News from Bioethics.com

Gene Editing Is Revolutionizing Medicine But Causing a Government Ethics Nightmare

1 month 2 weeks

(Newsweek) – Late last week, reports emerged that scientists in Oregon had used gene-editing technology, known as CRISPR-Cas9, to edit a human embryo. While research like this is already occurring in China and Great Britain, this is the first time scientists in the U.S. have edited an embryo. The move raises the question of whether regulations are strict enough in the U.S. Both Congress and the National Institutes of Health have explicitly said they would not fund research that uses gene-editing to alter embryos. But laws and guidelines are not keeping pace with this fast-moving and controversial work.

Better Drugs, Faster: The Potential of AI-Powered Humans

1 month 3 weeks

(BBC) – Scientists working in tandem with artificial intelligence (AI) could slash the time it takes to develop new drugs – and, crucially, the cost – say tech companies. Developing pharmaceutical drugs is a very expensive and time-consuming business. And as AstraZeneca found out last week, disappointing drug trials can knock millions off your stock market value in a flash. So the faster we can identify promising molecules that could be turned into viable drugs, the better. This is why pharmaceutical companies, such as GlaxoSmithKline (GSK), Merck, Sanofi and Johnson & Johnson, are now turning to artificial intelligence (AI) to help them.

Will Healthcare Inequality Cause Genetic Diseases to Disproportionately Impact the Poor?

1 month 3 weeks

(Gizmodo) – Prenatal testing is a miraculous technology that has drastically altered the course of a woman’s pregnancy since it was first developed in the 1960s. The more recent advent of noninvasive prenatal tests made the procedure even less risky and more widely available. Today, most women are offered screenings for diseases like Down syndrome that result from an abnormal presence of chromosomes, and targeted testing of the parents can hunt for inherited disease traits like Huntington’s at risk of being passed on to a child, as well. But there is a dark side to this miracle of modern medicine, which is that choice is exclusive to those who can afford and access it.

Scientists CRISPR the First Human Embryos in the US (Maybe)

1 month 3 weeks

(Wired) – Big if true, as the saying goes. Mitalipov’s group never intended to implant the eggs into a womb, but the embryos were “clinical quality” and probably could have survived implantation. That makes this only the second time scientists anywhere have edited viable embryos—if that’s indeed what Mitalipov did. Maybe this news is important enough to make it to the popular press without a peer-reviewed, published paper, but without one it’s impossible to be definitive on what Mitalipov actually did versus what he’s claiming to have done.

Judge Pulls Controversial Order of Reduced Sentences for Inmates Who Undergo Birth Control Procedures

1 month 3 weeks

(CBS News) – A judge in Tennessee has rescinded a controversial order that offered reduced sentences for inmates who underwent a birth control procedure and completed an educational course about addiction in newborns. Judge Sam Benningfield in White County, Tennessee, initiated the program to combat the rise in infants born addicted to opioids, he told “CBS This Morning” last week. Benningfield said 80 to 90 percent of cases he encounters involve drug or alcohol abuse. The number of babies born with symptoms of withdrawal has increased 10-fold since the early 2000s.

Charlie Gard Parents Announce Death of ‘Beautiful Boy’

1 month 3 weeks

(BBC) – Charlie Gard, the baby at the centre of a legal row over his treatment, has died, a family spokesman has confirmed. The 11-month-old was moved to a hospice following a High Court ruling. He suffered from an extremely rare genetic condition causing progressive brain damage and muscle weakness. His parents, Connie Yates and Chris Gard, fought a lengthy legal battle with Great Ormond Street Hospital to allow him to be taken to the US for legal treatment.

For Kids with Cancer, Focusing on Quality of Life

1 month 3 weeks

(New York Times) – Many people associate palliative care with hospice care, but medical professionals are offering it to children and adolescents living with cancer as well as to those dying from it. In the process, they are redefining both palliative care and cancer care, focusing on helping each patient achieve the best quality of life possible. About 15,780 American babies, children and adolescents receive a cancer diagnosis each year; approximately 1,960 die. Each one raises shocking questions about the suffering of the innocent.

First Human Embryos Edited in U.S.

1 month 3 weeks

(MIT Technology Review) – The first known attempt at creating genetically modified human embryos in the United States has been carried out by a team of researchers in Portland, Oregon, MIT Technology Review has learned. The effort, led by Shoukhrat Mitalipov of Oregon Health and Science University, involved changing the DNA of a large number of one-cell embryos with the gene-editing technique CRISPR, according to people familiar with the scientific results.

Surrogacy Exit Rules Released, with Parents Required to Provide Yearly Updates

1 month 3 weeks

(The Phnom Penh Post) – Parents of children born to surrogate mothers in Cambodia will be required to provide the government with yearly updates of their child’s mental and physical development, according to new guidelines officially disseminated to embassies for the first time yesterday. A total of 19 embassies met with Interior Minister Sar Kheng and other officials to receive a four-page list of guidelines, part of an “exit strategy” for babies born in a period of legal limbo.

UN Says 80 Percent of Yemeni Children Need Humanitarian Aid

1 month 3 weeks

(UPI) – Three U.N agencies say nearly 80 percent of Yemeni children need immediate humanitarian assistance amid the collapse of the country’s health system in the face of the two-year-long civil war. The heads of the World Health Organization, UNICEF, and World Food Program said in a joint statement on Wednesday that 2 million Yemeni children are malnourished, making them vulnerable to cholera.

Three Ways the Charlie Gard Case Could Affect Future End-of-Life Cases Globally

1 month 3 weeks

(The Conversation) -The tragic case of Charlie Gard, the British infant whose parents have just ended their legal fight to send him to the US for experimental treatment, has captured global attention. The case is significant for a number of reasons, both in the huge amount of publicity it has attracted, its progression through several courts, and the number of influential commentators who became involved. Not only does the case highlight the challenges for parents, doctors and judges in making end-of-life decisions about critically impaired infants, it is unique in another respect. It highlights the changing role of the wider public in shaping how decisions about medical treatment are made.

Zika Testing Recommendations Changed for Pregnant Women

1 month 3 weeks

(STAT News) – There’s never been anything easy about the Zika virus outbreak, and a new complication is now coming to light. Testing for Zika infection is becoming more difficult, making it harder for doctors to advise pregnant women about the chances their child might have a Zika-related birth defect, the Centers for Disease Control and Prevention revealed in a health advisory issued Friday. The CDC is now suggesting that women thinking of getting pregnant, and who may be exposed to the Zika virus through travel or because of where they live, should consider having their blood tested for Zika antibodies before they get pregnant. Having a baseline reading would help to interpret Zika tests done during a later pregnancy.

Pressure Mounts to Curtail Surgery on Intersex Children

1 month 4 weeks

(STAT News) – Children whose sexual characteristics don’t neatly align with the norm have for decades faced surgery to rearrange their anatomy to resemble that of more typical boys and girls — long before they were old enough to have a say in the decision. But now the practice is under assault, as never before. The American Medical Association is considering a proposal discouraging it. Three former U.S. surgeons general say it’s unjustified. And on Tuesday, Human Rights Watch and InterACT a group advocating for intersex youth — are releasing a detailed report assailing the practice and urging Congress to ban it.

‘Unprecedented’ Outbreak of Dengue Fever Plagues Sri Lanka

1 month 4 weeks

(CNN) – Sri Lanka is facing an “unprecedented” outbreak of deadly dengue fever, with 296 deaths recorded and over 100,000 cases reported in 2017 alone, according to the Red Cross. The international aid organization, formally known as the International Federation of Red Cross and Red Crescent Societies (IFRC), is increasing its emergency assistance across Sri Lanka to help contain the spread of the mosquito-borne disease, a press release says.

Jahi McMath’s Family Wins Backing for Argument that She’s Alive

1 month 4 weeks

(San Francisco Chronicle) – It’s been more than three years since 13-year-old Jahi McMath was declared dead after something went terribly wrong following throat surgery at Children’s Hospital Oakland. Her family has never accepted the declaration and has kept her on life support ever since — and in a new twist, a prominent neurologist says recent videos of the girl show she is alive, with a partially functioning brain.

Charlie Gard Parents End Legal Fight for ‘Beautiful’ Baby

1 month 4 weeks

(BBC) – The parents of terminally ill baby Charlie Gard have ended their legal challenge to take him to the US for experimental treatment. A lawyer representing Chris Gard and Connie Yates told the High Court “time had run out” for the baby. Mr Gard said it meant his “sweet, gorgeous, innocent little boy” will not reach his first birthday on 4 August. “To let our beautiful little Charlie go” is “the hardest thing we’ll ever have to do”, his mother said. Charlie’s parents said they made the decision because a US doctor had told them it was now too late to give Charlie nucleoside therapy.

Judge Promises Reduced Jail Time if Tennessee Inmates Get Vasectomies

1 month 4 weeks

(NPR) – As general sessions judge for White County, Tenn., Sam Benningfield says the vast majority of cases he hears are drug-related offenses. The opioid epidemic has hit the state especially hard — resulting in more than 1,400 drug overdose deaths there in 2015 alone, according to the CDC — and he felt that an unusual solution would be necessary to drive home the dangers of illegal drugs for would-be parents. So in May, Benningfield issued a standing order: If inmates at the White County Jail undergo a form of long-term contraception for free — a vasectomy for men or a Nexplanon implant for women — they can shave 30 days off their sentences.

The Curse of a ‘None of the Above’ Disease

1 month 4 weeks

(Undark) – “We need to appreciate just how muddled the concept of medically unexplained symptoms is,” said James Coyne, a professor of health psychology at University Medical Center, Groningen, in the Netherlands. It’s meant to serve as a placeholder for patients who complain of vague health issues that can’t be verified through routine testing or whose cause remains uncertain. But often, Coyne said, there’s a degree of mistrust involved, as many health care professionals prefer psychosomatic explanations for these nebulous ailments.

Companies Rush to Develop ‘Utterly Transformative’ Gene Therapies

1 month 4 weeks

(New York Times) – The approval of gene therapy for leukemia, expected in the next few months, will open the door to a radically new class of cancer treatments. Companies and universities are racing to develop these new therapies, which re-engineer and turbocharge millions of a patient’s own immune cells, turning them into cancer killers that researchers call a “living drug.” One of the big goals now is to get them to work for many other cancers, including those of the breast, prostate, ovary, lung and pancreas.

When Life Is a Fate Worse than Death

2 months 2 days

(The Guardian) – Karen Ann Quinlan lived two lives. Her first life was that of a regular middle-class girl in Scranton, Pennsylvania: she swam, she skied, she dated, she attended mass with her family, she went to high school, and she worked at a local ceramics company. However, this life changed after she was laid off from her job. Soon after, she found herself moving from job to job, and increasingly found comfort in sedative pills and alcohol.

Adderall Might Improve Your Test Scores–But So Could a Placebo

2 months 3 days

(New Scientist) – Students who take Adderall to improve their test scores may get a slight benefit, but it’s mainly a placebo effect. The drug Adderall is a combination of the stimulants amphetamine and dextroamphetamine, and is used to treat attention deficit hyperactivity disorder (ADHD). But it’s growing in popularity as a study drug in the US, where around a third of college students are thought to try using prescription stimulants for non-medical reasons. But does it work? Rachel Fargason, a psychiatrist at the University of Alabama, Birmingham, says the idea of stimulants as cognitive enhancers didn’t tally with her experience of patients who were diagnosed incorrectly.

HIV Drug Resistance Could Undermine Progress in AIDS Battle: WHO

2 months 3 days

(Reuters) – Rising levels of resistance to HIV drugs could undermine promising progress against the global AIDS epidemic if effective action is not taken early, the World Health Organization (WHO) said on Thursday.  Already in six out of 11 countries surveyed in Africa, Asia and Latin America for a WHO-led report, researchers found that more than 10 percent of HIV patients starting antiretroviral drugs had a strain resistant to the most widely-used medicines.

First Double Hand Transplant Involving a Child Declared a Success

2 months 3 days

(The Guardian) – After almost 11 hours of surgery involving four teams of doctors, Zion Harvey had earned his place in medical history. The eight-year-old had become the first child in the world to receive two new hands in a procedure that seemed to herald a revolution in transplant medicine. Two years on, the sports-mad boy from Baltimore, Maryland, is enjoying the freedom and independence his new hands have given him. In the first medical journal report of Zion’s pioneering treatment, published on Wednesday, the experts involved declare the operation a success and say other children could benefit from the knowledge gained.

AI Could Revolutionize War as Much as Nukes

2 months 3 days

(Wired) – In 1899, the world’s most powerful nations signed a treaty at The Hague that banned military use of aircraft, fearing the emerging technology’s destructive power. Five years later the moratorium was allowed to expire, and before long aircraft were helping to enable the slaughter of World War I. “Some technologies are so powerful as to be irresistible,” says Greg Allen, a fellow at the Center for New American Security, a non-partisan Washington DC think tank. “Militaries around the world have essentially come to the same conclusion with respect to artificial intelligence.”

At Clinicatrials.gov Untested Stem Cell Clinics Advertise for Free!

2 months 4 days

(Wired) – Advocates of the therapy say that’s just the cost of doing cutting-edge medicine. Except, any proof they have that it is effective comes from data collected on patients who pay thousands of dollars for the treatment. Usually people pay money for medicine after there’s proof it works. In the last few years, some of these stem cell clinicians have begun posting large-scale studies on a government-run website called ClinicalTrials.gov, even though they’re often not up to medical research standards or even in compliance with federal regulations. This allows them to masquerade their pay-to-participate studies as legit science.

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