Bioethics.net

December 1, 2018 9:00 am

This high school was rocked by an HIV scare 10 years ago (The Washington Post)

Ten years ago, Jennifer Wyms was a 17-year-old junior at Normandy High School in Wellston, Mo. She was the captain of her school’s hip-hop dance team and enjoyed going to the mall with friends. But when a health scare engulfed her St. Louis community, it cast a shadow on her high school experience.

A letter from school officials sent to parents and guardians in October 2008 relayed the news that epidemiologists with the St. Louis County Department of Health had grounds to believe that HIV may have been transmitted among some students — as many as 50 students at Normandy High School could have been exposed, it said.

“Everybody wanted to know, who had it? Where it came from? Why our school?” Wyms told The Washington Post.

November 29, 2018 9:15 am

Who owns your medical data? Most likely not you. (The Washington Post)

Do you think you own your own medical data? Your hospital and doctor records, lab and radiology tests, genetic information, even the actual tissue removed during a biopsy or other surgical procedure? Well, you don’t.

It’s a good bet that the fine print of the consent form you signed before your latest test or operation said that all the data or tissue samples belong to the doctor or institution performing it. They can study it, sell it or do whatever they want with it, without notifying or compensating you, although the data must be depersonalized in their best effort to make sure you are anonymous.

November 12, 2018 9:00 am

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States (PLOS)

The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically “are you worried about genetic privacy,” the general public, patients, and professionals frequently said yes. In many cases, however, that question was posed poorly or only in the most general terms. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data.

November 9, 2018 1:00 pm

23andMe’s genetic test for how you’ll react to medication is ahead of its time (The Verge)

The doctor still isn’t supposed to suggest changing medication until they have you genetically tested again by an independent lab. “It seems to me that if a patient has an interest in their pharmacogenetic profile that could impact medication decisions, they’re probably better off just asking the physician about what testing can be done

November 5, 2018 9:00 am

Apple Heart Study not used to gain FDA clearance for Apple Watch Series 4 ECG (Apple Insider)

The Apple Heart Study, conducted in partnership with Stanford Medicine, collected heart rate data from more than 400,000 Apple Watch users in its attempt to determine whether wearable devices can effectively detect irregular heart rhythms. Contrary to previous reports, however, the results were not used to gain clearance from the U.S. Food and Drug Administration for Apple Watch Series 4’s ECG feature.

October 24, 2018 9:00 am

The Results of Your Genetic Test Are Reassuring. But That Can Change. (The New York Times)

Laboratories frequently “reclassify” genetic mutations. But there is no reliable system for telling patients or doctors that the results of their genetic tests are no longer valid.

October 23, 2018 9:00 am

Why White Supremacists Are Chugging Milk (and Why Geneticists Are Alarmed) (The New York Times)

Worry about how new tools are allowing us to home in on the genetic basis of hot-button traits like intelligence will be misconstrued to fit racist ideologies.

October 22, 2018 9:00 am

Elizabeth Warren and the Folly of Genetic Ancestry Tests (The New York Times)

Identity is socially, politically and legally determined, even if shaped by genetics. Yet, genetic ancestry testing does not offer insights about these dynamics. So we can’t look to DNA to settle debates about identity.

October 20, 2018 9:00 am

The culprit’s name remains unknown. But he licked a stamp, and now his DNA stands indicted. (The Washington Post)

There was just enough spit on the back of the 9-cent stamp to piece together the identity of the person who licked it. Everything except for his name.

August 3, 2018 6:35 am

Ancestry, 23andMe and others say they will follow these rules when giving DNA data to businesses or police (The Washington Post)

Ancestry, 23andMe and other popular companies that offer genetic testing pledged on Tuesday to be upfront when they share users’ DNA data with researchers, hand it over to police or transfer it to other companies, a move aimed at addressing consumers’ mounting privacy concerns. Under the new guidelines, the companies said they would obtain consumers’ “separate express consent” before turning over their individual genetic information to businesses and other third parties, including insurers.