Your personal health: The internet and privacy

January 2, 2008

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.

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Posted by Deepak Singh | Filed Under Software & Internet, Your personal health 

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Comments

Viewing 6 Comments

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    I think we need a little reality check. Other than employers and health insurers, I can think of 5 other people who shouldn't be allowed access to someone's genome

    1. Identity Thieves
    2. Criminals
    3. Life Insurers
    4. Potential Mates (although there are certain ethinic groups in the city who have matchmakers) See Gattaca
    5. People looking to make a profit off it and not include me in the financial benefit.

    I am certian there are more, but this is my first 5. Let's take off the rose-colored glasses.

    -Steve
    www.thegenesherpa.blogspot.com
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    Steve

    I am sure anyone can make a long long list. My argument is that anyone who wants to get your information ca, whether its via your social security number, hacking into your online bank account or what have you. It's important for people to know what to watch out for and what the various loopholes are. My argument is that it's better to educate than to legislate and add too much overhead. People who think they have privacy are the ones wearing the rosy glasses. What we need to do is accept the way things are, be aware of all the possibilities and make informed decisions.

    Yes, there are areas where oversight is important, but in most cases issues can be decided by the market. If people like a particular service and they know they are selling their souls, then it's their responsibility.
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    Interesting post Deepak. I also believe that we should all embrace transparency as much as possible.
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    Deepak,
    Ok, fair enough. Buyer Beware. Maybe the free market will create a genome protection service like life-lock....hey wait a second....That sounds like a great idea. Or maybe we can have brokers who will sell you a genome on the black market in order to afford opportunities such as getting into college. As far as I know, that's not covered by GINA. I am all for advancement of science and medicine. And I am a Libertarian sooooooooo. I just think we should help educate all about the good, the bad, and the ugly.
    -Steve
    www.thegenesherpa.blogspot.com
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    Steve

    Won't disagree with you there. My point is that alarmism can be counterproductive when the reality is that people who want to undermine you are going to be able to do it anyway. What's important is letting people know what their options are and where the dangers lie and let them make their own choices.

    Of course, when it comes to health information, the standards are a little higher, esp when it comes to the impact on the quality of healthcare, so some oversight is a good thing, but I always worry about too much oversight coming in the way of creativity and innovation.
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    Any one who ever published even a byte of text on web should know that it is going to stay there, google maintains cache of even websites that are no longer exists, Life science companies are already the most paranoid lots on the planet when it comes to trusting any one with information, we already have a dozen compliance rules for handling healthcare information, I agree with stephen and his list. But am sure going forward life insurance companies will have access to our healthcare information and they will use it to decide the premium payments, I am not so confidant a US court would rule it as discrimination. US and UK insurance companies already does that for car insurance ie a younger person is likely to be asked to pay a higher premium

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