Tapping into our curiosity about health information

13 Dec 2013

Systems biology pioneer Denis Noble, broadcaster Áine Lawlor (centre), and Linda Avey, co-founder and CEO of Curious Inc, at the launch of the new Systems Biology Ireland building in University College Dublin

Linda Avey, co-founder of 23andMe and CEO of Curious Inc, was in Dublin last week at the launch of the new building for Systems Biology Ireland. She spoke to Claire O’Connell.

Linda Avey has a cool watch. When I ask her about it, she immediately takes it off and shows me the array of sensors on its back, which can track her activity and heart rate and connects with an app that shows summaries of all the collected data. “I hadn’t worn a watch for years but now I am addicted to this,” she says.

It’s a fitting piece of wrist-kit for Avey, who for years has been involved in capturing and using information, initially as a co-founder of personal genetics company 23andMe, which she left in 2009, and more recently she has been building Curious Inc, an online space to help people gather, explore and share information about their health.

Information gets personal

We meet at the launch of the new Systems Biology Ireland building in University College Dublin. Avey and systems biology pioneer Denis Noble (who developed a mathematical model of the human heart) have just taken part in a discussion with broadcaster Áine Lawlor about personalised medicine.

It’s a hot topic, not least because 23andMe recently had to suspend reporting on the health-related aspects of its direct-to-consumer personal genome service to comply with a directive from the US Food and Drug Administration.

The situation has trained a spotlight on how consumers can now source information about their health and risk of disease, how this could influence decisions they make and what kinds of regulations are needed.

Avey, who is no longer involved in 23andMe, reckons that the changes we are seeing now will have a long-term influence on how such information is managed as more of it becomes available to consumers through developments, such as affordable full-genome sequencing.

“What are the airbags and the seat belts that we can put in place so people don’t feel like they are going into their windshield and cracking their heads on the glass?” asks Avey. “They will need the right people to support them.”

Beyond DNA

Since 2009, Avey’s own focus has widened out from genetics and she’s now interested in crowd-sourcing the ‘phenotype’ or presentations of health or disease.

She first set up BrainStorm Research Foundation, which focused on Alzheimer’s disease, and she is now co-founder and CEO of Curious Inc. You won’t see much on its website at the moment, but the plan is to offer an online space where people can ask questions about their health and build and share their profiles, explains Avey.

“We are using a tagged-based approach,” she says. “As people track certain things it generates a list of tags that are either the symptoms you have or the drugs you are taking or treatments, maybe environmental things you are interested in.”

The tags will act as little hooks to link with others in the online community who have similar interests or concerns, she explains.

“As people become tagged they can see people who are tagged like they are and it becomes a way to find others – I think it will be intriguing to people to say ‘You have a lot of the same tags I do, what’s up with that’ – and we are really looking to enable the aggregation of that data.”

Using the data

But what about the information itself, which could be a valuable resource for research? “A group of people might come together and say we found this thing we all have in common and there’s a research organisation, if we pushed our data to them they would really be able to work with that,” she says. “We don’t see ourselves as being the stopping point, we see ourselves as facilitating.”

There’s also the potential for the information to motivate a healthier lifestyle, too, she adds, particularly if it can help address a risk of disease – Avey herself is genetically at a relatively high risk for developing Alzheimer’s disease.

“I am paying very close attention to what is going on in research,” she says. “I know for one thing that exercise is very important – we all know that, but when you have a specific thing you are addressing it makes it even more compelling to really follow what is coming out of the research. Exercising more is an easy thing I can do but I am way more motivated now because I know it’s helping my brain. The motivation comes from a different place.”

Follow the crazy ideas

Living in Silicon Valley, California, makes it easier to follow up on ideas, says Avey, who enjoys the culture of innovation there. “I pinch myself every day that I live in a place where you can have a crazy idea and pursue it, it is so awesome,” she says. “But that is not to say it can’t be done in other places – if you are passionate about something and you decide this is what you are going to do then go for it and figure out. I grew up in the Midwest. When I was 18, I went to San Francisco for the first time and I had this weird feeling that was where I belonged. Eight years later I was living there.”

And, encouragingly, she says she picked up on a positive vibe in Ireland during her visit, too: “In Ireland I get this same feeling,” she says. “It’s a feeling that there is opportunity here.”

Women Invent Tomorrow is Silicon Republic’s year-long campaign to champion the role of women in science, technology, engineering and maths

Dr Claire O’Connell is a scientist-turned-writer with a PhD in cell biology and a master’s in science communication