20th June, 11.15-12.45, Chair: Inge van der Weijden, Room Polivalente
How scientists doing animal experimentation view the co-evolution between science and society in their field, Fabienne Crettaz Von Roten (Observatoire Science Politique Society, University of Lausanne, Switzerland)
Laboratory animal science is a very relevant domain to study the co-‐evolution between science and society, by reference to Nowotny’s et al. (2001) concept. On one side, the way in which the needs, concerns and aspirations of society affect the directions of scientific research, processes, and institutions. On the other side, the way in which science alter the aspirations, problems, modes of operating in our societies. This cross-‐ fertilizazion has engendered new constraints for scientists doing animal experimentation: in their scientific practice, researchers must undertake a specific training in order to be accredited to practice animal experimentation (European Commission directive 2010/63/UE), follow the 3Rs principles (Russel & Burch, 1959), and devote time to communicate, engage with society.
A few studies have documented separately these changes, but it had not previously been analyzed simultaneously. We propose to remedy this deficiency by a study of scientists doing animal experimentation in Switzerland, an interesting case study. First, science and technology are a key economic issue (a large number of pharmaceutical and biotechnological multinational companies are headquartered, heavy investment in research), the framework for animal welfare and experimentation is very strict (animal laboratory course mandatory since 1999, the 3Rs principles inscribed in the law since 1993). Then, the political system of direct democracy engendered national referendum on animal experimentation in 1985, 1992, and 1993, and cantonal referendum against the construction of animal laboratory (i.e. in Canton Vaud in 2005, Canton Bern in 2015). Swiss scientists engagement towards society own much to the 1998 Gene protection initiative, which could have constraint genetic research (i.e. the initiative has engendered intensive public debate and forced scientists to mobilize and engage towards society).
We designed a study to tackle the following research questions. What is the level of acceptance of each new constraint, i.e. course, 3Rs principles, public engagement? What influence the levels of acceptance (socio-‐demographic, professional factors, etc.)? In particular, is there a difference of acceptance between scientists with different levels of internationalization? What is the relation between acceptance of one constraint and acceptance of another constraint?
The survey was based on a cluster sampling, i.e. three FELASA courses provided early 2016 in Switzerland (two in the German-‐speaking part, and one in the French-‐speaking part). Response rate is 63% (n=117). This presentation aims to present first results of the study and their implication for the co-‐evolution between society and this field of science.
Nowotny, H., Scott, P. & Gibbons, M. (2001). Re-‐thinking science: Knowledge and the public in an age of uncertainty. Cambridge: Polity Press.
Big data ethics and public engagement in biobanking, Aaro Tupasela (Section for Health Services Research, Department of Public Health, University of Copenhagen, Denmark)
Within the European context the Directive on the protection of personal data (Directive 95/46/EC) maintains an important role in current debates relating to the rights and obligations that different stakeholders have in the collection, storage, management and use of various types of personal data. At the same time, the field of biobanking has developed significantly over the past years resulting in an intensification and acceleration in the demand and use of data derived from human tissue samples and their related health and lifestyle information.
This presentation examines governance and public engagement challenges posed by the utilization and translation of biological samples and healthcare information derived from biobank research and genetic databases into globally sustainable and socially robust healthcare products and services. The collection, use and distribution of human tissue samples, often referred to as biobanking or tissue banking, and which include blood and diagnostic tissue samples, from which DNA can be extracted and analyzed, has become a major political preoccupation, not only in national contexts, but also at the transnational level (Gottweis 1998) in that increasingly such sample collections are expected to produce commercial value (Tupasela 2006a).
Sociologically, studies of the biomedical collection and use of human tissue sample collections has developed into its own distinct rubric under both the sociology of science and technology studies (STS) and medical sociology as well, which have sought to examine the different ways in which bodies are being commodified and sourced (Schepher-Hughes and Wacquant 2002) in what Waldby (2002) has termed tissue economies. These approaches have provided important extensions to studies of gifts as a central component of exchange (Mauss 2004), materialist analysis of production and capital accumulation (see Sunder Rajan 2006; Marx 1977), as well as providing new insights into the motivations and concerns of donors in participating in research. In addition, the rapid development and expansion of biobanking activities has also given rise to a growing literature on the sustainability of these activities (Albert et al. 2014; Parry-Jones 2014; Watson et al. 2014; Vaught et al. 2010).
Biobanking and their related big data sharing infrastructures pose new ethical and legal dilemmas as to the interpretations we afford to the collection, processing and management of personal data within medical research. Biobanking activities are creating new possibilities to study and understand disease in humans and population in general. With the increase in what Hoeyer (2016) has termed intensified data sourcing, biobanks are expected to engage increasingly with the surrounding society and public from which they are sourcing samples and data. Medical researchers have traditionally engaged with patient populations, but with the proliferation of data sourcing activities, the demands set upon them are much broader. Sociologically the study of tissue and data procurement has been understood through notions such as tissue economies (Waldby, 2002), where human material and data circulate and are exchanged between various actors.
Scientific or expert knowledge and the everyday life experiences of BRCA mutation carriers, Annet Wauters (Life Sciences and Society Lab – Centrum voor Sociologisch Onderzoek, Belgium)
In the beginning of the 1990s two genes (BRCA1 and BRCA2) associated with hereditary breast and ovarian cancer were detected. Predictive genetic tests are available to women and men who have a strong family history of cancer. If a women’s predictive genetic test result is positive it means that she has up to 80% chance to suffer from breast cancer and around 40% chance to face ovarian cancer. Male BRCA mutation carriers have a higher than average risk to have cancers, such as breast or prostate cancer. However, in contrast to female BRCA mutation carriers their overall chance to develop cancer is lower. Both men and women can pass on a BRCA mutation to offspring. Each child of an ‘affected’ parent has a 50% chance of inheriting the faulty copy of the gene. The foregoing is considered to be the scientific or expert knowledge on this specific genetic mutation.
The aim of the present study was to explore the way in which BRCA1 or BRCA2 mutation carriers interpret, translate and engage with this scientific or expert knowledge in their everyday life. It is often suggested that there is a misfit or gap between scientific knowledge and the public understanding of it. Semi-structured interviews were conducted with 25 carriers of a BRCA1 or BRCA2 mutation, recruited through a Flemish BRCA self-help group.
First, the interviews show that participants give their own meaning to the genetic mutation they carry. Some participants assess their chances of being a carrier in light of their own experiences and idea of transmitting a characteristic from parents to children. For example, a participant stated “My father is a carrier and I look just like him so I was not surprised when the geneticist said I had it (the genetic mutation).” Another participant, who lost her mother to cancer, referred to a gut feeling. “I have always believed that I would suffer from cancer one day. I don’t know why but I think it’s because of my mother. She always compared herself with her aunt who suffered from breast cancer so I made the same connection between my mother’s disease and my risk.” In general, these interviews show a considerable misfit between the scientific or expert knowledge and the participants’ understanding of it. This insight is interesting and relevant because participants often based their actions on their own perceptions. For example, it influences the decision to take preventive measures or not. Mutation carriers who never saw close relatives suffer from cancer perceived their risk as lower than participants who lost a close relative to cancer. In addition, they seem less likely than others to take preventive measures, such as a mastectomy. A last finding of this study is that interviewees were willing to engage with this scientific knowledge. The majority attended a conference with experts that was organised by the Flemish self-help group. In addition, some of them already participated in several scientific studies.