Introduction :
While medical research has been characterized by a top-down approach where researchers attempt to recruit the public, including patients, to participate in studies that are designed and implemented with very little input from this very public, biomedical research is now being confronted with a new development regarding public involvement and initiative in research. Increasingly, a type of “bottom-up” or ‘user-centric’ approach is being developed. (Terry and Terry 2011) This approach, which we will refer to as “participant-centred” has been defined as ‘tools, programs and projects that empower participants to engage in the research process’ using interactive information technology.(Kaye et al. 2012) Key features of participant-centric initiatives include: a) enabling the recruitment of research participants; b) promoting interactions or communications between researchers and participants; c) providing participants with social networking possibilities; d) providing participants with certain services (e.g. return of research results); e) enabling participants to manage their preferences for personal datasharing; f) allowing participants to help drive the research agenda; g) allowing participants to provide and to have some control over their samples and data. There are various examples of such initiatives. Private Access is a private company that has developed a consumer-centric technology platform that enables patients to share their personal medical information so that they can be approached to become involved in research projects. PatientsLikeMe is a private company that enables individuals to share health information on their conditions and enables participation in research projects. Genomic information is also an integral part of several of these initiatives. Genomera connects people with similar health problems and allows individuals to share both genomic and phenotypic information and opt into clinical trials. 23andMe is a direct-to-consumer genetic testing company that provides consumers the opportunity to consent “to the use of their data for research.” (Do et al. 2011) Consumers are “given the option of contributing phenotype data via a series of web-based surveys. 23andMe states on its website that letting consumers participate in research in this way “can produce revolutionary findings that will benefit us all.”(23andme 2012) An important paradigm shift here is that publications resulting from these research activities emphasize that they are a “viable alternative to traditional methods.”(Eriksson et al. 2010)
