Public Involvement in Global Genomics Research: A Scoping Review

Area of Science:

• Genomics
• Public Health
• Research Ethics

Background:

• Public involvement in research actively engages the public, patients, and participants.
• It is a recognized priority in global human genomics research initiatives.
• A comprehensive review of public involvement in human genomics research is lacking.

Purpose of the Study:

• To review and analyze the features, methods, and impacts of public involvement in human genomics research projects worldwide.
• To assess the extent and nature of public involvement in initiatives within the Global Alliance for Genomics and Health database.

Main Methods:

• A scoping review of 96 human genomics projects was conducted.
• Data was extracted from public domain websites of initiatives.
• A structured categorization of criteria was applied to analyze reported public involvement.

Main Results:

• Only 33% (32/96) of human genomics initiatives reported any public involvement.
• Significant variation exists in the methods and tasks of public involvement.
• Three initiatives reported eight distinct impacts from public involvement, showcasing diverse engagement methods.

Conclusions:

• There is intrinsic value in increasing public involvement in human genomics research globally.
• Systematic reporting and evaluation of public involvement are crucial for developing best practices.
• Further research should focus on standardizing methods and impact assessment for public engagement in genomics.