data « Berman Institute Bioethics Bulletin

Features

News roundups

Announcements

Facebook Should ‘First Do No Harm’ When Collecting Health Data

April 20, 2018

Following the Cambridge Analytica scandal, it was reported that Facebook planned to partner with medical organizations to obtain health records on thousands of users. The plans were put on hold when news of the scandal broke

Quick Read

Facebook Should ‘First Do No Harm’ When Collecting Health Data

Friday, April 20th, 2018

But Facebook doesn’t need medical records to derive health data from its users. It can use artificial intelligence tools, such as machine learning, to infer sensitive medical information from its users’ behavior. I call this process mining for emergent medical data (EMD), and companies use it to sort consumers into health-related categories and serve them targeted advertisements. In this essay, I explain how mining for EMD is analogous to the process of medical diagnosis performed by physicians, and companies that engage in this activity may be practicing medicine without a license.

Last week, Facebook CEO Mark Zuckerberg testified before Congress about his company’s data collection practices. Many lawmakers that questioned him understood that Facebook collects consumer data and uses it to drive targeted ads. However, few Members of Congress seemed to understand that the value of data often lies not in the information itself, but in the inferences that can be drawn from it. There are numerous examples that illustrate how health information is inferred from the behavior of social media users: Last year Facebook announced its reliance on artificial intelligence to predict which users are at high risk for suicide; a leaked document revealed that Facebook identified teens feeling “anxious” and “hopeless;” and data scientists used Facebook messages and “likes” to predict whether users had substance use disorders. In 2016, researchers analyzed Instagram posts to predict whether users were depressed. In each of these examples, user data was analyzed to sort people into health-related categories.

… continue reading “Facebook Should ‘First Do No Harm’ When Collecting Health Data”

Image: By Victorgrigas – Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=19886293

Be the first to like.

Unlike

Bill of Health Blog

Facebook Halts Medical Data Sharing Plan

April 6, 2018

Facebook has halted plans to collect patient data from hospitals and match it up with its users’ information. The social network confirmed the idea had been discussed but had been “paused” while the company dealt with its privacy crisis

Quick Read

Hospitals Are Throwing Sensitive Patient Information Out With the Recycling

March 22, 2018

Researchers conducted a “recycling audit” of five hospitals in Toronto between November 2014 and May 2016 and found that frequently hospitals improperly threw out sensitive patient information

Quick Read

The Struggle to Build a Massive ‘Biobank’ of Patient Data

March 19, 2018

This spring, the National Institutes of Health will start recruiting participants for one of the most ambitious medical projects ever envisioned. The goal is to find one million people in the United States, from all walks of life and all racial and ethnic groups, who are willing to have their genomes sequenced, and to provide their medical records and regular blood samples

Quick Read

The Challenge of Doctor-Patient Relations in the Internet Age

March 1, 2018

“Let me do some research, and I’ll get back to you,” my patient said

Quick Read

It’s Time to Levy Penalties for Failing to Report Clinical Trial Results

January 17, 2018

Holly Fernandez Lynch writes, “Nevertheless, even the upswing still leaves quite a bit of the glass empty: Results from more than 1 in 4 trials have still not been properly reported. The ethical consequences are substantial, and the government should be using its considerable enforcement authority to put an end to it. But it isn’t.”

Quick Read

It’s Time to Levy Penalties for Failing to Report Clinical Trial Results

Wednesday, January 17th, 2018

I started my first job as an attorney in the fall of 2007, days after President George W. Bush signed the Food and Drug Administration Amendments Act (FDAAA) into law. As part of my firm’s FDA group, my job was to figure out what our clients needed to do to comply with FDAAA’s requirements for registering and reporting the results of their clinical trials on the government website at ClinicalTrials.gov.

The stakes were high enough to justify my hefty hourly rate — the prospect of an initial penalty up to $10,000 for not complying with the law’s requirements, followed by $10,000 a day if violations were not corrected within a 30-day period following notification of noncompliance. Institutions and investigators with National Institutes of Health funding also faced suspension or termination of grants and the possibility that their failure to comply with the rules would be considered in future grant applications. As it turned out, however, fear of enforcement was unfounded. A decade after FDAAA went into effect, the government has never levied a single monetary penalty or withheld research funding under the law. And let me assure you, that’s not because of perfect compliance.

As STAT recently reported, trial sponsors had disclosed only 72 percent of required results on ClinicalTrials.gov as of September 2017, and 40 percent of those reports were made after the legal deadline. On the plus side, this reflects a positive trend, compared to 58 percent compliance two years earlier, prompted in large part by “naming and shaming,” as well as some attention from Congress and then-Vice President Joe Biden.

Image via Flickr Some rights reserved by Cayusa

Be the first to like.

Unlike

STAT

NIH Launches PregSource, A Crowdsourcing Project to Better Understand Pregnancy

November 2, 2017

Quick Read

NIH Launches PregSource, A Crowdsourcing Project to Better Understand Pregnancy

Thursday, November 2nd, 2017

The National Institutes of Health has launched PregSource, a research project that aims to improve knowledge of pregnancy by collecting information directly from pregnant women. The project will explore physical and emotional aspects of pregnancy, labor and delivery and will identify distinct challenges faced by subgroups of women, such as those with physical disabilities. By offering a more comprehensive picture of the pregnancy experience — from normal pregnancies to those complicated by disease or other factors — PregSource promises to inform strategies for improving maternal care in the United States.

“PregSource benefits everyone—the participants, their healthcare providers and the research community,” said Diana W. Bianchi, M.D., director of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which leads the project. “Women can access free and reliable pregnancy information, and they can share their PregSource charts with their healthcare providers. The project also will generate much-needed data to help researchers address long-held questions about maternal and fetal health.”

Women who sign up for PregSource use online surveys to share what they are experiencing, and they can compare these experiences to those of other participants. Over the course of their pregnancies, women can chart changes to their weight, sleep, mood, morning sickness and physical activity. In addition, they can access informational resources developed by experts on pregnancy, childbirth and child development. PregSource also enables women to track their experiences after childbirth to help determine if any outcomes, such as heart disease, can be linked to events during pregnancy.

Be the first to like.

Unlike

NIH

The Opioid Epidemic in 6 Charts

October 5, 2017

Drug overdose deaths, once rare, are now the leading cause of accidental death in the U.S., surpassing peak annual deaths caused by motor vehicle accidents, guns and HIV infection

Quick Read

Facebook Should ‘First Do No Harm’ When Collecting Health Data

Facebook Halts Medical Data Sharing Plan

Hospitals Are Throwing Sensitive Patient Information Out With the Recycling

Hospitals Are Throwing Sensitive Patient Information Out With the Recycling

The Struggle to Build a Massive ‘Biobank’ of Patient Data

The Challenge of Doctor-Patient Relations in the Internet Age

The Challenge of Doctor-Patient Relations in the Internet Age

It’s Time to Levy Penalties for Failing to Report Clinical Trial Results

NIH Launches PregSource, A Crowdsourcing Project to Better Understand Pregnancy

The Opioid Epidemic in 6 Charts

The Opioid Epidemic in 6 Charts

Follow Us

Twitter Feed

Twitter Feed