Involving the Public in Public Health Genomics: A Review of Guidelines and Policy Statements

Abstract

Public health genomics raises exciting possibilities for preventing or reducing the occurrence of both rare and common disease. However, this area of research raises challenging ethical, legal and social issues that should be addressed. One way of addressing these issues is through public involvement in the policy-making process. This GenEdit reviews how international guidelines and policy statements related to public health genomics address the issue of public involvement. Key areas of discussion are the values and goals justifying public involvement, the proposed activities to increase public involvement, who is and who represents ‘the public’, as well as the projected outcomes of such involvement.