This is the first of what we hope will become a series of profiles of Open Humans members who intrigue and inspire us. If you’d like to be interviewed, too, let us know!
I approached Joshua Berk because he currently has the most connected data of anyone in the Open Humans community. He turned out to be friendly, thoughtful, and a passionate advocate for open-access data.
Hope: Thanks for taking the time to speak with me today, Joshua. First off, can you tell me how you learned about Open Humans?
Joshua: Sure. I had been interviewing with biotech companies and heard about George Church. He was also mentioned in a genomics course I was taking at Stanford, as was the Personal Genome Project. Reading up on the PGP led me to Open Humans.
Hope: Wow, you were taking a genomics course. Nice! How come you decided to participate in Open Humans?
Joshua: Primarily to be a good Samaritan. To my knowledge, rarely if ever has all of this data been available in such a publicly-accessible, useful way. I believe the benefits to research from Open Humans – especially as the data set becomes even larger and more statistically significant – will be enormous. “The whole is greater than its parts,” as Aristotle said.
Additionally, getting this information ultimately could provide me with knowledge that will help extend my longevity or allow me to avoid a hidden catastrophe. Data gives us a more accurate idea of reality and helps us to make better decisions. Not knowing is disabling. I can actively help myself in response to knowledge.
I also think to not know is to live a less nourished, less fulfilling life. Participating in the Open Humans studies doesn’t take a lot of time, and there’s potentially a huge payoff. I work in technology and everything in the tech world has been touched by open source initiatives. We wouldn’t have an iPhone without open source software. I think this same analogy applies to science. One-hundred years from now, people will reflect back and wonder why we didn’t do this sooner.
Hope: If there were one thing that you could say to other Open Humans members, what would it be?
Joshua: I know as little as anyone else. I’m just a normal dude trying to learn some stuff. But there’s no question that the more we contribute, the more valuable the data becomes.
You know the saying ‘the rising tide lifts all boats’? I can guarantee that being a part of this community will become even more rewarding over time as additional people join. It’s like money in a savings account. Small contributions add up in the end. It’s not a matter of if, but when.
Also, just the info that you can learn today is worthwhile — and requires minimal effort. Everything on my profile took a total $100-200 and just a few hours. Contributing health data doesn’t have to be your life’s purpose. The point is that you can make an incredible contribution that pays dividends that we can’t even see yet. You will get knowledge that far exceeds the cost and time required, and that is massively useful to research in the future.
Finally, it’s very rewarding to serve as a point of social proof for others regarding the benefits of getting involved in science. It’s an opportunity to normalize something so it begins to seem less exceptional.
One more thing: I encourage people to check out http://learn.genetics.utah.edu/. I stumbled upon this site, and found it to be an incredible resource — like a distilled version of the genomics course I took. Plus, it’s totally free!
Hope: What health-tracking technology do you wish existed?
Joshua: So many things! Smart dinnerware and utensils, a toilet for measuring digestive health from stool and urinalysis… I have a long list! Generally, though, I want to understand what’s going on in my brain. I want to be able to approach how I feel in a more scientific and precise way.
I believe the amount of knowledge we don’t have eclipses what we do know, and that the more we know, the more empowered we are. More data begets more knowledge. So much of health has been reactive and restorative. In the future, I have no doubt that it’s going to be proactive and geared towards optimization. This data enables that future to happen and hopefully gets us there sooner.
Don’t be driven by fear! Be driven by hope and optimism!
Hope: What a great motto to live by. Thank you, Joshua!