Abstract
BackgroundDisease-specific stem cell therapies, created from induced pluripotent stem cell lines containing the genetic defects responsible for a particular disease, have the potential to revolutionize the treatment of refractory chronic diseases. Given their capacity to differentiate into any human cell type, these cell lines might be reprogrammed to correct a disease-causing genetic defect in any tissue or organ, in addition to offering a more clinically realistic model for testing new drugs and studying disease mechanisms. Clinical translation of these therapies provides an opportunity to design a more systematic, accessible and patient-influenced model for the delivery of medically innovative treatments to chronically ill patients.DiscussionI focus on disease-specific cell therapies because the types of patients who would benefit from them have congenital, severe, high-maintenance chronic conditions. They accordingly have a very strong claim for medical need and therapeutic intervention, must interact regularly with health providers, and so have the greatest stake in influencing, at a systemic level, the way their care is delivered. Given such patients’ shared, aggregate needs for societal support and access to medical innovation, they constitute “patient communities”. To reify the relevance of patient communities within a clinical context, I propose competitive grants or “prizes” to spur innovation in delivery of care, promoting “prosocial” values of transparency, equity, patient empowerment, and patient-provider and inter-institutional collaboration. As facilitators of participant-driven advocacy for health and quality of life-improving measures, patient communities may be synergistic with the broad-based, geo-culturally embedded public health networks typically referred to as “communities” in the public health literature.SummaryProsocial values acquire a strong ethical justification based on shared need, and can be clearly defined as grant criteria, when applied to patients such as those who will benefit from disease-specific stem cell treatments. Within this context, prosociality aims not just to expand patients’ treatment choices, but also their opportunities to take a more active role in the management of their own care and contribute towards shared goals through better-informed advocacy. Accordingly, prosociality promotes relational autonomy as well as other basic bioethical principles, including beneficence and a holistic, relational conception of human dignity.
Highlights
Disease-specific stem cell therapies, created from induced pluripotent stem cell lines containing the genetic defects responsible for a particular disease, have the potential to revolutionize the treatment of refractory chronic diseases
Summary: Prosocial values acquire a strong ethical justification based on shared need, and can be clearly defined as grant criteria, when applied to patients such as those who will benefit from disease-specific stem cell treatments
Stem cells have come to represent an archetypal form of medical innovation—their potential to differentiate and repopulate any cell type raises the possibility of a paradigm shift in medical therapy, based on a largely untapped but theoretically almost limitless promise of regeneration [1,2]
Summary
Bringing prosocial values to translational iPS cell research In the U.S, such patient communities, often via local chapters of disease-specific foundations, are already active at the national or local level in policy advocacy and campaigns for research funding, and would benefit alike from developments in disease-specific stem cell therapies. Ethical foundations and the limits of “capability”: response to criticism The model proposed here, aimed at minimizing the harm of chronic conditions by promoting a holistic, relational concept of quality of life—encompassing a broad range of criteria, including health status, access to information, opportunities for education, work, and recreation, as well as the quality, variety and personal meaningfulness of social interaction—which altogether would facilitate human flourishing, may resemble and complement the “capabilities approach” advocated by Nussbaum and Sen, applied to the context of patient experience by Entwistle and Watt [25] This argument does not deny such an overlap or the potential synergies, in policy and in improved, relational metrics for quality of life, which may result from it. Competing interests The author declares that he has no competing interests
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