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Bioethics news.

Pfizer’s big data exec on pharma’s ‘arms race’ to partner with companies like Fitbit, 23AndMe, and others
Pharmaceutical giants are hunting for ways to tap into the data from your smart watch, your sleep tracker, and your genetic tests.
STAT, 01/23/2020
Diagnosed With Dementia, She Documented Her Wishes. They Said No.
At age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She sold her home and moved to Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.” And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made...
Kaiser Health News, 01/22/2020
Previously unseen mutations in stem cells of young donors can be passed to recipients, study finds
Doctors use stem cell transplants to treat patients with certain cancers or blood disorders. And donors, whose blood or bone marrow is used for the procedures, are typically young, for a variety of reasons. But a pilot study released Wednesday raised the possibility that such donors are also passing along mutations in stem cells that could lead to health problems for...
STAT, 01/21/2020
‘Donation after cardiac death’: New heart transplant method being tested for the first time in the U.S.
More than 250,000 people in the U.S. are currently at the end stages of heart failure, up to 15% of whom are in desperate need of a transplant. A new method of “reanimating” donor hearts from those who have died from cardiac failure is currently being tested in the U.S., and may soon ease that burden.
STAT, 01/20/2020
Research on embryo-like structures struggles to win US government funding
Scientists can now create clumps of cells that resemble human embryos, raising hopes that they could study the elusive first stages of human development while avoiding the ethical concerns that make it difficult to study actual human embryos. But US researchers say they are finding it increasingly difficult to obtain federal funding for such work.
Nature, 01/19/2020
Unapproved Drug for Babies? Ethics Experts Weigh In
Is it okay to give babies an investigational drug outside of a clinical trial? Ethics experts weigh in here.
Med Page Today, 01/18/2020
Embryo Research To Reduce Need For In Vitro Fertilization Raises Ethical Concerns
Researchers have conducted a controversial study that involved paying dozens of young women at a hospital near Puerto Vallarta, Mexico, to get artificially inseminated so their embryos could be flushed out of their bodies and analyzed for research purposes.
NPR, 01/17/2020
Trump administration to collect DNA data from some migrants in custody
, 01/16/2020
The Gene Drive Dilemma: We Can Alter Entire Species, but Should We?
A new genetic engineering technology could help eliminate malaria and stave off extinctions — if humanity decides to unleash it.
The New York Times, 01/15/2020
Is It Wrong To Volunteer At An Orphanage?
There’s a growing global campaign which may seem harsh and heartless. The message: Don’t visit orphanages.
National Public Radio, 01/14/2020
A Teenager’s Breakthrough Gene Therapy for Sickle Cell Disease
Meet Helen Obando, a shy 16-year-old who likes to dance when her body isn’t ravaged by the debilitating symptoms of sickle cell disease. After a lifetime of pain and potential permanent damage to her body, Helen had the opportunity to receive a breakthrough experimental treatment at Boston Children’s Hospital that would make her the youngest person in the U.S. to...
The New York Times, 01/13/2020
Hungary to provide free fertility treatment to boost population
Hungary will provide free in-vitro fertilisation (IVF) treatment to couples at state-run clinics, Prime Minister Viktor Orban has announced. He said fertility was of “strategic importance.”
BBC, 01/11/2020
Welcome, Baby Benjamin: Penn Medicine Birth Marks a Milestone in Uterus Transplant Clinical Trial
The birth of Benjamin Thomas Gobrecht defied both expectation and imagination: his mother, 33-year-old Jennifer Gobrecht, was born without a uterus. Benjamin, who arrived in November 2019 at the Hospital of the University of Pennsylvania, grew inside a womb Jennifer received as part of an organ transplant research trial over a year earlier.
Penn Medicine News, 01/10/2020
Russian journals retract more than 800 papers after ‘bombshell’ investigation
Academic journals in Russia are retracting more than 800 papers following a probe into unethical publication practices by a commission appointed by the Russian Academy of Sciences (RAS). The moves come in the wake of several other queries suggesting the vast Russian scientific literature is riddled with plagiarism, self-plagiarism, and so-called gift authorship, in which academics become a co-author...
Science Mag , 01/09/2020
The risks behind the hype of stem-cell treatments
Some private clinics are charging UK patients thousands of pounds for unproven and unregulated treatments using the “healing powers” of stem cells.
BBC, 01/08/2020
Quest to use CRISPR against disease gains ground
As the first clinical-trial results trickle in, researchers look ahead to more sophisticated medical applications for genome editing.
Nature, 01/07/2020
Colleges want freshmen to use mental health apps. But are they risking students’ privacy?
As student demand for mental health services grows, and more colleges turn to digital platforms, experts say universities must begin to consider their role as stewards of sensitive student information and the consequences of encouraging or mandating these technologies.
The Washington Post, 01/05/2020
AI ‘outperforms’ doctors diagnosing breast cancer
Artificial intelligence is more accurate than doctors in diagnosing breast cancer from mammograms, a study in the journal Nature suggests.
BBC, 01/04/2020
The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades
In the 30 years that biomedical researchers have worked determinedly to find a cure for Alzheimer’s disease, their counterparts have developed drugs that helped cut deaths from cardiovascular disease by more than half, and cancer drugs able to eliminate tumors that had been incurable. But for Alzheimer’s, not only is there no cure, there is not even a disease-slowing treatment.
STAT, 01/02/2020
Australian biobank repatriates hundreds of ‘legacy’ Indigenous blood samples
The return is part of a groundbreaking approach that could inspire other institutions grappling with how to use historical samples ethically in research.
Nature, 12/31/2019
Chinese Scientist Who Genetically Edited Babies Gets 3 Years in Prison
He Jiankui’s work was also carried out on a third infant, according to China’s state media, in a new disclosure that is likely to add to the global uproar over such experiments.
The New York Times, 12/30/2019
New Project Seeks to Build Diverse Participation in Precision Medicine Research
The Hastings Center is co-leading a new project to examine recruitment and retention of participants in the National Institutes of Health’s All of Us Research Program, an unprecedented initiative to collect genetic and other health-related data from at least one million people living in the United States.
The Hastings Center, 12/28/2019
Alzheimer’s Tests Soon May Be Common. Should You Get One?
Diagnostic tests for Alzheimer’s disease are already here. But the results may raise as many questions as they answer.
The New York Times, 12/27/2019
Pentagon tells military personnel not to use at-home DNA kits
The Pentagon said that potential inaccuracies in at-home DNA kits pose more risk to military members than regular consumers.
NBC News, 12/26/2019
Is Medical Aid in Dying a Human Right? Another View
In an essay for Bioethics Forum earlier this month, Alan B. Astrow concludes that medical aid in dying  is not a human right, though I will note that it is a state constitutional right in Montana and a legal right for the terminally ill in 10 other jurisdictions in the United States.
The Hastings Center, 12/23/2019
This Intersex Runner Had Surgery to Compete. It Has Not Gone Well.
Annet Negesa, Uganda’s 800-meter Olympic hopeful, says she was advised to undergo an irreversible surgery because of naturally elevated testosterone levels. Her career has never been the same.
The New York Times, 12/22/2019
The First African American Face Transplant
In 2013, Robert Chelsea was hit by a drunk driver and sustained third-degree burns on more than half of his body. Nearly six years later, he became the first African American recipient of a full face transplant.
National Public Radio, 12/21/2019
Should psychotherapists be required to report patients who look at child porn?
For years, California law required psychotherapists to report any patient who admitted developing, duplicating, printing or exchanging material depicting an obscene act involving a child. The therapists accepted that requirement. They regarded it as an obligation to report producers and distributors of child pornography. But when the Legislature amended the law in 2014 to reflect new technology, many therapists...
LA Times, 12/20/2019
Dating app based on genetic matching not eugenics, scientist says
A Harvard academic says the app he designed can prevent rare, hereditary diseases – and sinister interpretations are ‘ridiculous’
The Guardian , 12/19/2019
Booker, Wyden Demand Answers on Biased Health Care Algorithms
Letters to FTC, CMS, health care companies follow disturbing revelations of flawed algorithms impacting care for black patients
Cory Booker, 12/18/2019