Remember, your Midterm Exam is on Tuesday, 10/20, on Canvas. It’ll open at 7:00am and close at 11:00pm. You’ll have 75 minutes to complete the exam once you start. Of course, that assumes you start the Exam at least 75 minutes before it closes, so my advice is to do it early. Also, set a reminder for the exam, so you don’t forget to take it. In order to give you more chances to set aside 75 minutes of distraction-free time, you have until Thursday, 10/22, at 11:00pm to complete the Midterm Exam. Everything from the semester is fair game, so, if you’ve done the reading, you’ll be fine.
Chapter 7: “ACTing UP: AIDS Cures and Lay Expertise”
What is medical or scientific expertise? How does one come to possess it? How does it come to be recognized as expertise? How does it relate to medical or scientific authority?
Collins and Pinch tell the story in this chapter of a “lay” or non-expert group of AIDS patients and their advocates who managed to “reframe the scientific conduct of clinical research” and “change the way it was conceived and practised” (197). By learning the language of medicine and combining medical expertise on AIDS with their personal experiences, they created conditions in which the official medical authorities had to listen to them. Collins and Pinch thus argue that non-experts may have expertise to offer the official medical or scientific establishment, but the “crucial issue….is getting that expertise recognized as such” (197).
When is it reasonable to be skeptical of medical authority? What can the non-expert do when she suspects that the official story may be false and/or dangerous? What role does political or social power play when the skeptic wants to challenge the official story?
Collins and Pinch argue that the reason the gay community was so effective in mobilizing and altering the strictures of clinical trials had something to do with their skepticism of the medical establishment and their ability to navigate in the political and medical realms of power. Considering that homosexuality had been labeled as a medical condition for years, the gay community knew that at times it may be reasonable to mistrust the official word of the establishment. So when, contrary to US Secretary Health and Human Services Margaret Heckler’s 1984 promise that a vaccine would be available in two years, no cure seemed on the horizon, AIDS activists were quick to challenge the official story and develop avenues to get sick patients the medicine they needed. That, especially in New York and San Francisco, AIDS advocates included large numbers of well-educated, white, middle-class (i.e. socially powerful) men enabled them to enact change, but such change would not be possible if they had accepted the process of the medical establishment. Their skepticism, and the action it inspired, saved lives.
Yet to recognize their education and social influence, particularly in San Francisco and New York, is not to say that mainstream society, and conservatives in particular, were not virulently homophobic. With AIDS known as “the gay plague,” this is the context in which William F. Buckley proposed that AIDS patients get mandatory tattoos on their upper forearms and buttocks (p. 167). The following clips of news media coverage from the early years of AIDS places this story in its social context and shows how homosexuals were stigmatized in mainstream America.
- Does this footage complicate the presentation in Collins and Pinch of homosexuals as a socially powerful group?
- Video of ACT-UP leader Peter Staley on Crossfire from the mid-1980s
- Legislators Weigh In on Gay Lifestyles
The above video links are for further context and won’t be on the Midterm or Final Exams. Although they don’t capture the entirety of attitudes about AIDS and homosexuality in the early to mid-1980s, they offer a chance to see how mainstream news outlets covered the issues.
Other Questions to Consider
While this story takes place in the late 1980’s, the larger issues of medical (or scientific) expertise and skepticism toward medical (or scientific) authority are relevant to many public debates today.
On what issues do you, or others you know, disagree with the official medical or scientific consensus? Why?
In the recent book, The Patient Will See You Now, Eric Topol argues that in the future, medicine will be democratized, allowing patients to do their own testing and diagnosis through smartphone technology. Would you take advantage of such technology, or prefer the expertise of a trained medical professional? How have you used or do you know how others have used telehealth care service during this pandemic?
Again, the above questions aren’t on any exam, but I want you to be thinking about them, so you can draw connections to current issues, which should help reinforce Collins & Pinch’s discussion.
ACT UP: The Medical Establishment Welcomes the Activists
The second half of the chapter focuses on the radical activist group ACT UP, which was incredibly successful in changing the process of clinical trials in AIDS research. Large, well-organized protests put pressure on the medical establishment, but in private “they were quite prepared to engage with the scientists and argue their case” (186). They attended conferences and consulted with professionals. Their aims included:
- Forcing the FDA to speed up approval of new drugs
- Expanding access to new drugs outside of clinical trials
- Transforming clinical trials to make them “more humane, relevant, and more capable of generating trustworthy conclusions”
The second and third aims diverge from the standard way of doing clinical studies, the normal practice being to restrict access to drugs outside of trials.
Conclusion: The Golem Goes to Work
Technology is an application, a tool to deal with circumstances. We believe technology will advance, and most take that to mean it will get better and solve more problems. But we need to remember that it takes time and can’t always solve the issues to the level(s) we expect. Collins & Pinch are right to argue that we shouldn’t have a model of technology be “perfection against failure with no middle road”; if that’s our model, “perfection will never be attained and ‘failure’ will be the only conclusion left” (p. 203).
Following up on a promise in the first book, this follow-up argues for the importance of its perspective when regarding “matters of public concern” (198). Each chapter, then, relates to debates that we are having today about science and society. Can you relate any of the following conclusions to any specific debates, such as those we have discussed in class today?
The chapter on the Challenger explosion demonstrates that it is unfair to assign blame to individuals when some uncertainties are inevitable, and it reveals how applications of science can be not just simplified but also distorted by the media. Thus we may be skeptical of official media reports on such issues, particularly when we rely on technology as somehow perfect and unassailable.
The chapter on the train and plane crashes, and the analysis of the success of Patriot missiles, shows that “distance lends enchantment,” or “enchantment can only last when we remain at a safe distance in time, space, and understanding, from technology in practice” (199). This is to say that the closer you get to any science or technology in practice, the more you recognize that it is messy with often unclear conclusions–a perspective contrary to popular conceptions of science and technology.
This relates to our sense that quantitative data is always reliable. The chapter on econometric modeling shows that expertise is not in the models themselves, but in the “judgments which emerge from long experience” (199). To make something quantitative does not necessarily make something true or effective. Instead, devoting one’s time to an area–which is what experts do–can make that person’s expert opinion better than one who hasn’t devoted their time to a topic.
The chapter about the origins of oil demonstrates what Collins and Pinch call the “technologist’s regress.” Both wells were drilled to give an unambiguous answer to oil’s origins, and both failed because, as we have discussed, it is difficult to determine what the successful outcome in certain experiments will be. Scientists rely on theory, but theory relies on practical results, leading into new experiments to a cyclical process. Although Gold found oil, he didn’t find enough to be commercially viable; therefore, the search stopped.
Collins and Pinch finally turn to the discussion on dealing with information about an unknown epidemic. They write: “Golem science and technology is a body of expertise, and expertise must be respected. But we should not give unconditional respect before we understand just what the expertise comprises and whether it is relevant. To give unconditional respect is to make science and technology a fetish” (201)
In order not to make science a fetish, we have to have the right expectations of it: “Neither science nor technology,” the authors argue, “are the kind of ‘higher superstitions’, or quasi-religions, that many scientific fundamentalists take them to be” (203)
Rejecting the model of the scientific fundamentalists, Collins and Pinch propose an alternative view. Technology and science, they conclude, is like the work of a cook or gardener, as “an application of expertise in trying circumstances” (204). Technologies are tools. We’d like to think that they always make life easier, but, as we’ve seen, it’s more complicated than simply viewing technological advancement as an inherent progression to perfection.
Besides the Midterm Exam on Tuesday, 10/20, we’ll be moving onto the science fiction section of this course. I’ll have notes up on next Thursday’s page (10/22) for H. G. Wells’s Time Machine. 1895—which you can read online for free.