Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion‐oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, (...) living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É‐LABO, we approach challenges as learning opportunities to ask not only “how” questions but also “why” questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics. (shrink)

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. (shrink)

Health care resource allocation is a complex governmental task involving political decisions that are bound to be influenced by the various needs of the population and the demands of health professionals. What influence should these different interests have on the integration of new technologies into the health care system? Pharmacogenomics, a new field in the pharmacological sciences that integrates into the drug development process genomic information developed through the Human Genome Project, has been proposed as a technology that promises to (...) make medical practices more personalized. Its integration in drug development or prescription processes could help reduce the risk of adverse drug reactions characteristic of pharmaceutical treatments. Considering the actual allocation of health care resources in Quebec, should the provincial government invest in the integration of pharmacogenomics as a new tool for drug development or drug specification? This question will be addressed using the criteria previously described by Caulfield and colleagues in order to assess the justification of public financing for genetic testing[1], i.e., moral acceptability, utility, safety and the requirement of a noticeable benefit at an acceptable cost for society. Given the proximity of the fields of genetics and genomics, these criteria are applicable to our discussion. (shrink)

HIV stigmatization is one of the most notable barriers to individual testing, seriously impairing global efforts in the fight against HIV/AIDS. Because stigmatization is strongly embedded in local cultural and social habits, humanitarian healthcare workers providing HIV testing, counselling and prevention programs in low and middle income countries have become a serious alternative to local healthcare providers. This case study addresses some of the ethical dilemmas that humanitarian healthcare workers face when confronted with HIV-associated stigma.