Abstract
Nontherapeutic genetic testing in childhood raises many ethical concerns within and beyond the clinic. We examine six key position statements from Canada, the United Kingdom, and the United States that present ethical guidelines for good practice in clinical nontherapeutic childhood testing. Using a discourse-analytic perspective that focuses on the use of rhetorical contrasts, we identify how these statements argue for recommendations with distinctly different modalities for different types of nontherapeutic genetic testing. This comes about because of the interaction between a number of contrastive descriptions. It is dependent on how the genetic information resulting from testing is differentiated on a cline of seriousness, how such an evaluation is premised on a network of assumptions about the status of reproduction in people's lives, and the related selective deployment of ethical principles that foregrounds the self over others.
About the authors
Susan Hogben is a researcher working on a project funded by the Office of Science and Technology identifying emerging science and technology issues in UK media. She was previously a Research Associate with CESAGen, an ESRC Centre for Social and Economic Aspects of Genomics examining genetics, health, and identity with a particular focus on childhood genetic testing. Her research interests include representations of identity, health, and illness, novel family formations and reproductive technologies, constructions of community, family, and belonging, and the role of evidence in the production of explanations.
Paula Boddington is a Senior Research Fellow at the Institute of Medical Genetics at Cardiff University. She is a philosopher with interests in medical ethics and the philosophy of medicine currently working on two Wellcome Trust funded research projects examining the communication of genetic information, and the explanation of common complex disorders in science and in policy.
© Walter de Gruyter