ISIS Recoding Life Project

In one of the Commission's public meetings, the bioethicist Jeffrey Kahn spoke about informed consent, and the changes in the biomedical research enviroment since the days of the Belmont Report which codified many of those processes and principles in the 1970s. Kahn addressed a wide range of issues, including the change in social expectations in the U.S. whereby getting into a clinical trial for an experimental drug or treatment had gone from guinea-pig suspicion to the most sought-after, "best" medical care available. His presentation left Stanford geneticist David Cox wanting to ask two related questions.

First, asked Cox, "why do you think it is that we have switched in this format from protecting people to everyone clamoring for the benefits? Where are those benefits and why has that come about? I have my own views but I would be very interested in yours." The second related question, Cox continued, was "if this is more in the context of explaining to people that they are partaking in a risky situation, which I actually think that that is exactly what the process is about, then why would anybody want to do it?" (5)

Kahn answered in terms of historical and social complexity: the 80s and 90s gave us a "mixed up" "cocktail" of AIDS activists demanding the reconfiguration of clinical trials and inclusion in them, women with breast cancer and other conditions similarly demanding greater attention to and direct involvement in research on women's health issues, and other large-scale changes in the culture of biomedical research. As a result, Kahn suggested, experimental biomedical research and its speculative treatments had become not only a normal part of the health care system, but a normal expectation.

Cox agreed with Kahn's narrative, but then added some of his own views as he had promised earlier in the discussion. The geneticist Cox knew his own culture better than the bioethicist Kahn, or simply felt more at liberty to critique it in public:

Scientists like David Cox can help all of us read the margins -- of organisms, of research communities, and of stock markets. He tells a brief story about indirect links, feedback loops, partial or emergent truths, compelling p.r., and other nonlinearities that give rise to raised expectations among all participants in the game - the people taking drugs, the researchers that develop drugs, the people who invest in the corporations that make drugs. I'd call this changed game that Cox describes, the game of speculating on, and within, complex systems. If only because we can't seem to escape these two words, complexity and speculation, at this historical moment. It's in this complex game of speculating on drugs-of-the-future that the need for the frame shift that I spoke of at the beginning of this talk - centralizing an appreciation of our ignorance, nudging our scientific and social optimism more toward the margins -- might be most urgent and necessary.

You certainly don't need me to tell you that this is an exhilirating time in the life sciences - a time of nonlinearites and epigenesis in which the linearities of something like the Central Dogma-DNA codes for RNA codes for protein-would sound like a crude joke, best forgotten, if only it hadn't been so incredibly productive for so many decades. It is a time in which, as Ognjenka Vukmirovic and Shirley Tilghman write in Nature Biotechnology,

It's that ad infinitum part that I find most interesting, and inviting. For the complex, nonlinear games of genomics today, we're going to need equally complex stories and analyses that truly do continue the series, if not ad infinitum, then at least well "outside of biology": networks of genes which make networks of proteins which are channeled through networks of machines which are sold by networks of corporations which are supported by networks of investors with networks of expectations which are fed by the major media networks which will eventually sell those networks of genes. My hope is that opening the reading frames in such a way will keep future Icelands from happening, and help bring the many promises of genomics to fruition.