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…



Author: Ianforrester

Senior firestarter at BBC R&D, emergent technology expert and serial social geek event organiser.