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This chapter explores the preceding theory-based propositions, concerning the narrative roles of personal bioinformation, in light of people’s attitudes to and experiences of encountering three categories of bioinformation about themselves, as reported by empirical studies. These three categories are: information revealing conception using donor gametes, results from genetic tests indicating disease susceptibility, and findings from mental health applications of neuroimaging. These findings help illustrate the theory-based claims presented in Chapter 4 while also sense-testing and refining these claims with the benefit of insights into information subjects’ lived experiences. This chapter first outlines a sample of relevant findings, casting the net wider than those that explicitly frame subjects’ experiences in terms of identity. It then analyses these findings through the lens of embodied and relational narrative self-constitution, highlighting the range of positive and detrimental impacts that bioinformation can have on recipients’ identity narratives. These impacts include playing enabling, explanatory, practical, revisionary, and restrictive roles. The chapter concludes by identifying common and divergent themes across the three examples. This equips us better to understand diversity amongst recipients’ reactions to different information and also to extrapolate beyond specific observations relating to the three illustrative examples.
Increasing quantities of information about our health, bodies, and biological relationships are being generated by health technologies, research, and surveillance. This escalation presents challenges to us all when it comes to deciding how to manage this information and what should be disclosed to the very people it describes. This book establishes the ethical imperative to take seriously the potential impacts on our identities of encountering bioinformation about ourselves. Emily Postan argues that identity interests in accessing personal bioinformation are currently under-protected in law and often linked to problematic bio-essentialist assumptions. Drawing on a picture of identity constructed through embodied self-narratives, and examples of people's encounters with diverse kinds of information, Postan addresses these gaps. This book provides a robust account of the source, scope, and ethical significance of our identity-related interests in accessing – and not accessing – bioinformation about ourselves, and the need for disclosure practices to respond appropriately. This title is also available as Open Access on Cambridge Core.
A small proportion of malignancies have a clear genetic aetiology resulting from mutations in genes inherited usually as an autosomal dominant trait. Risk assessment and genetic counselling around genetic testing and reproductive decision-making should be undertaken in a regional genetic service. If a mutation is identified within an individual, it should be confirmed in another affected member of the family, if possible. A predictive genetic test is then available for unaffected adult members of the family. Adoption or conception using donor gametes may be alternatives for families with genetic conditions who wish to avoid prenatal diagnosis. The issue of the appropriateness of prenatal diagnosis and of preimplantation genetic diagnosis (PGD) for inherited conditions with an onset in adulthood is controversial. PGD may be more acceptable than prenatal diagnosis as it obviates the need for termination of an affected pregnancy.
Drawing on previous research on geneticization and the clinical uptake of pharmacogenetics, this article argues for the use of the concept of clinical usefulness, in preference to the idea of clinical resistance to such testing. A general framework for clinical usefulness is sketched out, looking at how a number of features (clinicians’ knowledge, the differing interests of clinicians and researchers, how context influences the value of tests’ accuracy, the economic aspects of such tests and general cultural aspects of the clinic) influence how ‘useful’ a genetic or pharmacogenetic test will be seen to be by clinicians.
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