Public Involvement in Global Genomics Research: A Scoping Review

Abstract

Public involvement in research occurs when the public, patients, or research participants are actively contributing to the research process. Public involvement has been acknowledged as a key priority for prominent human genomics research initiatives in many different countries. However, to date, there has been no detailed analysis or review of the features, methods, and impacts of public involvement occurring in human genomics research projects worldwide. Here, we review the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites. To conduct the scoping review, we applied a structured categorization of criteria to all information extracted from the search. We found that only a third of all initiatives reported public involvement in any capacity (32/96, 33%). In those reporting public involvement, we found considerable variation in both the methods and tasks of involvement. Some noteworthy initiatives reported diverse and comprehensive ways of involving the public, occurring through different stages of the research project cycle. Three notable initiatives reported a total of eight distinct impacts as a result of involving people. Our findings suggest there would be intrinsic value in having more public involvement occur in human genomics research worldwide. We also suggest that more systematic ways of reporting and evaluating involvement would be highly beneficial, to help develop best practices.

Citizen Science Models in Health Research: an Australian Commentary

“…Additionally, there are identified gaps in the literature on reporting methods and the extent of public involvement in clinical trials which constitute a critical share of health and biomedical research design. A study of public research involvement in online trials concerning health selfmanagement, for example, found that detailed reporting of such involvement was hindered by role confusion between research volunteers and trial participants [22]. Other related study findings contribute to the literature by documenting researchers' perspectives and experiences about sharing results with research participants.…”

“…Health and biomedical citizen science is not readily defined as a separate practice or associated with a specific framework or schema, although the field is increasingly identified with a number of engagement models [21][22][23][24]. Projects involving human health and participants can be viewed as citizen science among various forms of community-based participatory research, action research, patient and public involvement (PPI), self-quantification, crowdsourced health research, among other practices [15,[23][24][25][26].…”

The reported impact of public involvement in biobanks: A scoping review

“…Public involvement aims to have the public, patients or research participants actively contributing to the research process. 6 Public involvement is seen as a means to produce and maintain public trust and legitimacy, which are essential for the functioning of biobanks. 6 This increase in efforts to involve the public in processes of decision making has occurred across the health-care sector.…”

“…6 Public involvement is seen as a means to produce and maintain public trust and legitimacy, which are essential for the functioning of biobanks. 6 This increase in efforts to involve the public in processes of decision making has occurred across the health-care sector. In the UK, 'public involvement' is mandated by the National Institute for Health Research and other research funders.…”

The AutGO Initiative: A Conceptual Framework for Developing Genetics‐Outcomes Research Hypotheses

“…A recent systematic review by Nunn, Tiller, Fransquet, and Lacaze [2019] evaluated public involvement in human genomics research projects worldwide. They found that only about 30% of the initiatives described public involvement in any capacity, and 2% involved public beyond data collection and at the level of co‐creation of the scientific process, so called “citizen science.” Clearly, there is a great need to increase public involvement in genetics research, and develop standardized methods of reporting their engagement; the impact of such involvement may be evaluated by assessing both qualitative and quantitative data [Nunn et al, 2019]. A series of guidelines have recently been developed by the National Institute of Mental Health workgroups (http://nimh.nih.gov), particularly, in relation to methodological aspects of genetics research studies, but they did not include any recommendation for incorporating patient perspectives in study design.…”