The meaning of "serious disability" in the legal regulation of prenatal and neonatal decision-making.
The concept of "serious disability" appears to play a significant role in circumscribing treatment-limiting decisions in neonatal care, prenatal counselling, preimplantation genetic diagnosis, and abortion following prenatal diagnosis. However, there is no legal definition for this concept and its meaning varies among members of the community and the medical profession. Legal and policy responses to "serious disability" consist of an assortment of ethical guidelines, specific legislative frameworks and longstanding provisions of the criminal law, some of which were neither enacted nor developed with modern medical practices and dilemmas in mind. In addition, many of these regulatory frameworks and prohibitions vary between State and Territory jurisdictions. This leaves service providers, families wishing to utilise (or avoid utilising) diagnostic technologies and the broader community uncertain about the legal limits. This uncertainty has implications for women's autonomy in reproductive decision-making. For instance, services may be withheld, or their use encouraged, depending on differing understandings of the concept of "serious disability". The time has arrived for governments to consider whether it is appropriate to introduce a uniform set of guidelines and/or regulations across Australia for guiding clinical determinations of "serious disability".
Savell
Kristin
K
Faculty of Law, University of Sydney, 173-175 Phillip St, Sydney, NSW 2000, Australia.
Karpin
Isabel
I
D000013:Congenital Abnormalities; D003657:Decision Making; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D011247:Pregnancy; D019836:Preimplantation Diagnosis; D011296:Prenatal Diagnosis