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This concluding chapter takes stock of the ways in which the bioinformation governance landscape would look different if it were to embrace the picture of narrative identity impacts, interests, and responsibilities characterised and defended in this book. It proposes that information subjects’ identity-related interests in whether and how they encounter information about their bodies, biology, and health should be firmly installed amongst and routinely weighed alongside the other ethical concerns – such as protecting health, privacy, confidentiality, and autonomy. This does not mean that identity interests should invariably prevail over other ethical, practical, or legal considerations but that they should be afforded weight commensurate with the centrality of an inhabitable, embodied self-narrative to a full, flourishing, and practically engaged life. Mindful of what has been said about the ways in which identity impacts vary between information types and individual circumstances and thus the need for responsive rather than rigid disclosure policies and practices, this chapter proposes priorities for reform in five contexts in which ethical and legal debates about information access are currently pressing. These contexts are donor conception, including mitochondrial donation; return of individual research findings to participants; navigating confidentiality and consent in healthcare; direct-to-consumer genomics; and personal health-tracking devices.
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