The Onus is on Scientists – Shame on the AAAS

The American Association for the Advancement of Science (AAAS) has just come out against California’s Proposition 37, which would mandate the labeling of genetically-modified foods. In my opinion, the AAAS has failed its duty as promoters of Good Science. The question is not whether genetically-modified foods are safe. I see the benefits, and I see the downsides (especially as a security guy, since food safety testing is, in my opinion, very poorly done), and the debate will rage on for a long time. But whether genetically-modified foods are safe is not the issue. The issue is whether consumers have a … Continue reading The Onus is on Scientists – Shame on the AAAS

in praise of hands-on expertise

(I don’t usually share personal stories in public fora, but in this case, and with my wife’s permission, I’m making an exception.) “Shoulder Dystocia,” said the Obstetrician, as we neared the end of my wife’s otherwise-routine delivery of our son last week. This meant nothing to me. My wife, on the other hand, freaked out. She’s a physician and had understood something I’d missed. My child’s head, which had only just emerged, began to visibly turn blue. I froze and, not for the first time in these medical situations, felt utterly useless. What followed is best described as a highly … Continue reading in praise of hands-on expertise

What about the less obvious errors?

The New Scientist points out a case of genotyping error by one of the consumer genomics companies, where a software bug caused a genotype to appear non-human. The article attempts to be reassuring: Before other deCODEme customers get too irate about errors in data for which they have paid almost $1000, the bug affects only a tiny portion of the results presented. Most importantly, the disease-risk summaries provided by deCODEme seem to be based on the correct genetic information. “seem to be” is the operative terminology, indeed. As is typical in security / quality-control settings, the question here is, if … Continue reading What about the less obvious errors?

HealthEngage leaking email addresses?

For more than 10 years now, I’ve used custom email addresses when I log in to a web site I don’t fully trust, e.g. ben-SITENAME at Until recently, the only time I’ve actually been able to trace emails to their source is when I saw how Democrats reused some of their mailing lists during the 2004 and 2008 campaigns. This weekend, though, I received an unpleasant surprise. I got a spam email sent to ben-healthengage. HealthEngage is a health web site I tried out a few days months ago to explore how some companies are working on device connectivity. … Continue reading HealthEngage leaking email addresses?

Empowering the Patient vs. Enabling an Artificial Monopoly

Health Information Technology is moving along fairly quickly, with the stimulus money and the rise of Personally Controlled Health Records (Indivo/Dossia, Google Health, Microsoft HealthVault). I’m quite optimistic about the future of health data: there is a growing effort to free the data in order to empower patients. And then there are some really boneheaded efforts that appear to be for patient safety, but end up creating all the wrong incentives and further blocking patients from taking an active role in their care. This week provided fantastic examples of both. Harvard’s own Donald Berwick explains to the New York Times … Continue reading Empowering the Patient vs. Enabling an Artificial Monopoly

Personal health record: it’s about the feedback loop

In my basic electronics college course, the classic lab that always got the teaching assistants laughing was the robotic arm. The task seems simple: build a circuit that measures the amount of weight carried by a small robotic arm and activates its motor to balance out the weight. Inevitably, within minutes, robotic arms throughout the lab are oscillating back and forth at accelerating speeds, catapulting their small weights across the lab. A few minutes later, the robotic arms are adjusted, and they no longer respond to input, drooping at the slightest weight, dropping it on the floor. What we easily … Continue reading Personal health record: it’s about the feedback loop

Pinker on Personal Genomics

As some folks know, I’ve spent the majority of my time over the last 1.5 year as a member of the Faculty at Harvard Medical School in the Informatics group, thinking about security and privacy of web platforms for managing personal health data, including genomic data. I’ve had trouble blogging about it, because I’m still learning quite a bit and it’s difficult to know where to start. But now I don’t have to do an introductory post, because Steven Pinker did it already in the NY Times, much more beautifully and informatively than I could ever have done. If you’re … Continue reading Pinker on Personal Genomics

Privacy Advocacy Stunts

Deborah Peel, a well-known patient privacy advocate, and EPIC have joined forces to ask Google some questions about Google Flu Trends. Google is analyzing its search logs to detect flu outbreaks by region, which is super nifty. Peel and EPIC ask: There are, however, privacy concerns surrounding this new tool. […] In the aggregate, the data reveals useful trends and should be available for appropriate uses. But if disclosed and linked to a particular user, there could be adverse consequences for education, employment, insurance, and even travel. The disclosure of such information could also have a chilling effect on Internet … Continue reading Privacy Advocacy Stunts

Genomic Records & Voting

So part of my research is on voting. And another part is on the privacy of genomic medical records (which, admittedly, I haven’t spoken about much on this blog yet). It’s not often that I find an article that combines both. But I guess it was inevitable: In the coming era of personal genomics — when we all can decode our genes cheaply and easily — political candidates may be pressed to disclose their own DNA, like tax returns or lists of campaign contributors, as voters seek new ways to weigh a leader’s medical and mental fitness for public office. … Continue reading Genomic Records & Voting