Pre-implantation Genetic Diagnosis (PGD) and the prohibition on pro-disability selection: The need for public consultation in Australia

Dr Malcolm Smith1

1 Senior Lecturer, Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, GPO Box 2434, Brisbane, Qld, Australia 4001. E-mail: mk.smith@qut.edu.au

The National Health and Medical Research Council’s (NHMRC) Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research (2007) have recently undergone review. One aspect of the guidelines relates to the regulation of pre-implantation genetic diagnosis (PGD). Prior to the review, the Guidelines stated that ‘pending further community discussion’, the technology should not be used to select in favour of a ‘genetic defect or disability in the person to be born’. The draft Guidelines released ahead of the public consultation have moved away from an emphasis on ‘community discussion’, to the statement that PGD ‘may not be used to select in favour of a genetic defect in the person who would be born’, therefore implying that a process of consultation has settled the issue of ‘pro-disability selection’.

This particular issue was not a focus of the Assisted Reproductive Technology (ART) Working Committee’s review, nor has it been the subject of community discussion in Australia. In this paper, I outline how the regulatory position against selecting in favour of genetic defects is something that requires appropriate consideration, thus necessitating engagement with appropriate stakeholders in the community. In particular, I do this by drawing upon the reform process in the UK where changes were made to the law without adequate public consultation, thus sparking significant criticism against the prohibition on pro-disability selection.


Biography

Dr Malcolm Smith is a Senior Lecturer at the QUT Law School. He is co-leader of the Children’s Health and Beginning of Life research program in the Australian Centre for Health Law Research. Malcolm’s research focuses on the law relating to children and medical treatment and the legal and ethical issues associated with assisted reproductive technology (ART), particularly embryo selection technologies. Malcolm’s current research project examines the regulation of cross-gender hormone therapy for the treatment of childhood gender dysphoria. Malcolm has published extensively in the area of children’s health and ART.

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