Regarding the ethical concerns of this DTC project:
Our group is working with a cerebral palsy patient, Marc, in regards to his issue with staying upright and not slipping off his bed when falling asleep.
While working with Marc and his physical therapist, Walter Guminiak, our main ethical concerns are (1) our language, (2) his safety, and (3) his privacy. We determined that these three are our primary concerns as they are most user-focused and tailored towards Marc’s condition and his personal life.
(1) Concerns with our language:
Our research will not be intrusive, and all our communication will be via email or Zoom when meeting “face-to-face” with him. It is important that we are respectful to our user’s circumstances and understanding of any communicative issues that arise as a result. Our language will be respectful and we will ensure that we do not dehumanize him with words such as “patient, suffering, disabled”. Anything we may be unsure about, regarding his comfortability, we will be respectful and communicate with him first before proceeding with our actions.
(2) Concerns with Marc’s safety:
In reference to potential solutions to the project problem, while there may not be any direct concerns regarding ethics, we must always ensure that we are working with Marc in a safe and secure environment. We will ensure that he gives us his full consent before we proceed with any user testing. In testing our potential solutions, we may encounter cases where Marc may fall out of his bed due to shortcomings in our design. Our design requires some amount of motor function and balance, so it is essential that we first, provide a safe testing environment for Marc, and second, that we test the devices ourselves prior to user testing in order to maximize his safety.
(3) Concerns with Marc’s privacy:
Marc’s privacy and confidentiality should be essential while completing this project. We will be thoughtful of his “confidentiality umbrella” and be respectful of his personal context/life. All of his information, whether it is given through Walter/Velarie or directly from him, should be used strictly for this DTC course and not released in any form of media outside of class. Any communication with Marc that we may use throughout this course will be used under his full knowledge and his clear consent. These measures are important because the more information Marc feels comfortable to share with the team, the better we can tailor our design to the user’s specific needs.
Design Review Feedback Summary:
In response to these ethical concerns, we received substantial feedback as to additional areas to emphasize in order to undergo a design process which will lead to the best outcomes for our user. Students suggested helpful additions such as reaffirming our commitment to Marc’s privacy every time we collect information. This suggestion will be taken into account as we believe it is vital that Marc understands that he is able to share information with us without fear of his personal data being given to the public. However, a suggestion that we ask for direct permission to use our notes on Marc in our final deliverables will be considered but not necessarily implemented as our final deliverables will be an internal document not shared with outside parties not already knowledgeable of that information.