Editing Engagement: Visions of Science, Democracy, and Responsibility in Gene Editing Discourse

161628-Thumbnail Image.png
Description
This dissertation investigates how ideas of the right relationships among science, the public, and collective decision-making about science and technology come to be envisioned in constructions of public engagement. In particular, it explores how public engagement has come to be

This dissertation investigates how ideas of the right relationships among science, the public, and collective decision-making about science and technology come to be envisioned in constructions of public engagement. In particular, it explores how public engagement has come to be constructed in discourse around gene editing to better understand how it holds together with visions for good, democratic governance of those technologies and with what effects. Using a conceptual idiom of the co-production of science and the social order, I investigate the mutual formation of scientific expertise, responsibility, and democracy through constructions of public engagement. I begin by tracing dominant historical narratives of contemporary public engagement as a continuation of public understanding of science’s projects of social ordering for democratic society. I then analyze collections of prominent expert meetings, publications, discussions, and interventions about development, governance, and societal implications human heritable germline gene editing and gene drives that developed in tandem with commitments to public engagement around those technologies. Synthesizing the evidence from across gene editing discourse, I offer a constructive critique of constructions of public engagement as expressions and evidence of scientific responsibility as ultimately reasserting and reinforcing of scientific experts' authority in gene editing decision-making, despite intentions for public engagement to extend decision-making participation and power to publics. Such constructions of public engagement go unrecognized in gene editing discourse and thereby subtly reinforce broader visions of scientific expertise as essential to good governance by underwriting the legitimacy and authority of scientific experts to act on behalf of public interests. I further argue that the reinforcement of scientific expert authority in gene editing discourse through public engagement also centers scientific experts in a sociotechnical imaginary that I call “not for science alone.” This sociotechnical imaginary envisions scientific experts as guardians and guarantors of good, democratic governance. I then propose a possible alternatives to public engagement alone to improve gene editing governance by orienting discourse around notions of public accountability for potential shared benefits and collective harms of gene editing.
Date Created
2021
Agent

THE ETHICAL AND ECONOMICAL IMPLICATIONS OF HUMAN GENETIC ENGINEERING

131109-Thumbnail Image.png
Description
When an individual is conceived there is a metaphorical roll of the dice. A game of chance is played with their genetics to which they cannot consent. Unlucky players could have inherited mild conditions such as chronic allergies to terrible

When an individual is conceived there is a metaphorical roll of the dice. A game of chance is played with their genetics to which they cannot consent. Unlucky players could have inherited mild conditions such as chronic allergies to terrible diseases such as Cystic Fibrosis or Tay-Sachs. Controlling the genetics of an individual through the use of gene editing technology could be the key to ending this cycle of genetic diseases. Once detrimental diseases are now being cured through direct applications of genetic engineering. Even as we see the uses of genetic engineering technologies change the world, the more “sci-fi” applications have yet to be fully realized or explored. Editing hereditary genes before birth may have the ability to eliminate diseases from entire genetic lines, reduce the possibility for certain cancers and diseases, and perhaps even modify phenotypes in humans to create enhanced humans. Although this scientific field shows promise, it does have its reservations. Like any other scientific field, its ability to benefit humanity depends on its use.
Date Created
2020-05
Agent

Medicine Before the Flexner Report: How Sects-y is too Sects-y?

134267-Thumbnail Image.png
Description
While the transition from sectarian to allopathic medicine was almost entirely beneficial due to our perceived value in the type of evidence and transparency that science provides, key values within sectarian practice were lost in this transition. Attention to these

While the transition from sectarian to allopathic medicine was almost entirely beneficial due to our perceived value in the type of evidence and transparency that science provides, key values within sectarian practice were lost in this transition. Attention to these values helps us better understand the role and treatment of patients in modern medicine. Modern scientific physicians have proven the inefficacy of sectarian treatments by scientific practices, but the efficacy of exact sectarian remedies may not have bearing on the importance of sectarian values. These values were: medical simplicity, harmlessness in treatment, independence from physicians and accessibility of treatment. A more in-depth analysis of sectarian values allows us to understand that while the values of allopathic medicine have become ubiquitous, it has not always been that way. It is time to consider the validity in the sectarian values we have abandoned; this analysis was one of many on medicine's imminent developmental horizon. This realization allows us to call into question the importance of our current practicing values, and the necessity that they continue to stand alone.
Date Created
2017-05
Agent