Hot Topics: Informed Consent
by Ann Mongoven, Ph.D.
… Full Article
[Editor’s note: Breaking news about a new data contract between Amazon and the U.K’s National Health Service underscores the need for ethical reflection on commercial/non-profit collaborations in health data analytics.
by Craig Klugman, Ph.D.
In late August 2019, BuzzFeed reported that, “The Trump administration wants to enable Customs and Border Protection officials to collect DNA samples from undocumented immigrants in its custody”.…Full Article
by Craig Klugman, Ph.D.Full Article
This editorial is co-posted with the American Journal of Bioethics.
by Emily A. Largent JD, PhD, RN, Ezekiel J.…Full Article
by Craig Klugman, Ph.D.
After age 40, the risk of developing a cataract increases. By 75 years of age in the U.S.,half of whites, 53 percent of blacks and 61 percent of Latinx develop cataracts.…Full Article
by Craig Klugman, Ph.D.
Few people would say that the system of payment and organ distribution is perfect. About 37 million Americans suffer from kidney disease and 94,831 are candidates (as of July 10, 2019) for kidney transplant.…Full Article
Exploring ethical issues in medical dramas
A middle-aged man comes to the ER unable to speak and without ID.…Full Article
This blog post made available by the American Journal of Bioethics. You can read this editorial and accompanying articles here.… Full Article
Politics Guatemalan Teen Falls Ill, Dies After Transfer to U.S. Border Shelter “The boy was the third migrant child to die in federal custody in the past five months, as a soaring number of Central American families and unaccompanied minors have been trying to enter the United States via the southern border. Advocates for immigrants […]Full Article
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
Nancy Cruzan and the Withhold Versus Withdraw Dilemma
Data and tissue research without patient consent: A qualitative study of the views of research ethics committees in New Zealand
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
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.Full Article
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.Full Article