- Editorial Note
How can we conceptualize and promote agential choices in a complicated social world—one in which institutional, cultural, and marketing pressures convey values and norms that may not be in the best interest of individual patients? In this issue of the Kennedy Institute of Ethics Journal, Eric Racine and his colleagues (“Contextualized Autonomy and Liberalism: Broadening the Lenses on Complementary and Alternative Medicines in Preclinical Alzheimer’s Disease”) explore this difficult question in the context of “preclinical” Alzheimer’s disease and complementary and alternative medicines. This is an especially murky and vexed context in which to think about patient agency, for at least two reasons. First, “Preclinical” Alzheimer’s—a contested diagnosis—by definition manifests no symptoms, so patients who are told they have it may be terrified for their future but as yet have no medically induced decisional incapacity, nor any experiential way of telling if a treatment is “helping.” Second, complementary and alternative medicines are not regulated the same way as traditional interventions, and the evidence for their effectiveness is not transparently available, so making informed choices about their use is difficult. Racine and colleagues explore the various cultural and personal pressures that may lead someone with a “preclinical” Alzheimer’s diagnosis to feel responsible for trying non-standard treatments. They use this rich case study to build a “contextualized liberalism” lens for understanding and enabling patient flourishing, which weaves together respect for autonomy with a recognition that such autonomy is always situated within and constituted by complicated proximate and distal social pressures, commitments, and priorities.
Two articles in this issue explore challenging moral complexities surrounding medical research. These include how to best include patients with disorders of consciousness (such as patients in comas and in minimally conscious states) in medical research, and what sorts of ancillary duties of care researchers from high-resource countries have towards study participants in low-resource countries. [End Page ix]
In “Guardianship and Clinical Research Participation: The Case of Wards with Disorders of Consciousness,” Megan Wright and her colleagues ask how we can best protect and include patients with disorders of consciousness in medical research. These patients have minimal to no decision-making capacities or awareness of their interests, yet unlike children they have had such capacities and awareness and may have them again. The authors build a framework for thinking about how guardians can give consent for research participation. They highlight the fact that there is a pressing need for such research: we need to understand these medical conditions, and patients need the chance to benefit from research, including in cases where the research poses more than minimal risk.
Douglas MacKay and Tina Rulli explore investigators’ duties towards research participants in low-income countries in “The Duty to Rescue and Investigators’ Obligations.” They share the intuitions of multiple scholars that investigators often have ancillary duties of care towards the participants in their studies. But they wish to distinguish their account from others’ by avoiding twin pitfalls: the mistake of giving an explanation of these duties that would make them far too broad and generalized to actually fulfill, and the mistake of ignoring the institutional context in which investigators operate. They argue that the primary duties of care are institutional duties, and that investigators accrue such duties as representatives and agents of these institutions. They also argue that the primary duties are to populations rather than to individuals.
Finally, in “Public Reasoning and Health-Care Priority Setting: The Case of NICE,” Benedict Rumbold and his colleagues take up the thorny and always politically charged topic of health care resource allocation and prioritization. They examine the UK’s National Institute for Health and Care Excellence (NICE), which is charged for setting priorities for health care coverage. This institute has established a defeasible threshold for cost effectiveness, measured in terms of QALYs; interventions that do not meet this threshold have no guarantee of being funded under the national health care system. However, NICE also makes room for social and ethical values to shape their list of covered services, and interventions that don’t make the cost effectiveness threshold may be covered if they can be shown to meet some important...