Session 1 Engagements in the health sciences

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.

Reference

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.

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