Mapping Controversies in Citizen Bioscience

The academic buzzwords “bio-politics” and “citizen bioscience” at MiT7 led me into a discourse about science that was new to me. It came from a specialized cultural studies perspective that some call science studies, and Bruno Latour was an oft-cited source for its theoretical underpinnings. It isn’t the discourse of science journalism or the sociology or history of science, but a postmodern critical conflation of all those perspectives, and more.

“Narrative” – who owns it, who controls it, who disrupts it – was the holy grail of almost every argument at Media in Transition 7. After Marina Levina’s talk on Citizen Bioscience in the Age of New Media, I plunged passionately into a debate that seemed to be a reduction of individual vs. institutional narratives. I was alarmed by the notion that “citizen bioscientists” could conduct genetic research without the human protections oversight of the informed consent and institutional review board (IRB) process. To my surprise, I was defending Institutional Science, at least as far as it embraces the protection of human subjects in research. Even as I took on this role, I remembered something I wrote in the role of a disability rights activist in Not This Pig:

At the intersection of law, medicine, and science, institutions wield great power to shape both the information and the decisions we make in the informed consent process. According to Bruce Jennings, “We must not underestimate the power of science and technology to colonize and dominate the contemporary imagination” [13]. In other words, when we make decisions based on informed consent, especially in circumstances when our autonomy is most vulnerable, the marketplace of ideas may not be as free as it should be. Read more

Since MiT7 I’ve continued to wrestle with conflicting perspectives about human subjects research. I do not think that the reductionist schema of individual vs. institutional science is sufficient for understanding the potential risks of genetic screening and recombinant DNA technology. The schema needs to be expanded to include population perspectives, or what Karla F.C. Holloway calls cultural bioethics. And it needs to be grounded in a historical context that does not ignore the 20th-century legacy of eugenics, the Holocaust, and secret Cold War radiation experiments.

Maybe it’s cognitive dissonance. Maybe I’m working my way toward the process Bruno Latour calls mapping controversies.

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