Monday, November 22, 2010

Wandering minds, self-tracking, and citizen science

via The Quantified Self

A reader over at my blog shared the NYT article Wandering Mind Is a Sign of Unhappiness, which reports on research by ... Read More >>

Why I'm releasing my genetic data online

via Genetic Future

Back in June I launched a new blog, Genomes Unzipped, together with a group of colleagues and friends with expertise in various ... Read More >>

A Prescription for Doctors

via The Decision Tree

Enough about patients: What is a doctor to do? In the past few months, since The Decision Tree book came out, I’ve had ... Read More >>

Update: EEOC Issues Final Genetic Nondiscrimination Rules

via Genomics Law Report

The Equal Employment Opportunity Commission (EEOC) has issued its final rules and regulations implementing the employment ... Read More >>

Digging Deeper into the EEOC’s Final GINA Regulations

via Genomics Law Report

As we wrote yesterday, last week the Equal Employment Opportunity Commission (EEOC) issued definitive rules and regulations ... Read More >>

Twitter Roundup: Personalized Medicine Conference Edition

via Genomics Law Report

With so many developments at the intersection of genomics and the law, there are often a variety of interesting stories that, ... Read More >>

Wednesday, October 27, 2010

ePatients: a connected, collaborative, creating community

via Disruptive Women in Health Care

By Jane Sarashon-Kahn. The following, originally posted on Health Populi on September 30th summarizes the ePatient Connections ... Read More >>

Monday, May 31, 2010

Consumer Genetics Conference

I am hopping around trying to catch as many conferences as I can afford on the intersection of digital technology and scientific/medical research.  Next up, Consumer Genetics Conference in Boston June 2-4th.  Want to work up research on DTC - direct-to-consumer genetics.  Specifically looking at Why are these DTC technologies necessary?  What is the technological and cultural impetus behind DTC?  Why is it necessary and why has it emerged at this particular time?  What are the companies hoping to accomplish with DTC?  What are the challenges and promises of DTC?  How has that nature of genetic information have been impacted by the culture of new media?  How is it acting as a new

This seems especially relevant as the Congress is going to hold hearings on DTC genomics and how it should be regulated. Check it out here

Leaving tomorrow and will report back!

Mobile Health - Some Thoughts

It was really interesting to listen to lots of very smart people trying to see how most effectively use mobile technology (smart phones, mobile apps, texting, etc) to encourage and promote healthy lifestyles - diet and exercise.  The presentations ranged from slightly creepy, an application that can detect from headphones every time you are eating and log that information, to inspiring - using mobile applications to promote AIDS awareness and prevention; using mobile phone cameras to have students make little HIV PSAs in hours.  The last one was courtesy of the University of Georgia's New Media Institute initiative Personal Media, Public Good.  It is well worth checking out.  Its Director Dr. Scott Shamp made an inspiring presentation. 

However, as I was listening to 50+ speakers dealing with issues behind enabling people to constantly and consistently monitor their bodies, record their information and alter their behaviors, I couldn't help but wonder if the vision here is a state where nothing can or should exist outside of digital technology.  We have been a subject to technology for a long time, so that's not new, but digitality introduces a new wave of thinking with and about technology: there is no value anymore in not knowing, not monitoring.  Experience then is understood solely in terms of information that it can generate.   

If the question that the conference wrestled with is how to keep people healthy then we must ask how mobile technology defines health.  What does it mean to be healthy on your phone?  And who profits and benefits from keeping people healthy?  The idea seems to be is that the more we can push people into donating and monitoring information the healthier we will be.  Behavior change then becomes about your social networks and the social world we live in.  These are problematic issues that need to be addressed.

Sunday, May 23, 2010

Mobile Health Conference at Stanford

I am going to this tomorrow and Tuesday.  Should be very interesting to see how people see the interaction between mobile technology and health.  Stay tuned for reports.

Friday, May 21, 2010

DNA and Me: Personal Genomics Come to UC Berkeley

Each year, UC Berkeley starts their freshman class off On the Same Page.  Usually means each incoming freshman receives a copy of a book - last year it was the The Omnivore's Dilemma: A Natural History of Four Meals by Michael Pollan - and at the beginning of the school year there are a series of discussions, seminars, and lectures about the book's topic. 

Next fall, however, instead of a book, freshmen will receive a personal genomic test that will test for three genes that help regulate the ability to metabolize alcohol, lactose and folates.  The participation is voluntary and confidential.  There will be a series of seminars and lectures in the Fall that will further investigate the future of personalized medicine.

I've been writing on the  topic of personal genomics and medicine for a little while now and this is another absolutely fascinating development.  This is an ambitious program by a major public university that attracts much attention and a lot of hand wringing  Lots of people are concerned for privacy implications and for the potentially harmful use of genetic information.

What is so interesting to me is how volatile the very idea of divulging genetic information can be in our culture.  There is such DNA mystique that a test - which reveals nothing all that harmful or intense - can be a source of such controversy.  It used to be that blood was considered to be a seat of the soul and any tempering with it was seen as evil or dangerous.  Now it is genes.  No one cares about a myriad of blood tests that we undergo in our lives - even though those possibly reveal more about our health than any gene test at the moment.  However, a genetic test arises much suspicion.  We are very afraid of Gattaca 
- a great movie that really made no scientific sense, but that I still very highly recommend.  I am fascinating with what these debates mean for how we understand the nature of genetic materials.