Ethical issues in reproductive genetic carrier screening

Abstract

Reproductive Carrier Screening (RCS) involves testing individuals or couples to determine their likelihood of having a child with certain inherited genetic conditions. RCS raises ethical considerations, including: the acceptable goals of screening, how to choose the genes to test for, ensuring recipients make choices consistent with their preferences, reporting results, funding models, and ensuring that RCS programs reflect community values. The Australian Reproductive Genetic Carrier Screening Project (ARGCSP; ‘Mackenzie’s Mission’) is a research project investigating how RCS could be provided nationally in future. In this paper we outline the ethical issues in RCS as relevant to initiatives like the ARGCSP.