[MUSIQUE] [MUSIQUE] Dans la prochaine séquence consacrée à genre, sciences et citoyenneté, aux questions de participation, c'est Bruno Strasser, historien des sciences à l'université de Genève, qui me remplacera et qui conduira un entretien en anglais avec Dana Mahr, qui travaille avec lui comme post-doctorante autour d'un grand projet sur sciences, citoyenneté et participation. >> So Delphine Gardey and Madeleine Akrich started discussing the role of patient organizations and the interplay between lay and expert knowledge in the production of biomedical knowledge. Today, we're going to continue the discussion, just looking at more deeply the role of participation and public participation in the production of biomedical knowledge. First, however, I would like to discuss more broadly how gender plays the role in our studies of science, and especially the biomedical sciences. So that at least three levels where gender is an important perspective. In the previous course, we discussed how biomedical knowledge can be specifically affected by gendered assumptions. And we took the example of the SRY gene, which is only present in male embryos and was long thought to be a single gene determining sex determination. Today I think we're just going to discuss two other elements. The second element, which is just as interesting, is to kind of broaden the perspective and see how gender is also influencing epistemology at large. How what the norms of what counts as reliable evidence are, what counts as a good knowledge and safe knowledge are affected by gendered assumptions. So, one classic example here is the view that the cell, the cell in biology is something directed by your master molecule DNA which directs everything happening in the cell. So this view has been fought by scholars as embodying gendered assumptions about a central authority directing what's happening around it, and that there are alternative ways of describing the cell. For example, as a community of pieces interacting with each other and much more collaborating in the production of the life of a cell if you want. Another key example is Barbara McClintock, the American geneticist, who had a very different view of epistemology of what it means to produce scientific knowledge. Instead of embracing a form of objectivity which meant detachment, which meant control over her object of study, she tried to feel for the organism. And her organism was an interesting organism, it was corn. And she had this strong feeling for corn, she even felt empathy for corn. And she tried to understand what it means to be corn and to develop as corn. And doing so, she discovered extremely important elements in genetics that regulate the life of a corn. And for that, she received the noble prize in the 1980s. So that is just a second example of how even the outside the biology of sex or reproduction, gender might influence the production of biomedical knowledge. The third level at which gender plays a role in the production of biomedical knowledge is perhaps simply the presence or absence of women in the faculty level as researchers. As we know, there's still a minority, or only a minority of women who are holding tenured faculty positions in biomedical research. Now that has probably an influence in the kind of questions that are being asked. And this is precisely why public participation or in large in public participation in biomedical research is seen as a promising way, if not to break the glass ceiling, but at least to work around it to make a more broader set of questions asked by men and women researchers. However, our preliminary studies of public participation in research shows that actually there's still a wide majority of men who are actually participating and asking the questions. However there are great differences among different fields. Most famously in the 1970s, the women's health group, our bodies, our selves, was starting to ask new questions about menstruation, about abortion and about reproduction. Trying to set a new agenda for a biomedical research. And this is still happening probably today as we will talk in a few seconds with Dana Mahr, specialist of Women's Health Movement in the 1970s and 80s. So now I'd like to maybe turn to you. And so Dana Mahr, she is a Post Doc and a specialist in Women's Health Movement, and she's working here in a project which is trying to understand the kind of long duree of public participation in science, specifically in the field of biomedicine. And so could you tell us a little bit more about how gender informs your perspective on participation? >> Thank you, if you have a close historical or sociological look on how diseases get conceptualized, you will see that gender questions are always negotiated between different actors, like medical experts, like scientists, like families, like patients, like illness affiliation groups or patient organizations. And I will give you a short example for this. Until the 1970s and 1980s, chronic inflammatory bowel diseases like Chrohn's Disease or Ulcerative Colitis were framed by experts as psychosomatic conditions. And psychosomatic conditions were seen as typically women's issues. A man having Chrohn's or colitis was unthinkable. Furthermore, having this kind of condition was a prove of personal failure to handle the own life, a bodily compensation seen as a typical female characteristic. To challenge this gendered and sexist view, patient's organizations like the Crohn's and Colitis organization in the UK, comprising more than let's say, 80% by women in this time, actively promoted ultimative models by actively participating in research studies mounting PR operations, etc. In the late 1990s due to this activism and alternative explanatory model, the paradigm emerged. While ending the feminization of inflammatory bowel diseases, entirely will count for this by patient organizations. Since it postulated that's a genetic setup of human bowels, there's almost no gender differences. But more recently and that's a twist, generating of these disease reemerged, thus increasing the evidence that Chron's and other inflammatory bowel diseases are also triggered by imbalances within the microbiome of a person, which can be actively manipulated by dietary, etc. So, now inflammatory bowel diseases can be addressed through health care regimes again. And here's the twist. Since women supposedly are more self-caring, these diseases become once again gendered. If you take a closer look at the images and discourse of direct to consumer genetic testing companies, like uBiome or 23andMe, you will notice that the mainly represent women steering the individual bowel problems to self care. But here, I think is huge difference between these two moments of feminization of the diseases. In the 1970s and 1980s, it was male medical professionals who constructed bowel diseases as femine. Today, it is more like small bio companies doing it with a clear idea of economization of biomedical knowledge and self caring. So here you can find two different stages of intention. >> I think that's a very eliminating example of how the gendering of disease can evolve very rapidly over time depending on the changes and modes of participation or the types of actors which are involved in biomedical research. So with that Dana Mahr, thank you very much for your interaction. >> Thank you for the invitation. >> Thanks. [MUSIC]
