Psycho-social, ethical and legal arguments for and against the retrospective release of information about donors to donor-conceived individuals in Australia

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 donors who wish to exchange this information,     

Legal parent versus biological parent: the impact of disclosure

This article addresses arguments regarding disclosure of information to donor-conceived individuals, showing that disclosure is entirely different from the recognition of parental rights and responsibilities for the gamete providers. It argues that disclosure of information is not equivalent to saying: "donors are parents". Instead, information release simply provides a basis for donors, donor-conceived individuals and recipient parents to exchange information about themselves. When a jurisdiction enacts laws that provide for such information release, these statutes are distinct from any other legal rights and responsibilities for any members of the donor-conceived community. In its first section, the article briefly explains the means for determining legal parentage before reviewing research on how parents tell their children about their means of conception. Next, it explores studies of why members of the donor-conceived world search, providing an empirical basis for the claim that disclosure does not equal parenthood. The article explores concerns about information release, and, in the final section, suggests possible approaches for protecting the rights of donor-conceived people while reinforcing the legal separation between social and biological parents.     

Regulation of donor conception and the "time to tell" campaign

The first jurisdictions in the world to introduce legislation regulating donor conception were Victoria (Australia) and Sweden in the 1980s. Under the Infertility (Medical Procedures) Act 1984 (Vic), donor-conceived people (aged 18 years and over), their parents (if children were under 18 years) and donors gained the right to apply for identifying information about each other. Information can only be given with the consent of each party. To date, over 3,500 donor-conceived children have been born in Victoria since the 1984 Victorian legislation was introduced (and enacted in 1988). The first 106 donor-conceived children under this legislation turned 18 in 2006 and many of them may not know that they are donor-conceived. The Infertility Treatment Authority, Victoria, conducted a public education campaign to provide information and support to people affected by the legislation. The campaign and services associated with donor registers have had a significant initial impact.     

Donor-conceived individuals and access to information about their genetic origins: the relevance and role of rights

The discourse of rights has increasingly been used to frame debates about access to information for donor-conceived individuals. This article seeks to clarify the moral and legal basis upon which human rights are relevant to this issue. It outlines the elements of a substantive rights-based approach which is then used to resolve the competing rights of a donor and a donor-conceived individual. Three arguments are offered. First, donor anonymity must be prohibited prospectively and donor-conceived individuals must be entitled to information about their genetic parents. Secondly, a context-sensitive application of a human rights-based approach allows retrospective access to non-identifying information but precludes retrospective access to identifying information where a donor wishes to remain anonymous in circumstances where anonymity was guaranteed at the time of donation. Finally, despite this finding, a rights-based approach requires states to actively encourage such donors to consent to the release of identifying information and to take reasonable steps to support donor-conceived individuals in circumstances where donors refuse to provide their consent.     

Donor conception legislation in Victoria, Australia: the "Time to Tell" campaign, donor-linking and implications for clinical practice

The State of Victoria in Australia was one of the first jurisdictions in the world to introduce legislation regulating donor conception. Under the Infertility (Medical Procedures) Act 1984 (Vic), donor-conceived people, aged 18 years and over, parents of children under 18 years, and donors gained the right to apply for the release of identifying information about each other recorded in a Central Register. As a result, of this and subsequent legislation, services providing donor treatment were obliged to change clinical practice relating to recruitment of donors, counselling of donors and recipients and recordkeeping. Since this legislation was introduced in 1988, over 5,000 donor-conceived children have been born and in 2006 the first 100 of these children reached the age of 18. The Victorian Infertility Treatment Authority (ITA) conducted a public education campaign to provide information and support to people affected by the legislation. This article describes clinical practice changes prompted by legislation, the 'Time to Tell" campaign and the service model developed for linking parties on the donor registers. The Victorian experience demonstrates that laws allowing the parties involved in donor conception access to information about each other must be accompanied by changes to clinical practice, public education about the implications of the laws, and services to meet the needs of those seeking information relating to donor conception and those contacted as a result.     

Donor conception, secrecy and the search for information

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 and realisation of people's interests.     

Donor-conceived people's views and experiences of their genetic origins: a critical analysis of the research evidence

This article reports on a systematic review of English language, peer-reviewed publications from 13 empirical studies with donor-conceived children and adults regarding their experiences and perceptions of donor conception. A total of 19 articles that met the inclusion criteria were reviewed. These were identified by means of a bibliographic search of four electronic databases for the period 1990-2011 and supplemented by the authors' personal knowledge of work in this field. No reports from such studies appeared prior to 2000, and more than half have been published since 2008, demonstrating the relative novelty of research in this field. Much of the reviewed research evidence concerns individuals conceived through sperm donation conducted under a regime promoting both anonymity and nondisclosure. Consequently, there is little research that pertains to individuals conceived through other forms of collaborative reproduction, nor to those conceived under arrangements and regimes in which early parental disclosure is both advocated and practised and the identity of the donor and of other genetic relatives may be accessible to donor-conceived individuals. The studies consistently report that most donor-conceived people have an interest in securing information about their genetic and biographical heritage - more information than most of them have been able to obtain. Although a number of methodological limitations in the research base are identified, the authors conclude that the evidence is sufficiently robust to promote the implementation of policies and practices that promote transparency and openness in collaborative reproduction, thus reflecting the importance of maximising future choices and opportunities for donor-conceived people.     

Establishing Identity: How Direct‐to‐Consumer Genetic Testing Challenges the Assumption of Donor Anonymity

The rise of direct‐to‐consumer genetic testing is challenging the rules and expectations of the fertility industry concerning donor anonymity. While ethicists debate whose rights should prevail, many donor conceived people, recipient parents and donors are currently sharing their genetic information, along with methods to identify genetic links, in vast online communities, invalidating donor anonymity and providing a platform for those who advocate globally for legislative change to support donor‐linking practices. This article looks at why it is important to access this information in relation to identity and kinship formation and how the Family Court Community can apply this knowledge in order to achieve better outcomes for children and families.     

Direct‐to‐Consumer Genetic Testing,Gamete Donation,and the Law

Once thousands of dollars, direct‐to‐consumer (DTC) genetic testing has become affordable and readily accessible in recent years. The technology can reveal a wealth of information to consumers: health risks, ancestry composition, and connections to genetic matches through relative databases. However, the law has not yet regulated many aspects of this new technology. This article analyzes how the law should regulate DTC genetic testing within the context of gamete donation. It will argue that gamete donors’ privacy interests warrant state regulation of DTC genetic testing kits and their associated genetic relative databases. It will also explore how state regulation should balance the competing interests of gamete donors and of donor‐conceived individuals.     

Are we there yet? Best practices for diversity and inclusion in Australia

ABSTRACT

This article reports on the findings of a pilot research project investigating current best practices, operating within national law firms in Australia, that support women lawyers in their advancement to partnership and other leadership positions. Academic research and professional body reports suggest that current diversity and inclusion (D&I) initiatives across the private sector are not resulting in significant change to advancement, retention and attrition of women in the legal profession. However, work done by the Women Lawyers’ Association of New South Wales in Australia, through the Data Comparison Project (DCP), indicates that some firms have made better progress than others. Building on the DCP, this article presents the findings of a pilot project involving in-depth interviews with four of the top-achieving national law firms in Australia on gender equity criteria. It finds that these firms are collectively engaging with many of the best practice initiatives for D&I recommended by the current national and international research and scholarship, and in some instances go beyond international best practice. What is apparent, however, is that the current best practices have yet to achieve significant advancement of women, or to break through the glass ceilings that continue to operate for women in large Australian law firms.     

WORKING TOGETHER

Family Court of Australia has employed four Aboriginal Family Consultants within the Family Court Mediation Service in Darwin and Alice Springs. The consultants were selected from local indigenous people and assist indigenous families who are often in heated dispute over children following family breakdown and separation. The program ultimately seeks to promote access to justice for Aboriginal and Torres Stvait Islander people in the jurisdiction of family law. The program seeks to achieve this by assisting indigenous people to access and utilize the dispute resolution services provided by the Family Court. Family consultants work closely with court mediators in responding to the needs and issues of indigenous families in dispute. The article describes the model of intervention adopted and highlights the benefits of the program with reference to case studies.     

Barcelona 2002: law, ethics, and human rights. The need for harm-reduction approaches in Eastern Europe and the former Soviet Union

In a region where HIV is spread primarily by injection drug use, harm-reduction strategies must be the mainstay of prevention efforts. In her plenary presentation to the XIV International Conference on AIDS on 9 July 2002, Kasia Malinowska-Sempruch asserts that if the world does not turn its attention to the emerging and exploding epidemic in Eastern Europe and the former Soviet Union, the region will suffer the same fate as Africa. The presentation explains that while their economies continue to struggle, the countries in the region have seen their public health systems crumble in the face of the twin health crises of injection drug use and HIV infection. The presentation demonstrates how current repressive laws and practices with respect to drug use serve only to fuel the epidemic. It describes harm-reduction approaches (such as needle exchanges and drug-treatment programs) and provides examples of how NGOs in the region have been attempting to implement such approaches, often with little or no support from governments. Finally, the presentation outlines other measures required to respond to the epidemic in the region, including ensuring that people infected with HIV can access care, treatment, and support services.     

PROBLEMS AND SOLUTIONS IN THE MANAGEMENT OF CHILD ABUSE ALLEGATIONS IN CUSTODY AND ACCESS DISPUTES IN THE FAMILY COURT

Child abuse allegations in custody and access disputes are serious matters and present family courts worldwide with major problems. This article reports a large research study just completed that investigated the way the Family Court of Australia managed child abuse cases. The study showed that such cases had become a substantial part of the court's current workload, their "core business" in fact. The families involved had many difficulties, including a history of family violence, and the present system was not appropriate for their particular problems. Thus, as new specialized court lead model of intervention was devised, based on principles relevant to family violence and incorporating the most effective strategies identified in the research.     

The donor-conceived child's "Right to Personal Identity": the public debate on donor anonymity in the United Kingdom

On 1 April 2005, with the implementation of the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004, United Kingdom law was changed to allow children born through gamete donation to access details identifying the donor. Drawing on trends in adoption law, the decision to abolish donor anonymity was strongly influenced by a discourse that asserted the ‘child's right to personal identity’. Through examination of the donor anonymity debate in the public realm, while adopting a social constructionist approach, this article discusses how donor anonymity has been defined as a social problem that requires a regulative response. It focuses on the child's ‘right to personal identity’ claims, and discusses the genetic essentialism behind these claims. By basing its assumptions on an adoption analogy, United Kingdom law ascribes a social meaning to the genetic relatedness between gamete donors and the offspring.     

The Quest for Recompense: Claimants' Experience of Medical Negligence Compensation in Victoria,Australia*

This paper reports a study investigating the experiences of people who perceived that they had suffered a health or medical care injury in Victoria, Australia. A particular focus was their experience with the process of seeking compensation. The research strategy involved a preliminary questionnaire and in-depth interviewing of the participants and, where possible, their families. We describe the type of injury reported by the participants, experiences with health care providers and lawyers and attitudes to the current system of compensation. The severity of injury sustained by these participants was often severe, involving permanent incapacity and psychological distress. We conclude that the quest for recompense is fraught with difficulties for claimants. The present system of compensation neither provides adequate financial compensation nor - even where claimants are successful - acknowledgement of the legitimacy of their claim.     

As outcomes measurement and management become widespread, providers should beware of legal pitfalls

Until new statutes and court decisions clarify the law applicable to outcomes research, providers will continue to face new questions. In the meantime, paying careful attention to satisfying the requirements of existing laws protecting peer review information will put providers in the best position to minimize their exposure. Providers should review their current outcomes measurement and management systems to ensure that (1) they are structured to take full advantage of the confidentiality protections available under state law, and (2) appropriate access to outcomes data for those who need it is clearly provided for in the relevant documentation.     

The Relation of Parenting Styles and Inconsistencies to Adaptive Functioning for Children in Conflictual and Violent Families

Research of parenting in conflictual and violent families suggests that battered mothers (i.e., those experiencing verbal and/or physical abuse by their partner) may not parent very differently from demographically similar nonbattered mothers. However, battered mothers do report being less consistent in their discipline. In the present study, 104 mothers and their children from community nonviolent and violent families and shelter violent and violent abusive families participated in interviews to obtain information about child functioning and authoritative, authoritarian, and permissive parental practices. It was the case that authoritative practices were associated with more positive child functioning and that parental inconsistency, defined in terms of endorsing conflictual parenting practices, was associated with poorer child outcome. Groups of mothers were identified that fit different patterns of parenting practices, and these patterns were differentially related to children's functioning.     

Human genetic research databases and biobanks: towards uniform terminology and Australian best practice

This article examines international best practice for the establishment, maintenance and use of human genetic research databases (HGRDs), particularly focusing on large-scale population biobanks, and considers the measures that should be taken in Australia to comply with this best practice. These HGRDs play a pivotal role in basic research aimed at understanding the basis of human disease at the genetic level, and applied research aimed at putting that basic knowledge into practical application. In particular, the large-scale biobanks are vital research tools in the drive to uncover the causes and consequences of human health and disease. Biobanks are being established at regional, national and international levels throughout the world. Although their governance structures are uniformly complex, some best practices are emerging with regard to consent (particularly consent to future research and withdrawal of consent), privacy and data protection and intellectual property ownership and access. Best practices with regard to benefit-sharing are emerging much more slowly. This article reviews these international best practices with the aim of providing guidance for the development of appropriate regulatory structures in Australia.     

Environmentalism and the internet: corporate greenwashers and environmental groups

Environmental degradation is a serious problem, for current populations and for future generations. Corporations are the largest offenders but seldom face the consequences of their actions. This article proposes that public relations campaigns and conflicting information on the internet pose significant challenges to calling for environmental accountability from corporations. Three companies – Coca‐Cola, Georgia Pacific, and Shell – are examined here in terms of questionable practices and public relations campaigns. While the internet could be an alternative news source, ‘corporate greenwash’ muffles a definitive voice on environmental issues. Both retributive and restorative justice processes are thwarted by misleading information. Despite environmental laws and efforts to increase accountability, calling for necessary change will continue to be exceedingly difficult without public knowledge of corporate behavior.     

CHILD CUSTODY EVALUATION PRACTICES: A 20‐YEAR FOLLOW‐UP

This study surveyed 213 experienced child custody evaluators utilizing the same questionnaire in the Ackerman & Ackerman 1997 and Keilin & Bloom 1986 studies. Demographic information, evaluation practices, custody decision‐making, and recommendations were surveyed. Comparisons were made across all three studies to identify the similarities and differences in child custody evaluation practices over the past 20 years. This study added questions about risk management and ethical issues, and current practices in placement/access schedules. The reader is advised that not engaging in the practices performed by a majority of psychologists could result in a difficult testimony experience.