Coproduction of technology and socio-political orders Coproduction of technology and socio-political orders. Prenatal testing in Belgium and Argentina Catherine FALLON

Presentation Co-productionist approach imported form the STS : useful for policy analysis ? Prenatal surveillance « apparatus » in Belgium and Argentina : a mature policy Co-productionist analysis of NIPT (Non Invasive Prenatal Testing - a gene- based technology) in Belgium Comparative analysis with another case study in Argentina Conclusion

1. Co-productionist approach imported form the STS STS = discipline with a broadly ‘constructivist’ understanding of S&T as a social phenomenon. ANT perspective (Latour) : socio-technical changes are indissoluble elements of the process of construction of the features of contemporary collective social life. Co-production (Jasanoff) : science as a process in constant and indissoluble interaction with political, social and technological change. : S&T makes the ‘reality’ at issue visible and measurable to scientific analysis (and hence to power and control) in a performative way (as Foucault proposition of knowledge and power) “Knowledge and its material embodiments are at once products of social work and constitutive of forms of social life: society cannot function without knowledge any more than knowledge can exist without appropriate social supports” (Jasanoff, Designs on Nature,2005)

How do the natural order and the social order develop together ? S&T modify the social orders while socio-political order shapes the S&T developments Jasanoff analyses the « practices of government » as socio-technical activities affected by the local normative institutions (law) and by the local citizens / consumers demands (private dynamics) with a comparative interpretative methodology to explore the interwoven themes of innovations and politics in the development of hybrid networks (human +non humans) in situated contexts. In line with Foucault “apparatus” : discourse, institutions, regulations, scientific statements; techniques; .. “inscribed in a play of power” and “supported by types of knowledge”. The subject is subjected to discourse and regulation: he can also resist this normative framework in a process of subjectivation How norms are embodied in technical standards and practices; in professional discourses and contributions and in public policies? What is the ST impact on “public reason” ?

2. Prenatal surveillance in Belgium and Argentina (classic) Prenatal screening for fetal diseases is designed to inform parents of the risk of having a child with a serious anomaly (Down Syndrom - T21) . Belgium Argentina Public hospitals Private practice All mothers are tested In case of positive test, an invasive amniosynthesis is used for diagnosis If confirmed, an TOPFA is proposed (at no cost) and organised for 95% of cases If confirmed,… As abortion is NOT legal in this case

Co-productionist analysis of NIPT in Belgium as emerging Users demands The consumers : asked for the availability of the test (once available on Internet) Medical professionals Gynecologists propose the tests to all the women (350 euros) who can afford it Human geneticists are working in university hospitals (genetic counselling and research) Regulatory bodies : - KCE : approved to finance the test at no cost for at risk women on the basis of CBA - Health Council : approved the test & questioned the ethics of choice of the target group - Committee for Human Genomics : propose to organize the tests at no cost in Belgium The Federal Minister decided to make the test available to all women at 8€ Apparatus : Geneticist and Genomic research reinforce their position – center stage. Subjectification : all regnant women are all invited by the state/medical authority to consider the risk level of their situation : their child might not match the ST-norm. Machines bought for university T21 « is » anomality RA CBA In-border genetic data Equality as a political choice

Co-productionist analysis of NIPT in Argentina Public hospitals Private practice Gynecologists remain « risk managers »  only for women at risk Hospital-based funding Women demand the test and pay the test Gynecologists organise the test Foreign laboratories make the test « contre-conduite d’irresponsabilité » Women rights NGOs enter in resistance Women can enter in illegal action At the same time, NGO fight to obtain depenalisation of abortion for all women in the country. NGO inform the women about the possibility for an abortion at home (under medication).

Belgium Argentina Users demand OK  Equality of treatment  More genetic infrastructure in universities (machines, databases) Consumers satisfied at own cost Hospitals support gyneco. as risk managers  No direct link between the professionals and the federal authority Nobody denies the quality of the test: the genetic information is more precise and the test improves the efficacy of the existing device. Pregnant women are all invited by the state/medical authority to consider the risk level of their situation : their child might not match the ST-norm. Hospitals patients are more prone to remain with a « ir-responsable » position In private practice, women take their individual responsibility and enter in resistance Who defines the anomal fetus ? What is « informed consent » ? What is the cost of avoiding false negatives? Is TOPFA a right or not ?

Conclusion Consider materiality; Consider the transformation of knowledge / power nexus in apparatus seriously Consider the transformation of the subjectification processes Consider as well indirect and pervasive cases : we have seen distinctive sets of resource distributions, and variations in opportunity and constrain :   Inequalities in hospital in Argentina Inequality for the access to abortion Whether a particular structure constrains or enables a particular scientific practice and how it does so is thus an empirical question

Thank you for your attention Catherine.FALLON@uliege.be