Neurotechnology, Consent, Place, and the Ethics of Data Science Genomics in the Precision Medicine Clinic

Abstract

In this chapter we briefly outline key philosophy and bioethics dimensions of a genomics medicine case that begins with typical clinical encounters between a patient and members of a treating team. The case concerns a positive Huntington Disease (HD) diagnosis and the diagnosed person’s response to potential neurotechnology and other interventions. It is of interest because what happens illustrates how consent and a consideration of place can be challenging when clinical genetic medicine, genomics research, data science and neurotechnology intersect within the clinic. First, key factual aspects of the disorder are described, and the case is outlined. The nature of precision medicine in genetics and how patients, clinicians, researchers, scientists, and others are impacted by data science and neurotechnology decisions is explained. Distinct consent-based ethics dimensions are identified, and potential resolution pathways suggested. Doing so also makes it clear that, even when a genetic disorder is a relatively straightforward autosomal dominant monogenic mutation of a single gene as is the case with HD, the practical ethics dimensions can be complex. We argue that a person-centred place-influenced ethics framework can provide an additional way to better understand a situation, help meaningful decision-making, and implement practical person-centred outcomes. We make some practical suggestions about the case and recommend ways to apply our framework to similar situations.

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