Sass Reuben G
Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH 44106-4976, USA.
BMC Med Ethics. 2014 Feb 27;15:16. doi: 10.1186/1472-6939-15-16.
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.
特定疾病的干细胞疗法是由诱导多能干细胞系产生的，这些细胞系含有导致特定疾病的遗传缺陷，有可能彻底改变难治性慢性病的治疗方式。鉴于它们能够分化为任何人类细胞类型，这些细胞系除了能为测试新药和研究疾病机制提供更符合临床实际的模型外，还可能被重新编程以纠正任何组织或器官中导致疾病的遗传缺陷。这些疗法的临床转化为设计一个更系统、更易获得且受患者影响的模型提供了机会，以便为慢性病患者提供医学创新治疗。
我关注特定疾病的细胞疗法，因为能从这些疗法中受益的患者患有先天性、严重且需要长期护理的慢性病。因此，他们对医疗需求和治疗干预有着非常强烈的诉求，必须定期与医疗服务提供者互动，所以在系统层面影响其护理提供方式方面有着最大的利害关系。鉴于这类患者对社会支持和获得医疗创新有着共同的总体需求，他们构成了“患者群体”。为了在临床背景下体现患者群体的相关性，我提议设立竞争性拨款或“奖项”，以激励护理提供方面的创新，促进透明度、公平性、患者赋权以及患者与提供者和机构间合作等“亲社会”价值观。作为参与者驱动的健康和生活质量改善措施倡导的促进者，患者群体可能与公共卫生文献中通常称为“社区”的广泛的、地域文化嵌入的公共卫生网络协同作用。
基于共同需求，亲社会价值观具有强大的伦理依据，当应用于将从特定疾病干细胞治疗中受益的患者等群体时，可明确界定为拨款标准。在此背景下，亲社会性不仅旨在扩大患者的治疗选择，还旨在增加他们在自身护理管理中发挥更积极作用的机会，并通过更明智的倡导为共同目标做出贡献。因此，亲社会性促进关系自主性以及其他基本生物伦理原则，包括行善和对人类尊严的整体、关系性概念。
