We talked with John Wilbanks today, and discussed everything around health and biohacking to github and sharing. I'd like to share some of what resonated with me.
Access to Medical Information
Changing orthodoxies of how research is conducted, who pays, and access were huge parts of the discussion.
Who's the steward of my data? What do I have access to? I ended my last post on 23 and Me and my interest in doing it- but honestly, reading their little notice about not having access to my health data from it is a huge concern for me! If you go to their story page, you can see the "impacts" of the test and how the work can contribute to outside research like to parkinsons or cancer... so what? Other people have access to your health information even though YOU don't? What? That's insane. This is due to the FDA's very public demand for the company stop selling and marketing the health components of the test based on concern about the clinical and analytical validity of the product. What do you think? Should customers have access to potentially inaccurate genetic information (think about all of the fear and stress someone could go through thinking they have a high likelihood for developing a disease)...or is this one of many first steps towards creating a more open world for healthcare information?
Genomera is interesting. In a nutshell, it turns the clinical research process "on its head" as my classmate explained. In traditional models, a hospital, research group, or a pharmaceutical company often initiates a study, for which people are then invited to get tested to see if they fit the requirements for participating in the study. There's usually some sort of compensation for the study, ranging from free treatment drugs to travel stipends and more. Genomera does the opposite. Individuals define the study they wish to conduct, and pay to have it initiated. The idea is that based on the findings you're interested in, you would be willing to pay for the study yourself, in hopes that the findings would be of value. They flaunt the ability to help you:
- Create a study
- Enroll participants
- Automate protocol tasks
- Automate data collection from devices, labs, apps, participants
- Communicate with participants
- Analyze results
- Re-enroll participants in follow-up studies
This type of crowd-sourced research has rich ties to biology. Think about it. We have "citizen scientists" studying en-masse things like bird migration. More recently, things like fold-it have popped up in the name of science as well, to help the scientific community determine three-dimensional protein structures, as well as an increased public interest in biohacking and biohacking meet up groups. We even have one here in Chicago! I introduced BarnRaise at a recent meeting at the Institute of Design, they were looking at how to improve memory. There's pages dedicated to crowdsourcing new ways to "hack" your body, like
One of my classmates created a systems level perspective of what currently happens and what sharing economy is trying to promote.
I have to admit, I'm having an extremely frustrating time with SquareSpace's new blogging system- this is the second time I've written a huge post only to have two thirds of it disappear.
That said, I'll just add a few pictures and links for further reading. I'm a little heartbroken over the loss of the rest of my post at the moment.
Research for the Public Domain
We talked with John Wilbanks, from Sage who discussed the journey of discovery him and his team have taken and some of the frustrations they face as a small group. Interestingly, big pharma seems to be one of their biggest supporters for a number of reasons, primarily speed of research. They're aim is to create a repository of research and findings in the public domain for cross-disiplinary use which will hopefully lead to new knowledge. Note: I noticed his team doesn't have any designers, at least by name and practice! I'd love to work here and dive into deep fuzzy issues in service to their mission!
Definitions for Sharing: What it is and isn't.
We also talked to Mira Luna, the Organizing Director of Shareable. I was most interested in the acceptance of sharing models given the differences in cultural norms and access to information, as well as certification.. which lead to a whole new conversation about a term called "sharewashing" not unlike greenwashing, which focused on incorrectly labeling something as part of the sharing economy which is actually a traditional economic model of profit for a product or service. This article gives a good overview. In short:
- Renting is not sharing
- Working for payment is not sharing
- Surveillance is not sharing
Other interesting news: Price Tags for Healthcare
It's not just our health data that's affected by the push towards openness. I just saw this article yesterday about how healthcare is now required in Massachusetts to have "price tags". Information that used to be so hidden even their customers weren't sure how much a procedure cost until after it was completed (argh!) are now open. I'm very, very excited to see what becomes of this, and what else is impacted by this change.
That's all for now! Please share your thoughts and comments if you'd like!