Your personal health: Social networking XY.0 revisited and some killer video

It’s one of those rare occasions that I am going to shamelessly regurgitate content from somewhere else, but Kara Swisher, who writes Boomtown up All Things Digital has some cool video that is worth sharing.

Had enough of 23andme yet? One definite advantage the company has in getting mindshare is it’s location and it’s obvious ties to the tech community and the tech press. The result, a visit from Kara Swisher.

Kara gets a tour of the 23andme facilities.

Part 1 of Kara’s interview with Linda Avey and Anne Wojcicki

Here is part 2. In this part, they talk about privacy, so I was very curious to hear this

Lots of thoughts from listening to these interviews and other thoughts in general. When Kara introduces 23andme, she calls it a “genetic social networking” company. It’s interesting to see the tech press zoom in on that aspect. Anne Wokcicki also refers to it as a social network for genetics. Attila has called this Social Networking XY.0 (Updated from networking X.0 to networking XY.0 as per Attila’s comment), and it seems to be a bigger part of the 23andme thinking at this time than I had understood earlier. I am a little troubled about the social networking aspects at this time. Perhaps I need to see the actual implementation to grok the scope and understand the level at which networks might be created. There are obviously privacy implications, and the danger of misinformation in a complex field. On the other hand, there is the possibility of becoming involved, openly, in research efforts, and getting people interested in genomics, sequence relationships, etc. I already have visions of new ways of teaching people biology. 23andme needs to tread carefully here. Some people are going to get very nervous about social networking around your genetic profile.

Avey and Wojcicki spend some time talking about privacy, and the steps they have taken to protect privacy. In the end, the biggest challenge for the entire space is going to be balancing privacy, enabling and empowering people to access information relevant to their genetic makeup (IMO the killer use of such a facility), and furthering research into pharmacogenetics given the treasure trove of information available. I can only re-iterate that the long term success of this field MUST include clear definitions and agreements around data portability, data ownership, and data privacy. I like the idea of opt in programs for research where people feel they can get involved (although data quality and integrity will be open questions there) and I do like the idea of information around shared traits, etc, but it’s a very fine balancing act and the next few years will be very interesting. Another issue to be addressed is the issue of knowledge. While I do not quite share his somewhat alarmist views, Steve Murphy has correctly brought up the issue of a lack of trained physicians several times. I do like Navigenics’ approach here, where they will only share information about well understood diseases and SNPs. In the near term, “genetic counselor” might just become a very popular job description

It was also interesting to note the mix of software/web developers, writers and scientists at 23andme. It’s a unique mix to be sure (the same is likely to be true of other companies in this space). I wonder what kind of informatics infrastructure they have there?

Personaly, I would love to take that tour. I would ask some very different questions.

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