Living ethics: a stance and its implications in health ethics.

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

Justice and Neurodevelopmental Disability: Moral-Political Philosophies, Policies, and Their Outcomes.

Neurodevelopmental disabilities, such as cerebral palsy and autism, touch a population which has been dubbed to be "doubly vulnerable." Individuals with neurodevelopmental disability have conditions that impair their cognition, communication, mobility, or social interactions, and they also rely on others to make decisions on their behalf. Accordingly, these children-as described in other contributions of this special issue-are particularly prone to suffer from systemic (ie, social, economic, and political) conditions that give or prevent access to quality and timely health care and social services as well as economic opportunities. In this article, we expose 2 different views on the principle of justice (justice as equality and justice as fairness). We then examine policy approaches and general outcomes of 3 countries (Sweden, the United States of America, and the United Kingdom), which have opted for different policy orientations. The United Kingdom's targeted approach to neurodevelopmental disability seems to be generating interesting results while the more general Swedish approach is not without merits, although perhaps more difficult to apply to other countries. Given knowledge gaps, there is great need to compare different policy approaches to neurodevelopmental disability and their real-world implications on the life of individuals and their families.