This thesis explores the subject positions available to users of genetic tests for bipolar disorder in the United States. In advanced liberal societies, tests for genetic susceptibility to complex disorders may be promoted and used as means of performing responsible citizenship through the consumption of health care services. In the context of mental illness, however, key assumptions about the characteristics of consumers may not be met. The research found that because the category of “potential test user” substantially overlaps with the category of “mental health care user,” both the rationality and autonomy of these individuals is subject to question. Test users are framed in relational terms: as family members, as patients, and as consumers – but the last of these relational frames is considered problematic. Therefore, while the tests are framed as tools for proactive health management, responsibilities surrounding their use are largely allocated to family members and doctors.

This thesis examines the regulation of the direct-to-consumer genetic testing industry through analysis of the industry's use of wrap contracts (clickwrap and browsewrap), A significant portion of the thesis consists of a comparative document review of the publicly available wrap contracts of DTCGT companies provided tests for health purposes. It also considers other regulatory responses to date. Due to the lack of industry specific regulation it argues that the use of wrap contracts can be viewed as a means of industry self-regulation and a form of private legislation. This means that governance is skewed heavily in favour of companies and it creates an imbalance in the respective rights and obligations of the parties - company and consumer - which is likely to result in consumer detriment. It is argued that certain types of terms commonly include in DTCGT contracts, including: unilateral variation clauses; some exclusion clauses; choice of law clauses; indemnity; and consent clauses are likely to be deemed unfair and unenforceable under UK law. It recommends that in the short-term the Competition and Markets Authority should undertake a compliance review of DTCGT contracts in order to improving contracts for consumers. In the long term, companies should also be complying with data protection law, as well as legislation on medical devices and the provisions of the Human Tissue Act and there may be a need for industry specific legislation.

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L’être humain est de plus en plus souvent inscrit dans des contextes où lui est accessible un savoir nouveau sur sa vie biologique (e.g., gènes, épigénome, neurones, microbiote). À portées de mains ou de clics, des médiations toujours plus nombreuses (e.g. tests génétiques prédictifs en matière de santé ; « récréatifs », relatifs à l’« ancestralité biogéographique », microbiote intestinal ou à l’« âge épigénétique » ; applications dites de « self-tracking ») mettent l’usager en relation avec des formats d’information de plus en plus diversifiés (e.g., SNP’s, diagnostics, probabilités exprimées sous forme de pourcentages de développer des maladies ou d’autres conditions : réponses de l’organisme à certains pathogènes et molécules, résistance à certaines pathologie, et d’autres propriétés qui seraient influencées par la génétique, comme la longévité ou les facultés cognitives). La découverte de ces données biologiques éprouve la personne et la confronte à de nouvelles inquiétudes qu’elle doit traverser.Menée sur base de trois terrains situés dans le champ de la santé (consultation médicale, usage du web en matière de santé, et usage d’auto-tests tests génétiques), cette recherche contribue à la compréhension de ce phénomène de société. Elle s’applique en particulier à préciser la variété des façons dont la personne intègre ces données nouvelles qui s’accompagnent d’une prétention à un réalisme fort. Dans certains cas, ces technologies fournissent à l’individu une image objectivante de son « identité ». L’approche préconisée s’articule à un questionnement anthropologique singulier : Comment la personne s’arrange-t-elle de situations dans lesquelles elle est mise en relation non plus seulement avec d’autres humains mais au premier titre avec des données objectivantes relatives à son intériorité biologique ? Cette question anthropologique invite à porter au moins autant d’attention à ce qui nous relie à autrui et à notre environnement (deux questions classiquement situées au cœur du projet de la sociologie), qu’aux façons dont l’humain assure une continuité avec lui- même dans des situations où le vivant pose question. Cette recherche démontre que la conduite effectivement adoptée par les usagers des trois médiations examinées est irréductible à l’attente d’autonomie souvent promue comme prise en charge de sa santé relevant d’un plan d’action orienté vers un but à atteindre. Soutenue par des outils sociologiques qui sous-tendent une conception plurielle du sujet et de l’action, cette recherche attire l’attention sur des dynamiques peu traitées dans les sciences sociales de la santé. L’examen attentif du maintien du sujet mis à l’épreuve de ces nouveaux savoirs jette une lumière nouvelle sur l’habileté de l’humain à évoluer entre une pluralité de positions, de définitions de ce qu’il se passe et/ou de qui il est afin de s’arranger de ces découvertes qui insécurisent son état de sujet. Plutôt que de considérer le caractère ambivalent, équivoque et parfois carrément ambigu de la conduite de l’usager comme un échec de l’analyse, ce travail contribue à une approche de la composition dans le rapport à soi et à autrui. / More than ever before humans have access to new knowledge about their biological life (e.g., genes, biochemical marks influencing phenotypes, neurons, microbiota). This knowledge is progressively transfered out of laboratories and into commercial markets. Then, by means of an ever-increasing number of readily available mediations (e.g. direct-to-consumer (epi)genomic tests (DTC GT), health-related uses of the Internet, direct-to-consumer genomic tests, self-tracking applications on smartphones) layusers are connected to an increasingly diverse array of data (e.g., online diagnostics, genomic predispositions, probabilities, SNP’s). My doctoral thesis develops an investigation of the practices whereby individuals ensure continuity with others/themselves when confronted to new knowledge related to their biology. Knowing the so-called “real” or potential biological endowment of oneself but also of others has tremendous social, political and ethical consequences. These new reflexive technologies grant individuals with an objectifying image of their “identity”. These new objectifying data related to the biological self puts the subject to test. They confront them to inquietudes they have to cope with.Built on three fieldworks located in the field of health (the classic medical examination, health-related information on the Internet, health-related direct-to-consumer genomic tests), this research fosters a better understanding of this social phenomenon. My investigation specifically seeks to clarify the variety of ways that allow individuals to integrate these new data marked with a strong degree of realism. The approach set forth in this research revolves on a specific anthropological question: how human beings find arrangements with situations in which they are not only confronted to others but also with objectifying data related to their biological life? This anthropological problematic invites us to bring at least as much attention to what connects us with others than to the specific ways individuals ensure continuity with themselves in contexts where the “living” raises question. My research demonstrates that the conduct actually adopted by users of the three mediations studied is irreducible to the expected liberal autonomy often promoted in the literature as “management of one’s health”. A careful analysis of the subject’s consistence facing this new knowledge highlights social dynamics that have received little attention in the field of social sciences of health. The fieldworks carried out provide new insights on the human ability to bring together different positions or definitions of what is happening and/or who you are in order to arrange with these discoveries that challenge their subject consistency. Rather than considering the equivocal features and sometimes the outright ambiguity of the conducts as a failure of the analysis, this research effort contributes achieving a better understanding of the pervasiveness of composition in our relationship to our self and the others in social contexts related to biology