happens when an AI system makes the wrong decision—and who is responsible if it does? How can clinicians verify, or even understand, what comes out of an AI “black box”? How do they make sure AI systems avoid bias and protect patient privacy?

In June 2018, the American Medical Association (AMA) issued its first guidelines for how to develop, use and regulate AI. (Notably, the association refers to AI as “augmented intelligence,” reflecting its belief that AI will enhance, not replace, the work of physicians.) Among its recommendations, the AMA says, AI tools should be designed to identify and address bias and avoid creating or exacerbating disparities in the treatment of vulnerable populations. Tools, it adds, should be transparent and protect patient privacy.

None of those recommendations will be easy to satisfy. Here is how medical practitioners, researchers, and medical ethicists are approaching some of the most pressing ethical challenges."

A Cyber-Psychologist Explains How Human Behavior Changes Online; Diane Rehm Show, 8/25/16

[Podcast] Diane Rehm Show; A Cyber-Psychologist Explains How Human Behavior Changes Online:

"If you’ve watched the TV show “CSI: Cyber” then you know a little bit about Mary Aiken. She’s a forensic cyber psychologist, and the fictional television program was inspired by her real life work advising law enforcement on virtual crime. Aiken says people take risks online they never would in the “real world”, a phenomenon that puts vulnerable populations at risk, particularly the young. In a new book, “The Cyber Effect”, Aiken explains how the act of going online changes our behavior in fundamental ways. From what happens in the “dark web”, to issues raised by digital selfies, to the growing problem of “cyberchondria” Aiken introduces us to some of the many ways our behavior changes online.

Guests

Mary Aiken author, "The Cyber Effect"; forensic cyberpsychologist and director of the CyberPsychology Reserach Network"