What role should trust have in biobank research? Is it a scarce resource to be cultivated, or does its moral significance lie elsewhere? How does it relate to the researcher’s individual responsibility? In this thesis I draw four general conclusions. First, trust is still very much present in at least some biobanking settings, notably in Sweden, but possibly also internationally. Second, a morally relevant conception of trust entails that to be trustworthy, researchers must consider the normative expectations that people have of them, and renegotiate expectations that are mistaken. Third, this conception differs from “public trust” assessed through surveys. The main use of the latter is to legitimate policy, not to identify moral duties. Fourth, in spite of ethics review, guidelines and informed consent procedures, ethical issues will always arise during the course of a research project. Researchers can therefore never avoid their individual moral responsibility. Ensuring that one is adequately trusted is one step towards conducting morally acceptable research. Study I indicates that few Swedes refuse storage of samples in healthcare-associated biobanks and their use in research. Study II suggests that people are somewhat more willing to donate samples than surveys indicate, especially when approached face-to-face by health care personnel. Relationships of trust might thus be important in people’s decision-making. Study III investigates trust as a moral concept. The trustee is often in a unique position to determine what the other’s trust amounts to. When it is mistaken, the trustee has an obligation to counteract it, compensate for it, or renegotiate the expectations that cannot be met. In Study IV, I critique the feasibility of guaranteeing the trustworthiness of the research apparatus through formal measures such as ethics review and guidelines. Not only are there limitations of such measures to consider. They also risk blinding researchers to ethical issues that are not covered by the rules, fostering moral complacency, and alienating researchers to ethics.

Dans le champ de la recherche en génomique, comme dans d'autres domaines très informatisés, les bases de données et les biobanques sont organisées en infrastructures. Ce nouveau modèle organisationnel doit permettre de soutenir l'effort technique et collaboratif requis pour traiter des Big Data, c'est-à-dire des jeux de données trop volumineux et complexes pour être traités en utilisant les méthodes classiques. L'établissement de ces nouveaux environnements constitue un véritable défi technique et philosophique. Il requiert, pour être opérationnel, des cadres réglementaires adaptés, ouverts à la fois à l'internationalisation et à des perspectives de long terme, mais certains de ces changements ne sont pas compatibles avec les procédures éthiques courantes, notamment la procédure de consentement éclairé. L'éthique de la recherche en génomique doit donc être repensée. Faut-il puiser dans la technique les nouvelles solutions de gouvernance de la recherche ? Ou bien est-il plus juste de répondre à ces évolutions en analysant les situations de tension morale suscitées par de nouveaux développements et en décidant de les traiter en fonction de ce à quoi nous tenons collectivement ? L'enjeu de ce travail, qui relève d'une approche pragmatiste, consiste à cultiver une attitude réflexive à propos des changements en cours dans la recherche en génomique. Cette tâche suppose d'expliciter le rôle des biobanques et des bases de données dans la production, la validation et la publication de la recherche génomique. Il est également nécessaire de rendre compte des tensions auxquelles le développement de ces dispositifs donne lieu lorsqu'ils sont incompatibles avec les procédures actuelles. On peut alors examiner si les dispositifs tels qu'ils sont conçus sont désirables dans les contextes où ils sont développés, soulignant ainsi la dimension politique de l'éthique de la recherche. Cette thèse repose sur l'analyse de situations concrètes issues de projets de recherche dans lesquels nous avons été impliquée. Nous utilisons aussi plusieurs disciplines étudiant la science telle qu'elle se fait (philosophie, anthropologie, sociologie et histoire). Au cours de cet examen, l'idée régulatrice de personne-membre est proposée, pour favoriser la prise en compte des appartenances sociales et politiques du sujet de l'éthique de la recherche en génomique. / In genomic research, as in other highly computerised scientific fields, databases and biobanks are today (re-)organised into infrastructures. This new organisational model should support the technical and collaborative effort needed to deal with Big Data, that is, data sets that are too large and too complex to be treated with conventional methods. Establishing these new environments is an actual technical challenge that requires, in order to be operational, appropriate regulatory frameworks that are both open to internationalisation and long-term prospects. But some of these changes are not consistent with current ethics procedures, including the informed consent process. The ethics of genomics research must therefore be reconsidered by asking whether it is in technology that we must draw new solutions for the governance of research or whether we must respond to these evolutions by proposing a political treatment to clarify what we value collectively. This work, which is based on a pragmatist approach, intends to cultivate a reflexive attitude on the changes being made in genomic research by describing situations of moral tension. This requires elucidating the role of biobanks and databases in the production, validation and publication of genomic research; accounting for the conflicts of values to which the development of these devices can give rise when they are incompatible with the current procedures and thus to examine whether the devices as conceived are desirable in the contexts where they are developed. This thesis is based on the analysis of concrete situations, resulting from research projects in which we have been involved or from studies of science in practices (philosophy, anthropology, sociology and history). During this examination, the regulatory idea of a person-member is proposed, in order to favor the consideration of the social and political affiliations of the subject of ethics to research in genomics.