Deliberation and the Role of Stakeholders as a New Frontier in the Governance of Science: The British Columbia Biobank Deliberation and the DePGx Project

© Springer Science+Business Media Dordrecht 2015
Deborah Mascalzoni (ed.)Ethics, Law and Governance of BiobankingThe International Library of Ethics, Law and Technology1410.1007/978-94-017-9573-9_17

Public Deliberation and the Role of Stakeholders as a New Frontier in the Governance of Science: The British Columbia Biobank Deliberation and the DePGx Project

Claudio Corradetti  and Gillian Bartlett 

European Academy, Bolzano, Italy

McGill University, Montreal, Canada



Claudio Corradetti (Corresponding author)


Gillian Bartlett

This article is the result of a mutual collaboration between the two authors due to a grant obtained from the Canadian Institutes of Health Research. The primary result of this grant, the DePGx Project, consists in a deliberative experiment that has taken place at Montreal, Canada in between the end of May and the beginning of June 2010.

1 Introduction: Deliberation a New Frame of Decision Making in Genomics

With the ever rapid development of scientific and technological research in the 19th century, the power growth of scientific institutions and their specific influence have expanded incredibly due to the results they have achieved in several research areas. Due to the enormous occurrence of scientific discoveries in everyday life, state allocation of public funding has been consequently devoted to the promotion of certain promising patterns of research. The process of control and the setting of the agenda for health policies though has only rarely been established in accordance to shared priorities of public concern. Too often, indeed, governments have subordinated resource allocations to “health technicians” who, in their turn, have prioritized only one narrow perspective over the complexities involved. So far, therefore, the public management of scientific research has been kept isolated from a multiperspective assessment grounded in public understanding. It is believed that the widespread prejudice preventing the involvement of public sectors of society into the decision making processes, consists in an old-fashioned idea of “scientific truth” as “correspondence” which can only provide a form of self-legitimization to science itself. The view according to which scientific research is capable of providing a form of truth “exempted” from competing arguments is not only a naïve view of science, but it is also a misplaced reconstruction of how science proceeds. Indeed, scientific explanatory accuracy of physical phenomena proceeds through an assessment of contrasting empirical counter-evidences in the light of what Popper has presented as the principle of “falsifiability”. The question being referred to here is very complex and indeed, it cannot be adequately addressed at this time. For the present purposes, it suffices to say that Popper’s central tenet for scientific statements claims that systems of statements—namely scientific theories—can be are particularly relevant at suchdefined as scientifically relevant only if they can be falsified on the basis of empirical counter-evidences. This point helps us introduce the reasons in support of a more articulated scheme of what counts as truth in science, as well as to advance a more articulated model on why different stakeholders should be involved in the process of scientific decision-making. The question can be put as following: as scientific truth per se is characterized by competing theories exhibiting a falsifiability status and gaining credibility in accordance to their explicatory force, then, as for the responsibility of which public health policies should be reasonably pursued, different actors must be allowed in order to provide their distinctive perspective. The type of argument proposed makes reference to a sort of transliterated model of scientific truth into the public domain. In other words, a polyarchical model for the governance of science through social legitimization which relies on a structural continuum between scientific truth and its public accountancy is defended here. Since one possible objection is that there is here a conflation between the epistemic and the moral domain, it is important to stress only the structural overlapping and not the substantive one. The implied thesis is that there are interesting—and yet only formal—elements of similarity between scientific truth and public truth, and that the way in which they are connected provides an indication on how they must be understood.1

With this in mind, it is now possible to turn to what are the immediate implications of a frame of socially agreed practices within the domain of genomics and of pharmacogenomics. Three points are particularly relevant at such regard: (1) the establishment of mechanisms of cooperation and trust between science and society (2) the increase of transparency in decision making (3) the legitimization of policy guidelines for scientific enquiry.

As far as the first point is concerned, it is crucial to stress that a coordinated and integrated approach to science and society activates, in its turn, institutional and interpretive mechanisms of co-dependence between scientific governing bodies, public governmental bodies, groups of interest and the citizenship. Furthermore, as far as the second point is concerned, the channeling into public discussion fora of alternative views allows for an organic construction of complex critical arguments that clarify the terms of cooperation for each actor as well as its distinctive contribution. The critical mass resulting from the encroachment of confronting perspectives provokes an institutional setting oriented to a progressive clarification of the reasons leading to the prioritization of a certain health research objective over another. Transparency in decision making is thus achieved on the basis of a convergence of different epistemic frameworks of understanding that force to the institutionalization of institutional and non-institutional channels of discussion in order to achieve “order” within potentially conflicting perspectives/interests. Finally, the third point is concerned with the process of legitimization of public policies due to a democratic and fully transparent process of decision making. In modern democracies, to obtain legitimate policies, means to be publicly accountable and to be able to defend those public reasons that have contributed to certain health policies. The deliberative model here proposed is specifically aimed at obtaining, as an outcome, a certain amount of policy guidelines to be possibly adopted by health state agencies and governments in general.

Let us turn now to the dynamics activated by the process of deliberation. The idea here is that of a limited number of people holding differentiated epistemic backgrounds and gathering under the supervision of a deliberative coordinator. Discussion is conducted on set of predefined questions whose method of selection is based upon an in-depth consideration by the analysis of widely shared ethical concerns bearing public relevance. The detection of relevant topics to discuss will spring from the analysis of experts’ roundtables, consultation with stakeholders and from the evaluation of the research level achieved in pharmacogenomics. What characterizes the type of discussion conducted in deliberative polls is the search for an unanimous agreement on deliberative outcomes. The general orientation of the participants towards a common objective is precisely what differentiates deliberative polls from other sorts of discussion groups. Whereas in the latter there is no need to be oriented towards a common agreed result, in the former, all the discussion is conducted by keeping in mind a reasonable outcome to be shared by each in view of a shareable outcome. At this stage, one might wonder why should there be a specific attention to deliberation as a form of ethical assessment of publicly relevant health issues. The answer to this question lies in the added value that deliberation bears in comparison to other forms of ethical assessment, as well as the functions it plays. First of all, deliberation exhibits an epistemic function, that is, it provides a privileged tool for the exchange of different reasons and the improvement of the quality of the arguments grounding certain outcomes; secondly, by raising the ethical issues involved, deliberation provides a democratic legitimization to pharmacogenetics (as is the example in this case). This is due to the dynamics of its same functioning, that is, to its capacity to be all-inclusive of several perspectives, as well as to be capable of providing a qualitative improvement of the complexities of the rationales involved. Finally, the democratic legitimization of scientific research through deliberation, would allow for both an internal and an external structuring of research policies on the basis of the organizing activities conducted by research institutes and local and national authorities. The functions just introduced apply generally and unconditionally to all deliberative activities, granting certain properties to the outcomes involved.

In the next paragraph, a comparative overview of some crucial qualitative methodological tools will be provided. This will be followed by the evaluation of two already completed deliberative projects on genomics, one of which is the result of the mutual collaboration between the authors (DePGX project). The exigency of providing an alternative deliberative framework relies on the maximization of the epistemological result one wishes to achieve. As it will be made clear at the end of the paper, the proposal advanced here wishes to be mostly inclusive of the epistemological variety of the actors involved as well as to bring close unity to such variety in an homogeneous and coherent deliberative outcome.

2 Comparing Qualitative Tools for Stakeholders’ Involvement into the Management of Science: Focus Groups, Opinion Polls, Citizen Juries and Deliberative Polls

When addressing the issue of scientific governance, it is possible to describe a distinctive number of methods aimed at providing, at different levels, a qualitative assessment of perceptions, attitudes, informed opinions and arguments that stakeholders have in regard to medical research through the analysis of words, text or data that can be observed but not necessarily measured. In general, the objective of qualitative methods is to obtain a complete, detailed description. This differs from quantitative research, where the aim is to classify features, count them and construct statistical models in an attempt to explain what is observed and usually focuses on collecting numerical data that can be measured. Within the realm of qualitative research, the most commonly used tools are generally known by such terms as focus groups, opinion polls, citizen juries and deliberation. We will provide a brief description of these tools in order to provide a comparison for deliberation, which will be addressed in more depth.

Such methods, when compared, represent an ascending degree of complexity with differing modes of ethical rationalization for scientific decision-making. Overall, the tools all fall within the general characteristics of qualitative research. This latter includes a broad spectrum of investigative instruments mostly, but not exclusively, based upon interviews which take into account the quality of the results obtained rather than the quantity of the information collected. For certain theoretical frameworks of qualitative research, the common tool is often a form of interview. Interviews can either be structured, semi-structured or in-depth. Structured interviews are characterized by set responses such as “yes” or “no” to a previously determined set of questions, whereas semi-structured interviews contain structured questions as well as open ended questions where the participants answer the questions using their own words instead of selecting from a set of responses. Finally, in-depth interviews, ask only a very few questions with the aim of evoking a more detailed answer. All such forms involve an interviewer/interviewed relationship that can be very significant for the results obtained.

In contrast, focus groups, citizen juries and deliberative polls minimize this factor. They nevertheless have other constraints or limitations, such as the necessity for representativeness manifested respectively by opinion polls (which have to be indicative of what the majority thinks of an issue) and focus groups (which can but do not have to serve this scope). Furthermore, while focus groups represent a collective enterprise, sometimes made of two divergent groups exchanging information, but not necessarily oriented to achieve a commonly shared outcome (as in the “two-way focus group” where there is a reciprocal check on outcomes and interactions but not a merge of opinions between the groups), citizens juries share with deliberative polls the orientation towards shared recommendations to be given through public hearings. In addition, in citizen juries the criterion of selecting participants does not have necessarily to reflect a specific target group. Selected people are randomly chosen in view of representing the public at large.

This is also appropriate for deliberative polls, where the core part of the process of rationalization through conversational exchange lies in the diversity of the reasons put forth in the public arena of discussion, and not in the representational function exhibited by participants. This point helps to understand, in a more appropriate way, that in deliberative experiments, differences in participants’ background (such as race, religion, age etc.) should be secondary in respect to the anticipated outcome. In other words, the method prevents assumptions created by the participants’ divergent backgrounds from implicitly influencing the outcome of the discussion by requiring participants to explicitly state their arguments and come to a mutual understanding or agreement. Additionally, whereas in some forms of qualitative research such as in certain variants of focus groups, the facilitator not only can influence the participants, but has to do so (as in the “dueling moderator focus group” where two moderators purposely engage in two opposite sides of the discussion), in deliberative polls facilitators are prohibited from doing so.

As mentioned previously, it is important to distinguish between forms of pure communication, such as interviews or focus groups, from those requiring an intentional or deliberate involvement of the participants. On the one hand, the former methods serve a specific functional aim of permitting a de facto condition of the perception of the participants for what is ethically relevant in genetic investigation, whereas deliberative tools are instead oriented to the production of an a perception that is not preconceived but originates from the participants. In these latter cases, an evaluation of contrasting ethical perspectives is sought, so that through discussion a more refined perspective on the ethical problems at stake is obtained. Demographic diversity has been thus conceived in view of such epistemic differentiation, that is, as a classificatory tool for the selection of a diversified ethical approach to the issues at stake.

A critical investigation of the typical results and of the dynamics of deliberation will be explored using the example of biobanking, by considering first the British of Columbia Biobank Deliberation and then the DePGx Project.

3 The Role of Deliberation in the Management of Biobanking: Insights from the British Columbia Biobank Deliberation

The British Columbia Biobank Deliberation represents the first and, so far, the most advanced experiment in biobanking deliberation aimed at involving stakeholders not simply for purposes of consultation, but also as active participants in the design of the policies regulating biobanks.

The most distinctive point of public deliberation is that to move beyond “the mere collection of data about public perceptions and instead lead to informed deliberative input in biobank governance” (Avard et al. 2009, p. 12). For this deliberative polling experiment, 34 people were contacted, from which 27 agreed to participate, 23 registered for the first session and 21 people completed the second weekend session. The criteria of selection were based upon the 2001 Canadian Census and specifically upon a characterization of diversity based on ethnicity, religion, sex and employment. As a result, participants were selected randomly while maintaining a minimum of 2 for each of five different geographical regions. The sample was not aimed at being statistically representative of the province of British Columbia, but at including a differentiated sample of backgrounds and with various levels of knowledge or experience with the subject matter. Whereas in deliberation, diversity of age, background etc. is granted in order to ensure epistemic variety, in the final report of the British Columbia deliberative experiment M. Burgess and K. O’Doherty, assert with a certain approximation, that “[…] since the event could not be politically representative of the provincial population, recruitment should aim for diversity while minimizing selection biases to design the most deliberative and representative event on a ‘small’ scale and with a ‘limited’ budget” (Burgess et al. 2008). This statement is quite misleading since it confuses the reason for selecting epistemically diversified people with the impossibility of representing the provincial population. Based on the deliberative methods, there is no such rationale included in the deliberative principles and strategies. Indeed, as already stated, there is no representational goal to be achieved, but rather an “epistemic clash” among different ethical points of view. From this it follows that the selection of a diversified epistemic background is a precise choice to be made on methodological basis, and not instead a “second best” option to be considered whenever a satisfactory territorial representation cannot be achieved.

Only gold members can continue reading. Log In or Register to continue