Earlier today, Paul Kedrosky pointed me an interesting post entitled Searching for a little privacy. In the piece the authors talk about the evolution of privacy or lack thereof in recent years, going so far as to say that “the forfeiture of privacy is fundamental to the success of Web 2.0″.
Lets take this thought to another area, consumer genomics. In a way, advances in microarray technology and the upcoming advent of cheap whole genome sequencing can be likened to some of the factors that made web 2.0 possible; cheap, ubiquitous* broadband and rapidly falling storage costs and computing costs. Of course without the web where it is today, consumer genomics would not exist. So we have the same situation and playing field that the web 2.0 crowd plays in, plus many people curious about their genetic makeup and the implications it might have for their health or lineage. Let us assume that testing costs continue to fall and that a sizeable chunk of people can sign up for one or more genomics services. Let us also assume that without the web there is no market for consumer genomics.
Which brings us back to privacy. If we can make some analogies between web 2.0 and consumer genomics, can we extend those ideas to privacy? The answer is a little complex. Looking at social network-oriented healthcare sites like iMedix or Trusera, we are already revealing a little bit about our interests just on the basis of our questions and search history. 23andme has not been shy about its ambitions to develop a social network around genotyopes, and has also said that it is interested in sharing data with research institutes and companies. So where does this leave us?
IMO, privacy is a delusion in many ways (seems to be a hot topic on Twitter as we speak). The government knows too much about you anyway, but we are always eager to hold on to our thoughts (or to the illusion that we are doing so), and rightfully so, because it is our right to keep our interests to ourselves. However, the moment you leave your footprint online, you are giving away some of your privacy. the moment you sign up for a genomic service, you are giving away some of your privacy. The question we need to answer is a simple one in a way. Is the benefit we get from being online, or getting yourself genotyped, worth the loss of privacy? If we can answer that question, it becomes a decision we have to make as individuals. As Nick Carr writes in the Big Switch
The spider’s web is made to measure, and we’re not unhappy inside it
I strongly oppose genotype etc data being used to deny someone healthcare or employment, but other than that I would rather that people allow technology to take its own course and let the market decide the parameters and limits (Facebook Beacon is a good example). While our systems of targeting information today are still imperfect, some day we will actually benefit greatly from the ability of machines to recognize our needs or interests, or health situation. Yes, marketing is a big part of it, but that’s not necessarily a wrong thing.
Perhaps this is my inner libertarian speaking out, but I always cringe when I hear privacy advocates raise their concerns. Not about the concerns per sé, but how they are presented. The role of privacy advocates, IMO, should be to make consumers aware of what they’re giving up and then allow them to make their choices. For consumer genomics, the level of education required is very high, so it’s going to be interesting to see which way the privacy winds end up blowing.
Technorati Tags: Personal Genomics, Web 2.0, Privacy
Your personal health: The internet and privacy
Earlier today, Paul Kedrosky pointed me an interesting post entitled Searching for a little privacy. In the piece the authors talk about the evolution of privacy or lack thereof in recent years, going so far as to say that “the forfeiture of privacy is fundamental to the success of Web 2.0″.
Lets take this thought to another area, consumer genomics. In a way, advances in microarray technology and the upcoming advent of cheap whole genome sequencing can be likened to some of the factors that made web 2.0 possible; cheap, ubiquitous* broadband and rapidly falling storage costs and computing costs. Of course without the web where it is today, consumer genomics would not exist. So we have the same situation and playing field that the web 2.0 crowd plays in, plus many people curious about their genetic makeup and the implications it might have for their health or lineage. Let us assume that testing costs continue to fall and that a sizeable chunk of people can sign up for one or more genomics services. Let us also assume that without the web there is no market for consumer genomics.
Which brings us back to privacy. If we can make some analogies between web 2.0 and consumer genomics, can we extend those ideas to privacy? The answer is a little complex. Looking at social network-oriented healthcare sites like iMedix or Trusera, we are already revealing a little bit about our interests just on the basis of our questions and search history. 23andme has not been shy about its ambitions to develop a social network around genotyopes, and has also said that it is interested in sharing data with research institutes and companies. So where does this leave us?
IMO, privacy is a delusion in many ways (seems to be a hot topic on Twitter as we speak). The government knows too much about you anyway, but we are always eager to hold on to our thoughts (or to the illusion that we are doing so), and rightfully so, because it is our right to keep our interests to ourselves. However, the moment you leave your footprint online, you are giving away some of your privacy. the moment you sign up for a genomic service, you are giving away some of your privacy. The question we need to answer is a simple one in a way. Is the benefit we get from being online, or getting yourself genotyped, worth the loss of privacy? If we can answer that question, it becomes a decision we have to make as individuals. As Nick Carr writes in the Big Switch
I strongly oppose genotype etc data being used to deny someone healthcare or employment, but other than that I would rather that people allow technology to take its own course and let the market decide the parameters and limits (Facebook Beacon is a good example). While our systems of targeting information today are still imperfect, some day we will actually benefit greatly from the ability of machines to recognize our needs or interests, or health situation. Yes, marketing is a big part of it, but that’s not necessarily a wrong thing.
Perhaps this is my inner libertarian speaking out, but I always cringe when I hear privacy advocates raise their concerns. Not about the concerns per sé, but how they are presented. The role of privacy advocates, IMO, should be to make consumers aware of what they’re giving up and then allow them to make their choices. For consumer genomics, the level of education required is very high, so it’s going to be interesting to see which way the privacy winds end up blowing.
Technorati Tags: Personal Genomics, Web 2.0, Privacy