Hot Topics: Privacy
by Olya Kudina and Lori Bruce
Online social spaces maintain an increasing presence in our lives. Yearly, people upload around 1.2 trillion photos on social media and share personal stories and milestones through their social networks.…Full Article
by Craig Klugman, Ph.D.
Jump to The Resident (Season 2; Episode 13): A risky organ transplant; Jump to The Good Doctor (Season 2; Episode 14):Face Transplant; Jump to Chicago Med (Season 4; Episode 13): Suspecting the worst; HIV safety or stigmatization; Suspicion and stealing from patients; Jump to Greys Anatomy (Season 15; Episode 12): Removing Dying Patient’s Autonomy
Eloise is a third year medical student in need of a double lung transplant as a result of her cystic fibrosis.…Full Article
This post is a response to a previous blog, “Ending Privacy As We Know It”(January 10, 2019)
by Nancy M.…Full Article
This blog post will appear in a future issue of the American Journal of Bioethics
by Nita Farahany, JD, PhD; Saheel Chodavadia; and Sara H.…Full Article
by Craig Klugman, Ph.D.
“Exploring ethical issues in TV medical dramas”
Jump to The Resident (Season 2; Episode 5): Buying Thought Leaders and Handsy Docs; Jump to New Amsterdam (Season 1; Episode 5): Gun shootings; Jump to Chicago Med (Season 4; Episode 5): Genetic secrets and duty to inform
Bell negotiates a deal with a new start-up medical device company: For a substantial discount, he will make the company the sole source of medical devices at the hospital.…Full Article
by Craig Klugman, Ph.D.
This week I was on a panel discussing the topic of genealogical searching—running a DNA sample found at a crime scene against criminal, public and commercial DNA databases with the goal of not finding a suspect, but to find a relative of the suspect.…Full Article
The advent of social media technology has opened many new avenues of research in population health, demographics, psychology, and the social sciences. It is crucial to consider whether researchers conducting observational research using social media need to obtain consent from their research subjects, and whether the current research regulations in the United States establish effective,… Read more
The post Social Media, Privacy, and Research: A Muddled Landscape appeared first on The Hastings Center.Full Article
by Keisha Ray, Ph.D.
“Nothing about us without us.”– J.I. Charlton, adopted by disability rights advocates
Recently I sat in a room of scholars who teach health humanities in medical schools and undergraduate institutions across the United States and Canada.…Full Article
“I want us to be a normal family”: Toward an understanding of the functions of anonymity among U.S. oocyte donors and recipients
Genes wide open: Data sharing and the social gradient of genomic privacy
When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing
Ethical Issues in Fecal Microbiota Transplantation in Practice
Ethics, Refugees, and the President's Executive Order
Tracking U.S. Professional Athletes: The Ethics of Biometric Technologies
Ingestible Drug Adherence Monitors: Trending Toward a Surveillance Society?
Case Study:The Obligations to Report Statutory Sexual Abuse Disclosed in a Research Study
If no one reads the terms and conditions, how can they continue to be the legal backbone of the internet?
The average person would have to spend 76 working days reading all of the digital privacy policies they agree to in the span of a year. Reading Amazon’s terms and conditions alone out loud takes approximately nine hours.Full Article
A decision by FamilyTreeDNA, a prominent consumer DNA-testing company, to share data with federal law enforcement means investigators have access to genetic information linked to hundreds of millions of people.
An early pioneer of the rapidly growing market for consumer genetic testing, FamilyTreeDNA confirmed late Thursday that it has granted the FBI access to its vast trove of nearly 2 million genetic profiles.
Police stations from Massachusetts to Mumbai have received similar alerts from Facebook over the last 18 months as part of what is most likely the world’s largest suicide threat screening and alert program. The social network ramped up the effort after several people live-streamed their suicides on Facebook Live in early 2017. It now utilizes both algorithms and user reports to flag possible suicide threats.Full Article
These commercials are cute and make DNA testing look fun. And they’re clearly working. Clever marketing combined with holiday deals means parents are buying their kids DNA tests from companies 23andMe, AncestryDNA and MyHeritage. But these tests might not be appropriate for all kids, and experts say there are many reasons parents should think carefully before sending their child’s spit through the mail.
Katie Stoll, a genetic counselor and executive director of the nonprofit Genetic Support Foundation in Olympia, Wash., says her concerns around using these tests on minors boil down to the autonomy of the child. “Children should have the opportunity to grow up and decide for themselves whether or not this is information they want to know,” she says of DNA test results.Full Article
Theft of your personal medical information is on the rise, despite stringent privacy laws intended to safeguard it, according to a recent study in the Journal of the American Medical Association.
The breaches of electronic health records can include a vast array of personal information, including your Social Security number and medical history. The theft is the latest example of how all private data is increasingly subject to breaches, where credit card numbers, account log-ins and more end up in the wrong hands.Full Article
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.Full Article
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.Full Article
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.Full Article
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 doneFull Article
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.Full Article