“I’ve never been asked”: Community perspectives on involvement in genomics research

Abstract

There is increasing global support from governments and other funding bodies for community involvement (CI) in research, alongside a scientific and moral imperative for responsible and ethical research practice. 90% of Australian patient-led organisations in rare diseases have clearly articulated research priorities, indicating a desire among people affected by disease to be involved in research that impacts their communities. Philanthropic research, which is likely to have predominantly community-minded priorities, is worth over AU$1 billion annually and increased more than 100% between 2007 and 2017. This research aimed to understand public perspectives on CI in health-related research activities, and to inform the development of guidelines for genomic researchers to improve this. A 37-question survey was distributed to 1,206 members of the Australian public by Dynata. The survey was co-designed by the Involve Australia working group of community members within Australian Genomics. Key themes emerging from the survey data that impact potential involvement were low community confidence to contribute, a limited understanding of CI, roles and recognition, trust and governance of data, perceived trustworthiness of research funders, and barriers and enablers related to time and personal resources. A variety of motivations for involvement were also stated. Members of the Australian public are interested in research involvement, however the differences between involvement and participation is poorly understood and a variety of barriers still exist. Researchers must actively reach out into community and offer opportunities to engage with research and identify community priorities.