23andMe In Canada, 8 Years Later There's Miles to Go

Years ago, eight actually, 23andMe was founded. I was an AC at High Road in Ottawa and was naive enough to think that we should pitch them for new biz. My fellow PR peeps will appreciate the zeal and stupidity that it took. Needless to say the conversation went nowhere. 

I have to admire the company for its early day strategy - they focused on getting the product right, understanding how consumers would use it and respond to it, and focusing on their mission and vision.

Tonight, I was so lucky to meet the team at 23andMe including founders Anne Wojcicki and Uta Francke as part of their (re)launch into Canada. 23andMe is a genetic database service. From the outset, they had a clear mission to help people understand their personal genome and help construct their ancestry. At the same time, making personal health information available by understanding predispositions based someone's chromosomal highway. 

In Canada, 20,000 people signed up. Eager to learn more about the helix they carried. But, they were unable to find out the health reports based on the information - they could only access the ancestral connections within the database. 

It seems crazy to think that just 8 years ago, the information highway related to healthcare was touchy. eHealth in Canada was.... well, viewed by many as an over-investment in taxpayer dollars for few results. Security for any sharing of health-related data was met with incredible skepticism. We didn't have a culture of "there's an app for that." The cloud didn't exist. And few believed that revolutionizing healthcare was possible. It's no wonder that 23andMe and other companies like it were told too much information wouldn't be good for consumers. 

That has all changed now. Today, 23andMe is making its 108 reports - including genetic risk factors - available to Canadians. The 20,000 who had already had their genetics mapped out will automatically get this new information .

In 8 years, 23andMe has inspired people to find out what their true heritage is, whether they are at risk for breast cancer or heart disease, to meet siblings they didn't grow up with, and to understand more about who they are. At the same time, there are a lot of questions. Information can be incredibly empowering, sometimes scary, and on occasion a burden. What I learned is that the people at 23andMe understand these implications. They aren't just geneticists, they are people who are trying to understand the response from people as they get access to this new information. They are sympathetic to each person's journey - those who pursue it and those who don't. 

It was an awe-striking evening for a former bio-nerd like me. There's power in the information that we haven't even begun to realize. But they have a vision. It's clear to them. It's inspiring. And I am really grateful to have heard first-hand about their journey and the passion that is leading them. 

Nothing in Life is Free

And when it comes to social media this is one gift horse you should definitely look in its mouth. 

Of course, I'm referencing Facebook and how it manipulated almost 700,000 users' feeds to see if the amount of positive or negative information presented influenced the sentiment in the posts of those users. Guess what. It did. Makes sense....when I worked as a standardized patient the first thing we were told was to go home and watch a comedy to help us break the mood of the pain/depression we were acting out during the day. 

The interest in this study however is less about the findings, and more about the ethics concerning how the research was conducted. What you need to know is that no individual user signed up for this study. Facebook didn't ask people to participate. Think about that. For a week, you may have been fed a disproportionate amount of positive or negative news from your friends, news sites, groups and companies you follow. What you once thought was a fair representation of what was going on in your circle of connections may have been skewed. On purpose. 

Now, Facebook cites within its ToS it can use the information it receives for internal operations including research and service improvement. This section found under policies is named "How we use the information we receive." Wait, WHAT? Based on the policy, information received by Facebook the company can do research. Ok. I buy that. Most companies collects information on its customers/users to help better serve them - whether that's through recommending a new product, developing a new feature, you get the idea.

But nowhere in the policy does it say that in order to receive the information to conduct the research, that the company has the ability to manipulate the fundamental nature of the service itself. Oh wait, I'm in PR. I can't possibly believe this to be true... 

Let's be real. Almost everything online is manipulated in some way. Companies run pricing tests to see which number will drive the most sales. A/B tests may look at how people respond to new imagery. Search engines if not driven by advertising, is driven by teams of marketing experts looking at SEO/SEM. So what's ethical, what's not, and where do we draw the line? Is that even possible? 

When chatting with friends this weekend about privacy and how data is used (not specifically about the Facebook study), I was shocked to find out that not a single person in the group really cared about how their data could be used. The resounding consensus was that it didn't impact their day-to-day so it didn't seem to warrant their attention. 

My question is this, if how information is collected isn't through the natural way you interact with the service, and is instead manipulated to the point of interrupting your behaviour and psychological response to the information presented, is it right? Are you comfortable with it? Should the potential cons outweigh the pros? 

One of the first things a good PR pro builds their career upon is that transparency is key. I'll be the first to admit that while I think the approach taken is unethical, I won't be cancelling my Facebook account. Knowledge is power after all, and because I'm in PR I'm generally quite aware of how my data is used, and what's happening behind the scenes. If nothing else, I hope people will at least give this pause for consideration in how they post, what sites they use, and understand that situations like this do and will continue to occur. It's important to understand that the information you read is being presented to you. It may even be manipulated. It may not be organic. 

I also hope that this study encourages companies to be explicit in their intent. That studies are conducted in a transparent way - with notifications to users. And that those in the legal profession take a hard look at this example to help build legislation around data usage to best protect the people using these services. 

What do you think about the study? Will this change how you view the sites you use? Will you be using them differently or cancel an account?