Public involvement in health genomics: the reality behind the policies

Public involvement is increasingly becoming the norm as stakeholders recognize the need to inform, consult and engage the public. However, there is limited understanding about the meaning and implications of public involvement, in particular elements like the levels of public involvement, the goals of the involvement, the type of public to be involved, the methods of involving the public and the need to assess effectiveness. We conducted a systematic review of policy documents/guidelines published between 1998 and 2009, by governments, health professionals and the public regarding public involvement in the area of human genomics. Documents were identified using the HUMGEN database and organizational web sites. A total of 70 documents were retrieved addressing public involvement and human genomics. The review revealed that 22 documents mentioned the active process of partnership and collaboration, whereas 27 mentioned consultation and 29 mentioned education. The most common goals were building trust and respect, followed by education, governance and lastly, understanding risks and benefits. We found that less than a third of the documents defined who the public is, and when mechanisms for public involvement were mentioned, they were rarely placed into a context. Few documents drew attention to evaluation. It is reassuring to see that there has been an emphasis placed on public involvement in the area of health and genomics. The findings underscore the gaps existing in the actual policy documents/guidelines and the need to clarify the goals, the methods, who is the public, what mechanism are appropriate and the need for evaluation when addressing public involvement in health genomics.