Hot Topics: Informed Consent

Blog Posts (94)

October 12, 2018

BioethicsTV (October 8-12, 2018): #TheResident #TheGoodDoctor #ChicagoMed #GreysAnatomy

by Craig Klugman, Ph.D.

“Exploring ethical issues in TV medical dramas”

Jump to The Resident (Season 2; Episode 3): Saline shortage, pressure to bill; Jump to The Good Doctor (Season 2; Episode 3): Structural discrimination against women; surrogate decision-making; Jump to Chicago Med (Season 4; Episode 3): Best interest of a child; faith versus science; Jump to Grey’s Anatomy (Season 15; Episode 4): Fraud, assault, lies, and the ethics police

Medical dramas this week seemed to focus on two themes: 1.…

October 1, 2018

Sloan Kettering Controversies: Trust is the Public Foundation of Medical Research

by Ann Mongoven, PhD, MPH

Recent controversies at Memorial Sloan Kettering Cancer Center raise ethical questions about medical research that deserve public attention.…

September 7, 2018

RACeing to Deregulate: Can We Afford Less Oversight of Gene Transfer Research?

by Craig Klugman, Ph.D.

 “As gene therapy continues to change, so must the federal framework set up to oversee it.”-Francis Collins & Scott Gottlieb

In one of his first acts of office, Trump ordered executive agencies to reduce regulations.…

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 […]
August 31, 2018

FDA Approves Birth Control App: Ethics of Representation and Provider Counseling

by Craig Klugman, Ph.D.

“What do you call a couple that practices the rhythm method?”
“Parents”

This old joke is getting a modern twist as the FDA approvesNaturalCycles, a mobile app for charting fertility and determining what days are safe for sexual activity with a low risk of conceiving.…

August 23, 2018

My Advance Directive: A Narrative Approach

by Craig Klugman, Ph.D.

One of my summer projects has been to undertake the most dreaded of adult tasks, updating my last will and testament and advance directive.…

July 27, 2018

Fix Your Hearts, Not Their Parts

by Jenji Learn, MA

“Fix your hearts not our parts!”

”Autonomy, not surgery, my body belongs to ME!”

“Children have rights!”

Those were the pleas of the large gathering of Intersex people that assembled outside of Lurie Children’s Hospital in Chicago last Thursday, along with their families, friends, supporters, and Transex/Transgender allies, to voice their one, simple demand: “Stop mutilating us.…

July 11, 2018

Secret Twin Experiments & Bioethics.net 15 seconds of fame

by Craig Klugman, Ph.D.

On the advice of a family friend, I went to see the new documentary, Three Identical Strangers.

July 9, 2018

Social Media, Privacy, and Research: A Muddled Landscape

The advent of social media technology has opened many new avenues of research in population health, demographics, psychology, and the social sciences. It is crucial to consider whether researchers conducting observational research using social media need to obtain consent from their research subjects, and whether the current research regulations in the United States establish effective,… Read more

The post Social Media, Privacy, and Research: A Muddled Landscape appeared first on The Hastings Center.

July 5, 2018

BioethicsTV (June 27-July 4): #CodeBlack

Code Black (Season 3; Episode 10): Patients Asking Doctors to Lie to Family Members; Code Black (Season 3; Episode 11): Law enforcement pressuring nurse for blood draw

by Craig Klugman, Ph.D.

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Published Articles (47)

AJOB Neuroscience: Volume 18 Issue 3 - Sep 2018

Telling the Truth About Pain: Informed Consent and the Role of Expectation in Pain Intensity Nada Gligorov

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

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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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