Children diagnosed with cancer who require treatment with chemotherapy and/or radiation therapy h... more Children diagnosed with cancer who require treatment with chemotherapy and/or radiation therapy have ever-increasing survival rates. However, as a result of such treatment they face the added, and significant, burden of infertility into their futures. Options for fertility preservation and future reproduction for such children do exist, but some such options continue to be considered experimental. Collaborative multidisciplinary teams support children and their families to make decisions about such options in the treatment environment. When collection of gonadal tissue from children is consented to in such circumstances, it is subject to stringent institutional clinical and human research ethics review, often in both the pediatric oncology setting and the fertility setting in which it will be preserved, examined and, potentially, used. Laws and guidelines may support the collection and use of reproductive tissue from children for treatment and research, subject to meeting consent requirements concerning the child and/or their parent(s). This article examines such laws across Australia.
In 2009 the South Australian Government introduced significant changes to the Assisted Reproducti... more In 2009 the South Australian Government introduced significant changes to the Assisted Reproductive Treatment Act 1988 (SA) (the Act). Changes to the Act came into effect on 1 September 2010. To ensure that those changes were evaluated over time, the Government included a requirement that the operation and effectiveness of the Act be reviewed after the fifth anniversary of the changes to the Act. The Minister for Health appointed Associate Professor Sonia Allan, an expert in the regulation of assisted reproductive technologies and donor conception, to conduct a review into the Act. The review focused on the operation and effectiveness of the Act in relation to the regulatory model adopted; the requirement that the welfare of any child born as a consequence of assisted reproductive treatment (ART) is to be treated as being of paramount importance, and accepted as a fundamental principle, in respect of the operation of the Act, as well as in the provision of assisted reproductive treatment; amending eligibility for access to ART services; allowing for the establishment of a donor conception register; and provisions for record keeping and confidentiality.
Public health is not only concerned with curing illness and disease but is also about preventing ... more Public health is not only concerned with curing illness and disease but is also about preventing disease, illness and injury, and promoting the quality of life of human populations. The field of public health takes an organised approach to enable people to realise health and longevity. Factors including, but not limited to, environmental issues and infectious diseases, as well as personal well-being, and the social dimensions of health must all be considered to achieve health as a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity’. The great challenge then becomes how to achieve health for all at a local, national, and global scale. This chapter considers the scope and role of the law in this challenge and provides examples of the law in practice as a mechanism to prevent and/or combat communicable and non-communicable disease.
Assisted reproduction and related existing and emerging technologies, once only imagined, are eve... more Assisted reproduction and related existing and emerging technologies, once only imagined, are ever increasing. While providing positive outcomes for some in assisting them to have children, they challenge society and push boundaries in a number of ways. There may be medical risks and implications for people undergoing treatment and for the children born as a result. There are also significant ethical, social and legal issues raised. Questions concerning not only where to draw the line between what should be permitted or prohibited, but also how best to govern the practice are continually raised. This chapter focuses on a number of such issues and outlines relevant law, guidelines, and self-regulatory mechanisms that all serve to govern ART in Australia and its respective states and territories. It highlights the complexity of some such issues and the role of effective governance in enabling ART to proceed while establishing the bounds within which society has said it may. It also highlights the need for flexibility in regulation in order to be able to respond to rapidly changing science that brings great hope while also posing new challenges into the future.
In February 2016, new legislation was passed in Victoria that enables all donor-conceived people ... more In February 2016, new legislation was passed in Victoria that enables all donor-conceived people to obtain identifying information about their sperm, oocyte or embryo donors. This article describes the importance of this legislation, its history and development, how it will operate, and the requirements for information release. This new legislation - known as ‘Narelle's Law’ - is very progressive and provides a model approach for other countries and jurisdictions.
Donor conception has historically been shrouded in secrecy. Such secrecy has been underpinned by ... more Donor conception has historically been shrouded in secrecy. Such secrecy has been underpinned by social views and legal issues concemrning the adults involved in the process--the donor, the recipient parent(s), and, at times, the doctor. However, there is increasing recognition of the need to focus upon donor-conceived people's interests and rights to have identifying and non-identifying information about their donors. This editorial examines issues raised in relation to information release, while also introducing some of the arguments presented by other authors in this Special Issue of the JLM. It also considers recent Australian federal and State government inquiries that have favoured information release and the former Victorian Infertility Treatment Authority's service model to support people in the process of information access and release. While there has been a clear shift to favouring openness and honesty, legislative action is still required to ensure the balancing ...
While assisted reproductive treatment using donated gametes is widespread, and in many places, wi... more While assisted reproductive treatment using donated gametes is widespread, and in many places, widely accepted, it has historically been shrouded in secrecy. Over time, however, there has been an increasing call from donor-conceived people, recipient parents and some donors to end the secrecy, and to release identifying information about donors to donor-conceived people. "Rights-based" arguments have at times been used to justify this call. This article examines whether a human rights framework supports the release of information and how such a framework might be applied when there are competing rights. It argues that the current balancing approach used to resolve such issues weighs in favour of release. Legal action has the potential to be legitimate and justifiable. A measure such as a contact veto system, which would serve to prevent unwanted contact with the person lodging the veto (either the donor or the donor-conceived person), would ensure proportionality. In this ...
Two Australian government inquiries have recently called for the release of information to donor-... more Two Australian government inquiries have recently called for the release of information to donor-conceived people about their gamete donors. A national inquiry, recommended 'as a matter of priority' that uniform legislation to be passed nationwide. A state-based inquiry argued that all donor-conceived people should have access to information and called for the enactment of retrospective legislation that would override donor anonymity. This paper responds to an opinion piece published in Human Reproduction in October 2012 by Professor Pennings in which he criticized such recommendations and questioned the motives of people that advocate for information release. I answer the arguments of Pennings, and argue that all parties affected by donor conception should be considered, and a compromise reached. The contact veto system is one such compromise. I discuss the education and support services recommended by the Victorian government and question Pennings' assertions that legislation enabling information release will lead to a decrease in gamete donation. Finally, I rebut Pennings' assertion that there is a 'hidden agenda' behind the call for information release. There is no such agenda in my work. If there is from others, then it is their discriminatory views that need to be addressed, not the move toward openness and honesty or the call for information by donor-conceived people.
Genealogy 1 is the tracing of a line of descent continuously from an ancestor. 2 When conducted b... more Genealogy 1 is the tracing of a line of descent continuously from an ancestor. 2 When conducted by individuals or families, it has been said to be a narrative of how outside forces shape an individual, a journey to build the story of one's own becoming. 3 It involves the quest to identify the people to whom an individual shares connections, the quest to trace lineage, family, history and kinship. This paper examines the tracing of such lineage, family, history and kinship by donor-conceived people.
Every state and territory in Australia has legislation the object of which is to provide legal ce... more Every state and territory in Australia has legislation the object of which is to provide legal certainty regarding the status of children and their parents. Such legislation was introduced in all jurisdictions in the 1970s to address the stigmatisation of children born to women who were not married and to remove notions of ‘illegitimacy’. There have been significant social changes since the inception of these Acts. Forty years later it is now common place that Australian families come in all shapes and sizes. Children may be parented by their biological parent(s) or they may have adoptive parents, foster parents, or live in blended families. The people who parent them may be heterosexual or gay, lesbian, bisexual or transgender (‘GLBT’). They may be single, married, in heterosexual de facto or same-sex relationships. While the law has been slow to recognise legal parentage in some of these circumstances it is now the case that changes to laws in federal and most state/territory juri...
Children diagnosed with cancer who require treatment with chemotherapy and/or radiation therapy h... more Children diagnosed with cancer who require treatment with chemotherapy and/or radiation therapy have ever-increasing survival rates. However, as a result of such treatment they face the added, and significant, burden of infertility into their futures. Options for fertility preservation and future reproduction for such children do exist, but some such options continue to be considered experimental. Collaborative multidisciplinary teams support children and their families to make decisions about such options in the treatment environment. When collection of gonadal tissue from children is consented to in such circumstances, it is subject to stringent institutional clinical and human research ethics review, often in both the pediatric oncology setting and the fertility setting in which it will be preserved, examined and, potentially, used. Laws and guidelines may support the collection and use of reproductive tissue from children for treatment and research, subject to meeting consent requirements concerning the child and/or their parent(s). This article examines such laws across Australia.
In 2009 the South Australian Government introduced significant changes to the Assisted Reproducti... more In 2009 the South Australian Government introduced significant changes to the Assisted Reproductive Treatment Act 1988 (SA) (the Act). Changes to the Act came into effect on 1 September 2010. To ensure that those changes were evaluated over time, the Government included a requirement that the operation and effectiveness of the Act be reviewed after the fifth anniversary of the changes to the Act. The Minister for Health appointed Associate Professor Sonia Allan, an expert in the regulation of assisted reproductive technologies and donor conception, to conduct a review into the Act. The review focused on the operation and effectiveness of the Act in relation to the regulatory model adopted; the requirement that the welfare of any child born as a consequence of assisted reproductive treatment (ART) is to be treated as being of paramount importance, and accepted as a fundamental principle, in respect of the operation of the Act, as well as in the provision of assisted reproductive treatment; amending eligibility for access to ART services; allowing for the establishment of a donor conception register; and provisions for record keeping and confidentiality.
Public health is not only concerned with curing illness and disease but is also about preventing ... more Public health is not only concerned with curing illness and disease but is also about preventing disease, illness and injury, and promoting the quality of life of human populations. The field of public health takes an organised approach to enable people to realise health and longevity. Factors including, but not limited to, environmental issues and infectious diseases, as well as personal well-being, and the social dimensions of health must all be considered to achieve health as a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity’. The great challenge then becomes how to achieve health for all at a local, national, and global scale. This chapter considers the scope and role of the law in this challenge and provides examples of the law in practice as a mechanism to prevent and/or combat communicable and non-communicable disease.
Assisted reproduction and related existing and emerging technologies, once only imagined, are eve... more Assisted reproduction and related existing and emerging technologies, once only imagined, are ever increasing. While providing positive outcomes for some in assisting them to have children, they challenge society and push boundaries in a number of ways. There may be medical risks and implications for people undergoing treatment and for the children born as a result. There are also significant ethical, social and legal issues raised. Questions concerning not only where to draw the line between what should be permitted or prohibited, but also how best to govern the practice are continually raised. This chapter focuses on a number of such issues and outlines relevant law, guidelines, and self-regulatory mechanisms that all serve to govern ART in Australia and its respective states and territories. It highlights the complexity of some such issues and the role of effective governance in enabling ART to proceed while establishing the bounds within which society has said it may. It also highlights the need for flexibility in regulation in order to be able to respond to rapidly changing science that brings great hope while also posing new challenges into the future.
In February 2016, new legislation was passed in Victoria that enables all donor-conceived people ... more In February 2016, new legislation was passed in Victoria that enables all donor-conceived people to obtain identifying information about their sperm, oocyte or embryo donors. This article describes the importance of this legislation, its history and development, how it will operate, and the requirements for information release. This new legislation - known as ‘Narelle's Law’ - is very progressive and provides a model approach for other countries and jurisdictions.
Donor conception has historically been shrouded in secrecy. Such secrecy has been underpinned by ... more Donor conception has historically been shrouded in secrecy. Such secrecy has been underpinned by social views and legal issues concemrning the adults involved in the process--the donor, the recipient parent(s), and, at times, the doctor. However, there is increasing recognition of the need to focus upon donor-conceived people's interests and rights to have identifying and non-identifying information about their donors. This editorial examines issues raised in relation to information release, while also introducing some of the arguments presented by other authors in this Special Issue of the JLM. It also considers recent Australian federal and State government inquiries that have favoured information release and the former Victorian Infertility Treatment Authority's service model to support people in the process of information access and release. While there has been a clear shift to favouring openness and honesty, legislative action is still required to ensure the balancing ...
While assisted reproductive treatment using donated gametes is widespread, and in many places, wi... more While assisted reproductive treatment using donated gametes is widespread, and in many places, widely accepted, it has historically been shrouded in secrecy. Over time, however, there has been an increasing call from donor-conceived people, recipient parents and some donors to end the secrecy, and to release identifying information about donors to donor-conceived people. "Rights-based" arguments have at times been used to justify this call. This article examines whether a human rights framework supports the release of information and how such a framework might be applied when there are competing rights. It argues that the current balancing approach used to resolve such issues weighs in favour of release. Legal action has the potential to be legitimate and justifiable. A measure such as a contact veto system, which would serve to prevent unwanted contact with the person lodging the veto (either the donor or the donor-conceived person), would ensure proportionality. In this ...
Two Australian government inquiries have recently called for the release of information to donor-... more Two Australian government inquiries have recently called for the release of information to donor-conceived people about their gamete donors. A national inquiry, recommended 'as a matter of priority' that uniform legislation to be passed nationwide. A state-based inquiry argued that all donor-conceived people should have access to information and called for the enactment of retrospective legislation that would override donor anonymity. This paper responds to an opinion piece published in Human Reproduction in October 2012 by Professor Pennings in which he criticized such recommendations and questioned the motives of people that advocate for information release. I answer the arguments of Pennings, and argue that all parties affected by donor conception should be considered, and a compromise reached. The contact veto system is one such compromise. I discuss the education and support services recommended by the Victorian government and question Pennings' assertions that legislation enabling information release will lead to a decrease in gamete donation. Finally, I rebut Pennings' assertion that there is a 'hidden agenda' behind the call for information release. There is no such agenda in my work. If there is from others, then it is their discriminatory views that need to be addressed, not the move toward openness and honesty or the call for information by donor-conceived people.
Genealogy 1 is the tracing of a line of descent continuously from an ancestor. 2 When conducted b... more Genealogy 1 is the tracing of a line of descent continuously from an ancestor. 2 When conducted by individuals or families, it has been said to be a narrative of how outside forces shape an individual, a journey to build the story of one's own becoming. 3 It involves the quest to identify the people to whom an individual shares connections, the quest to trace lineage, family, history and kinship. This paper examines the tracing of such lineage, family, history and kinship by donor-conceived people.
Every state and territory in Australia has legislation the object of which is to provide legal ce... more Every state and territory in Australia has legislation the object of which is to provide legal certainty regarding the status of children and their parents. Such legislation was introduced in all jurisdictions in the 1970s to address the stigmatisation of children born to women who were not married and to remove notions of ‘illegitimacy’. There have been significant social changes since the inception of these Acts. Forty years later it is now common place that Australian families come in all shapes and sizes. Children may be parented by their biological parent(s) or they may have adoptive parents, foster parents, or live in blended families. The people who parent them may be heterosexual or gay, lesbian, bisexual or transgender (‘GLBT’). They may be single, married, in heterosexual de facto or same-sex relationships. While the law has been slow to recognise legal parentage in some of these circumstances it is now the case that changes to laws in federal and most state/territory juri...
In the February 2011 report on its inquiry into the past and present practices of donor conceptio... more In the February 2011 report on its inquiry into the past and present practices of donor conception in Australia, the Australian Senate Legal and Constitutional Affairs References Committee called for the introduction of legislation to regulate donor conception in all jurisdictions that do not have it in place "as a matter of priority". It further called for the establishment, "as a matter of priority", of a national register of donors to enable donor-conceived individuals to access identifying information about their donor. The Senate Committee left open the question as to whether the legislation and central register should have retrospective effect. This article focuses upon that question. It shows that arguments concerning the privacy, confidentiality and anonymity of some donors who may wish to remain anonymous are outweighed by the manifest injustice faced by donor-conceived individuals who are denied access to such information, as well as their families and ...
The use of assisted reproductive treatment (ART) to conceive a child provides the opportunity for... more The use of assisted reproductive treatment (ART) to conceive a child provides the opportunity for the state and/or medical practitioners to play a role in deciding who should or should not become a parent. This article explores the primary criteria used to ‘screen’ people wishing to use ART and to exclude them from treatment in some circumstances. It argues that idiosyncratic judgment or general legal presumptions against treatment are not satisfactory, as they are unlikely to predict whether the best interests of a child born as a result of ART will be compromised. Rather, such judgements may serve to be discriminatory, and are often misinformed. The author suggests that the law and society should rather serve to support children and parents in need, and to protect existing children from actual suffering or ‘unacceptable risks’ of harm.
Non-ketotic hyperglycinaemia (NKH) is a devastating neurometabolic disorder leading, in its class... more Non-ketotic hyperglycinaemia (NKH) is a devastating neurometabolic disorder leading, in its classical form, to early death or severe disability and poor quality of life in survivors. Affected neonates may need ventilatory support during a short period of respiratory depression. The transient dependence on ventilation dictates urgency in decision-making regarding withdrawal of therapy. The occurrence of patients with apparent transient forms of the disease, albeit rare, adds uncertainty to the prediction of clinical outcome and dictates that the current practice of withholding or withdrawing therapy in these neonates be reviewed. Both bioethics and law take the view that treatment decisions should be based on the best interests of the patient. The medical-ethics approach is based on the principles of non-maleficence, beneficence, autonomy and justice. The law relating to withholding or withdrawing life-sustaining treatment is complex and varies between jurisdictions. Physicians treating newborns with NKH need to provide families with accurate and complete information regarding the disease and the relative probability of possible outcomes of the neonatal presentation and to explore the extent to which family members are willing to take part in the decision making process. Cultural and religious attitudes, which may potentially clash with bioethical and juridical principles, need to be considered.
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