News from Bioethics.com

He Was a Champion of Public Health–But Played a Role in the Horrors of the Tuskegee. Should a College Expunge His Name?

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(STAT News) – He was surgeon general under President Franklin Roosevelt. He’s been lauded for turning sexually transmitted diseases from a moral failing into a medical concern. During the height of segregation, he acknowledged the need to stem health disparities between black and white America. But Dr. Thomas Parran Jr., whose name graces the main building of the University of Pittsburgh Graduate School of Public Health, has also been called an architect of the syphilis experiments on black men and women in Tuskegee, Ala.

The Life and Death of Alfie Evans Highlights the Gap Between the US and Europe on Right to Life

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(Quartz) – A baby boy named Alfie Evans died early this morning at the Alder Hey Children’s Hospital in Liverpool, England, in the pediatric intensive care unit that had been his home for the last 18 months. The life he lived for close to 24 months was mercilessly short, yet full of meaning. He didn’t know it, but he was at the center of a heart-wrenching debate about who should have final authority over children’s medical care: Parents, or the state?

Brain, Eyes, Testes: Off-Limits for Transplants?

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(Medical Xpress) – Since the world’s first successful organ transplant in 1954—a kidney—the discipline has advanced to the point where a wounded soldier could have his penis and scrotum replaced in a groundbreaking operation last month. A Frenchman recently became the first person to receive a second face transplant after the first failed, and another made history by regrowing skin lost over 95 percent of his body, thanks to a graft from his twin brother. Transplants are no longer limited to the vital organs: heart, liver, orlungs. Nowadays, people can get a new hand… or even a uterus. But some organs remain off-limits. For now.

Disgraced Surgeon Is Still Publishing on Stem Cell Therapies

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(Science) – Paolo Macchiarini, an Italian surgeon, has been fired from two institutions and faces the retraction of many of his papers after findings of scientific misconduct and ethical lapses in his research—yet this hasn’t prevented him from publishing again in a peer-reviewed journal. Despite his circumstances, Macchiarini appears as senior author on a paper published last month investigating the viability of artificial esophagi “seeded” with stem cells, work that appears strikingly similar to the plastic trachea transplants that ultimately left most of his patients dead. The journal’s editor says he was unaware of Macchiarini’s history before publishing the study.

Autism Prevalence Jumps 16 Percent, CDC Says

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(Scientific American) -About 1 in 59 children in the United States has autism, according to data released today by the U.S. Centers for Disease Control and Prevention (CDC). Four times as many boys as girls have the condition, according to the report. The data are based on a 2014 survey of 325,483 children across 11 states. The data were collected by the CDC’s Autism and Developmental Disabilities Monitoring Network (ADDM). These numbers show an increase of nearly 16 percent from the previous prevalence of 1 in 68 children. That estimate was based on data collected in 2012 and had a gender ratio of 4.5 to 1.

Benzodiazepines: America’s ‘Other Prescription Drug Problem’

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(NPR) – Lorazepam is a benzodiazepine, a class of medicines known as sedative-hypnotics. They’re used frequently in the U.S. to treat anxiety and insomnia. Other drugs in the same category include Valium and Xanax. The problem with benzos, as they’re also known, is that they’re highly addictive medications, both physically and psychologically. Abruptly stopping them can lead to withdrawal symptoms like the ones Drew hoped to avoid when he kicked alcohol. Moreover, with long-term use, our metabolism adjusts to benzos. We need higher doses to achieve the same effects.

How a Genealogy Website Let to the Alleged Golden State Killer

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(The Atlantic) – Then DNA and the internet appear to have caught up. Reporting from The Sacramento Bee and Mercury News indicates that police arrested Joseph James DeAngelo based on DNA found at crime scenes that partially matched the DNA of a relative on the open-source genealogy website GEDmatch. Previous searches of law-enforcement DNA databases had turned up no matches. This way of finding people by DNA is new to law enforcement, but it is not new to genealogists, who immediately recognized their methods in the police’s vague descriptions. And the revelation has landed like a bomb. It at once demonstrates the power of genetic genealogy research and exposes the many ethical and privacy issues.

Antidepressants, Incontinence Drugs Linked to Dementia in Research

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(UPI) – A new study has linked common antidepressants and incontinence medications to increased risk of dementia — even if the drugs are taken 20 years before diagnosis. Researchers from the United States, Britain and Ireland found anticholinergic drugs, which are often prescribed as antidepressants and for incontinence, may increase risk for dementia, based on analysis of 27 million prescriptions given to 40,770 people over age 65 who were diagnosed with dementia between April 2006 and July 2015.

The Epidemiological Transition Is Now Spreading to the Emerging World

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(The Economist) – A CHILD BORN in China today can expect to live more than three decades longer than his ancestors 50 years ago, a gain in life expectancy that rich countries typically took twice as long to achieve. The increase reflects a shift in the burden of disease that is increasingly apparent in other developing countries, too. But the speed of the transition brings with it huge challenges for both domestic policymakers and the international organisations that distribute aid and run health programmes. Crudely put, what is known as “the epidemiological transition” is a shift from diseases of the bellies and lungs of babies to those of the arteries of adults.

The $3-Million Research Breakdown

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(The Chronicle of Higher Education) – But as Pavuluri’s reputation grew, she put some of these particularly vulnerable children at serious risk in one of her clinical trials. She violated research rules by testing the powerful drug lithium on children younger than 13 although she was told not to, failed to properly alert parents of the study’s risks, and falsified data to cover up the misconduct, records show. In December the university quietly paid a severe penalty for Pavuluri’s misconduct and its own lax oversight, after the National Institute of Mental Health demanded weeks earlier that the public institution — which has struggled with declining state funding — repay all $3.1 million it had received for Pavuluri’s study.

Advancing the Ethics of Paleogenomics

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(Science) – Recent scientific developments have drawn renewed attention to the complex relationships among Indigenous peoples, the scientific community, settler colonial governments, and ancient human remains. Increasingly, DNA testing of ancestral remains uncovered in the America s is being used in disputes over these remains. However, articulations of ethical principles and practices in paleogenomics have not kept pace, even as results of these studies can have negative consequences, undermining or complicating community claims in treaty, repatriation, territorial, or other legal cases. Paleogenomic narratives may also misconstrue or contradict community histories, potentially harming community or individual identities.

Common Antibiotic Significantly Reduces Child Deaths Across Africa

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(CNN) – Giving the antibiotic azithromycin twice a year to young children in sub-Saharan Africa reduced childhood deaths by 13.5%, a new study has shown.  Large-scale distribution of the drug could save millions of lives in a region where one in nine children dies before age 5, according the United States Agency for International Development. The study, published Wednesday in The New England Journal of Medicine, looked at 1,355 randomly assigned communities in three countries spanning the continent: Malawi, Niger and Tanzania.

Alfie Evans: Dad Wants to Build Alder Hey Hospital Relationship

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(BBC) – The father of seriously ill toddler Alfie Evans says he wants to “build his relationship” with the hospital he has been locked in a legal battle with. Tom Evans, who has been fighting to take his 23-month-old son out of Alder Hey Children’s Hospital, said he now wanted to be “left alone” to do so. He praised the “professionalism” and “dignity” of staff at the Liverpool hospital where Alfie is being treated. He also thanked supporters Alfie’s Army but asked them “to go home”.

With €1.5 Billion for Artificial Intelligence Research, Europe Pins Hopes on Ethics

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(Science) – Europe’s plan to catch up to the United States and China in an artificial intelligence (AI) arms race is coming into focus. The European Commission today announced that it would devote €1.5 billion to AI research funding until 2020. It also said it would present ethical guidelines on AI development by the end of the year, suggesting that Europe could become a precautionary counterweight to its global rivals in a field that has raised fears about a lack of fairness and transparency even as it has made great advances.

New Group May Vie to Run Organ Transplant Network That Richmond-Based UNOS Has Held the Contract for 32 Years

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(Richmond Times-Dispatch) – For 32 years, the nonprofit United Network for Organ Sharing has held the federal contract to run the complex U.S. transplant system, a round-the-clock operation that matches donated organs with the sick people who need them. Richmond-based UNOS has grown substantially and become more entrenched as transplantation has expanded. It collected nearly $58 million in revenue in 2015, according to federal tax records. But it has not faced competition from any other bidder since before 2005.

The Ethics of Experimenting with Human Brain Tissue

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(Nature) – If researchers could create brain tissue in the laboratory that might appear to have conscious experiences or subjective phenomenal states, would that tissue deserve any of the protections routinely given to human or animal research subjects?  This question might seem outlandish. Certainly, today’s experimental models are far from having such capabilities. But various models are now being developed to better understand the human brain, including miniaturized, simplified versions of brain tissue grown in a dish from stem cells — brain organoids. And advances keep being made.

Scientists Use Haploid Stem Cells to Create an Atlas of the Human Genome

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(News Medical) – The study, which was conducted by scientists from the Hebrew University of Jerusalem, provides a tool for mapping the role of all human genes. Senior author Nissim Benvenisty and colleagues were able to analyse almost all genes in the human genome by generating more than 180,000 mutations. To generate such a vast amount of mutations, the team combined the CRISPR-Cas9 screening technique with a new form of embryonic cell they had recently isolated.

Life Support Has Been Withdrawn from Alfie Evans, Says Father

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(The Guardian) – Life support has been withdrawn from a 23-month-old boy who has been at the centre of a protracted legal battle, his parents said on Monday evening, shortly after their last-ditch appeal to the high court was turned down. Alfie Evans’ father said his son was still supporting his own life more than an hour after treatment was stopped, but that he was in need of oxygen. Earlier in the evening, Mr Justice Hayden said doctors at Alder Hey children’s hospital in Liverpool could stop providing life support.

Researchers Are Keeping Pig Brains Alive Outside the Body

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(MIT Technology Review) – In a step that could change the definition of death, researchers have restored circulation to the brains of decapitated pigs and kept the reanimated organs alive for as long as 36 hours. The feat offers scientists a new way to study intact brains in the lab in stunning detail. But it also inaugurates a bizarre new possibility in life extension, should human brains ever be kept on life support outside the body.

FDA Launches Criminal Investigation into Unauthorized Herpes Vaccine Research

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(Kaiser Health News) – The FDA rarely prosecutes research violations, usually choosing to administratively sanction or ban researchers or companies from future clinical trials, legal experts said. Even so, the agency is empowered to pursue as a crime the unauthorized development of vaccines and drugs — and sometimes goes after such cases to send a message. In this case, human-subject violations would be deemed especially serious given Halford was not a medical doctor and had injected people with his experimental vaccine without any routine oversight, experts said.

Redesigning Maternal Care: OB-GYNs Are Urged to See New Mothers Sooner and More Often

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(ProPublica) – Doctors would see new mothers sooner and more frequently, and insurers would cover the increased visits, under sweeping new recommendations from the organization that sets standards of care for obstetrician-gynecologists in the U.S. The 11-page “committee opinion” on “Optimizing Postpartum Care,” released today by the American College of Obstetricians and Gynecologists, represents a fundamental reimagining of how providers, insurers and patients can work together to improve care for women after giving birth.

Malaria on Rise in Crisis-Hit Venezuela, WHO Says

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(Reuters) – Malaria is spreading rapidly in crisis-hit Venezuela, with more than an estimated 406,000 cases in 2017, up roughly 69 percent from a year before, the largest increase worldwide, the World Health Organization (WHO) said on Tuesday. Venezuelan migrants fleeing the economic and social crisis are carrying the mosquito-borne disease into Brazil and other parts of Latin America, the U.N. agency said, urging authorities to provide free screening and treatment regardless of their legal status to avoid further spread.

Do No Harm: A Code to Guide Use of Humanitarian Dronees

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(SciDevNet) – Engaging the community is one guiding principle, along with 14 others, that form the Humanitarian UAV Code of Conduct — a set of guidelines established in 2014 that “informs the safe, responsible, and effective use” of drones in humanitarian settings. The past five years have seen humanitarian organisations increasingly embrace UAV usage in their work. Because they are small, lightweight and can be remotely operated, drones have many useful applications.

Thalassaemia Gene Therapy Trial Shows ‘Encouraging’ Results

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(BBC) – Scientists say they are “excited” by the results of a gene therapy trial for the inherited blood disorder beta-thalassaemia, which reduced the need for blood transfusions. In 22 patients, blood stem cells were extracted, treated and re-introduced to stimulate red blood cell production. Fifteen patients were able to stop transfusions altogether while others needed fewer of them.

Decoding Your Baby’s DNA: It Can Be Done. But Should It Be?

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(Los Angeles Times) – Maverick benefited from a groundbreaking $25-million federal effort studying the value of sequencing babies’ entire DNA, known as their genome. Doctors in San Diego have shown that genome sequencing can help very sick infants like Maverick. But the potential to uncover diseases and risks hidden in DNA has sparked a controversial debate: What if all babies had their genomes sequenced? Other researchers in the same federal project, called Newborn Sequencing in Genomic Medicine and Public Health, have been investigating this broader notion, as well as the sticky ethical questions that come with it.

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