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

Crowden, Andrew and Gildersleeve, Matthew (2022) Neurotechnology, Consent, Place, and the Ethics of Data Science Genomics in the Precision Medicine Clinic. In: Protecting the Mind: Challenges in Law, Neuroprotection, and Neurorights. Ethics of Science and Technology Assessment, 49. Springer, Cham, Switzerland, pp. 113-127. ISBN 9783030940317


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.

Statistics for USQ ePrint 48941
Statistics for this ePrint Item
Item Type: Book Chapter (Commonwealth Reporting Category B)
Refereed: Yes
Item Status: Live Archive
Additional Information: Files associated with this item cannot be displayed due to copyright restrictions.
Faculty/School / Institute/Centre: No Faculty
Faculty/School / Institute/Centre: No Faculty
Date Deposited: 13 Jun 2022 02:30
Last Modified: 15 Jun 2022 02:03
Uncontrolled Keywords: Consent; Ethics; Genomics; Philosophy; Place
Fields of Research (2020): 50 PHILOSOPHY AND RELIGIOUS STUDIES > 5001 Applied ethics > 500103 Ethical use of new technology
Identification Number or DOI:

Actions (login required)

View Item Archive Repository Staff Only