News from Bioethics.com

Sickle-Cell Patients See Hope in CRISPR

4 weeks 18 hours

(MIT Technology Review) – The idea is that CRISPR could correct the genetic mutation responsible for sickle-cell so that patients’ bodies could make normal red blood cells, alleviating the pain and other severe symptoms associated with the disease. Researchers have already tested the gene-editing tool on human sickle cells in the lab and are now working on getting the technique to clinical trials. Early results hint that sickle-cell could be among the first diseases that CRISPR essentially cures.

‘Breakthrough’ Leukemia Drug Also Portends ‘Quantum Leap’ in Cost

4 weeks 1 day

(Kaiser Health News) – Switzerland-based Novartis hasn’t announced a price for the medicine, but British health authorities have said a price of $649,000 for a one-time treatment would be justified given the significant benefits. The cancer therapy was unanimously approved by a Food and Drug Administration advisory committee in July, and its approval seems all but certain. The treatment, CTL019, belongs to a new class of medications called CAR T-cell therapies, which involve harvesting patients’ immune cells and genetically altering them to kill cancer. It’s been tested in patients whose leukemia has relapsed in spite of the best chemotherapy or a bone-marrow transplant.

Artificial Wombs Are Coming. They Could Completely Change the Debate over Abortion.

4 weeks 1 day

(Vox) – The Supreme Court’s decision in Planned Parenthood v. Casey treats “viability” — when a fetus can survive outside the womb — as the important constitutional dividing line for individual states’ ability to restrict abortion. US states have much more power to restrict abortion after viability than before (although even post-viability there are important constitutional carve-outs, including for abortions to protect the health of the mother). If — and it is a big “if” — artificial wombs were to become available for human fetuses, we face the following question: Could anti-abortion laws require pregnant women whose fetuses are not yet viable to transfer the fetus to a nurturing site outside the body, possibly by way of minimally invasive surgery? The right to abortion would thereby be restricted.

With Court’s OK, Chile Relaxes One of the World’s Strictest Abortion Bans

4 weeks 1 day

(Scientific American) – A Chilean court dealt abortion rights activists a landmark victory Monday, approving a controversial bill that rolled back parts of one of the world’s strictest abortion bans. The bill passed by lawmakers earlier this month — after a years-long campaign by President Michelle Bachelet — added three exceptions to a law that for nearly three decades outlawed abortion in all cases. By a narrow margin, lawmakers rendered abortion legal when the pregnancy results from rape, when the pregnancy endangers the mother’s life and when the fetus is unviable.

Cryptographers and Geneticists Unite to Analyze Genomes They Can’t See

4 weeks 1 day

(Scientific American) – A cryptographer and a geneticist walk into a seminar room. An hour later, after a talk by the cryptographer, the geneticist approaches him with a napkin covered in scrawls. The cryptographer furrows his brow, then nods. Nearly two years later, they reveal the product of their combined prowess: an algorithm that finds harmful mutations without actually seeing anyone’s genes.

Dying at Home in an Opioid Crisis: Hospices Grapple with Stolen Meds

1 month 17 hours

(Kaiser Health News) – Hospices have largely been exempt from the national crackdown on opioid prescriptions because dying people may need high doses of opioids. But as the nation’s opioid epidemic continues, some experts say hospices aren’t doing enough to identify families and staff who might be stealing pills. And now, amid urgent cries for action over rising overdose deaths, several states have passed laws giving hospice staff the power to destroy leftover pills after patients die.

There’s an Unforeseen Benefit to California’s Physician-Assisted Death Law

1 month 17 hours

(Los Angeles Times) – Some doctors in California felt uncomfortable last year when a new law began allowing terminally ill patients to request lethal medicines, saying their careers had been dedicated to saving lives, not ending them. Many healthcare systems designed protocols for screening people who say they’re interested in physician-assisted death, including some that were meant to dissuade patients from taking up the option. But physicians across the state say the conversations that health workers are having with patients are leading to patients’ fears and needs around dying being addressed better than ever before. They say the law has improved medical care for sick patients, even those who don’t take advantage of it.

The Disturbing, Eugenics-Like Reality Unfolding in Iceland

1 month 1 day

(Quartz) – Here’s the interesting thing: Down syndrome, or Trisomy 21 as it is also called, is actually one of the less severe chromosomal conditions. Unlike many other trisomies (genetic conditions in which a person has three copies of a chromosome instead of the standard two), it’s compatible with life.

Is a Dubious ‘Brain Health Quiz’ Stoking Alzheimer’s Anxiety to Lure Patients?

1 month 1 day

(Undark Magazine) – The American Medical Association’s Code of Ethics prohibits advertising that is “misleading” or creates “unjustified medical expectations,” and it requires claims to be “factually supportable.” The Brain Health Quiz, as I discovered, is almost guaranteed to generate a 100 percent hit rate, even for people without any of the objective risk factors. It purports to be making individualized assessments through meaningful screening, but it ends up pushing consultations for nearly everyone. After all, why take the quiz if you aren’t already concerned?

Genetic Tweaks to Tuberculosis Could Speed Up Discovery of a New Vaccine

1 month 1 day

(STAT News) – The only existing tuberculosis vaccine — known as Bacille Calmette-Guérin (BCG) — contains a weakened bacterium that is a different cousin of Mycobacterium tuberculosis. And while the vaccine is 60 to 80 percent effective in children, it works poorly in adults. Partly for that reason, while BCG is widely administered in many parts of the world, it’s not used in the United States. Multiple other vaccine candidates are currently moving through clinical trials, with some encouraging early results. A better vaccine could save lives on a stunning scale. Annually, tuberculosis kills more people than HIV or malaria, though the number of deaths has fallen over time.

Exclusive: Inside the Lab Where Scientists Are Editing DNA in Human Embryos

1 month 4 days

(NPR) – Human eggs are the key starting point for the groundbreaking experiments underway in this lab. It’s run by Shoukhrat Mitalipov, a biologist who’s been on the cutting edge of embryonic genetic research for decades. Mitalipov and his international team electrified the world this summer when the group announced it had successfully — and seemingly safely — figured out how to efficiently edit the DNA in human embryos. For the first time, they said, they had corrected a mutation that causes a potentially fatal heart condition. The hope is this landmark step could someday help prevent thousands of genetic diseases that have plagued families for generations.

Accessing Drugs for Medical Aid-in-Dying

1 month 4 days

(The Scientist) – So why the rise? Just one month prior to Seconal’s price hike, California had proposed legislation that would make it the fifth state to allow medical-aid-in-dying, in which terminally ill patients given less than six months to live could choose to end their own lives with a physician’s prescription for a lethal quantity of a drug—Seconal being the drug of choice. Valeant denied ulterior motives for the decision. But some health-care practitioners called the move exploitative, whether or not the timing was deliberate. With Seconal’s climbing cost, the standard lethal-dose protocol—emptying 100 capsules into a beverage—has a price tag of $3,000 or more. “‘Shocked’ is one word you could use,” says David Grube, a family doctor in Oregon and national medical director of the nonprofit group Compassion and Choices, which advocates for better end-of-life medical care. “I had other feelings as well—all of them negative. . . . It’s pharmaceutical-company greed.”

Elderly Couple Got ‘Deepest Wish’–to Die Together–in Rare Euthanasia Case

1 month 4 days

(Washington Post) – Nic and Trees Elderhorst knew exactly how they wanted to die. They were both 91 years old and in declining health. Nic Elderhorst suffered a stroke in 2012 and more recently, his wife, Trees Elderhorst, was diagnosed with dementia, according to the Dutch newspaper, De Gelderlander. Neither wanted to live without the other, or leave this world alone. So the two, who lived in Didam, a town in the eastern part of the Netherlands, and had been together 65 years, shared a last word, and a kiss, then died last month hand-in-hand — in a double euthanasia allowed under Dutch law, according to De Gelderlander.

Chess Study Revives Debate over Cognitive-Enhancing Drugs

1 month 5 days

(JAMA) – While media attention has since waned, the underground use of CEs seemingly has not. A 2013 survey found that 19.9% of the 1105 German surgeons who responded admitted to having taken a prescription or illicit drug to enhance cognition at least once. Another study found that 61.8% of undergraduates at the University of Maryland had been offered prescription stimulants for nonmedical purposes, most of them by friends with prescriptions, and 31% had used them.

Oregon Governor Expands Abortion, Reproductive Coverage

1 month 5 days

(ABC News) – Oregon Gov. Kate Brown on Tuesday signed into law a bill expanding coverage on abortions and other reproductive services to thousands of Oregonians, regardless of income, citizenship status or gender identity. Proponents called it America’s most progressive reproductive health policy. The Pro-Choice Coalition of Oregon said it is the first legislation in the United States to comprehensively address systemic barriers to accessing reproductive health care. Chris Pair, Brown’s press secretary, confirmed Brown signed the bill Tuesday.

At Last, a Big, Successful Trial of Probiotics

1 month 6 days

(The Atlantic) – Since 2008, Panigrahi’s team has been running a large clinical trial in rural India, where they gave a probiotic of their own devising to thousands of randomly selected newborn babies. Their product contained a strain of Lactobacillus plantarum, chosen for its ability to attach to gut cells. The team also added a sugar, chosen to nourish the microbe and give it a foothold when it enters a baby’s gut. Together, this combination is called a synbiotic. And it was strikingly effective.

White Nationalists Are Flocking to Genetic Ancestry Tests. Some Don’t Like What They Find

1 month 6 days

(STAT News) – But instead of rejecting members who get contrary results, Donovan said, the conversations are “overwhelmingly” focused on helping the person to rethink the validity of the genetic test. And some of those critiques — while emerging from deep-seated racism — are close to scientists’ own qualms about commercial genetic ancestry testing. Panofsky and Donovan presented their findings at a sociology conference in Montreal on Monday. The timing of the talk — some 48 hours after the violent white nationalist rally in Charlottesville, Va. — was coincidental. But the analysis provides a useful, if frightening, window into how these extremist groups think about their genes.

More Than 500,000 Infected with Cholera in Yemen

1 month 6 days

(New York Times) – More than 500,000 Yemenis have been infected with cholera this year, and nearly 2,000 have died, the World Health Organization said Monday. Cholera is endemic in Yemen, which is on the tip of the Arabian Peninsula and across the Gulf of Aden from Somalia. But the disease, caused by a bacterium in contaminated water, has spread rapidly since April. Civil war and bombing by neighboring Saudi Arabia have crippled much of the country’s water-distribution system, destroyed hospitals and forced vast numbers of people to flee their homes.

China’s Embrace of Embryo Selection Raises Thorny Questions

1 month 6 days

(Nature) – Early experiments are beginning to show how genome-editing technologies such as CRISPR might one day fix disease-causing mutations before embryos are implanted. But refining the techniques and getting regulatory approval will take years. PGD has already helped thousands of couples. And whereas the expansion of PGD around the world has generally been slow, in China, it is starting to explode. The conditions there are ripe: genetic diseases carry heavy stigma, people with disabilities get very little support and religious and ethical push-back against PGD is almost non-existent. China has also lifted some restrictions on family size and seen a subsequent rise in fertility treatments among older couples.

A Cancer Conundrum: Too Many Drug Trials, Too Few Patients

1 month 1 week

(New York Times) – With the arrival of two revolutionary treatment strategies, immunotherapy and personalized medicine, cancer researchers have found new hope — and a problem that is perhaps unprecedented in medical research. There are too many experimental cancer drugs in too many clinical trials, and not enough patients to test them on. The logjam is caused partly by companies hoping to rush profitable new cancer drugs to market, and partly by the nature of these therapies, which can be spectacularly effective but only in select patients.

“What Kind of Society Do You Want to Live in?”: Inside the Country Where Down Syndrome Is Disappearing

1 month 1 week

(CBS News) – With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland. Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.

Plants ‘Hijacked’ to Make Polio Vaccine

1 month 1 week

(BBC) – Plants have been “hijacked” to make polio vaccine in a breakthrough with the potential to transform vaccine manufacture, say scientists. The team at the John Innes Centre, in Norfolk, says the process is cheap, easy and quick. As well as helping eliminate polio, the scientists believe their approach could help the world react to unexpected threats such as Zika virus or Ebola. Experts said the achievement was both impressive and important. The vaccine is an “authentic mimic” of poliovirus called a virus-like particle.

The Ethics Issue Blocking Organ Transplant Research

1 month 1 week

(The Atlantic) – There’s nothing to do for the dead patient at this point. But his or her organs can be saved, and because most transplanted organs in the United States come from brain-dead donors, these minutes are crucial. For this reason, researchers have wanted to study the use of drugs or procedures in brain-dead donors, halting organ damage that happens in the minutes after death. But this kind of research is almost impossible to do in the United States. The ethics of so-called donor-intervention research are incredibly fraught. How do you get informed consent and from whom? The dead donor?

India Restores Hospital Oxygen Supply as Anger Mounts over Child Deaths

1 month 1 week

(Reuters) – Indian health authorities on Monday delivered oxygen to a public hospital where 63 people have died of encephalitis in recent days, nearly half of them children, as it ran out of medical supplies because of unpaid bills, triggering public outrage. The deaths of the children have again exposed India’s underfunded and poorly managed public healthcare despite Prime Minister Narendra Modi government’s vows to revamp the system.

From Alaska to Florida, States Respond to Opioid Crisis with Emergency Declarations

1 month 1 week

(NPR) – Public health officials and others concerned about the nation’s opioid crisis are hailing President Trump’s decision to declare it a national emergency. A Presidential commission on opioids said in its interim report that an emergency declaration would allow the administration to take immediate action and send a message to Congress that more funding is needed. But while the Trump administration prepares the presidential order, governors in six states have already declared emergencies to deal with opioids. They range from Alaska and Arizona in the West to Florida, Virginia, Maryland and Massachusetts in the East.

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