Sunday, 26 January 2014

How happy are 23andMe customers?

In October last year, I joined several of my colleagues at the Sanger Institute to order a bunch of direct-to-consumer genetic testing kits from 23andMe. The reason for the batch order was the associated discount. The total cost per person turned out to be around $130, of which $80 were for the kit and $50 for shipping from California to England.

Most of us received our data earlier this month, and I thought that it could be interesting to learn what my colleagues, all of whom probably know more about genetics than the average person, thought of their experience. This is why I asked them to fill in a small survey. Here are the results.

Results of a survey of 16 23andMe users at the the Wellcome Trust Sanger Institute. Click on the figure to enlarge it.

The results are largely self-explanatory. In the following, I am elaborating on a few points that may not be obvious.

Everyone thought that the test was worth what they had paid for it, and 7 out of 16 changed their diet, exercise or lifestyle habits as a result. Respondents generally thought that 23andMe did a good job in presenting the data.

We ordered in October 2013, before the FDA told 23andMe to stop providing health-related results, which meant that we were able to get ours. There are dozens, if not hundreds, of diseases the test returned information on. For the most severe ones, such as Alzheimer's, users had to click through a series of questions affirming that they really want to see their results. This is due to the potentially severe impact of these variants. For example, those who have two copies of a specific APOE gene variant are around ten times more likely develop Alzheimer's. 13 out of 16 respondents chose to see their data on these potentially high-impact variants.

Generally, people thought the health section of their test was interesting. The same cannot be said about the ancestry section, which provides information about genetic origins of the user's family. This result is likely to cause concern for 23andMe, as they have been asked by the FDA to stop providing health information and as a result are now concentrating on ancestry information. A majority (11 out of 16) users thought that 23andMe should not be regulated by regulatory authorities like the FDA.

Do you have any thoughts on the survey or on 23andMe? Please feel free to share them below.

5 comments:

  1. Very interesting little survey! I have to say most of it was as I expected, but I was kind of shocked to see that most people didn't think 23andMe should be subject to regulation to the FDA. Did you get a sense of why your colleagues thought this way?

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    1. Thank you Rob. My impression is that many people in the genetics community see the FDA regulation of 23andMe as either unnecessary or unhelpful. I don't know why that is, and I don't entirely agree with that sentiment either.

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    2. Interesting initiative but numbers should be really higher before going into any kind of discussion.

      Also, are your colleagues PhDs in molecular biology?
      because those are educated people who are supposed to understand the data, and we know about the relationship between PhDs, pizzas, activity and sports ;-))

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  2. I also ran an informal survey with similar results:

    http://cdwscience.blogspot.com/2013/12/who-was-primary-audience-for-fda.html

    Didn't ask the same exact questions, but I found that practically none of the people answering the questionnaire thought they deserved a refund because of the FDA warning, lawsuit, etc.

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    1. That's a fantastic survey, thank you for sharing it! I wish I had thought of some of those questions.

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