From patients to partners: participant-centric initiatives in biomedical research.

Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.

Human Dignity as Leading Principle in Public Health Ethics: A Multi-Case Analysis of 21st Century German Health Policy Decisions.

BACKGROUND: There is ample evidence that since the turn of the millennium German health policy made a considerable step towards prevention and health promotion, putting the strategies of 'personal empowerment' and 'settings based approach' high on the federal government's agenda. This phenomenon has challenged the role of ethics in health policy. Concurrently, increasing relevance of the Concept of Human Dignity for health and human rights has been discussed. However, a direct relationship between Human Dignity and Public Health Ethics (PHE) has surprisingly not yet been established. METHODS: We here conduct a systematic ethical analysis of eminent German health prevention policy case-examples between the years 2000-2016. Specifically, our analysis seeks to adapt and apply the principalism (autonomy, beneficence, justice)-based Concept of Human Dignity of Italian philosopher Corrado Viafora, contextualizing it with the emerging field of PHE. To further inform this health policy analysis, index databases (PubMed, Google Scholar) were searched to include relevant published and grey literature. RESULTS: We observe a systematic approach of post-millennial health policy decisions on prevention and on defined health targets in Germany, exemplified by (1) the fostering of the preparedness against pandemic infectious diseases, (2) the development and implementation of the first cancer vaccination, (3) major legal provisions on non-smokers protection in the public domain, (4) acts to strengthen long term care (LTC) as well as (5) the new German E-Health legislation. The ethical analysis of these health prevention decisions exhibits their profound ongoing impact on social justice, probing their ability to meet the underlying Concept of Human Dignity in order to fulfill the requirements of the principle of non-maleficence. CONCLUSION: The observed health policy focus on prevention and health promotion has sparked new public debates about the formation of/compliance with emerging standards of PHE in Germany. We believe that the overall impact of this novel policy orientation will gradually show over mid- and long-term periods, both in terms of improvements in health system performance and concurrently in diagnostics, therapies and health outcome on individual patient level. The Concept of Human Dignity may soon play an even greater role in European PHE debates to come.