To Know Or Not To Know

Editor’s note: Pending an FDA decision, 23andMe no longer offers new customers access to health reports referred to in this post. Customers who received their health information prior to November 22, 2013 will still be able to see their health reports, but those who purchased after that time will only have access to ancestry information as well as access to their uninterpreted raw data. These new customers may receive health reports in the future dependent on FDA marketing authorization. Most 23andMe customers are interested in knowing what their genetics says about potential health risks. They’re interested in exploring their own genetic information because knowing gives them the power to take action.
Here's a graphic from the Fast Company article showing a snapshot of some of our customer data.

Here’s a graphic from the Fast Company article showing a snapshot of some of our customer data.

Knowing allows them to take preventative measures or prepare and mitigate for the things that can’t be changed. They also understand that an identified genetic risk for a condition isn’t the whole picture. Your genetics is important, but your health is influenced by many factors – your diet, whether you exercise, the amount of stress in your life along with what’s in your DNA. Knowing about a risk gives you the power to make changes to either prevent what you can or mitigate what you can’t. But not everyone sees things in that way. Some people don’t want to know. Among the many interesting angles in the recent Fast Company article about 23andMe and our CEO Anne Wojcicki, the story identified the challenge of marketing direct-to- consumer genetic testing to the right audience. Ultimately we think that all individuals will find value in genetic testing, but for now many of our customers choose 23andMe because they want to know. “Our marketing team’s job is to find people who aren’t afraid to manage their health, who aren’t afraid to know,” said Andy Page, 23andMe President. It is interesting to look a little deeper at this notion of why some people want to know and some others don’t. If you talk to someone who has tested, they’re often baffled as to why someone wouldn’t want to know. Conversely, if you talk to someone who doesn’t want to get tested, he or she seem incredulous that anyone would want to find out they had a genetic risk for any disease. It’s actually a central paradox in the Fast Company article as the writer considers her next steps after learning that her young adopted daughter has a genetic risk for getting Alzheimer’s late in life. What’s with the stark contrast between these two camps of people? A lot, apparently. Recently, a study by researchers at the University of Florida looked specifically at why some people avoided learning about their health risks, even when knowing those risks might help prevent them from ever developing the disease.

The researchers learned that a person’s receptiveness to this kind of information has everything to do with how the information is presented and who is presenting it. In one group of individuals, the researchers found that people were more likely to opt-in to finding out about their risk for type 2 diabetes and cardiovascular disease if they were asked to talk about why they might not want to see the information. It also helped if they were given information about how they could reduce their risk, and whether or not the condition was treatable. And although some individuals said they would avoid finding out about a risk because they might be distressed by it, several studies indicate that people don’t experience inordinate stress. Learning of these risks can also trigger positive actions, like talking to a doctor and preventative treatment. 23andMe gives people the choice to take this information and inform how they manage their own health. We’ve included a short video from a PBS station in San Francisco asking people whether they’d want to know. Check it out.
A couple of producers for “On The Media” a show that airs regularly on NPR stations discuss the reasons they’ve decided to do 23andMe and then spit together. Have a listen.
  • jonathan stevens

    I think one of the central issues is the information I learn from genetic testing, because I share some of my DNA with my close relatives, may reveal something about their genetic risk and whether they have a right to not know. The dilemma is mine of whether I should tell them or not (I have Parkinson’s disease for example).

    Here’s my take on it:

    It is crucial to present the data in a sensible way (most mutations give a susceptibility to a disease or increase the likelihood, most are not a genetic life sentence)

  • Neoliberal Agenda

    Few people would refuse a blood test, because they may find out they have a decease. On the contrary, people take blood tests so they can find problems and do something about it!

    I bought my first kit 3.5 years ago and I’m surprised it hasn’t gained more popularity. When I tell people about DNA testing they are all very interested, most of them have never heard about it. I don’t know how many times I have written down the address to

    One problem, at least for people living outside US, is that the process is complicated; you have to find the home page, order it online using credit card, wait weeks for the kit to arrive, fill in customs related paper work (three copies!), fill in address, weight etc. for DHL and arrange a pick up. I know several people who bought the kit that never managed to send it in.

    A better approach would be to sell the kit at pharmacies with a prepaid envelope that they can drop at the closest postbox. The kit would go to a local agent that would repackage it, fill in customs related information and send a batch of kits to US, once a week. Since it will be cheaper to ship several kits at once (to/from US) the price could still be competitive.