News from Bioethics.com

Fertility Clinics Around the World Asked ‘CRISPR Babies’ Scientist for How-To Help

2 months 3 weeks

(STAT News) – The condemnation of the Chinese scientist who created the world’s first genome-edited babies last year was far from universal: A fertility clinic in Dubai emailed He Jiankui on December 5 — just a week after he announced the births — asking if he could teach its clinicians “CRISPR gene editing for Embryology Lab Application.” Although the English is somewhat tortured, the meaning was clear, Dr. William Hurlbut of Stanford University, who has advised He on the bioethics of his work for several years, told STAT: The fertility center was interested in offering CRISPR embryo editing to its patients.

‘Having a Child Doesn’t Fit into These Women’s Schedule’: Is This the Future of Surrogacy?

2 months 3 weeks

(The Guardian) – And as the range of fertility options open to clients has diversified, so have their requests. Now, a growing number of women are coming to Sahakian for “social” surrogacy: they want to have babies that are biologically their own, but don’t want to carry them. There is no medical reason for them to use a surrogate; they just choose not to be pregnant, so they conceive babies through IVF and then hire another woman to gestate and give birth to their baby. It is the ultimate in outsourced labour.

Disabled Woman Who Gave Birth at Care Facility May Have Been Impregnated Before

2 months 3 weeks

(NPR) – An incapacitated woman who gave birth after being a patient at an Arizona health care facility for more than two decades had been raped repeatedly and may have been impregnated before, her lawyers say. In documents filed Wednesday, the 29-year-old woman’s attorneys cite a medical exam in alleging that she suffered multiple sexual assaults. The exam found that the birth of a baby boy last December was “a non-nulliparous event,” the documents say, meaning she may have been pregnant before.

European Doctor Defies FDA Orders to Stop Sending US Women Abortion Pills by Mail

2 months 3 weeks

(CNN) – A European doctor who provides abortion pills by mail to the United States is defying an order from the US Food and Drug Administration to stop. “It is very important to continue … because it is the only safe abortion alternative for some of the most vulnerable people,” Dr. Rebecca Gomperts said in an emailed statement. “As a physician, I have the obligation to provide medical care to people in need.” A letter drawn up by Gomperts’ attorney was sent to the FDA late last week, offering a formal response to the federal agency, which had asked the doctor in March to “immediately cease causing the introduction of these violative drugs into U.S. Commerce.” 

Gene Therapy May Have Its First Blockbuster

2 months 3 weeks

(MIT Technology Review) – A newborn. A fatal diagnosis. And soon, a one-time gene replacement cure in the first weeks of life. The cost? You don’t want to know. Gene therapy is about to achieve a milestone. As soon as tomorrow, drug giant Novartis expects to win approval to launch what it says will be the first “blockbuster” gene-replacement treatment. A blockbuster is any drug with more than $1 billion in sales each year. The treatment, called Zolgensma, is able to save infants born with spinal muscular atrophy (SMA) type 1, a degenerative disease that usually kills within two years. But its expected cost is shocking, too: between $1.5 and $2 million, which would make it the most expensive one-time medicine ever sold.

The Philippines Is Fighting One of the World’s Worst Measles Outbreaks

2 months 4 weeks

(NPR) – Fifteen years ago, the Philippines had nearly eliminated measles, but the virus has made a strong comeback. Since January, the Philippines has had one of the worst measles outbreaks in the world: more than 33,000 cases and 466 deaths from the vaccine-preventable disease. The outbreak has been driven by distrust of vaccines as well as by declining rates of routine childhood immunization in the sprawling island nation.

Why Anti-Vax Doctors Are Ordering 23andMe Tests

2 months 4 weeks

(The Atlantic) – The paper was titled “Genetic Basis for Adverse Events after Smallpox Vaccination,” and it came up in 2016 when a vaccine-skeptical doctor tried to argue that it explained her patient’s development delays. The court was not persuaded, but Reif’s co-authors began hearing of yet other doctors using DNA tests to exempt patients from vaccines. Just this month, San Francisco’s city attorney subpoenaed a doctor accused of giving illegal medical exemptions from vaccination, based on “two 30-minute visits and a 23andMe DNA test.” On anti-vaccine blogs and websites, activists have been sharing step-by-step instructions for ordering 23andMe tests, downloading the raw data, and using a third-party app to analyze a gene called MTHFR. Certain MTHFR mutations, they believe, predispose kids to bad reactions to vaccines, possibly even leading to autism—a fear unsupported by science.

HIV Upsurge in China’s Students

2 months 4 weeks

(Science) – Thirty years ago, China experienced its first indigenous HIV/AIDS cases. Since then, HIV has spread from drug users and blood transfusion recipients to the general urban population, mainly through sexual routes. Particularly worrisome is the recent increase of HIV infection among college students, according to the Chinese Center for Disease Control and Prevention (CDC). The number of newly diagnosed college students has seen an annual growth rate ranging from 30 to 50% over the past several years. A proactive approach is required to spread public awareness of this trend and to promote aggressive prevention and treatment measures.

‘We As A Species Need to Come to Terms’ with CRISPR Technology as China Awaits Birth of Third Genetically Modified Baby

2 months 4 weeks

(CNBC) – After a Chinese scientist last year made history by using CRISPR technology to genetically modify two newborns, the scientific community is now struggling to grapple with the ethics of human germline editing as another woman pregnant with a gene-edited baby is soon due to give birth. “We as a species need to come to terms with this,” Dr. William Hurlbut, a senior research scholar in neurobiology at Stanford Medical School, said Tuesday at CNBC’s Healthy Returns conference in New York. “For the first time in the history of life, we can affect the future of our evolution.”

Washington State Lawmakers Just Approved Human Corpse Composting

2 months 4 weeks

(Quartz) – “Dust to dust” just became a much more literal proposition in Washington state, where the legislature approved human composting on May 21. Bill 5001, “concerning human remains,” is now on the governor’s desk, awaiting a signature after passage in the house and senate. This makes Washington the first US state legislature to approve human composting as an alternative “burial” option in a process called “recomposition” (which sounds more heartening than “decomposition” and emphasizes the environmental friendliness of this method).

‘What’s My Real Identity?’: As DNA Ancestry Sites Gather More Data, the Answer for Consumers Often Changes

2 months 4 weeks

(STAT News) – Kim’s story is not unique among the millions of people who have bought into consumer genetic testing for clues about their ancestry. Peter Cho, the head of design at a tech company, had roughly the same experience after submitting his saliva sample to 23andMe, yo-yoing from a shocking 58% Korean to 95%. Other customers have had less jarring changes, watching, for example, as small amounts of Spanish DNA have vanished to be replaced by genetic ties to Italy.

Congo Wants More Use of Merck Vaccine Rather Than J&J Newcomer: Minister

2 months 4 weeks

(Reuters) – Democratic Republic of Congo called on Wednesday for Merck’s experimental Ebola vaccine to be fully licensed to facilitate its use in the Ebola-hit country, while saying Johnson & Johnson’s rival drug would complicate matters. Both vaccines are experimental drugs that can be used under strictly controlled research protocols but Merck’s has been used throughout the outbreak and has proven highly effective, the World Health Organization (WHO) says.

Vincent Lambert: Life Support Must Resume After Court Reverses Ruling

2 months 4 weeks

(BBC) – A French court has ordered doctors to resume life support for a quadriplegic man whose case has become central to the right-to-die debate in France. Doctors had begun switching off life support for Vincent Lambert, 42, on Monday, before the court order. Mr Lambert has been in a vegetative state since a 2008 motorcycle accident. His care has divided the country and his family. His wife has called for his feeding tubes to be withdrawn; his parents insist he be kept alive.

Google Will Crack Down on Deceptive Anti-Abortion Ads

2 months 4 weeks

(CBS News) – Google is planning to crack down on misleading advertisements from anti-abortion groups that present themselves as abortion providers. The change in ad policies comes after a report revealed Google had given more than $150,000 in free advertising to an anti-abortion group. Under the new rules, which are set to roll out in June, advertisers who want to run ads using keywords related to getting an abortion will have to submit an application making clear whether they actually provide abortions.

Judge Rules Parents of Deceased West Point Cadet Can Decide What Happens with His Sperm

3 months 11 hours

(STAT News) – The parents of a West Point cadet who died after a skiing accident earlier this year can take control of his sperm and, if they wish, use it to pursue a pregnancy using an egg donor and surrogate, a New York judge has ruled. The judge, state Supreme Court Justice John Colangelo, in March ordered that a hospital retrieve the sperm from 21-year-old Peter Zhu before he was taken off life support, following a request from his parents. Colangelo said his decision then was based on recovering the sperm while it was still viable, but that he needed more time to address how it could ultimately be used.

Pakistani Children Worst Affected in HIV Outbreak

3 months 11 hours

(BBC) – The first sign that something was wrong in the small southern Pakistani town of Ratto Dero appeared in February. A handful of worried parents had taken their children to the doctor, complaining that their little ones could not shake off a fever. Within weeks, more children came forward suffering from a similar illness. Bemused, Dr Imran Aarbani sent the children’s blood away for testing. What came back confirmed his worst fears. The children were infected with HIV – and no-one knows why.

The Other Reason Kids Aren’t Getting Vaccinations: Poverty and Health Care Access

3 months 12 hours

(NPR) – During this recent measles outbreak, there’s been a lot of discussion about the religious and ideological reasons behind low vaccination rates, especially in places like Washington state and New York. But sometimes the reasons why a kid is not up-to-date on their vaccines has more to do with poverty and access to health care than a parent’s vaccine hesitancy.

Thousands of Americans Are Crossing the Border into Mexico Every Year to Get Affordable Medical Treatment

3 months 1 day

(Newsweek) – Hundreds of thousands of Americans are crossing the border into Mexico each year to receive a wide range of treatments, including medical services, dental care and cosmetic surgery, experts in what has become known as “medical tourism” say. According to Josef Woodman, the CEO of Patients Beyond Borders, an organization advocating for medical travel, as many as 800,000 to 1 million American citizens make the trip from the U.S. to Mexico for affordable treatment each year.

Fertility Practices, Coverage Lacking for Transgender People

3 months 1 day

(Bloomberg) – Insurers can expect an influx of claims for egg and sperm freezing from transgender patients who risk losing their fertility when they transition, and denying coverage may be at their peril. Transgender people see themselves as aligned with cancer patients who also face infertility when undergoing treatment. Egg freezing was once considered experimental, but that changed in 2012 when it was reclassified as an elective procedure, opening the door for more use. That prompted both cancer patients and transgender people to think about how to prove to insurance companies that fertility preservation is part of medically necessary treatments that need coverage.

Cambodia Urged Not to Criminalize Surrogate Mothers with New Law

3 months 1 day

(Reuters) – New laws being drafted in Cambodia on commercial surrogacy must not criminalize surrogate mothers, women’s rights campaigners said on Friday, after 11 women jailed for agreeing to carry a client’s baby were released from prison. The Southeast Asian nation has seen an uptick in commercial surrogacy after the practice was banned in Thailand in 2015, and has since been scrambling to draft a law to stamp out the trade.

A Waste of 1,000 Research Papers

3 months 1 day

(The Atlantic) – Back then, tools for sequencing DNA weren’t as cheap or powerful as they are today. When researchers wanted to work out which genes might affect a disease or trait, they made educated guesses, and picked likely “candidate genes.” For depression, SLC6A4 seemed like a great candidate: It’s responsible for getting a chemical called serotonin into brain cells, and serotonin had already been linked to mood and depression. Over two decades, this one gene inspired at least 450 research papers. But a new study—the biggest and most comprehensive of its kind yet—shows that this seemingly sturdy mountain of research is actually a house of cards, built on nonexistent foundations.

‘Sham’ Sharing Ministries Test Faith of Patients and Insurance Regulators

3 months 4 days

(Kaiser Health News) – Each of these Washington state residents required medical treatment during the past few years, and each thought they had purchased health insurance through an online site. But when it was time to pay the bills, they learned that the products they bought through Aliera Healthcare Inc. weren’t insurance at all — and that the cost of their care wasn’t covered. Lewis and the others had enrolled in what Aliera officials claimed was a health care sharing ministry (HCSM) — faith-based co-ops in which members agree to pay one another’s medical bills.

Baby with Spina Bifida Receives Pioneering Keyhole Surgery

3 months 4 days

(The Guardian) – For the first time in the UK, doctors have performed pioneering keyhole surgery to repair the spine of a baby with spina bifida while still in the womb. Surgeons from King’s College hospital in London used the cutting-edge technique to successfully close a hole in the spine of Jaxson Sharp 27 weeks into the pregnancy.

Investigators Found Autopilot Was Engaged in a Tesla Crash in Florida

3 months 5 days

(Quartz) – Tesla’s semi-autonomous Autopilot software was engaged during a fatal crash in March, according to a report released by the US National Transportation Safety Board (NTSB) May 16. On March 1, a Model 3 car slammed into a tractor-trailer attempting to cross a Florida highway traveling around 68 miles per hour, according to investigators who reviewed video footage from the car and nearby surveillance cameras. The impact sheared the roof off of the car, killing the driver, 50-year-old Jeremy Beren Banner. Investigators say Banner had engaged Autopilot about ten seconds before the crash, and did not have his hands on the wheels for up to eight seconds beforehand. NTSB did not assign blame to anyone for the incident and continues to investigate.

Cambodian Surrogates Freed After Agreeing to Keep Babies

3 months 5 days

(The Jakarta Post) – Eleven women allegedly paid to be surrogate mothers have been released on bail after agreeing to keep the babies, Cambodia’s trafficking czar said Wednesday, as the poor Southeast Asian nation seeks to regulate the womb-for-hire trade. The women were charged in November with human trafficking and acting as intermediaries for surrogacy agents after they were discovered in a raid on a house in the capital Phnom Penh.

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