Saturday, February 7, 2009

Avatar DNA

The IRB's testing module for internet-based research identified concerns that were similar to those in the unit on "Genetic Research in Human Populations."  The most significant challenges for each field emerged from the "problem" of information "that can be stored, transmitted, and analyzed with ease and power."  

Some common questions seem to be: Should information stored for one purpose be repurposed for another?  If the information in these samples holds stigmatizing data, how can that data be protected without blocking the flow of other critical, but unthreatening data?  How can we identify what may be a stigmatizing indicator before it becomes stigmatizing?

It may be worth noting here that genetic testing and internet-based research are not mutually exclusive methodologies.  In fact, the former can more easily reconstitute itself into a field of study (genetics), whereas the latter is still in its nascent days of formal study.  Moreover, with increasing frequency, genetic testing and DNA services are going online and appealing to a mass market.  

Take, for instance, the image above from DNA Portraits, a company that offers its clients "the opportunity to enter the world of unique, personal art."  All one needs do is request the company's "collection kit," send in a swabbing of cheek cells, then choose from "25 custom combinations" to generate one's very own DNA art piece.

If we admit that our presence online leaves behind a kind of DNA, not an equivalent, but certainly a strand of data that can be parsed for a variety of details about our makeup, how many of these strands do we inadvertently leave behind each day?  And if we have not sent away for a "collection kit," who, if anyone, has the right to collect them?

The IRB, in establishing its rules for the ethical treatment of human subjects, has established standards designed to fortify subjects' expectations of privacy, and, at a more fundamental level, their control over their own subjectivity (simply being present in a public space, physical or digital, should not automatically make you subject to federally sanctioned observation, although the "should not" here is continually being eroded).  But the more we swab ourselves, the more difficult it becomes to protect the integrity of our personal information.

Yet, to switch our sympathies from subjects to observers, there seems to be a more pressing concern for online research.  Unlike DNA, the analysis of which can boast 99% reliability, the cells left online are wonderfully prone to manipulation.  Web 2.0 is here, multiplying social exchanges.  But so is the age of the avatar.  What we exchange is not necessarily ourselves.  The traces we leave behind are modified in intricate and often contradictory ways, and with them, this new manner of mediation seems to have developed a natural resistance to standardized testing.

The scientific communities as well as those who govern them face a slippery beast when data, subjects and experiments migrate online.  If virtuality can indeed be regulated, I look forward to logging back in and taking the test.


  1. I want to focus on the last part of your blog dealing with avatars. I’m going to flesh out for myself what you say and then add a thought or two.

    The following excerpt from the movie "Perfect Stranger" is an appropriate start:
    "It starts with a quiet hum an empty screen inviting you
    ‘Come inside’ it says. ‘We’re always open’
    It’s a world in which you think actions have no consequences.
    Where guilt is cloaked in anonymity.
    Where there are no fingerprints
    An invisible universe filled with strangers interconnected online and disconnected in life. It will steal your secrets. Corrupt your dreams and co-opt your identity.
    Because in this world, where you can be:
    anything you want
    anyone you want
    you just might lose sight… of who you are."

    Enter stage right or left (whatever your preference): Avatar - a graphical image that represents a person, as on the Internet.

    Some Research Fundamentals:
    1) Research in the social and behavioural science involves gathering information about INDIVIDUALS - emphasizing that the focus must be ON the individual
    2) The definition of "interventions" in data collection stipulates that it must involve interaction b/n [human] subject and the investigator
    3) The "screening process" requires a human subject submit to a form of "disclosure"

    Internet research within some (if not all) online contexts cannot be classified as being focused on "human subjects" since they are dealing with avatars which negate the ability to prove authenticity. – which is never discussed explicitly..only the reduction of motivation(s) to lie. But how does one determine participant truth and hence research accuracy? The scientific method and research protocols fail us with regards to this before we even begin speaking of the truth/untruth of avatars.

  2. In your entry, you draw a very interesting correlate between genetic and internet research. We're in agreement, you and I, that the privacy concerns are quite real. Also, unlike genetic research, internet responses can be willfully and easily manipulated by the user. At issue, I suspect, is the available means of controlling the "online footprint."

    We're living in the age of Google and Facebook. Background searches are readily available in the form of "search fields" in every home. Further, we can basically post information using another's name.

    Recently, several teachers were fired for inappropriate comments about their schools posted in Facebook. Further, a student was suspended for negative comments about a teacher made online. And, my homeowner's association has a website left from the builders we can't correct for accuracy. These all raise questions of online liability and validity.

    Postings online can be viewed by anyone, anywhere. Private postings, such as those done in several research designs, can possibly be "hacked" or otherwise compromised. And lest we forget, can we as easily document informed consent and probe for understanding when the material is simply "presented" online?

    I agree with you - this is a "slippery beast." The more I think about it, the more concerned I become.

  3. Brilliant comments, Anthony. In continuing with your metaphor and your statement, "But the more we swab ourselves, the more difficult it becomes to protect the integrity of our personal information," I think there is a crucial question about a researcher's potential role as the "swabber." In an effort to save time, money, and resources, it is very common to borrow data--especially in the sciences--from other researchers. The intent of one research project/question may be entirely different than another, but the raw data used can be the same. With this in mind, the swab-to-final-argument process does certainly raise both ethical and reliability questions. Is it fair to use data for entirely new purposes that was collected for something else? Can we use someone's DNA to construct multiple identities? If so, where and how do we draw the line?