Troubling Hope: A Theological Framework for Assessing Hope in Research Ethics
Andrea Thornton, BCC, PhD Candidate, Saint Louis University, St. Louis, MO, Director of Mission, Bon Secours Mercy Health, Cincinnati, OH

Hope is ubiquitous in health care: Patients hope for relief; physicians and nurses hope to help; families hope for more time. This hope extends beyond reliable proven treatments and stretches the enterprise of medicine in research and development. There is the cultural hope for “a cure” to be discovered. This hope can be tricky, though, because so much is at stake with terminal illness, and the infirmed are so vulnerable. The risk of exploitation is high. Thus, a debate has arisen in research ethics that problematizes hope and optimism among research participants. The debate features those who emphasize the right to access experimental treatments and those who question the validity of consent if a person is unrealistically optimistic. Lynn Jansen (2006; 2011; 2014; 2018), Adrienne Martin (2008; 2014), and Jeremy Snyder (2021) all identify exploitative potential in clinical trials when subjects hope for benefit, especially those experiencing serious illnesses such as cancer. By problematizing hope that is ripe for exploitation, they implicitly suggest that a normative framework exists for hope. Is there a hope that cannot be exploited? Is there a hope that cannot be disappointed? Here religious hope offers answers. Religion provides the possibility of transcendence and healing that embraces mortality. Religion offers hope despite the inevitability of death. In response to these scholars who trouble hope in research, I offer a normative framework for hope based on the work of Thomas Aquinas. Aquinas distinguishes the passion of hope from the theological virtue of hope. The passion of hope can be manipulated and exploited in medicine, but the virtue cannot be exploited. The passion of hope is easily changed, but the virtue of hope is a steady habit infused by God. I propose this framework to distinguish a hope that is problematic for informed consent from a hope that can never be wrong. I then recommend applications of this normative framework to support deliberation about goals of care and research participation as a way of honoring religious liberty while protecting the vulnerable from exploitation.