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.