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

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Part of the Ethics of Science and Technology Assessment book series (ETHICSSCI,volume 49)

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.

Keywords

  • Consent
  • Ethics
  • Genomics
  • Philosophy
  • Place

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Notes

  1. 1.

    An original case about a Mr. H was developed for Fact Sheet 19 on Ethical Issues in Genetics and Genomics by the NSW Government Centre for Genetics Education (recently updated in March 2021). Mr. H has been used widely across many settings. We have been using Mr. H and other similar cases in different guises for many years in educational settings. K is a similar case to Mr. H, but we have added complexity, including identity as an Australian Aboriginal (Pitjantjatjara), and a more detailed story so as to better capture the relationships between precision medicine, data, research, genetics, genomics and place.

  2. 2.

    Where understanding* refers to understanding of disclosed information and abilities** refer to four abilities or functional capacities: the ability to understand relevant information; ability to appreciate a situation and its likely consequences; ability to manipulate information i.e., ability to reason; and ability to communicate a choice (Crowden 1993, 66; Appelbaum and Grisso 2001; Greenwood and Crowden 2021).

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Correspondence to Andrew Crowden .

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Crowden, A., Gildersleeve, M. (2022). Neurotechnology, Consent, Place, and the Ethics of Data Science Genomics in the Precision Medicine Clinic. In: López-Silva, P., Valera, L. (eds) Protecting the Mind. Ethics of Science and Technology Assessment, vol 49. Springer, Cham. https://doi.org/10.1007/978-3-030-94032-4_10

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