This paper, published in the August 2005 issue of Journal of Genetic Counseling (Vol. 14, No. 4, pp. 271-281), examines how five good practice position statements from Canada, UK and USA, produce different recommendations for carrier testing and predictive testing. The authors propose that questioning the crude and sharp distinction between carrier and predictive testing in principle may help practitioners and parents/families to make more nuanced decisions in practice.
Policy Recommendations for Carrier Testing and Predictive Testing in Childhood: A Distinction That Makes a Real Difference
Susan Hogben(1) and Paula Boddington(2)
(1) ESRC Centre for Economic and Social Aspects of Genomics (CESAGen), Cardiff University, Cardiff, Wales, United Kingdom
(2) Department of Medical Genetics, School of Medicine, Cardiff University, United Kingdom
(3) ESRC Centre for Economic and Social Aspects of Genomics (CESAGen), Cardiff University, 6 Museum Place, Cardiff, CF10 3BG Wales, United Kingdom
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.
Parts of this work have been presented in the 1st International CESAGen Conference, London, 2004, and Genetics and Society Meetings, Wales.
For e-link to abstract, click here.
(C) Journal of Genetic Counseling.
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