Hot Topics: Informed Consent

Blog Posts (99)

December 11, 2018

BioethicsTV (December 3-5): #TheGoodDoctor, #ChicagoMed

by Craig Klugman, PhD

Jump to The Good Doctor (Season 2; Episode 10): Epidemic & Virtue Ethics; Jump to Chicago Med (Season 4; Episode 9): Not following patient wishes

The Good Doctor (Season 2; Episode 10): Epidemic & Virtue Ethics

This episode revolves around an unidentified pathogen invading the ED when two patients are brought in immediately after their flight from Malaysia lands.…

December 7, 2018

CRISPR in China: Why Did the Parents Give Consent?

The global scientific community has been unanimous in condemning Chinese scientist He Jiankui, who announced last week that he used the gene-editing technology called CRISPR to make permanent, heritable changes to the genes of two baby girls who were born this month in China. Criticism has focused on He’s violation of worldwide acknowledgement that CRISPR… Read more

The post CRISPR in China: Why Did the Parents Give Consent? appeared first on The Hastings Center.

November 27, 2018

Birth of Twins from Embryo Editing Raise Ethical, Legal, and Social Issues

Updated November 28 at 8:30am EST

by Craig Klugman, Ph.D.

The film GATTACA turned 20 years old this year. The premise of that film is a society where DNA is viewed as predictive of everything: Your intelligence, physical abilities, your health, even how long you will live.…

November 16, 2018

BioethicsTV (November 13-16): #TheGoodDoctor, #ChicagoMed

by Craig Klugman, Ph.D.

Jump to The Good Doctor (Season 2; Episode 7): Directed donation; Jump to Chicago Med (Season 4; Episode 8): DNR Tattoos and Ethics Committees

As many of our favorite medical dramas head to their fall finales, they focused more on sentimental stories in the personal lives of characters, or feel good cases that did not raise any ethical issues.…

October 22, 2018

BioethicsTV (October 15-18) #TheResident, #TheGoodDoctor, #NewAmsterdam, #ChicagoMed

by Craig Klugman, Ph.D.

“Exploring ethical issues in TV medical dramas”

Jump to The Resident (Season 2; Episode 4): Medical Lawsuits; Jump to The Good Doctor (Season 2; Episode 4): Inappropriate coercion to remove autonomy; Jump to New Amsterdam (Season 1; Episode 4): Conflicts of interest; Giving bad news; Jump to Chicago Med (Season 4: Episode 4): When medicine and immigration collide; tough choices


The Resident (Season 2; Episode 4): Medical Lawsuits

This episode is less about particular stories than the about the topic of malpractice lawsuits.…

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.…

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Published Articles (50)

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

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

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News (31)

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.

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.

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