Hot Topics: Research Ethics

Blog Posts (102)

April 8, 2018

Building a Trustworthy Precision Health Research Enterprise

This editorial also appears in the April 2018 edition of the American Journal of Bioethics

by David Magnus, PhD and Jason N.

April 8, 2018

Artist’s Blurb- April AJOB Cover

by Natalie Yoshioka, BA
I spent the most time trying to find an exciting visual metaphor that would best represent the recommendation of building trust within a community over an extended period of time.…

April 6, 2018

Ethics and Society Newsfeed – April 6, 2018

Image via Bioethics/Medical Ethics/Animal Ethics The Human Thing: When It’s Not About “Bioethics” “In the place of narcissistic and subjective dignity wrongly invoked by procreation militants, we need a return to the transcendent and objective dignity of human nature.” A Global Observatory for Gene Editing “Sheila Jasanoff and J. Benjamin Hurlbut call for an international […]
February 9, 2018

Ethics and Society Newsfeed – February 9, 2018

Politics The Circumscribed Ethics Investigation into Devin Nunes “The House Intelligence Committee chair claimed he’d been completely cleared, but the panel probing his conduct never gained access to the intelligence he was accused of divulging.” Trump’s Choice For Ethics Chief Wins Praise As ‘Somebody Who Plays It By The Book’ “Emory A. Rounds III is … More Ethics and Society Newsfeed – February 9, 2018
January 25, 2018

Monkey See, Human Do: Cloning Macaque Monkeys with Fetal Cells

by Craig Klugman, Ph.D.

 “How afraid of human cloning should we be?”
Monkeys have been cloned, Paving the way for human cloning
Yes, They’ve Cloned Monkeys in China.

January 24, 2018

Electronic Preprints and the Ingelfinger Rule

by David B. Resnik, JD, PhD,

Since 1969, the New England Journal of Medicine has maintained a policy, known as the Ingelfinger Rule, against publishing articles which have already been published or reported to the media. …

January 12, 2018

Whose Rights are Right?: The Debate Over Animal Rights in Research

STUDENT VOICES | CHYNN PRIZE HONORABLE MENTION By Brianna Blunck Animal research has been conventionally practiced under the notion that it has played a vital role in scientific and medical advances, but our use of animals should not continue without periods of reflection on the morality and necessity of their use. George Yancy, PhD and … More Whose Rights are Right?: The Debate Over Animal Rights in Research
December 8, 2017

Ethics & Society Newsfeed: December 8, 2017

Technology Ethics Artificial Intelligence Seeks An Ethical Conscience “Leading artificial intelligence researchers gathered this week for the prestigious Neural Information Processing Systems conference have a new topic on their agenda. Alongside the usual cutting-edge research, panel discussions, and socializing: concern about AI’s power. Four ethical priorities for neurotechnologies and AI “Artificial intelligence and brain–computer interfaces must … More Ethics & Society Newsfeed: December 8, 2017
December 6, 2017

Dangerous Ethics Oversight in Purdue Child Nutritional Study: Fordham University’s Dr. Celia Fisher Weighs In

This past July. an $8.8 million dollar, camp-like nutrition study funded by the National Institutes of Health (NIH) was shut down, resulting in a vast internal investigation at Purdue University, one of the nation’s top research institutions, and raising several issues about research ethics and the role of institutional review boards (IRBs), according to Undark. … More Dangerous Ethics Oversight in Purdue Child Nutritional Study: Fordham University’s Dr. Celia Fisher Weighs In
December 4, 2017

The Idea of a “Standard View” of Informed Consent

This editorial is re-posted from the December 2017 issue of the American Journal of Bioethics. You can read more on this topic through the target article and open peer commentaries

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Published Articles (216)

American Journal of Bioethics: Volume 18 Issue 4 - Apr 2018

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee

American Journal of Bioethics: Volume 18 Issue 4 - Apr 2018

Building a Trustworthy Precision Health Research Enterprise David Magnus & Jason N. Batten

AJOB Primary Research: Volume 8 Issue 1 - Mar 2018

Understanding variations in secondary findings reporting practices across U.S. genome sequencing laboratories Sara L. Ackerman PhD, MPH & Barbara A. Koenig

AJOB Primary Research: Volume 8 Issue 1 - Mar 2018

A paradigm for understanding trust and mistrust in medical research: The Community VOICES study M. Smirnoff, I. Wilets, D. F. Ragin, R. Adams, J. Holohan, R. Rhodes, G. Winkel, E. M. Ricci, C. Clesca & L. D. Richardson

AJOB Primary Research: Volume 8 Issue 1 - Mar 2018

Would you be willing to zap your child's brain? Public perspectives on parental responsibilities and the ethics of enhancing children with transcranial direct current stimulation Katy Wagner, Hannah Maslen, Justin Oakley & Julian Savulescu

AJOB Primary Research: Volume 8 Issue 1 - Mar 2018

Children's perspectives on the benefits and burdens of research participation Claudia Barned, Jennifer Dobson, Alain Stintzi, David Mack & Kieran C. O'Doherty

American Journal of Bioethics: Volume 18 Issue 1 - Jan 2018

The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative Kathryn M. Porter, Marion Danis, Holly A. Taylor, Mildred K. Cho, Benjamin S. Wilfond & on behalf of the Clinical Research Ethics Consultation Collaborative Repository Group

American Journal of Bioethics: Volume 17 Issue 12 - Dec 2017

Our Life Depends on This Drug: Competence, Inequity, and Voluntary Consent in Clinical Trials on Supervised Injectable Opioid Assisted Treatment Daniel Steel, Kirsten Marchand & Eugenia Oviedo-Joekes

American Journal of Bioethics: Volume 17 Issue 12 - Dec 2017

Reframing Consent for Clinical Research: A Function-Based Approach Neal W. Dickert, Nir Eyal, Sara F. Goldkind, Christine Grady, Steven Joffe, Bernard Lo, Franklin G. Miller, Rebecca D. Pentz, Robert Silbergleit, Kevin P. Weinfurt, David Wendler & Scott Y. H. Kim

American Journal of Bioethics: Volume 17 Issue 12 - Dec 2017

The Idea of a “Standard View” of Informed Consent Tom L. Beauchamp

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News (422)

April 10, 2018 9:00 am

Facebook's facial recognition violates user privacy, watchdog groups plan to tell FTC (USA Today)

Already under siege over loose privacy controls and Russian manipulation, Facebook is about to be challenged on another issue: facial recognition. The Electronic Privacy Information Center and several other consumer groups plan Friday to file a complaint with the Federal Trade Commission asking for an investigation into the network’s use of facial recognition technology.

April 9, 2018 9:00 am

Facebook Decides Now's Not a Great Time to Harvest Patients' Medical Data (Fortune)

According to CNBC, the company was as recently as last month talking to the likes of Stanford Medical School about setting up a data-sharing agreement for a research project with a focus on heart disease. “This work has not progressed past the planning phase, and we have not received, shared, or analyzed anyone’s data,” Facebook told CNBC, which reported that the plan was put on hold following the Cambridge Analytica data privacy scandal, and the subsequent revelations about Facebook’s data-sharing practices.

April 5, 2018 9:00 am

NIH moves to punish researchers who violate confidentiality in proposal reviews (Science)

When a scientist sends a grant application to the U.S. National Institutes of Health (NIH) in Bethesda, Maryland, and it goes through peer review, the entire process is supposed to be shrouded in secrecy. But late last year, NIH officials disclosed that they had discovered that someone involved in the proposal review process had violated confidentiality rules designed to protect its integrity. As a result, the agency announced in December 2017 that it would rereview dozens of applications that might have been compromised.

April 4, 2018 9:00 am

Pioneering Alzheimer’s study in Colombia zeroes in on enigmatic protein (Nature)

Researchers tracking a genetic mutation that causes an early-onset form of the disease hope to uncover new drug targets.

March 29, 2018 9:00 am

The Struggle to Build a Massive ‘Biobank’ of Patient Data (The New York Times)

The goal is to find one million people in the United States, from all walks of life and all racial and ethnic groups, who are willing to have their genomes sequenced, and to provide their medical records and regular blood samples.

They may choose to wear devices that continuously monitor physical activity, perhaps even devices not yet developed that will track heart rate and blood pressure. They will fill out surveys about what they eat and how much.

If all goes well, experts say, the result will be a trove of health information like nothing the world has seen. The project, called the All of Us Research Program, should provide new insights into who gets sick and why, and how to prevent and treat chronic diseases.

February 20, 2018 9:00 am

Genome editor CRISPR’s latest trick? Offering a sharper snapshot of activity inside the cell (Science)

Airplane flight recorders and body cameras help investigators make sense of complicated events. Biologists studying cells have tried to build their own data recorders, for example by linking the activity of a gene of interest to one making a fluorescent protein. Their goal is to clarify processes such as the emergence of cancer, aging, environmental impacts, and embryonic development.

February 7, 2018 9:00 am

Big tobacco’s offer: $1 billion for research. Should scientists take it? (Science)

Utrecht University (UU) in the Netherlands thought it had nothing to be ashamed of when it accepted a €360,000 research grant from Philip Morris International (PMI) last September. The tobacco giant had agreed to fund a study on cigarette smuggling that had obvious public health importance, and the lead researcher, law professor John Vervaele, would enjoy complete academic freedom. Sure, there had been a “thorough debate” about the grant, Vervaele said in a press release, “but the tobacco industry is not illegal. The illicit tobacco trade is.”

December 26, 2017 9:00 am

NIH Lifts Ban On Research That Could Make Deadly Viruses Even Worse (NPR)

Scientists could soon resume controversial experiments on germs with the potential to cause pandemics, as government officials have decided to finally lift an unusual three-year moratorium on federal funding for the work. The research involves three viruses — influenza, SARS, and MERS — that could kill millions if they mutated in a way that let the germs spread quickly among people.

November 14, 2017 9:00 am

Lab-grown ‘minibrains’ are revealing what makes humans special (Science)

Ever since Alex Pollen was a boy talking with his neuroscientist father, he wanted to know how evolution made the human brain so special. Our brains are bigger, relative to body size, than other animals’, but it’s not just size that matters. “Elephants and whales have bigger brains,” notes Pollen, now a neuroscientist himself at the University of California, San Francisco. Comparing anatomy or even genomes of humans and other animals reveals little about the genetic and developmental changes that sent our brains down such a different path.

November 10, 2017 9:00 am

Former GSK boss to lead new UK accelerated drug access scheme (Reuters)

Former GlaxoSmithKline boss Andrew Witty is to lead a new British scheme to accelerate access to ground-breaking medicines for conditions such as cancer, dementia and diabetes from April 2018.

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