Community Engagement

The discussion of ethical, legal and social implications often crosses over into discussions and plans for community engagement and education. This occurs because the discussion of ethical issues and social norms is accompanied by the need to understand the community values and expectations of genomics and the engagement activities that allow that to be assessed are also opportunities to raise public awareness and education.

From an ELSI point of view, community and public engagement is largely concerned with building public trust and confidence in genomic medicine including accurate communication of the potential as well as the limitations of the technology. 

Many of the major genomic medicine initiatives such as the 100,000 Genomes Project in England and the All of Us project in the US have incorporated close and ongoing engagement with patients and the general public to better understand their concerns and develop policies and education material that address those concerns.

Resources on Community Engagement

Sabatello M, Chen Y, Zhang Y, Appelbaum PS. Disability inclusion in precision medicine research: a first national survey. Genetics in Medicine. 2019.

Building Trust in Genomic Medicine. ‘Genomics’ is a buzzword for clinicians, but what efforts are being made to engage the public? 03 January 2017. Genomics Education Program, NHS Health Education England https://www.genomicseducation.hee.nhs.uk/news/item/322-building-trust-in-genomic-medicine/

Samuel, G., & Farsides, B. (2017). Public trust and 'ethics review' as a commodity: The case of Genomics England Limited and the UK's 100,000 genomes project. Medicine, Health Care, and Philosophy, Medicine, health care, and philosophy, 30 October 2017. http://doi.org/10.1007/s11019-017-9810-1 

Communications and Engagement. National Institutes of Health All of Us Research Program https://allofus.nih.gov/about/program-components/communications-and-engagement