The age of personalized medicine—From patients to consumers: The digital environment, clickwrap contracts, and implications for autonomy

Author: Phillips, Andelka M.

Date: 2019

Publisher: Oxford University Press

Type: Book item

Link to this item using this URL: https://hdl.handle.net/10289/13407

University of Waikato

Abstract

How many online contracts have you entered into this year and how many of those did you actually read? This chapter explores the impact that the designed environment of websites and electronic contracts have on the exercise of individual autonomy in the context of the example of direct-to-consumer genetic tests (DTC). DTC tests for health purposes can be viewed as an example of Personalized Medicine, but as the mode of sale usually lacks the involvement of a physician or genetic counsellor and the industry is largely unregulated, companies often rely on their contracts and privacy policies to govern relationships with consumers. This chapter seeks to shed light on the impact that offering these services online and relying on electronic contracts, which people have grown accustomed to ignoring, has on the exercise of autonomy and an individual’s ability to make an informed choice in this context.

Subjects: direct-to-consumer genetic testing, personal genomics, privacy, secondary use, dark patterns, contract, consent, informed consent

Citation: ["Phillips, A. M. (2019). The age of personalized medicine—From patients to consumers: The digital environment, clickwrap contracts, and implications for autonomy. In A. M. Phillips, T. De Campos, & J. Herring (Eds.), Philosophical Foundations of Medical Law (first). Oxford, UK: Oxford University Press. https://doi.org/10.1093/oso/9780198796558.003.0023"]

Copyright: This is the author's accepted version. © 2019 OUP