As announced today in Technology Review the trend of social networks now applies in the fields of genetic science. A new service is currently online, where you can compare your DNA with that of family and friends.
We are witnessing a boom in the field of social networks, which now expands to medical fields, where privacy is of utmost importance. My concern is not if these services actually protect their customers, but if customers really realize where they are getting into.
23andMe
The service is called 23andMe and is
a web-based service that helps you read and understand your DNA. After providing a saliva sample using an at-home kit, you can use our interactive tools to shed new light on your distant ancestors, your close family and most of all, yourself.
All they require from you is a sample of your spit and 999$. Then, they will gather all sorts of medical and genetical information and send you a thorough analysis. Purpose of this social network is not only to answer the question “where do I come from?” but also “how do I compare to other people?” Apart from that, as Technology Review notes
23andMe offers information about an individual’s disease risk. But it has also opted to emphasize more entertaining approaches to personal genomics, including using colorful visualization tools to look at a subject’s ancestry and compare it with that of celebrities from Jesse James to Benjamin Franklin and Bono. Now, to capitalize on the boom in social networking, the company will launch a genome-sharing tool that allows people to compare their genome with those of family members, friends, and even strangers who have offered up their DNA data.
It all sounds fun, but a person’s medical history is very thin ice and I wonder if potential users come to realize that.
23andMe’s Privacy Statement
The Privacy Statement of 23andMe is very clear and covers several issues to protect its users.
- they can choose if they want to share their information,
- the information collected are non-personal used for research and never released outside the company without the user’s consent
- users can delete their account anytime, which is also deleted from the company’s database.
It is obvious, that 23andMe takes privacy very seriously - and it should. Users are protected in multiple levels and given a variety of choices.
But one of the main reasons to join 23andMe is the community driven system. Users will likely want to compare information, they will want to see if they have the same genes as Gandhi; and that’s where the real privacy issues emerge.
Privacy in Social Networks; more important than ever
Until now, participators in most social networks were sharing information, of minimal importance: their favourite links, their hobbies, their bio or the number of their friends. Of course these are also subjects, that should be carefully shared, but no big harm can be done.
But with services like 23andMe, we are seeing a transformation in social networks and the privacy issues, that emerge.
Social networking is mostly fun and play, but when it comes to sharing information of your own DNA, things become much more serious. I’m not going to list the problems of publicly showing your medical history/future, these are obvious.
But users of social networks, should start thinking with extreme caution, which networks they should join. The fun and joy remains in social networking, but the hazards seem to increase.
Would you share information about your genealogical tree and your medical history with the wide public of the social web?






Paul M. Banas responded on 28 Mar 2008 at 3:06 am #
Is this another frontier for privacy? I agree with you that most of the stuff shared over social networks is fairly harmless. But your DNA?
What if you had a marker for some genetic disease, and based upon a quick internet search, a health insurer would deny you insurance based upon what they consider a pre-existing condition? Granted, this is more of an issue in the bizarre free-market system that is US healthcare. But still, I can’t imagine this is something that people would want to share over the internet.
robojiannis responded on 29 Mar 2008 at 11:37 am #
I also find this social network a bit too much, but I’m afraid if the price was lower many people would join in…
Brogan Keane responded on 11 Apr 2008 at 2:00 am #
The interesting thing about Facebook’s current privacy debate is the majority of those who are offended happen to be in the 30+ demographic.
The majority of teens can care less about their privacy on social networks. Adult segment is by nature and habit much more in tune with their identity both online and offline.
If your interested I’ve written a post at fuegonation.com/blog addressing the interesting dilemma of guarding adult privacy on social networks.
Hope this helps!
Best,
Brogan
robojiannis responded on 11 Apr 2008 at 1:57 pm #
Your post on Facebook privacy is indeed very interesting post Brogan. I like how you separate active and non-active users and protect their privacy.
I subscribed to your feed, your blog discusses issues I really like