Biocensorship for the Biocentury?

The freedom to explore one’s own biology, all the way down to the molecular level, should be among the freedoms we hold dear as individuals. I’m agitated that the censorship of personal biological data is being advocated as a reasonable course of action to reign-in the nascent consumer genomics industry. Self-examination should not require permission from any authority. We should protect the autonomy and integrity of individuals.

For most of human history, the ability of an individual to learn about their own body through self-examination was limited to little more than the five senses: sight, touch, hearing, taste, and smell. Modern technological advances have extended these natural abilities dramatically. Devices allow us now to see details about ourselves that were once low resolution, out-of-sight, or even unimaginable. Keychain widgets can dispense data on blood-alcohol levels. Joggers can monitor fluctuations in heart rate plotted against GPS-gathered data about their path, elevation, and pace. Diabetics can obtain instant glucose readings. Video games can track longitudinal BMI scores. Alarm clocks can monitor REM cycles and promise to wake their owners at a time when they are the most well-rested, the least sluggish, and still able to be on-time for the morning appointment.

The ability of individuals to obtain vast quantities of data about their own biology and environments is a new frontier. Most people are hardly aware the frontier exists at all. Only a handful of explorers have set-off into the deep data wilderness. Individuals who have access to biological data about themselves face certain risks. For example, the data might be cause for confusion or lead to actions that are regrettable. These risks are not unique to biological data. All data have the potential to be dangerous to those who choose to consume it. Restricting access to personal biological data under the premise that “data are dangerous” and people need blanket protection from misunderstandings they may encounter is tantamount to censorship.

The only reason more people are not outraged about this new species of censorship — biocensorship — is because the ability of individuals to obtain vast quantities of cheap data about personal biology and their environments is a new phenomenon. The introduction now of gatekeepers to “protect you” from your personal biological data would go largely unnoticed, at least for a few more years. Regulatory oversight of personalized medicine ain’t all bad. But, we should be careful not to hamstring the biocentury with biocensorship and be sure to protect the freedoms of individuals to examine their molecular selves.

See also, posts by Rob Carlson, Daniel MacArthur.

Comments

11 Responses to “Biocensorship for the Biocentury?”

  1. Dan Vorhaus on July 8th, 2008 9:42 pm

    I think you make an excellent point, although perhaps it can be taken a step further? You write:

    “For most of human history, the ability of an individual to learn about their own body through self-examination was limited to little more than the five senses: sight, touch, hearing, taste, and smell.”

    But what about the forms of indirect examination that have allowed individuals - and, in more recent times, medical clinicians researchers - to infer facts and probabilities about our bodies, most notably the examination of familial medical histories. The fact is, we have long possessed the ability to explore and examine our own biology, even down to the level of our genes. The difference today is that only recently have we developed the tools to shine a much more precise and accurate light on ourselves.

    Looking at it from that perspective you have to wonder…if the ability to learn about our genetic or molecular makeup is not a new one why is it only now, when that information is more accurate than ever before, should we suddenly become concerned with its potential for harm?

    - Dan

    ps: if there is seriously a REM-monitoring alarm clock out there, please post a link!

  2. jasonbobe on July 8th, 2008 9:55 pm

    Hi Dan -

    For the REM-monitoring alarm clock, I was thinking of Axon Labs:

    http://www.axonlabs.com/
    http://en.wikipedia.org/wiki/Axon_Labs

    …a company founded by students who were having trouble both waking-up and being alert for early morning college exams. So they founded this company to solve that problem!

    Jason

  3. Dan Vorhaus on July 8th, 2008 10:05 pm

    Axon = very cool. Will be interested in the product launch, particularly whether or not the price point is within my budget.

  4. Steven Murphy MD on July 9th, 2008 12:41 pm

    Jason,
    Excellent post, as always…..
    Unfortunately, I feel the conversation has gotten way too heated, and now everyone is responding with hyperbole.

    I don’t think censorship is the right word. Do you have a right to your cholesterol level? Yes….

    Do you have a right to your blood pressure?
    Yes….

    Do you have a right to your genome?
    Yes….

    Do you have the right to access unregulated analysis of this information?????

    That is debatable..

    No one is looking to censor your access to your genome, just looking to regulate the medical aspects of it…..just like every other part of medicine is regulated…..And I would add, medicine is Heavily Regulated…..I feel that regulation everyday…..

    Let’s be reasonable and not turn this into something it is not…..Regulation of medical aspects of your genome…..Yes

    Censorship……not so much

    -Steve
    http://www.thegenesherpa.blogspot.com

  5. Jason Bobe on July 9th, 2008 4:32 pm

    @Steve said: “No one is looking to censor your access to your genome, just looking to regulate the medical aspects of it”

    I disagree. Forget trying, they already do censor access, at least in NY.

    As was heard at the SACGHS meeting on July 8, the state of New York prohibits residents from obtaining personal genomic data about themselves without authorization from a state-appointed representative, i.e. a physician. Even if the individual seeks this data for non-medical purposes.

    That’s censorship and it concerns me.

  6. ds on July 9th, 2008 5:57 pm

    “Do you have a right to your genome?
    Yes….

    Do you have the right to access unregulated analysis of this information?

    That is debatable.”

    ????

    Of course, I have the right to pay a company to tell me what bases I have at which positions!

    And the company of course also has a right to post links to scientific publications in which disease/eye color etc. associations of these positions are reported!

    I don’t see any need for a physician or the government in this process. :)

  7. Steven Murphy MD on July 10th, 2008 5:44 am

    @Jason
    “Of course, I have the right to pay a company to tell me what bases I have at which positions!”

    I agree with this one…..

    “And the company of course also has a right to post links to scientific publications in which disease/eye color etc. associations of these positions are reported!”

    Posting links and sending you articles is different than interpreting your risk……Besides, what if you don;t understand the studies…..isn’t that what medical journalists do???? Oh wait, they screw it up all the time too…..

    “I don’t see any need for a physician or the government in this process.”

    But the governements Fed/State do….
    So, we have to rectify our positions or vote for someone who believes in open access for everything…..Unfortunately, both candidates support restricting this technology…..
    I can sense your frustration. I feel it too, but not for the same reasons. I am frustrated that physicians haven’t been involved in this discussion. I would have appreciated some other MD voices…..unfortunately, there are very few…

    -Steve
    http://www.thegenesherpa.blogspot.com

  8. ds on July 12th, 2008 1:27 pm

    “Besides, what if you don’t understand the studies…”

    In my own case, since I am a scientist, I understand the studies.

    However, people who do not understand the studies or who want an additional expert opinion will then contact a trusted friend or a trusted organization (maybe yours?).

    I think the role of the government should be restriced to ensuring that the test results are scientifically correct. What happens afterwards with the sequence information is not the government’s business.

  9. Howard Leichter, PhD on July 29th, 2008 1:02 pm

    Hi Jason,

    Just some random observations.

    1. The first question to be asked in this debate is: Who owns your genome? The answer is obvious and should govern any public policy.

    2. The default in the American political system is to turn to regulation as a last possible resort.

    3. For government to intervene there must be a compelling public interest. The emphasis here should be on the word “public”. Unless it can be shown that a large number of people are adversely affected by an individual’s unimpeded access to his or her genome information, there does not appear to me to be a compelling public interest. Government can not and should not protect individuals from their own ignorance or foolishness unless the individual’s behavior causes harm — i.e., negative externalities — to others.

    4. Government does have a responsibility to provide access to information that will help individuals make informed, and prudent, choices. I can read government-required nutrition labels on food products in my supermarket. Government can provide public service announcements and information about what that information means. In the end, however, it is up to me to decide how, if at all, I will use that information. The fact that I may not understand that information is not relevant to public policy making.

    5. In the long term, it is probably best for the federal government to provide guidelines and guidance with regard to access to genome information. However, I see considerable advantage to allowing the states to experiment until there is a national consensus on the proper course of public policy. Virtually every major national social policy (e.g., welfare reform, social security, competency testing in education, etc..) in this country was adopted after, and based upon, state experiments. Justice Louis Brandeis referred to the states as “laboratories of democracy.”

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