News from Bioethics.com

For Syrian Children, Hearing Loss Is an Invisible Wound–But One Charity Is Trying to Help

2 months 1 week

(STAT News) – Six-year-old Aya al-Souqi, a Syrian refugee, held the camera phone up to her gaze and listened to hear her mother. “I hear you!” she exclaimed. It was only the second time she’d spoken to her mother in Beeskow, Germany since getting fitted with a hearing aid by a Chicago-based charity to treat an invisible wound of the Syrian war. Aya, timid and diminutive, was a little over a year old in 2012 when a rocket struck her family’s house in the Eastern Ghouta countryside, outside the Syrian capital, Damascus.

Downs Syndrome Teenager Addresses the UN in Geneva

2 months 1 week

(BBC) – Mum Denise told Newsbeat about how proud she was to see her daughter get up in a room full of important UN policy makers, but it’s scary some people still choose to abort because they are having a Down’s baby. She said: “I feel rather mixed emotions right now; on the one hand I’m incredibly proud of Kathleen’s achievement. “But on the other hand I feel like I have to show off her every achievement just to show and remind society that her life is worth living.”

Doctors Harvesting Organs from Canadian Patients Who Underwent Medically Assisted Death

2 months 1 week

(National Post) – Doctors have already harvested organs from dozens of Canadians who underwent medically assisted death, a practice supporters say expands the pool of desperately needed organs, but ethicists worry could make it harder for euthanasia patients to voice a last-minute change of heart. In Ontario, 26 people who died by lethal injection have donated tissue or organs since the federal law decriminalizing medical assistance in dying, or MAID, came into effect last June, according to information obtained by the Post. A total of 338 have died by medical assistance in the province.

Harvard Scientists Call for Better Rules to Guide Research on ‘Embryoids’

2 months 1 week

(NPR) – How far should scientists be allowed to go in creating things that resemble primitive human brains, hearts, and even human embryos? That’s the question being asked by a group of Harvard scientists who are doing exactly that in their labs. They’re using stem cells, genetics and other new biological engineering techniques to create tissues, primitive organs and other living structures that mimic parts of the human body. Their concern is that they and others doing this type of “synthetic biology” research might be treading into disturbing territory.

Costa Rica Welcomes First IVF Baby after 16-Year-Ban

2 months 1 week

(The Tico Times) – A baby girl named María José is the first baby born as the result of an In Vitro Fertilization (IVF) procedure after a 16-year ban on the technique in Costa Rica. Channel 7 Telenoticias reported that the baby was born just before 1 p.m. on Wednesday at Hospital Cima, west of San José. Her parents are a couple from the province of Heredia who had the procedure done last June.

San People of Africa Draft Code of Ethics for Researchers

2 months 1 week

(Science) – The San people of Southern Africa are among the closest living relatives of our hunting and gathering ancestors. Scientists have flocked to study their age-old rituals and ancient genetic fingerprints. Now, after more than a century of being scrutinized by science, the San are demanding something back. Earlier this month the group unveiled a code of ethics for researchers wishing to study their culture, genes, or heritage.

Artificial Intelligence Is Learning to Predict and Prevent Suicide

2 months 1 week

(Wired) – For years, Facebook has been investing in artificial intelligence fields like machine learning and deep neural nets to build its core business—selling you things better than anyone else in the world. But earlier this month, the company began turning some of those AI tools to a more noble goal: stopping people from taking their own lives. Admittedly, this isn’t entirely altruistic. Having people broadcast their suicides from Facebook Live isn’t good for the brand.

Early Adoption Not an Option for Research Rule Changes

2 months 1 week

(Bloomberg) – Changes to human research subject protection regulations known as the Common Rule shouldn’t be followed before they officially take effect next January, an HHS attorney said. “You cannot start applying it right now. The current rule applies until the revised rule becomes effective,” Laura M. Odwazny told a room full of health lawyers March 9 in Baltimore. Odwazny is the attorney who advises the Health and Human Services Office for Human Research Protections, which administers the Common Rule ( 45 C.F.R. 46).

The Key to Curing Disease Could Lie in Iceland’s Genes

2 months 1 week

(CNN) – The freezer sits behind a heavy door in the basement of an unassuming building on the campus of the University of Iceland. It feels much colder than it looks; inside, the temperature is minus-15 degrees Fahrenheit, but the air is so dry, you can’t see your breath. Stored in that freezer are vials and vials of blood, as far as the eye can see, 500,000 samples from 150,000 people. Almost half of Iceland’s population is represented in that freezer, and their blood could help scientists crack codes for a range of issues, from treating disease to understanding human intelligence. The key lies in their DNA.

3 Women Blinded by Unproven Stem Cell Treatments

2 months 1 week

(NPR) – Scientists have long hoped that stem cells might have the power to treat diseases. But it’s always been clear that they could be dangerous too, especially if they’re not used carefully. Now a pair of papers published Wednesday in the New England Journal of Medicine is underscoring both the promise and the peril of using stem cells for therapy. In one report, researchers document the cases of three elderly women who were blinded after getting stem cells derived from fat tissue at a for-profit clinic in Florida. The treatment was marketed as a treatment for macular degeneration, the most common cause of blindness among the elderly. Each woman got cells injected into both eyes.

Lab-Grown Mini-Organs Help Model Disease, Test New Drugs

2 months 1 week

(Science) – To the naked eye, the little globs of cells are undifferentiated masses, smaller than sesame seeds. Put them under a microscope, though, and these lab-grown miniature organs show striking complexity: the tiny tubules of a kidney, the delicate folds of cerebral cortex, or a mucousy layer of intestinal lining. Now—after nearly a decade of figuring out how to make cells grow, organize, and specialize into 3D structures similar to human tissues, scientists have created a veritable zoo of “organoids,” including livers, pancreases, stomachs, hearts, kidneys, and even mammary and salivary glands.

Should Hospitals–and Doctors–Apologize for Medical Mistakes?

2 months 1 week

(The Washington Post) – But spurred by concerns about the “deny and defend” model — including its cost, lack of transparency and the perpetuation of errors — programs to circumvent litigation by offering prompt disclosure, apology and compensation for mistakes as an alternative to malpractice suits are becoming more popular. Johns Hopkins researchers recently estimated that medical mistakes kill 251,000 Americans annually, which would make them the ­third-leading cause of death. Traditionally, the only way for patients to find out what went wrong has been to sue.

For the First Time, U.K. Allows Clinic to Proceed with “3-Parent” Baby Procedure

2 months 1 week

(Scientific American) – Britain’s fertility regulator on Thursday granted doctors the first UK license to create babies using a three-parent IVF technique designed to prevent inherited genetic diseases. The license, granted to a team of doctors in Newcastle, northern England, means the first child created in Britain using the mitochondrial pronuclear transfer technique could be born before the end of this year.

U.N. Drugs Body Places Fentanyl Ingredients on Control List

2 months 1 week

(Reuters) – A U.N. body on Thursday added two chemicals used to make the drug fentanyl, which killed music star Prince, to an international list of controlled substances, which the United States said would help fight a wave of deaths by overdose. Fentanyl is a man-made opioid 100 times more powerful than morphine. Roughly 20,000 U.S. overdose deaths in 2015 involved heroin or synthetic opioids such as fentanyl, according to the U.S. Centers for Disease Control and Prevention.

Waiting to Reprogram Your Cells? Don’t Hold Your Breath

2 months 1 week

(Scientific American) – They can also give rise, however, to potentially dangerous mutations, possibly including ones that lead to cancerous tumors. Thus, iPS cells are a double-edged sword—their great promise is tempered by risk. Another problem is the high cost of treating a patient with his or her own newly reprogrammed cells. But now Japanese researchers are trying a different approach.

CRISPR May Speed Pig-to-Human Transplants

2 months 1 week

(MIT Technology Review) – “This pig might save your bacon.” So say the company T-shirts printed up by biotechnology startup eGenesis, which today raised $38 million to fund a new effort to edit the DNA of pigs so they can serve as the source of transplant organs. The plan, says the company, is to use the gene-editing method known as CRISPR to introduce extensive DNA modifications into pigs as a way of humanizing their organs so they won’t get rejected if transferred into a person. (The back of the T-shirt reads: “PS, I like my bacon extra CRISPR’ed.”)

As Drug Costs Soar, People Delay or Skip Cancer Treatments

2 months 1 week

(NPR) – With new cancer drugs commonly priced at $100,000 a year or more, Krahne’s story is becoming increasingly common. Hundreds of thousands of cancer patients are delaying care, cutting their pills in half or skipping drug treatment entirely, a Kaiser Health News examination shows. One-quarter of all cancer patients chose not to fill a prescription due to cost, according to a 2013 study in The Oncologist. And about 20 percent filled only part of a prescription or took less than the prescribed amount.

A Robot Ear Surgeon Drills into the Future of Medicine

2 months 1 week

(Wired) – Technically it ain’t brain surgery, but let’s just say you wouldn’t want to do a cochlear implant while sleepy or distracted. So it’s a good thing this surgery robot can’t be either of those things. It drills into the bone behind the ear, watching with two shining eyes. The bit passes just half a millimeter from the facial nerve, and another half a millimeter from the taste nerve, before entering the spiraling cochlea of the inner ear. Here a human deposits an electrode.

Mosaic Problem Stands in the Way of Gene Editing Embryos

2 months 1 week

(New Scientist) – The team managed to correct mutations in three out of six embryos, suggesting CRISPR repair is more efficient in viable embryos. “It does look more promising than previous papers,” says Fredrik Lanner of the Karolinska Institute in Sweden. However, the study highlights a further roadblock to using gene editing to create healthy babies. Two of the edited embryos were mosaics – mixtures of edited and unedited cells. The team injected the CRISPR machinery when the embryos were just single cells, but it seems that, in these two embryos, it didn’t make repairs until after they had replicated their DNA. So when they divided, some cells inherited unrepaired DNA.

Should a Child’s Health Concerns Trump Sperm Donor Privacy?

2 months 1 week

(New Scientist) – Now, in a world first, Victoria has retroactively removed the privacy of donors like Clark. Since 1 March, all donor-conceived people have had the legal right to find out their donor’s name and date of birth, even if the donor was promised anonymity. Some barriers remain – including a requirement to formally seek permission before making contact, under threat of a A$7500 fine – but Clark, now a general practitioner in Wonthaggi in southern Victoria, says it is still a “broken promise”. He believes many who donated would not have done so if they had known they could be tracked down later.

A New Bill Would Allow Employers to See Your Genetic Information–Unless You Pay a Fine

2 months 2 weeks

(Vox) – A new bill is quietly making its way through Congress that could bring the US a little closer to a Gattaca-like future in which employers could discriminate against their employees based on their genes and risk of disease. To understand how we might get to Gattaca, let’s back up. Under Obamacare, employers are allowed to offer employees deep discounts on health insurance premiums if they participate in workplace wellness programs. The programs often involve medical questionnaires and health assessments — which has meant employers can get access to some of their employees personal health data.

Placenta More Vulnerable to Zika in Early Pregnancy

2 months 2 weeks

(SciDevNet) – The placenta — an organ responsible for carrying oxygen and nutrients from the mother to the foetus — is much more vulnerable to Zika infection in the first trimester of pregnancy, and this explains why the congenital damage caused by the virus is more serious in the early stages of a child’s prenatal development, according to a study. The researchers, who published their findings in the Proceedings of the National Academy of Sciences (February 13), used reprogrammed embryonic stem cells to reproduce cells of the human placenta in the first trimester of gestation.

700 Dead as Malaria ‘Epidemic’ Hits Burundi

2 months 2 weeks

(Medical Xpress) – About 700 people have died from malaria in Burundi so far this year, the health minister said, with the authorities having registered 1.8 million infections in a rising epidemic. “Burundi faces a malaria epidemic,” Josiane Nijimbere said Monday, commenting on a World Health Organization (WHO) report. From January 1 to March 10 this year, 1.8 million infections were registered in Burundi, according to the WHO.

Ebola Vaccines Provide Immune Responses after One Year

2 months 2 weeks

(Medical Xpress) – Immune responses to Ebola vaccines at one year after vaccination are examined in a new study appearing in the March 14 issue of JAMA. The Ebola virus vaccine strategies evaluated by the World Health Organization in response to the 2014-2016 outbreak in West Africa included a heterologous primary and booster vaccination schedule of the adenovirus type 26 vector vaccine encoding Ebola virus glycoprotein (Ad26.ZEBOV) and the modified vaccinia virus Ankara vector vaccine, encoding glycoproteins from Ebola, Sudan, Marburg, and Tai Forest viruses nucleoprotein (MVA-BN-Filo).

Kenya’s Public Doctors to End 100-Day Strike That Saw Deaths

2 months 2 weeks

(ABC News) – Thousands of doctors at Kenya’s public hospitals have agreed to end a 100-day strike that saw people dying from lack of care, an official with the doctors’ union said Tuesday. The strike was blamed for dozens of deaths, as the majority of Kenyans cannot afford private health care. The government and union officials signed a deal to address pay and other issues in dispute, said Dr. Ouma Oluga, the secretary-general of the Kenya Medical Practitioners, Pharmacists and Dentists Union.

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