Nobody's Child, Everybody's Children:

Deciding Not To Have ‘That Type Of Child’: Canadian Perspectives On Preimplantation Genetic Diagnosis

In the fall of 2005, Canadians in three cities attended and discussed the play Orchids (written by Jeff Nisker) as part of a novel process of public engagement in the development of health policy on preimplantation genetic diagnosis (PGD). The goals of this engagement process were  i) to provide Canadians with the opportunity to learn about and discuss the complex social, ethical, and health policy issues arising from PGD and ii) to provide Health Canada with the results of this process, so that the multiple and diverse perspectives of Canadians can be used to inform the development of health policy on PGD as well as on wider issues of prenatal genetic testing and genomics.

Sixteen workshop performances of the 70 minute play occurred in Vancouver, Toronto, and Montréal (in French). All performances were free of charge and a total of 741 individuals attended. Each performance included the opportunity to participate in either a moderated post-performance large audience discussion held in the theatre auditoria or a simultaneous post–performance focus group held in an adjacent room. Both formats for discussion were taped and transcribed. Most audience members also completed a demographics form with written comments. A dedicated website (www.orchids-pgd.ca) describes the play and the scope of our research.

In this paper, we describe the range of issues and concerns expressed by audience members with regard to PGD and the development of policy on PGD in Canada. Our analysis yielded six interwoven themes that raise profound questions about the circumstances under which PGD should or should not be available in Canada, the individual and social implications of offering PGD, who should have access to it and under what conditions, how it should be regulated, and who should be empowered to make such decisions. Given the overarching theme of this conference and the emphasis on the responsibilities we all bear for future generations, we focus on identifying the inherent tensions between individual reproductive choice and the collective social effects of PGD. These tensions manifested in many ways in what we heard. At the broadest level, audience members were wary about attempting to draw a line between acceptable and unacceptable uses of PGD. Participants in both formats for discussion were also deeply reflective about the responsibilities that all citizens bear in shaping future societies, both by making individual choices that have collective effects and collective choices that have individual effects.