Hot Topics: Informed Consent

Blog Posts (84)

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 […]
May 8, 2018

Speaking to the Media about Antimicrobial Resistance: A Deeper Description of How I Wear Many Hats as a Bioethicist

by Craig Klugman, Ph.D.

Last week, I was interviewed by an academic news serviceabout antimicrobial resistance (AMR) after a study reported that giving antibiotics to children in selected African towns led to a decreased mortality rate.  …

May 2, 2018

From Westworld to the Rest of the World: Time to Regulate the Mining of Third Party Data

by Craig Klugman, Ph.D.

You do not have control over your ideas, your passions, or even your DNA anymore. Your biological material and your ideas may be taken without your awareness of it.…

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.

March 20, 2018

Your Cell Phone Is Tattling About Your Health

by Craig Klugman, Ph.D.

As you may have heard in the news, Cambridge Analytica is a big data company that “uses data to change audience behavior.”  As they say on their website, “We find your voters and move them to action.” Allegedly, the company promised Republicans that they could influence the outcome of elections.…

March 17, 2018

BioethicsTV: (March 9-14): Mary Kills People; The Good Doctor; The Resident

by Craig Klugman, Ph.D.

  1. Mary Kills People (Season 2; Episode 1): Helping the healthy to die

This season picks up where the last season left off, with Desmond in prison and Mary carrying on helping people die.…

March 12, 2018

The Undue Burden of Modern, Computerized Global Consent Forms

by Craig Klugman, Ph.D.

Last week I had to visit a doctor at a large urban medical center (it was a minor yoga injury).…

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Published Articles (46)

AJOB Primary Research: Volume 9 Issue 2 - Jun 2018

Patient perspectives on compensation for biospecimen donation Samuel C. Allen, Minisha Lohani, Kristopher A. Hendershot, Travis R. Deal, Taylor White, Margie D. Dixon & Rebecca D. Pentz

AJOB Primary Research: Volume 9 Issue 2 - Jun 2018

An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research Erin Rothwell, Jeffrey R. Botkin, Sydney Cheek-O'Donnell, Bob Wong, Gretchen A. Case, Erin Johnson, Trent Matheson, Alena Wilson, Nicole R. Robinson, Jared Rawlings, Brooke Horejsi, Ana Maria Lopez & Carrie L. Byington

AJOB Neuroscience: Volume 9 Issue 1 - Mar 2018

Disorders of Consciousness, Agency, and Health Care Decision Making: Lessons From a Developmental Model Megan S. Wright, Claudia Kraft, Michael R. Ulrich & Joseph J. Fins

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

AJOB Primary Research: Volume 8 Issue 4 - Dec 2017

Views of clinical trial participants on the readability and their understanding of informed consent documents Rita Somers, Cornelius Van Staden & Francois Steffens

American Journal of Bioethics: Volume 17 Issue 11 - Nov 2017

Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy Peter A. Ubel, Karen A. Scherr & Angela Fagerlin

American Journal of Bioethics: Volume 17 Issue 11 - Nov 2017

Reasons to Amplify the Role of Parental Permission in Pediatric Treatment Mark Christopher Navin & Jason Adam Wasserman

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News (30)

May 11, 2018 9:00 am

‘I saved them because I’m a superhero!’: 4-year-old donates bone marrow to his baby brothers (Washington Post)

The 4-year-old boy fancied himself a real-life superhero, wearing a blue T-shirt with photographs of his 4-month-old twin brothers, who were born with a rare immunodeficiency disease. Michael’s little brothers —  Santino, “Sonny,” and Giovanni, “Gio” — needed a bone-marrow transplant, and when his parents told him that he was a donor match, Michael told them that he wanted to save his brothers and would give them some of his.

May 2, 2018 4:40 pm

NIH seeks health data of 1 million people, with genetic privacy suddenly an issue (Washington Post)

The National Institutes of Health on Tuesday announced the launch of its attempt to enroll 1 million people in a landmark research effort aimed at developing “personalized” methods of prevention, treatment and care for a wide variety of diseases. The “All of Us” recruitment effort begins Sunday with community events in seven sites around the country, where people will be encouraged to sign up for the mammoth research project.

January 2, 2018 9:00 am

Retirement home shut down months after attack on 86-year-old (CNN)

November 9, 2017 9:00 am

Infusions of young blood tested in patients with dementia (Nature)

The first controlled, but controversial and small, clinical trial of giving young blood to people with dementia has reported that the procedure appears safe. It has also hinted that it may even produce modest improvements in the daily lives of people who have Alzheimer’s disease.

June 14, 2017 9:00 am

Heaven over hospital: Dying girl, age 5, makes a choice (CNN)

Julianna Snow is dying of an incurable disease. She’s stable at the moment, but any germ that comes her way, even just the common cold virus, could kill her. She’s told her parents that the next time this happens, she wants to die at home instead of going to the hospital for treatment. If Julianna were an adult, there would be no debate about her case: She would get to decide when to say “enough” to medical care and be allowed to die. But Julianna is 5 years old. Should her parents have let her know how grave her situation is? Should they have asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them?
May 19, 2017 9:00 am

For Tuskegee Syphilis Study Descendants, Stigma Hasn't Faded (The New York Times)

For 40 years starting in 1932, medical workers in the segregated South withheld treatment for unsuspecting men infected with a sexually transmitted disease simply so doctors could track the ravages of the horrid illness and dissect their bodies afterward. Finally exposed in 1972 , the study ended and the men sued, resulting in a $9 million settlement. Twenty years ago this May, President Bill Clinton apologized for the U.S. government. It seemed to mark the end of this ugly episode, once and for all. Except it didn’t.

April 6, 2017 9:00 am

Trump Completes Repeal of Online Privacy Protections From Obama Era (Washington Post)

President Trump on Monday signed a congressional resolution to complete the overturning of internet privacy protections created by the Federal Communications Commission during the Obama administration. The change will allow broadband internet service suppliers, such as cable and telecommunications companies, to track and sell a customer’s online information with greater ease.

March 23, 2017 9:00 am

San people of Africa draft code of ethics for researchers (Science)

The San people of Southern Africa are among the closest living relatives of our hunting and gathering ancestors. Scientists have flocked to study their age-old rituals and ancient genetic fingerprints. Now, after more than a century of being scrutinized by science, the San are demanding something back. Earlier this month the group unveiled a code of ethics for researchers wishing to study their culture, genes, or heritage.

March 20, 2017 9:00 am

Informed Patient? Don’t Bet On It (New York Times)

As doctors, our goal is to help you, of course, and to do no harm. But we may actually hurt you, irreversibly. Not that this happens frequently, but it might. How does that sound? Ready to take the plunge? The secret is that informed consent in health care is commonly not-so-well informed. It might be a document we ask you to sign, at the behest of our lawyers, in case we end up in court if a bad outcome happens. Unfortunately, it’s often not really about informing you.

February 10, 2017 9:00 am

Brain researchers fight National Hockey League’s demand for records (Science)

A pair of Boston University (BU) brain researchers is pushing back against demands by the National Hockey League (NHL) that they release data, brain pathology slides, and interview records of former NHL players and their families. The scientists accumulated the records during their research on chronic traumatic encephalopathy (CTE), a neurodegenerative disease that has been linked to repetitive head trauma.

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