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Bioethics news.

A new treatment promises to make little people taller. Is it an insult to ‘dwarf pride’?
Scientists have come up with a drug, injected once a day, that appears to make children’s bones grow. To many, it’s a wondrous invention that could improve the lives of thousands of people with dwarfism. To others, it’s a profit-driven solution in search of a problem, one that could unravel decades of hard-won respect for an entire community.
The Ventilator: Life, Death And The Choices We Make At The End
This is the story of the Rinka family and what happened when tragedy befell them. It’s a story that explores how the choices we prefer when we’re healthy may no longer make sense to us when we’re actually confronting death.
How Google Interferes With Its Search Algorithms and Changes Your Results
The internet giant uses blacklists, algorithm tweaks and an army of contractors to shape what you see
Big study casts doubt on need for many heart procedures
People with severe but stable heart disease from clogged arteries may have less chest pain if they get a procedure to improve blood flow rather than just giving medicines a chance to help, but it won’t cut their risk of having a heart attack or dying over the following few years, a big federally funded study found.
Molecular Scissors Could Help Keep Some Viral Illnesses At Bay
It’s not easy to treat viral infections. Just ask anyone with a bad cold or a case of the flu. But scientists in Massachusetts think they may have a new way to stop viruses from making people sick by using what amounts to a pair of molecular scissors, known as CRISPR.
In France, it’s illegal for consumers to order a DNA spit kit. Activists are fighting over lifting the ban
The French ban on direct-to-consumer genetic testing is part of the country’s bioethics laws, which legislators are supposed to revise every seven years. When those discussions got under way earlier this year, some geneticists expected the National Assembly to relax the rules about commercial DNA analysis. It didn’t.
CRISPR’s unwanted anniversary
There are key moments in the history of every disruptive technology that can make or break its public perception and acceptance. For CRISPR-based genome editing, such a moment occurred 1 year ago—an unsettling push into an era that will test how society decides to use this revolutionary technology.
Patient Care Is Wrenching: A Psychiatrist, a Nurse and a Doctor Bare All
Three books – written by a doctor, psychiatrist, and nurse – shine light on the emotional toll of providing care for critically ill patients.
Google to Store and Analyze Millions of Health Records
The tech company’s deal with Ascension is part of a push to use artificial intelligence to aid health services.
Science chief at NIH drug abuse institute resigned after sexual misconduct probe
In August, Antonello Bonci, scientific director of the National Institute on Drug Abuse (NIDA), resigned, and the agency’s director told employees in an email that Bonci would be running an addiction institute in Florida. Science has learned that Bonci’s departure followed an investigation spurred by an internal complaint, which alleged that he sexually targeted a trainee and later directed...
‘There’s no such thing as anonymity’: With consumer DNA tests, sperm banks reconsider long-held promises to donors
The rise of consumer genetic tests — which allow people to connect with relatives they never knew they had, including some who never intended to be found in the first place — is forcing sperm donation clinics to confront the fact that it is now virtually impossible to guarantee anonymity to their clients. Instead, sites like 23andMe and
Precision screening for familial hypercholesterolaemia: a machine learning study applied to electronic health encounter data
Cardiovascular outcomes for people with familial hypercholesterolaemia can be improved with diagnosis and medical management. However, 90% of individuals with familial hypercholesterolaemia remain undiagnosed in the USA. We aimed to accelerate early diagnosis and timely intervention for more than 1·3 million undiagnosed individuals with familial hypercholesterolaemia at high risk for early heart attacks and strokes by applying machine learning...
How do researchers acquire and develop notions of research integrity? A qualitative study among biomedical researchers in Switzerland
Structured training in research integrity, research ethics and responsible conduct of research is one strategy to reduce research misconduct and strengthen reliability of and trust in scientific evidence. However, how researchers develop their sense of integrity is not fully understood. We examined the factors and circumstances that shape researchers’ understanding of research integrity.
In China, Kids Of Unwed Mothers May Be Barred From Public Health Care, Education
Unwed pregnant women in China face a legal gray zone where they are unable to access public services for themselves and their children.
Whose Rights Come First: Doctors’ or Patients’?
Conscientious objection—everybody seems to be talking about it these days. What are the rights of physicians, pharmacists, nurses, or other healthcare workers to say that something may be legal but they refuse to do it?
New York Law Bans First Responders from Selling Patient Data
After reports some first responders were selling protected health information for fundraising and marketing purposes, New York’s Governor signed into a law a bill banning the sale of patient data.
How to Integrate Lived Experience Into Quality-of-Life Assessment in Patients Considering Facial Transplantation
Facial transplantation has gained increasing acceptance as a treatment option to improve quality of life (QoL) for persons suffering from severe facial disfigurement. Despite its growth, the field has yet to establish a consistent approach to assessing QoL in face transplant candidates and recipients that includes integration of meaningful patient-reported outcomes.
California’s Preemptive Blackouts Put A Strain On People With Home Medical Needs
The PG&E outages that have affected some 1.8 million Californians in the past few weeks, amid nerve-wracking warnings of wind and fire, have put a strain on people with home medical needs.  
A Gender Divide on Microaggressions in Medicine
In new research, women at medical schools reported that microaggressions were common in their workplaces. Their male colleagues did not.
Facebook vows strict privacy safeguards as it rolls out preventive-health tool
Facebook on Monday took a step into preventive medicine, rolling out a new tool to encourage users to get flu shots as well as appropriate cancer screenings and heart health tests. But the success of the new product may depend on whether the social media giant can regain consumers’ trust.
New blockchain ledger will let you sell personal healthcare data
IBM and a start-up have launched a blockchain-based app that lets patients eventually sell anonymized data to pharmaceutical companies, researchers and others while retaining greater control over privacy.
Ancestry Branches Out Into Genetic Health Screening
AncestryHealth offers a test for hereditary conditions such as breast cancer or heart disease, building on the company’s tools for tracking family history.
Fast DNA Sequencing Can Offer Diagnostic Clues When Newborns Need Intensive Care
When Nathaly Sweeney launched her career as a pediatric heart specialist a few years ago, she says, it was a struggle to anticipate which babies would need emergency surgery or when.”We just didn’t know whose heart was going to fail first,” she says. “There was no rhyme or reason who was coming to the intensive care unit over and...
AI is used to mine health data to find undiagnosed patients, offering a model for other diseases
Medical datasets marketed by data aggregators contain detailed information about the health conditions of millions of Americans. With the help of artificial intelligence, they could also be a boon in efforts by both providers and drug makers to identify people who don’t yet realize they have a serious disease.
Millions of black people affected by racial bias in health-care algorithms
Study reveals rampant racism in decision-making software used by US hospitals — and highlights ways to correct it.
Should Family Members See Patients Die in the I.C.U.?
Studies suggest that relatives don’t distract the medical team or interfere with decision-making when a patient is in cardiac arrest.
Facial-Recognition Software Was Able to Identify Patients From MRI Scans
Facial-recognition software correctly matched photos of research volunteers to unidentified medical scans of their heads, in a new study of images that are commonly used in brain research.
Prime editing: DNA tool could correct 89% of genetic defects
A new way of editing the code of life could correct 89% of the errors in DNA that cause disease, say US scientists. The technology, called prime editing, has been described as a “genetic word processor” able to accurately re-write the genetic code.
Estimating the success of re-identifications in incomplete datasets using generative models
While rich medical, behavioral, and socio-demographic data are key to modern data-driven research, their collection and use raise legitimate privacy concerns. Anonymizing datasets through de-identification and sampling before sharing them has been the main tool used to address those concerns. Here researchers propose a generative copula-based method that can accurately estimate the likelihood of a specific person to be correctly...
See A Controversial Swarm Of Genetically Modified Mosquitoes In A Lab In Italy
An international team of scientists is conducting a controversial experiment in Italy. The experiment is designed to test genetically modified mosquitoes that researchers hope could provide a powerful new weapon to fight malaria, which remains one of the world’s greatest scourges.