Bringing prosocial values to translational, disease-specific stem cell research
Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH 44106-4976, USA
BMC Medical Ethics 2014, 15:16 doi:10.1186/1472-6939-15-16Published: 27 February 2014
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. 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.
I 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.
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. 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.