Bioethics.net

May 11, 2018 9:00 am

‘I saved them because I’m a superhero!’: 4-year-old donates bone marrow to his baby brothers (Washington Post)

The 4-year-old boy fancied himself a real-life superhero, wearing a blue T-shirt with photographs of his 4-month-old twin brothers, who were born with a rare immunodeficiency disease. Michael’s little brothers —  Santino, “Sonny,” and Giovanni, “Gio” — needed a bone-marrow transplant, and when his parents told him that he was a donor match, Michael told them that he wanted to save his brothers and would give them some of his.

May 7, 2018 9:00 am

Families of Children with Rare Diseases Fuel Gene Therapy Research (The Scientist)

It’s a compelling narrative: A parent learns that his or her child has a fatal disease with no cure, and, though not a scientist, embarks on a quest to find some treatment. Such stories have played out in the plotlines of films such as Lorenzo’s Oil and Extraordinary Measures, on national morning shows and local news segments, and on crowdfunding pages to drum up support for the cause.

April 25, 2018 4:34 pm

British toddler Alfie Evans not allowed to leave country, UK court says (CNN)

Alfie, admitted to Alder Hey Hospital in December 2016, was diagnosed with a neurodegenerative disease associated with severe epilepsy and has been in a semivegetative state for more than a year. During that time, he has been kept alive by artificial ventilation in the critical care unit.

April 3, 2018 9:00 am

Sudden infant death syndrome may have genetic basis, study suggests (CNN)

July 5, 2017 10:00 am

For Parents of U.K. Infant, Trump’s Tweet Is Latest Twist in an Agonizing Journey (The New York Times)

The long journey for Connie Yates and Chris Gard, whose infant son, Charlie, cannot breathe or move on his own, appeared to have come to an end last week. The courts had ruled that the baby’s rare genetic condition was incurable and that the only humane option was to take him off life support. The couple announced that they were getting ready “to say the final goodbye.” Then Pope Francis and President Trump weighed in, offering statements of support and thrusting a global spotlight onto a heart-rending case that has become a cause célèbre in Britain.

June 14, 2017 9:00 am

Heaven over hospital: Dying girl, age 5, makes a choice (CNN)

January 20, 2017 9:00 am

How Science Is Helping Us Understand Gender (National Geographic)

A “neutral space” is a hard thing for a teenager to carve out: Biology has a habit of declaring itself eventually. Sometimes, though, biology can be put on hold for a while with puberty-blocking drugs that can buy time for gender-questioning children.

November 10, 2016 10:52 am

U.S. watchdog told Medicare, Medicaid that EpiPen was misclassified in 2009: senator (Reuters)

The internal watchdog at the U.S. Department of Health and Human Services warned the office tasked with administering federal health insurance programs that Mylan NV’s EpiPen was improperly classified as a generic drug in 2009, Senator Charles Grassley said on Tuesday.

November 3, 2016 8:00 am

More Children Are Being Poisoned By Prescription Opioids (NPR)

Young children and teenagers are increasingly likely to be poisoned by opioid painkillers that are often prescribed for other family members, a study finds.

October 7, 2016 8:00 am

This 8-year-old is free of cancer — for now — after a ‘breakthrough’ treatment (Washington Post)

By the time 8-year-old Ava Christianson got to the National Institutes of Health this summer, she had lost several grueling rounds to leukemia and was bracing for the next one.