Tag: 23andme

23and…everybody

I saw a tweet which included the unstoppable Aral about 23andMe

You may remember I wrote about my thoughts about joining up and then a follow up.

Well…. as per the tweet

Today, 23andMe announced what Forbes reports is only the first of ten deals with big biotech companies: Genentech will pay up to $60 million for access to 23andMe’s data to study Parkinson’s. You think 23andMe was about selling fun DNA spit tests for $99 a pop? Nope, it’s been about selling your data all along.

Since 23andMe started in 2006, it’s convinced 800,000 customers to hand over their DNA, one vial of spit at a time. Personal DNA reports are the consumer-facing side of the business, and that’s the one we’re most familiar with. It all seems friendly and fun with a candy-colored logo and quirky reports that include the genetic variant for asparagus pee.

Its not even shocking…

We all (well some of us) knew this was coming. It does make me wonder how far companies such as 23andme will go?

I started listening to Andrew Keen on Triangulation today before leaving for work. I only got 10-15mins through when I found myself agreeing with Andrew on something (and it really hurts me to say so).

He mentioned something about Uber and the value of these services. 23andme I imagine would be added to the example pile too.

Do You Really Want to Know Your Future?

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I was listening to the Freakonomics podcast today and heard a interesting piece which reflects my thoughts on 23 and Me…

Stephen Dubner talks to people who have a rare but terribly destructive neurological disease Huntington’s. And ask if children of the disease if given the opportunity would want to know if they were also at high risk or not.

As Stephen says…

If you could take a test that could foretell your future, at least your medical future, would you? Would it be valuable for you to know if something bad was going to happen? Or would it be more valuable to not know?

My post about 23 and Me, isn’t anywhere near like this question but has similar answers…

As one of the people asked on the podcast said…

I think this is something that is horrific information, very, very powerful information. If you’re somebody who has a 50 percent risk as most people at risk around the world there is nothing, nothing whatsoever that you can do that makes any difference whatsoever, nothing, nothing, nothing, nothing, nothing, nothing. There’s no treatment you can take. There’s nothing to forestall it. And if we actually had something that made a difference in treatment, I think that would make a huge difference.

Or another part…

DUBNER: Well here’s what I wanted to ask you. I mean, we do know that economists think about the world differently and we appreciate that, especially on this program. I mean, we love that. On the other hand, there is this assumption among economists and within economics that people do value information and that they eschew or try to get rid of uncertainty, because economists see that uncertainty brings about bad things. But I’m just curious if the rather strong evidence that so many people embrace uncertainty in their own private lives may have changed or nuanced a little bit the way that you as an economist think about the downsides of uncertainty and maybe there is something to be said for it.

OSTER: No, absolutely I think that I have come to think that in fact for a much larger share of the population than I would have expected it seems like this preference for living with uncertainty is quite strong. And I would have said some people have that preference. It seems surprising to learn that basically, at least in this population, it’s like the vast majority of people appear to be much more interested in living with uncertainty, which isn’t something that I think would be true for me, and I would not have thought would be true for some many people.

DUBNER: And it doesn’t weaken your preference for certainty at all.

OSTER: No, I don’t think so.

The answer is very tricky and not a simple one, but we already knew that…

Better to know or to live in blissful ignorance?

23andme box

Following my brush with death I have taken a much deeper look at my family genes.

But one of the ultimate ways to know more is by signing up to 23 and me.

Although the idea freaks most people out, when you’ve been so close to death theres really little which can freak you out. So I have been considering the process quite a lot and looking through there material and some of the backstory of 23 and me.

Besides my thoughts of a world like Gattaca, I’m wondering if its better to know or live in a world of blissful ignorance? Although I do have to say blissful ignorance is part of the reason why I ended up in hospital. I do however wonder about 23 and me’s terms of conditions. There privacy statement is interesting too…

You may learn information about yourself that you do not anticipate. This information may evoke strong emotions and has the potential to alter your life and worldview. You may discover things about yourself that trouble you and that you may not have the ability to control or change (e.g., your father is not genetically your father, surprising facts related to your ancestry, or that someone with your genotype may have a higher than average chance of developing a specific condition or disease). These outcomes could have social, legal, or economic implications.

Genetic Information that you choose to share with your physician or other health care provider may become part of your medical record and through that route be accessible to other health care providers and/or insurance companies in the future. Genetic Information that you share with family, friends or employers may be used against your interests. Even if you share Genetic Information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud.

We do not sell, lease, or rent your individual-level Personal Information without your explicit consent. As a general rule, 23andMe will not disclose your individual-level Personal Information to any third party, except under the following circumstances:

  • Partners or service providers (e.g. credit card processors or our contracted genotyping laboratory) process and/or store the information in order to help us provide, understand or improve 23andMe’s Services.
  • If you have consented for research, research contractors may access your individual-level Genetic and Self-Reported Information onsite at 23andMe’s offices for the purpose of scientific research, provided that all such research contractors will be supervised by 23andMe and subject to 23andMe’s access rules and guidelines.
  • If you have consented to use of your individual-level data in the Research Portal feature, qualified researchers (who must comply with certain requirements) may access your individual-level Genetic and/or Self-Reported Information for the purpose of scientific research, which could lead to commercial use.
  • We are required to do so by law or we do so in coordination with regulatory authorities (see the section below titled “Information Disclosure Required By Law”).
  • You have provided explicit consent for us to do so.

On a whole I don’t quite feel at ease with there terms of conditions or privacy statements. 23andme is a company and that worries me. If they were a charity or something like that, I would feel a slight bit better. How long will it be till they sell out on there users? You only have to look at what’s happened with Flickr to see the bizarre things that can happen.

So its not the information I’m worried about, its the way its stored and disclosed, now and into the future…