title: Policy recommendations for carrier testing and predictive testing in childhood: a distinction that makes a real difference.
abstract: The genetic testing of children raises many ethical concerns. This paper examines how five position statements from Canada, UK and USA, which present guidelines for good practice in this area produce different recommendations for carrier testing and predictive testing. We find that the genetic information generated through carrier testing is routinely presented as less serious than that generated from predictive testing. Additionally, the reproductive implications of predictive testing are also routinely erased. Consequently, the papers argue strongly against predictive testing but advise caution against carrier testing in somewhat weaker terms. We argue that these differences rest on assumptions about the status of reproduction in people's lives and on an ethical stance that foregrounds the self over others. We propose that questioning the crude and sharp distinction between carrier and predictive testing in principle may enable practitioners and parents/families to make more nuanced decisions in practice.
authors.affiliation: ESRC Centre for Economic and Social Aspects of Genomics (CESAGen), Cardiff University, Cardiff, Wales, United Kingdom. hogbens@cardiff.ac.uk
authors.forename: Susan
authors.initials: S
authors.lastname: Hogben
authors.forename: Paula
authors.initials: P
authors.lastname: Boddington
mesh_terms: D002648:Child; D006580:Genetic Carrier Screening / Q000379:methods; D040181:Genetic Diseases, X-Linked / Q000175:diagnosis / Q000453:epidemiology* / Q000235:genetics*; D005820:Genetic Testing / Q000379:methods*; D006801:Humans; D011050:Policy Making; D011237:Predictive Value of Tests