An evaluation of G[E.sup.3]LS public engagement activities.

• Author: Longstaff, Holly
• Position: Canada

1. Introduction

   Public engagement is a significant challenge for many social scientists, physical scientists, and policy makers involved in genetics and genomics research. Despite our commitment to public involvement and extensive research in this area, we continue to struggle with many long standing criticisms (i.e., how to achieve representativeness, sampling biases) and barriers (i.e., public apathy, funding limitations). I argue that evaluating and comparing methods is an effective way to illuminate aspects of various approaches that will help us to ultimately reach our goals.

   For five weeks this spring, I had the opportunity to conduct research in this area with support from the Stichting Porticus Foundation's Multidisciplinary Human Gene Technology, Research, and Therapy Project Scholarship Programme. (1) My research resulted in a paper in which I discussed the public engagement efforts of the Genetics and Society Project at the University of Montreal [GSP] and The W. Maurice Young Centre for Applied Ethics at the University of British Columbia [CAE]. Each centre is deeply committed to G[E.sup.3]LS (2) public engagement activities. I explored the strengths and limitations of all current engagement activities at each centre by comparing them against sets of pre-determined motivational and evaluation criteria. The following three questions guided this analysis: (1) What truly motivates our public engagement efforts?; (2) How do our projects fare against document review findings and Justice Canada's evaluative criteria? (3); and (3) How can we help each other to better serve our publics?

2. Methods

   This project involved four tasks. First, a two part literature review was performed in order to compile lists of motivation and evaluation criteria created by government and non-governmental organizations and academic researchers. The HumGen database's Canadian policy statements were also examined. These findings would serve as the basis for the comparative analysis of public engagement activities conducted by the two research centres. Second, GSP public engagement activities were reviewed. Document reviews and informal interviews with members of the GSP team helped to clarify public engagement activities associated with the following projects: The CARTaGENE project; Inherit BRCA; The Sickle -Cell Disease Pilot Project; and Genomics and Public Health (GPH): Building Public "Goods"? project [GPH]. Third, public engagement activities completed by...