Decision Making in Biomedicine

My research primarily focuses on three branches of decision making in biomedicine: treatment decisions in somatic medicine, treatment decisions in psychiatric and mental health care, and decisions to use direct-to-consumer tools. In all three, there is a focus on the importance of autonomy and a right to self-direction, which entails a critical focus on individual understanding throughout the informed consent process. Individual understanding is critical for ensuring the just treatment of individuals in these biomedical contexts. A feminist epistemological perspective underlies my analysis of the role of knowledge in route to understanding and the responsibilities of epistemic communities.

Project A – Decision Making in Somatic Medicine

My dissertation research directly builds off of my pre-doctoral experiences with clinical ethics, and my current work in clinical ethics is influenced by concepts discussed in my thesis. Bioethicists agree that there are problems with the current informed consent process in somatic medicine but disagree on both the etiology of these problems and the appropriate solutions. In this space, my dissertation research explores a problem I call the Medical Missed-understanding Problem (MMP). This occurs when patients seem to get it, give consent, and only later realize something was missing from their understanding, which, had they known, would have changed the outcome of their decision-making.

To address this problem, I develop criteria for patient understanding based on the bioethics literature’s descriptions of meaningful informed consent. Namely, two types of understanding are required: 'factual understanding' and 'personalized understanding.' This can be characterized as the difference between knowing that something is true versus knowing how those facts would uniquely play out in one's life. In light of this distinction, I investigate common types of decision aids (e.g., health literacy, values clarification, and nudging from libertarian paternalism) and how these interventions aim to improve medical decision making. The distinction in types of understanding provides clarity on where we are falling short of our ethical goals for patient understanding. Moreover, the distinction helps inform the precision with which we use the different decision aids. Ultimately, I argue for the use of guided imagination, virtual reality, and video role-playing games as crucial tools for facilitating meaningful understanding for informed consent. My dissertation research has been presented at regional, national, and international conferences, including the meetings of the American Society for Bioethics and Humanities (ASBH) and the World Congress on Bioethics (WCB). Additionally, I have presented this work as an invited speaker at The Philosophy of Medicine and Mental Health Conference, at the University of Nebraska Omaha. I am currently developing two papers for journal submission based on my dissertation research (see Abstracts 1Ai and 1Aii).

Project B – Decision Making for Psychiatry and Psychotherapy

My dissertation research has branched out to explore consent in psychiatric care and for research participation. Each area presents new and intriguing concerns. The challenge in mental health care, including psychiatry and psychotherapy, is that the patient is not always competent to give consent. This among other considerations is discussed in Gilmore-Szott & Cunningham (2021) (see Abstract 1B). We argue that an informed consent process is required in these contexts because mental health care is medicine. However, the consent process need not be identical to somatic medicine. Namely, it often could not, because as a field, the etiology of psychiatric conditions often lacks the specificity present in somatic medicine. The ambiguity in this domain should be named in the informed consent process, as I argued in a talk at the Center for Philosophy of Science at the University of Pittsburgh in 2016.

Project C – Hybrid Consent: Biomedical Innovation and e-Health Services

Increasingly, individuals are making health care decisions in hybrid contexts, where they are not solely a patient, or a consumer, or a research participant. These hybrid contexts exist within traditional domains of medicine, where a patient might be the recipient of new biomedical innovation, such as a new surgical technique or a new biomedical device. In these instances, the intervention is for the direct benefit of the individual and generating data for generalizable knowledge. Typically, these cases will still fall under traditional informed consent processes for patients and participants. However, hybrid contexts increasingly exist in the realm of direct-to-consumer e-Health services. In this domain, the individual is no longer a patient nor formally a research participant. Instead, individuals exist in a third category of user or consumer.

My research interests in this space build off previous work providing ethics consultations during the development of an e-health tool called ItRunsinMyFamily.com. This service would allow family members to collaborate in creating a full family health history. These platforms can offer direct clinical benefits to the user, such as developing a robust family health history. Moreover, many platforms in the e-health domain de-identify the data provided by users and it is aggregated and made available for secondary research. In these instances, the user rarely gives formal consent and exists is in a hybrid role: receiving a direct clinical benefit and operating as a de facto research participant.