Hot Topics: Informed Consent
by Andrew Helmers, MDCM, MHSc (Bioethics), MSc, FRCPC
The Journal of Vascular Surgery (and Irony) published a rather odd piece that set Twitter ablaze even amidst the wildfire that is COVID-19.…Full Article
by Arnold R. Eiser, MD MACP
Our healthcare system is failing our most senior citizens by assuming they want and need to receive maximal technological intervention despite modest or minimal benefit to them and the increasing of substantial discomfort to them.…Full Article
by Jing Wan,Yuqiong Huang, Amaneh Abdel Hafez Aljaafreh, Dandan Dong, Yali Cong , Jun Lin, Hongxiang Chen
COVID-19 is an emerging infectious disease that is extremely contagious and can cause serious consequences and even death.
by Katharine Wright & Julian Sheather
Pratt et al. highlight important ways in which solidarity between researchers and communities provides both an ethical underpinning, and an ethical goal, for community engagement in global health research.…Full Article
by Jerry Menikoff, MD, JD
In a world with far too much dissonance, sometimes things nonetheless manage to come together. Such is the case regarding the article by Dickert and colleagues in this issue, “Partnering with Patients to Bridge Gaps in Consent for Acute Care Research”, and the recent changes in the Common Rule relating to improving research consent.…Full Article
by Alex Dubov, Ph.D. and Steven Shoptaw, Ph.D.
As the world grapples with COVID-19, experts are calling for better identification and isolation of new cases.…
by Keisha Ray, Ph.D.
I take the drug hydroxychloroquine, brand name Plaquenil, for an autoimmune disease. Hydroxychloroquine was once used to treat malaria and is now commonly used to treat a range of inflammatory disorders like lupus and rheumatoid arthritis.…Full Article
by Craig Klugman, Ph.D.
In a news item reported in Rolling Stone, NPR, and The Houston Chronicle, the medical director of a coastal Texas nursing home used his political connections to get enough hydroxychloroquine to begin his own “observational” trials—minus a control group, minus informed consent, minus informing anyone.…Full Article
by Thibaud Haaser, MD, PhD
The current coronavirus pandemic challenges health care systems, raises ethical questions about health policies, and makes some countries fear or even face dilemmas over the allocation of scarce resources.…Full Article
How Bioethics and Case Law Diverge in Assessments of Mental Capacity: An Argument for a Narrative Coherence Standard
Principles of Biomedical Ethics: Marking Its Fortieth Anniversary
Older Teens’ Understanding and Perceptions of Risks in Studies With Genetic Testing: A Pilot Study
Exploring Understanding of “Understanding”: The Paradigm Case of Biobank Consent Comprehension
Preventive Misconception and Risk Behaviors in a Multinational HIV Prevention Trial
When Is It Ethical for Physician-Investigators to Seek Consent From Their Own Patients?
How Conducting “Usual Care” Research Might Affect Obtaining Consent
Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences
The patients of Mayo Clinic, whether they know it or not, have seeded a burgeoning digital health industry with their personal data. Details about their care, from disease diagnoses to digital tracings of their heartbeats, have been provided to companies for training artificial intelligence systems to detect dangerous arrhythmias, pregnancy complications, and deterioration in the hospital.Full Article
Who should decide whether medical intervention on a child’s body is necessary? Ideally, the person who will undergo the treatment should have a say in these decisions. Patients themselves, even if they are children, should understand all their options and assent to whatever procedures are on the table.Full Article
The return is part of a groundbreaking approach that could inspire other institutions grappling with how to use historical samples ethically in research.Full Article
The Trump-Pence administration just made an unprecedented move to implement an unethical “gag” rule, prohibiting doctors and nurses from providing millions of patients with full information about their health-care options. This is a serious threat to the deep trust between health-care providers and our patients, and an attack on access to health care for those who need it most.Full Article
If no one reads the terms and conditions, how can they continue to be the legal backbone of the internet?
The average person would have to spend 76 working days reading all of the digital privacy policies they agree to in the span of a year. Reading Amazon’s terms and conditions alone out loud takes approximately nine hours.Full Article
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.Full Article
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.Full Article
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.Full Article
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.Full Article