Hot Topics: Informed Consent

Blog Posts (78)

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).…

February 22, 2018

Artist's Note-March 2018

Original art and artist’s blurbs are presented in collaboration with the students of the University of Illinois Chicago program in Biomedical Visualization. 
February 14, 2018

Is a Vitamin D placebo trial in children with asthma ethical?

by Craig Klugman, Ph.D.

In a 2017 article from India, researchers conducted a meta-analysis looking at vitamin D deficiency and asthma in children.…

February 5, 2018

I, My Love, and Apps

This blog is a post of an editorial in the February 2018 issue of the American Journal of Bioethics. You can access the issue’s table of contents here.

January 26, 2018

BioethicsTV (January 23-26, 2018): Lying, Abused Surrogates, Right to Die, Who Pays for Care #TheGoodDoctor #ChicagoMed #GreysAnatomy

by Craig Klugman, Ph.D.

The Good Doctor (Season 1; Episode 13): Lying to protect and an abused surrogate

After a resident puts his hand on a patient’s arm, she asks him not to touch him.…

January 19, 2018

BioethicsTV (January 15-19, 2018): Life and Death; Consent; Conflicting Mother-Baby Needs

by Craig Klugman, Ph.D.

The Good Doctor (Season 1; Episode 12): Life and Death

Continuing a storyline from last week, this episode centered around the conjoined twins who had to be quickly separated.…

January 12, 2018

BioethicsTV (January 8-12, 2018): Convincing Patients to Consent; History of Sterilization

by Craig Klugman, Ph.D.

The Good Doctor (Season 1; Episode 11): Coercing Consent

A pair of conjoined twins are in the hospital for a kidney transplant from one twin to the other.…

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Published Articles (44)

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

AJOB Primary Research: Volume 8 Issue 3 - Sep 2017

A randomized study of a method for optimizing adolescent assent to biomedical research Robert D. Annett PhD, Janet L. Brody, David G. Scherer, Charles W. Turner, Jeanne Dalen & Hengameh Raissy

AJOB Primary Research: Volume 8 Issue 3 - Sep 2017

Improving informed consent: Stakeholder views Emily E. Anderson, Susan B. Newman & Alicia K. Matthews

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News (28)

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.

January 20, 2017 9:00 am

How Science Is Helping Us Understand Gender (National Geographic)

A “neutral space” is a hard thing for a teenager to carve out: Biology has a habit of declaring itself eventually. Sometimes, though, biology can be put on hold for a while with puberty-blocking drugs that can buy time for gender-questioning children.

January 20, 2017 9:00 am

New Common Rule on the Federal Policy for the Protection of Human Subjects (Federal Register)

The departments and agencies listed in this document announce revisions to modernize, strengthen, and make more effective the Federal Policy for the Protection of Human Subjects that was originally promulgated as a Common Rule in 1991. This final rule is intended to better protect human subjects involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators.

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