NAME READING (author, page#) AGENDA ITEM (questions, comments, ideas, screeds, manifestos, etc.)
Sonya General question

1- Epstein believes that in the contemporary era of medical world, people with AIDS are not just patients, they are participants.

I would be appreciative if we discuss about the process of this transformation?  do they become political participants or medical participants?

 Because I think, they are hapless patients who push doctors and researchers forward to effective researches and clinical trials ;they cannot become a participant in knowledge making, maybe they have affected decision makings but they are lay people who can never be as expert as a physician or a medical researcher is, expert knowledge does not equal to lay knowledge, so how these patients become participants?

2- what is the role of activists? just complaining of late researches,  the abortiveness of clinical trials and etc? who are activists? can gay activists be a credible representatives of  AIDS patients?

can activists be scientists?physicians? journalists? enthusiastic lay people? STS people? caz I remember Kim told that other universities believe that sts people in RPI are activists ;)

See >>
[Chapter 1] Gallo reminded his readers that "we and others have suggested that specific human T-lymphotropic retroviruses (HTLV) cause AIDS." Gallo's wording was also significant: he had redefined HTLV, from "human T-cell leukemia virus" in 1983, to "human T-lymphotropices " in 1984. While the original name denoted the relation between a single retrovirus and a specific form of cancer, the new name described a family of viruses more vaguely characterized as "T-lymphotropic," that is, having an affinity for T cells. Gallo had reinvented "HTLV" so as to more plausibly encompass his new virus as a relative of HTLV-I and HTLV-II.

This reminds me of the transformation of Euler's theorem identified by Bloor. Just keep redefining the terms to fit. Gallo strikes me as a weasle. But then, perhaps one could see him as the victim of system that would swallow him if he didn't stay relevant:

[Chapter 3] "Scientists researching AIDS are much less inclined to ask scrutinizing questions about the etiology … of AIDS when they have invested huge sums of money on companies that make money on the hypothesis that HIV is the AIDS virus. … Gallo stands to make a lot of money from patent rights on this virus. His entire reputation depends on this virus. If HIV is not the cause of AIDS, there's nothing left for Gallo. If it's not a retrovirus, Gallo would become irrelevant."
Chapter 7
"they were legitimating metaphors that imbued modern scientific institutions with an appearance of the sacred." Isn't metaphor a tell tale sign of social construction? Anything interpreted requires a degree of consensus for understanding.

p. 75

What are some modern-day examples of Koch's postulates?  And to what degree are these interpreted and susceptible to alteration in order to fit a condition? 


What counts as legitimate knowledge? This book shows that apart from the scientific procedure of knowledge production, the acceptance by the public is also a crucial part of the legitimation of knowledge (although this may not be the focus of this book). An implication for STS: the perception and acceptance of knowledge probably deserves the same attention as the knowledge production.
pg. 346

“…as Alberto Melucci has noted, social movements often have a ‘hidden efficacy’ which becomes apparent only over time: by challenging cultural codes and conventions, they suggest to the broader society ‘that alternative frameworks of meaning are possible and that the operational logic of power apparatuses is not the only possible ‘rationality.’” (pg. 346)


Although I really suppose I’m in conversation with Melucci here (I have read his book) as opposed to Epstein…when looking at “knowledge worlds colliding” can we (or should we) ever isolate these "collisions"…that is, if some previous “collision” changed the “rationality” slightly then it bears quite significantly on the case at hand…I suppose I’m just getting Foucaultian here…looking at irreducible (haha) contingencies


Let us go back to ID…some hinted that ID might not have been possible (or as affective) without the STS movements of the 70’s/80’s…so then, I suppose we cannot isolate something like ID…it can only be understood in context with the previous shifts in “rationalities.”

Legacy of AIDS Activism
Only really fragmentary thoughts here:  I was interested in his discussion of cooptation, lay experts vs other activists, etc.  I might add another formal layer as well -- something of a distinction between research clinics and community practice, in part because this seems like a current point of tension in the medical community.  Doctors who are not laymen but not really experts, either.  (And since I've looked at mental health care in the past, the extent to which medicine can attempt to use the tools of activism, the language of patient movements, to persue specific agendas - whether by pharma companies or public health programs. Some of that is, if I'm remembering right, the subject of Epstein's later book.)

Also, his mention of the breast cancer movement, which is sometimes popularly critiqued as too successful in focusing both activist energy and research policy to the exclusion of other conditions. 
Parts One and Two

I'd like to take some time in class to discuss the relationship between the two parts of the book (Causation and Treatment). I'm not altogether clear about my thoughts on the topic. The following ramblings, however, represent my current state of mind:

Acceptance of the viral-hypothesis was a necessary strategy for certain activists to gain the political and scientific credibility needed to intervene effectively in debates about trials and treatment. Those already in political power, for obvious reasons, had no need to agree with the scientific consensus to be involved with policy-making (remember AIDS-dissent Ronald Reagan, who questioned the retro-viral hypothesis in 1985, and so far as I can tell never recanted, although since he said so little about it [he put the silence in “silence equals death” after all] it’s hard to tell what exactly he thought). Epstein points to race/gender/class issues in the ACT UP split, but doesn’t bring out the fact that post-split ACT UP/SF was a major heretical organization as well. I think that this should be a major part of the discussion of victory vs. co-optation (Chapter 8).


Few chronic ailments and diseases enjoy as much exposure, public attention and investment in the scientific community as HIV/AIDS due to the social influence of minority activist groups.  The mixed history and overall success of activism and AIDS awareness in the science seems to suggest a trend towards science activism.  Is this representative of a positive trend or a trend towards a science favoring only the most outspoken social activist groups?

p. 50
AIDS is like unto witch hunts:
"..."...there was reluctance [at the CDC] to believe that intravenous drug users might be wrapped into this epidemic, and the New York physicians also seemed obsessed with the gay angle..." "He says he's not homosexual, but he must be," doctors would confide to one another."
If you have AIDS, you must be gay, despite what you tell researchers.  This is a clear example of scientists and medical professionals taking their bias to work in a particularly obvious and damaging way.
If we have time, as a class, can we possibly explore a spectrum of knowledges, from lay knowledge to expert knowledge (instead of just the binary)?  What does it look like?  Why is it important?  Epstein's comment on Harry Collins makes me think this is important.

I don't really have any questions - just comments. I really liked the book. I thought Epstein's discussion of credibility was interesting. Epstein’s discussion of personal experience is also quite interesting; here Sonnabend is given more credibility because he has personal experience, whereas Duesberg is viewed through a more skeptical lens (p332). This seems opposite of what is usually presented: scientists who have personal experience and personal connections are viewed skeptically because it is believed that they are no longer objective and thus there is potential for their work to be tarnished by their perceived potential bias. I wonder why this exception took place?
Kristin General comment (brought up in class but thought it would be important to keep as class notes)

Epstein's books articulates that that knowledge and power is gained through the struggle for credibility. It seemed that exploration of the role of race as a social factor was lacking as an exploration in the book. He makes a careful reconstruction of how activists, researchers, policy makers, drug companies, and physicians interact to build scientific reality, yet undertones of racial factors especially in the United States seemed are only gently touched upon. Is there discourse in Science and Technology Studies on the role that race plays as a participant in societal constructions?