Bioethics.net

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 15, 2018 9:00 am

What if the Placebo Effect Isn’t a Trick? (The New York Times)

But as ubiquitous as the phenomenon is, and as plentiful the studies that demonstrate it, the placebo effect has yet to become part of the doctor’s standard armamentarium — and not only because it has a reputation as “fake medicine” doled out by the unscrupulous to the credulous. It also has, so far, resisted a full understanding, its mechanisms shrouded in mystery. Without a clear knowledge of how it works, doctors can’t know when to deploy it, or how.

November 3, 2018 9:00 am

APPLE'S HEART STUDY IS THE BIGGEST EVER, BUT WITH A CATCH (Wired)

Here’s the thing: Even if the Apple Watch excels at detecting undiagnosed AF (a big if), using it to screen large numbers of asymptomatic people isn’t necessarily a good idea.

May 1, 2017 9:00 am

Human vaccine data release jump-starts biotech’s bid for RNA drugs (Science)

The executive team at Moderna raised a cheer today after publishing their first early snapshot of human efficacy data that demonstrate their messenger RNA tech works — at least on the first try. The biotech tested their H10N8 flu vaccine on a small group of 31 subjects, looking at their response in two different measures. All demonstrated a sufficient immune response to fight off the virus in the first measure, and all but 3 in the second, for a total of 23 who received the vaccine.  None of the 8 subjects who received a placebo responded.

February 22, 2017 6:00 am

Artificial intelligence grows a nose (Science)

Now, 22 teams of computer scientists have unveiled a set of algorithms able to predict the odor of different molecules based on their chemical structure. It remains to be seen how broadly useful such programs will be, but one hope is that such algorithms may help fragrancemakers and food producers design new odorants with precisely tailored scents.

January 20, 2017 9:00 am

New Common Rule on the Federal Policy for the Protection of Human Subjects (Federal Register)

The departments and agencies listed in this document announce revisions to modernize, strengthen, and make more effective the Federal Policy for the Protection of Human Subjects that was originally promulgated as a Common Rule in 1991. This final rule is intended to better protect human subjects involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators.

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.

July 28, 2016 8:17 am

Europe overhauls rules for ‘first-in-human’ trials in wake of French disaster (Science)

The European Union is beefing up protections for volunteers in phase I clinical trials in the wake of a disastrous clinical study in Rennes, France, that resulted in the death of one volunteer and the hospitalization of five others. On 21 July, the European Medicines Agency (EMA) in London announced in a “concept paper” that it wants to improve strategies to identify and reduce risks in “first-in-human” (FIH) studies on healthy volunteers. EMA is asking for input from stakeholders.

July 8, 2016 8:51 am

President Obama’s 1-million-person health study kicks off with five recruitment centers (Science)

President Barack Obama’s ambitious 1-million-person personalized medicine study began to take shape this week with the announcement of four medical centers that will recruit volunteers starting this fall. A fifth center aims to sign up 350,000 participants by blasting the general public with ads coming soon to your web browser or mobile phone.

June 24, 2016 8:00 am

First CRISPR Human Clinical Trial Gets a Green Light from the U.S. (Scientific American)

CRISPR, the genome-editing technology that has taken biomedical science by storm, is finally nearing human trials.