Evaluating Challenges to Patient Autonomy in BRCA Gene Testing, Breast Cancer Culture, and Preventative Mastectomy

• Author / Creator

  Paron, Clarisse G

• In this project, I consider ethical issues surrounding genetic screening programs by
  specifically using the trend for women to ask their physician for BRCA1/BRCA2 gene screening
  and then trying to decide what should be done with the information if the test returns positive
  (for example, undergoing a preventative bilateral mastectomy to decrease one’s risk for
  developing breast cancer). I begin my analysis with Beauchamp and Childress’ (2009) principlist
  account and requirements for respecting patient autonomy in bioethical situations. I argue that
  their theory, although it provides realistic and practical guidance for many clinical decisions,
  inadequately addresses two significant challenges that genetic screening tests pose for autonomy.
  The first challenge is illuminated by the feminist relational autonomy framework: social
  context influences patient decision-making through the values and narratives that inform women,
  but also that sociopolitical forces can interfere with the development of a woman’s autonomy. To
  support this challenge, I draw on the prevalent social narratives of pink ribbon culture, genetic
  determinism, and other influential social forces to demonstrate the way in which a woman’s
  social context can encourage her to make certain clinical decisions (such as undergoing the
  genetic test in the first place or undergoing an aggressive preventative surgery to prevent cancer
  development). Moreover, I consider how a woman’s social context and social position influence
  the capacities they need to truly exercise their autonomy and make authentic decisions that align
  with their beliefs and values. I consider the suggestions of various relational autonomy theorists
  regarding macrolevel and microlevel solutions to help patients develop these capacities. In this
  section, I conclude that Beauchamp and Childress’ (2009) theory of autonomy insufficiently
  considers the strong influence of social context on women’s decision-making in the BRCA
  screening and prophylactic mastectomy decisions and argue that patient autonomy should be
  iii
  fostered and not simply respected in situations where there are strong social influences on
  clinical decision-making.
  The second gap in Beauchamp and Childress’ (2009) theory is illuminated by the recent,
  yet extensive, behavioural economics and social psychology research on decision-making biases
  and heuristics. This body of literature suggests a significant challenge to patient autonomy and
  decision-making in general: humans make poor decisions, especially in contexts of high
  uncertainty. The nature of genetic screening is highly probabilistic with a significant margin of
  error. Patients and healthcare professionals both struggle to acknowledge the uncertainty within
  medicine; thus, creating challenges for what should be done with predictive estimations of a
  patient’s risk for developing a disease. I draw on the libertarian paternalism framework for
  autonomy that suggests authorities (for example, medical institutions and physicians) should
  ‘nudge’ patients to choose certain options that align with the patient’s values and preferences.
  The ethics of nudging, especially in the clinical context, is far from settled: nudges are designed
  to engage an individual’s cognitive biases and heuristics in ways that encourage the agent to act
  in a certain way, while maintaining autonomy since nudging is not coercive and can be resisted.
  In this section, I attempt to classify and understand the different kinds of nudging (or “choice
  architecture”) that could be used in this clinical example and evaluate whether or not any
  nudging is permissible to use to help women make better decisions regarding this uncertain,
  probabilistic information.
  Although gene testing has been promoted as a way to empower people to exercise their
  autonomy and have more choice over their health, I believe that genetic testing (especially in
  considering my example of BRCA gene testing) brings these two challenges to autonomy to the
  forefront. Moreover, in light of these two challenges to patient autonomy, I worry whether it is a
  iv
  viable practical or theoretical aim to continue prioritizing our high value of patient autonomy in
  healthcare. If these two challenges pose such a threat to ensuring patient autonomy in clinical
  decision-making, my argument could entail that interference in autonomy through nudging is
  inevitable if we want patients to make good decisions and act in their best interests.

• Subjects / Keywords

  • gene* test*
  • prophylactic mastectomy
  • gene* screen*
  • BRCA
  • nudg*
  • autonomy

• Graduation date

  Fall 2019

• Type of Item

  Thesis

• Degree

  Master of Arts

• DOI

  https://doi.org/10.7939/r3-phn4-dx45

• License

  Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.