Background Patient and public involvement (PPI) is a prerequisite for many funding bodies
and NHS research ethics approval. PPI in research is defined as research carried out with or …

WikiGenes is the first wiki system to combine the collaborative and largely altruistic
possibilities of wikis with explicit authorship. In view of the extraordinary success of …

ABSTRACT BACKGROUND Patients and healthcare stakeholders are increasingly
becoming engaged in the planning and conduct of biomedical research. However, limited …

Different types of consent are used to obtain human biospecimens for future research. This
variation has resulted in confusion regarding what research is permitted, inadvertent …

The philosophical underpinning of Community-Engaged Research (CEnR) entails a
collaborative partnership between academic researchers and the community. The …

Citizen science initiatives that support collaborations between researchers and the public
are flourishing. As a result of this enhanced role of the public, citizen science demonstrates …

Grand challenges are among the most complex problems for modern societies. Many
governments and foundations provide substantial resources to encourage the search for …

Human genetic and genomic research can yield information that may be of clinical
relevance to the individuals who participate as subjects of the research. However, no …

In recent years, citizens' and civil society engagement with science and technology has
become almost synonymous with participation in institutionally organized formats of …

This paper examines how patient advocacy organizations (PAOs) representing those with
rare genetic disorders drive research to their concerns. The rarity of the diseases produces a …