Hot Topics: Research Ethics

Blog Posts (112)

November 26, 2018

Aligning Research Priorities to Improve Equity: A Challenge for Health Funders

This post can also be found as the November 2018 editorial in the American Journal of Bioethics

by Alonzo L.

November 2, 2018

BioethicsTV (October 29-November 2): #TheGoodDoctor; #ChicagoMed

by Craig Klugman, Ph.D.

 “Exploring ethical issues in TV medical dramas”
Jump to The Good Doctor (Episode 2; Episode 5): “No, Dr.

September 27, 2018

Europe is Pounding on the Paywalls of Research Publishing—Will USA Join Forces?

by Katrina A. Bramstedt, PhD

The 2015 headline was startling: “[US] Taxpayers spend $140 billion funding science each year — but can’t access many of the results.” In fact, gaining access to research results is costing universities and government organizations in the US $10 billion per year.…

August 31, 2018

On Protecting the Agency of Undocumented Immigrants from Patterns of Our Past

STUDENT VOICES | CHYNN ETHICS PRIZE HONORABLE MENTION By Elizabeth Doty In the history of the United States rhetoric alienating immigrants, documented and undocumented, has consistently pervaded everyday life across the nation, from the front page of The New York Times to college campuses to airports to Congressional hearings to, indeed, even research. While I […]
June 26, 2018

Welcome to the 2018 HIV and Drug Abuse Prevention Research Ethics Training Institute Fellows!

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 2018 Fellows: The Fordham University  HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI), now in its 8th year, is a training grant sponsored by the National Institute on Drug Abuse (NIDA) (R25 DA031608-08), Principal Investigator, […]
June 6, 2018

The Trumpification of Research Ethics: It’s Now OK to Use Prisoners as Guinea Pigs

By Celia Fisher, PhD Fordham University Federal regulations prohibiting scientists from using prisoners to study health problems not directly related to the causes and conditions of their incarceration are now threatened by the same morally ambiguous forces undermining other U.S. regulations designed to protect the public.  As reported in The New York Times, to resolve scientific […]
June 6, 2018

The Trumpification of Research Ethics: It’s Now OK to Use Prisoners as Guinea Pigs

By Celia Fisher, PhD Fordham University Federal regulations prohibiting scientists from using prisoners to study health problems not directly related to the causes and conditions of their incarceration are now threatened by the same morally ambiguous forces undermining other U.S. regulations designed to protect the public.  As reported in The New York Times, to resolve scientific […]
May 17, 2018

Big Data Studies and Abuse of Fiduciary Duties

by Craig Klugman, Ph.D.

A study published in the May 17th, 2018 issue of Cell, “Disease Heritability Inferred from Familial Relationships Reported in Medical Records,” shows a connection between families and certain diseases at three large urban university medical centers.…

May 16, 2018

The Homeless as Human Subjects

STUDENT VOICES | CHYNN ETHICS PRIZE FIRST-PLACE WINNER By Sarah Reis During my senior year of high school, on a bitter Saturday morning in January, I found myself at the entrance to the Boston Common assisting other volunteers from the Sock Exchange charity in organizing food and clothing for distribution to the homeless of the […]
April 25, 2018

Fordham University’s Dr. Celia Fisher on Patient-Provider Communications with Gay Teens

Fordham University’s Celia Fisher, PhD was the Principal Investigator on a recently completed quantitative study that resulted in a paper published in the journal AIDS and Behavior titled “Patient-Provider Communication Barriers and Facilitators to HIV and STI Preventive Services for Adolescent MSM.” The purpose of this study was to explore adolescent men who have sex with men (AMSM) […]

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Published Articles (224)

American Journal of Bioethics: Volume 18 Issue 11 - Nov 2018

Health Research Priority Setting: The Duties of Individual Funders Leah Pierson & Joseph Millum

AJOB Primary Research: Volume 9 Issue 3 - Nov 2018

Reliance agreements and single IRB review of multisite research: Concerns of IRB members and staff Charles W. Lidz, Ekaterina Pivovarova, Paul Appelbaum, Deborah F. Stiles, Alexandra Murray & Robert L. Klitzman

AJOB Primary Research: Volume 9 Issue 3 - Nov 2018

Moving beyond the theoretical: Medical students’ desire for practical, role-specific ethics training Shana D. Stites, Justin Clapp, Stefanie Gallagher & Autumn Fiester

AJOB Primary Research: Volume 9 Issue 3 - Nov 2018

Data and tissue research without patient consent: A qualitative study of the views of research ethics committees in New Zealand Angela Ballantyne & Andrew Moore

AJOB Primary Research: Volume 9 Issue 3 - Nov 2018

Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey Armand H. Matheny Antommaria, Kyle B. Brothers, John A. Myers, Yana B. Feygin, Sharon A. Aufox, Murray H. Brilliant, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, Rongling Li, Evette J. Ludman, Catherine A. McCarty, Jennifer B. McCormick, Nathaniel D. Mercaldo, Melanie F. Myers, Saskia C. Sanderson, Martha J. Shrubsole, Jonathan S. Schildcrout, Janet L. Williams, Maureen E. Smith, Ellen Wright Clayton & Ingrid A. Holm

AJOB Primary Research: Volume 9 Issue 3 - Nov 2018

“I didn’t have anything to decide, I wanted to help my kids”—An interview-based study of consent procedures for sampling human biological material for genetic research in rural Pakistan Nana Cecilie Halmsted Kongsholm, Jesper Lassen & Peter Sandøe

American Journal of Bioethics: Volume 18 Issue 10 - Oct 2018

The One Health Approach to Zoonotic Emerging Infectious Diseases Ariadne Nichol & David Magnus

American Journal of Bioethics: Volume 18 Issue 10 - Oct 2018

A Radical Approach to Ebola: Saving Humans and Other Animals Sarah J. L. Edwards, Charles H. Norell, Phyllis Illari, Brendan Clarke & Carolyn P. Neuhaus

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

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News (456)

December 14, 2018 11:43 am

Gene editing: who should decide? (Nature)

Last month’s announcement claiming the birth of the world’s first genome-edited babies has sparked a furore over how to regulate this cutting-edge technology (see Nature 563, 607–608; 2018, and Nature564, 5; 2018). In our view, piling up scientist-led conferences modelled on Asilomar in 1975 (see Nature 526, 293–294; 2015) without any clear consensus is futile.

December 13, 2018 9:15 am

Trump administration halts study that would use fetal tissue ‘to discover a cure for HIV’ (The Washington Post)

The shutdown of the HIV research at the federal lab in Montana, first reported in Science, was never disclosed publicly by government officials, who have forbidden affected researchers from discussing what happened. But colleagues say they are incensed by the action, which has fanned a controversy that pits the biomedical research community against antiabortion activists and other social conservatives pressing the administration to stop the flow of federal grants and contracts for work involving fetal tissue. Such tissue comes from elective abortions.

December 11, 2018 9:15 am

What These Medical Journals Don’t Reveal: Top Doctors’ Ties to Industry (The New York Times)

The Sarah Cannon Research Institute, based in Nashville, received nearly $8 million in payments from drug companies on behalf of its president for clinical operations, Dr. Howard Burris, largely for research work. Dozens of his articles published in prestigious medical journals did not include the required disclosures of those payments and relationships.

December 11, 2018 9:15 am

The CRISPR Baby Scandal Gets Worse by the Day (The Atlantic)

Before last week, few people had heard the name He Jiankui. But on November 25, the young Chinese researcher became the center of a global firestorm when it emerged that he had allegedly made the first crispr-edited babies, twin girls named Lulu and Nana. Antonio Regalado broke the story for MIT Technology Review, and He himself described the experiment at an international gene-editing summit in Hong Kong. After his talk, He revealed that another early pregnancy is under way.

It is still unclear if He did what he claims to have done. Nonetheless, the reaction was swift and negative. The crispr pioneer Jennifer Doudna says she was “horrified,” NIH Director Francis Collins said the experiment was “profoundly disturbing,” and even Julian Savulescu, an ethicist who has described gene-editing research as “a moral necessity,” described He’s work as “monstrous.”

December 9, 2018 12:47 pm

Why Are Scientists So Upset About the First Crispr Babies? (The New York Times)

A Chinese scientist recently claimed he had produced the world’s first gene-edited babies, setting off a global firestorm. If true — the scientist has not yet published data that would confirm it — his actions would be a sensational breach of international scientific conventions. Although gene editing holds promise to potentially correct dangerous disease-causing mutations and treat some medical conditions, there are many safety and ethical concerns about editing human embryos.

Here are answers to some of the numerous questions swirling around this development.

December 7, 2018 9:15 am

Policy Recommendations: Control and Responsible Innovation of Artificial Intelligence (The Hastings Center)

A major international project at The Hastings Center released policy recommendations for the development of artificial intelligence and robotics to help reap the benefits and productivity gains and minimize the risks and undesirable social consequences.

“Research, innovation, and the deployment of AI and robotic systems are proceeding rapidly, and so, too, is the emergence of a transdisciplinary community of researchers in AI and the social sciences dedicated to AI safety and ethics,” states the executive summary to the final report. “The Hastings AI workshops played a seminal role in catalyzing the emergence of this worldwide network of organizations and individuals.” The Hastings Center’s project, Control and Responsible Innovation in the Development of AI and Robotics, was funded by the Future of Life Institute and led by Wendell Wallach, a senior advisor at The Hastings Center and a scholar at Yale University’s Interdisciplinary Center for Bioethics. Wallach is an internationally recognized expert on the ethical and governance concerns posed by emerging technologies, particularly artificial intelligence and neuroscience. Project participants included Stuart Russell, of the University of California, Berkeley; Bart Selman, of Cornell University; Francesca Rossi, of IBM; and David Roscoe, a Hastings Center advisory council member.

December 6, 2018 4:15 pm

Should We Edit the Human Germline? Is Consensus Possible or Even Desirable? (The Hastings Center)

On the one hand, reports of a rogue scientist, He Jiankui, who contravened the scientific and ethical norms that should guide the development of human genome editing reinforces the need for clarity about those norms and international monitoring of advances in the field. On the other hand, it shows the weaknesses and limitations of voluntary efforts – like the summit – to guide scientists’ practices. They lack any real enforcement power on their own, and have largely served to ensure that human genome editing research can continue, rather than promote reflection on whether we should edit the human germline in the first place.

December 6, 2018 9:00 am

If you’re single with cancer, you may get less aggressive treatment than a married person (The Washington Post)

If you are divorced, widowed or never married and develop cancer, watch out. You may get less aggressive treatment than your married friends.

We’ve often heard about studies showing that married adults are more likely to survive cancer than singles. But buried in those same studies is another finding that hasn’t made the headlines. When surgery or radiotherapy is the treatment of choice, patients with spouses are more likely to get it.

December 5, 2018 9:15 am

Genetically Modified People Are Walking Among Us (The New York Times)

It felt as if humanity had crossed an important line: In China, a scientist named He Jiankui announced on Monday that twins had been born in November with a gene that he had edited when they were embryos.

But in some ways this news is not new at all. A few genetically modified people already walk among us.

November 29, 2018 9:15 am

Who owns your medical data? Most likely not you. (The Washington Post)

Do you think you own your own medical data? Your hospital and doctor records, lab and radiology tests, genetic information, even the actual tissue removed during a biopsy or other surgical procedure? Well, you don’t.

It’s a good bet that the fine print of the consent form you signed before your latest test or operation said that all the data or tissue samples belong to the doctor or institution performing it. They can study it, sell it or do whatever they want with it, without notifying or compensating you, although the data must be depersonalized in their best effort to make sure you are anonymous.

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