Community engagement in biobanking: Experiences from the eMERGE Network

Abstract

Advances in genomic technologies and the promise of "personalised medicine" have spurred the interest of researchers, healthcare systems, and the general public. However, the success of population-based genetic studies depends on the willingness of large numbers of individuals and diverse communities to grant researchers access to detailed medical and genetic information. Certain features of this kind of researchsuch as the establishment of biobanks and prospective data collection from participants' electronic medical records -make the potential risks and benefits to participants difficult to specify in advance. Therefore, community input into biobank processes is essential. In this report, we describe community engagement efforts undertaken by six United States biobanks, various outcomes from these engagements, and lessons learned. Our aim is to provide useful insights and potential strategies for the various disciplines that work with communities involved in biobank-based genomic research.

Bringing personalized medicine to the community through public engagement

“…Lemke et al described community engagement activities undertaken by six biobanks in the USA, high lighting a range of public engagement mecha nisms [44]. The governance of these biobanks were informed by surveys and focus groups with patient and specialist groups, consensus devel opment panels, community advisory panels and also deliberative democracy events.…”

Big Data: Challenge and Opportunity for Translational and Industrial Research in Healthcare

“…The case of the Electronic Medical Records and Genomics (eMERGE) Network is a clear example of project spanning a long period, focusing the first efforts and deliverables on building the logic and standards to organize data and the institutions collecting and sharing them (Lemke et al, 2010;Deleger et al, 2014;Jiang et al, 2015). The primary goal of the eMERGE is to combine biorepositories with EHR systems aimed at genomic discovery and implementation of genomic in the medical practice.…”

TMI! Ethical Challenges in Managing and Using Large Patient Data Sets

“…Instead, database managers and population researchers have turned to different levels of community engagement in managing their collections. Researchers hope that by involving representatives of patient groups in decision making about data access and dissemination, they will be better able to anticipate and avoid potential risks of group-level information disclosure, to give the affected communities more control over the uses of "their" information, and to help ensure that risks are offset by benefits to the affected community [29]. Some families, communities, and national governments have begun to assert claims of "genomic sovereignty" over samples and data from members of their groups, thus introducing powerful political, economic, and legal complications for scientists and clinicians [30].…”