Women's autonomy and reproductive responsibilities during the course of assisted reproductive technology : an analysis using three hypothetical scenarios that have resulted in the birth of a disabled child

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This thesis examines, whether it is appropriate to hold a woman ethically or legally responsible for decisions made by her during assisted reproductive technology (ART) treatment that result in disability in the child born subsequently. This question is explored through three hypothetical scenarios that are fictional narrations of potentially real-life clinical situations that could occur within an ART procedure. They are used to illustrate the ethical and legal issues that may arise and involve the following different circumstances: The first scenario involves a single woman using donor sperm in New South Wales (NSW). The second scenario concerns a couple using their own gametes in Victoria (VIC), where the woman has an undisclosed genetic condition. In the third scenario, a NSW couple uses their own gametes and, after the birth, they discover that the woman and the child have a genetic condition. As a non-lawyer, my aim is to apply a feminist bioethical lens to selected laws that regulate this area, rather than to provide a comprehensive account and critique of those laws. Prior to undertaking this thesis I completed a Master of Science at the University of Geneva, focusing on how medical responsibility was assigned to the health professionals involved in six Swiss court cases where there was an unwanted birth (including both an able bodied and a disabled child). In this project I build on my previous Master’s research along with my professional expertise as a midwife, to develop a thesis which focuses on the legal and ethical rights and responsibilities of women. I draw on feminist, disability and bioethics scholarship and examine selected points of ART legislation and regulation in Australia. This thesis establishes that the new challenges posed by ART, the increased opportunities for decision-making throughout ART processes, and the involvement of multiple decision-makers, have raised novel considerations about health risks and ethical responsibilities that have a major impact on a woman’s reproductive autonomy. The majority of the legislation, regulations and guidelines I analyse are silent about the woman and her legal rights and responsibilities, instead focussing on the responsibilities of the clinics. I argue that, though it is sometimes beneficial for women to be absent from the law, ultimately the law should directly address a woman’s rights and responsibilities in order to grant her the rightful place she deserves as central to reproduction and also to protect and guarantee her rights and interests. In the documents consulted here, the woman, who is a key player and decision-maker in the reproduction process, is conspicuously absent. The thesis demonstrates that holding a woman ethically responsible at every decision-making point in ART will result in an unfair, onerous increase in her responsibility and transgress her reproductive autonomy. The thesis argues that a complex balance is needed between the interests and rights of the woman, the interests of the future child, concerns based on the rights and interests of people living with a disability and the more general values of non-discrimination and diversity of life. All these factors are essential considerations as they have an impact on a woman’s decision-making processes within ART.
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