skip to main content
US FlagAn official website of the United States government
dot gov icon
Official websites use .gov
A .gov website belongs to an official government organization in the United States.
https lock icon
Secure .gov websites use HTTPS
A lock ( lock ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites.


Title: The Heart of the Matter: Patient Autonomy as a Model for the Wellbeing of Technology Users
We draw on concepts in medical ethics to consider how computer science, and AI in particular, can develop critical tools for thinking concretely about technology's impact on the wellbeing of the people who use it. We focus on patient autonomy---the ability to set the terms of one’s encounter with medicine---and on the mediating concepts of informed consent and decisional capacity, which enable doctors to honor patients' autonomy in messy and non-ideal circumstances. This comparative study is organized around a fictional case study of a heart patient with cardiac implants. Using this case study, we identify points of overlap and of difference between medical ethics and technology ethics, and leverage a discussion of that intertwined scenario to offer initial practical suggestions about how we can adapt the concepts of decisional capacity and informed consent to the discussion of technology design.  more » « less
Award ID(s):
1646887
PAR ID:
10051354
Author(s) / Creator(s):
; ; ;
Date Published:
Journal Name:
AAAI Spring Symposium 2018
Format(s):
Medium: X
Sponsoring Org:
National Science Foundation
More Like this
  1. Adolescence is a time when patients are approaching autonomy, both developmentally and legally. Yet they are still minors and are likely to encounter contradictions between situations in which they are treated as children and ones in which they are treated as adults. Being able to access their medical information may enable adolescents to take on a participatory role in their health care. However, federal policy, state law, and community norms are not consistent regarding adolescent healthcare and privacy. For example, in some regions and under some circumstances, adolescents may have consent and privacy rights similar to those of adults, with the right to make some, or all, of their own sensitive medical decisions privately. In other cases, parental notification is the norm, or guidance is unclear or lacking. In the absence of national guidelines, medical centers encounter serious challenges when developing policies about adolescent access to medical records via patient portals. The American Academy of Pediatrics has made recommendations, but these are not binding. To explore diversity in adolescent privacy policies and identify common approaches, we are conducting a qualitative study with key informants from different types of medical organizations in different regions of the country. The main objective is to identify diversity in adolescent privacy features within the patient portal. Another objective is to enumerate the factors involved in making portal access decisions. A third objective is to identify the potential need for more formalized guidance and standards on privacy features within the patient portal 
    more » « less
  2. Abstract This case study describes an experimental initiative at James Madison University funded by a National Science Foundation grant in Fall 2021 that aimed to support interdisciplinary collaborative pedagogical development related to Science, Technology, and Society (STS) with a particular focus on ethics and justice. The case study argues that creating infrastructure to cultivate and sustain small teaching communities of practice that include faculty from humanities, social sciences, and STEM fields, can support the challenging and necessary work of developing integrated STS-informed pedagogies across the curriculum. A flexible framework is examined through multiple lenses, including perspectives from each faculty participant, representing teaching departments of Biology, World Languages & Cultures, Integrated Science and Technology/Biotechnology, Justice Studies/Disability Studies, and Integrated Science and Technology/Public Interest Technology and Science. Authors provide key insights about what enables and sustains an interdisciplinary community of practice. 
    more » « less
  3. Robots have great potential to support people with dementia (PwD) and their caregivers. They can provide support for daily living tasks, conduct household chores, provide companionship, and deliver cognitive stimulation and training. Personalizing these robots to an individual’s abilities and preferences can help enhance the quality of support they provide, increase their usability and acceptability, and alleviate caregiver burden. However, personalization can also introduce many risks, including risks to the safety and autonomy of PwD, the potential to exacerbate social isolation, and risks of being taken advantage of due to dark patterns in robot design. In this article, we weigh the risks and benefits by drawing on empirical data garnered from the existing ecosystem of robots used for dementia caregiving. We also explore ethical considerations for developing personalized cognitively assistive robots for PwD, including how a robot can practice beneficence to PwD, where responsibility falls when harm to a PwD occurs because of a robot, and how a robot can acquire informed consent from a PwD. We propose key technical and policy concepts to help robot designers, lawmakers, and others to develop personalized robots that protect users from unintended consequences, particularly for people with cognitive impairments. 
    more » « less
  4. Robots have great potential to support people with dementia (PwD) and their caregivers. They can provide support for daily living tasks, conduct household chores, provide companionship, and deliver cognitive stimulation and training. Personalizing these robots to an individual’s abilities and preferences can help enhance the quality of support they provide, increase their usability and acceptability, and alleviate caregiver burden. However, personalization can also introduce many risks, including risks to the safety and autonomy of PwD, the potential to exacerbate social isolation, and risks of being taken advantage of due to dark patterns in robot design. In this article, we weigh the risks and benefits by drawing on empirical data garnered from the existing ecosystem of robots used for dementia caregiving. We also explore ethical considerations for developing personalized cognitively assistive robots for PwD, including how a robot can practice beneficence to PwD, where responsibility falls when harm to a PwD occurs because of a robot, and how a robot can acquire informed consent from a PwD. We propose key technical and policy concepts to help robot designers, lawmakers, and others to develop personalized robots that protect users from unintended consequences, particularly for people with cognitive impairments. 
    more » « less
  5. The omnipresence of software systems across all aspects of society has necessitated that future technology professionals are aware of ethical concerns raised by the design and development of software and are trained to minimize harm by undertaking responsible engineering. This need has become even more urgent with artificial intelligence (AI) driven software deployment. In this paper we present a study of an interactive pedagogical intervention – role-play case studies – designed to teach undergraduate technology students about ethics with a focus on software systems. Drawing on the situated learning perspective from the Learning Sciences, we created case studies, associated stakeholder roles, discussion scripts, and pre and post discussion assignments to guide students’ learning. Open-ended data was collected from thirty-nine students and analyzed qualitatively. Findings from the study show that by taking on different perspectives on a problem, students were able to identify a range of ethical issues and understand the role of the software system process holistically, taking context, complexity, and trade-offs into account. In their discussion and reflections, students deliberated the role of software in society and the role of humans in automation. The curricula, including case studies, are publicly available for implementation. 
    more » « less