Time for a national approach to donor conception in Australia

There is a growing recognition of the interests and rights of individuals conceived using donated gametes in assisted reproductive technology to information about their biological parentage. In Australia these rights vary between jurisdictions according to differing statutory provisions. In February 2011 the Senate's Legal and Constitutional Affairs References Committee published its report on Donor Conception Practices in Australia. The report recommended the development of a nationally consistent approach to donor conception and recommended the enactment of legislation in those Australian jurisdictions without legislation regulating donor conception. This editorial reviews the Senate Committee report and its recommendations and supports calls for a nationally harmonised approach to donor conception in Australia.

Donor conception and disclosure : an anthropological study

The study, carried out within an infertility support group, concern disclosure of donor conception and its possible effects upon our constructions of conception, kinship and identity. It also examines perceptions of rights, information and its access or denial, knowledge/power, secrecy and the medicalization of reproduction.

Confronting the conspiracy of silence and denial of difference for late discovery adoptive persons and donor conceived people

This article outlines the impact that a conspiracy of silence and denial of difference has had on some adopted and donor conceived persons who have been lied to or misled about their origins. Factors discussed include deceit - expressed as a central secret which undermines the fabric of a family and through distortion mystifies communication processes; the shock of discovery - often revealed accidentally and the associated sense of betrayal when this occurs; and a series of losses, for example, kinship, medical history, culture and agency which result in having to rebuild personal identity. By providing those affected with a voice, validation and vindication healing can begin. Any feelings of disregard, of betrayal of trust, of anger, frustration, sorrow or loss, need to be regarded as real, expected, and above all, a valid reaction to what has occurred. The author is a 'late discoverer' of her adoption and draws on the information from her doctoral research on the same topic which was completed in 2012.

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.

Donor identification 'kills gamete donation'? A response

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.

A critical analysis of sperm donation practices : the personal and social effects of disrupting the unity of biological and social relatedness for the offspring

This thesis critically analyses sperm donation practices from a child-centred perspective. It examines the effects, both personal and social, of disrupting the unity of biological and social relatedness in families affected by donor conception. It examines how disruption is facilitated by a process of mediation which is detailed using a model provided by Sunderland (2002). This model identifies mediating movements - alienation, translation, re-contextualisation and absorption - which help to explain the powerful and dominating material, and social and political processes which occur in biotechnology, or in reproductive technology in this case. The understanding of such movements and mediation of meanings is inspired by the complementary work of Silverstone (1999) and Sunderland. This model allows for a more critical appreciation of the movement of meaning from previously inalienable aspects of life to alienable products through biotechnology (Sunderland, 2002). Once this mediation in donor conception is subjected to critical examination here, it is then approached from different angles of investigation. The thesis posits that two conflicting notions of the self are being applied to fertility-frustrated adults and the offspring of reproductive interventions. Adults using reproductive interventions receive support to maximise their genetic continuity, but in so doing they create and dismiss the corresponding genetic discontinuity produced for the offspring. The offspring’s kinship and identity are then framed through an experimental postmodernist notion, presenting them as social rather than innate constructs. The adults using the reproductive intervention, on the other hand, have their identity and kinship continuity framed and supported as normative, innate, and based on genetic connection. This use of shifting frameworks is presented as unjust and harmful, creating double standards and a corrosion of kinship values, connection and intelligibility between generations; indeed, it is put forward as adult-centric. The analysis of other forms of human kinship dislocation provided by this thesis explores an under-utilised resource which is used to counter the commonly held opinion that any disruption of social and genetic relatedness for donor offspring is insignificant. The experiences of adoption and the stolen generations are used to inform understanding of the personal and social effects of such kinship disruption and potential reunion for donor offspring. These examples, along with laws governing international human rights, further strengthen the appeal here for normative principles and protections based on collective knowledge and standards to be applied to children of reproductive technology. The thesis presents the argument that the framing and regulation of reproductive technology is excessively influenced by industry providers and users. The interests of these parties collide with and corrode any accurate assessments and protections afforded to the children of reproductive technology. The thesis seeks to counter such encroachments and concludes by presenting these protections, frameworks, and human experiences as resources which can help to address the problems created for the offspring of such reproductive interventions, thereby illustrating why these reproductive interventions should be discontinued.

How I Got Pregnant

Travail créatif / Creative Work

Desenvolvimento e Estudo da Validade Facial do Questionário de Motivações para Revelar/Não Revelar a Parentalidade Não-Genética por Doação de Gâmetas

Introdução: A parentalidade é um papel muito valorizado socialmente. No entanto, para casais com infertilidade o desempenho deste papel pode implicar tratamentos de fertilidade, alguns deles com recurso a gâmetas de dador. Para os casais que recorrem a gâmetas de dador, surge uma outra preocupação: contar à criança a origem da sua conceção ou manter segredo. Ainda que as motivações que influenciam este processo de decisão tenham sido alvo de estudo, em Portugal a investigação relativa a este tema é escassa. Objetivos: A presente investigação pretendeu desenvolver e estudar a validade facial do Questionário de Motivações para Revelar/Não Revelar a Parentalidade não Genética por Doação de Gâmetas (QMRDG), o qual se destina a avaliar as principais motivações que influenciam o processo de tomada de decisão dos pais que recorrem a gâmetas de dador relativamente a contar ou não contar ao/à seu/sua filho/a a origem da sua conceção. Pretendeu-se ainda explorar a relação entre os sintomas emocionais negativos e o sentido de competência parental nos diferentes grupos em estudo (pais que já contaram à criança, pais que decidiram não contar e pais que ainda não contaram). Metodologia: Estudo exploratório conduzido numa amostra de 21 participantes que recorrem a tratamento de fertilidade com recurso a gâmetas de dador, tendo tido filhos resultantes desse mesmo tratamento, com idades compreendidas entre os 30 e 49 anos. Os participantes preencheram um conjunto de questionários numa plataforma online, tendo o estudo sido divulgado pela Associação Portuguesa de Fertilidade. Resultados: Os dados obtidos indicam que a maioria dos pais ainda não contou ao/à seu/sua filho/a sua origem genética devido ao facto de a criança ser ainda muito pequena, encontrando-se estes com intenção de revelar à criança. Dos pais que já contaram, as motivações que mais influenciaram a decisão basearam-se na falta de motivos para omitir, na importância dada à honestidade, no direito do conhecimento das origens genéticas e na transparência no seio familiar. Face às motivações para não contar, das que mais influenciaram os pais salienta-se a pouca importância dada à genética. O QMRDG revelou possuir validade facial não tendo sido reportada a existência de itens ambíguos ou de difícil compreensão. Discussão: A tendência dos pais no presente estudo foi de contar ao/à seu/sua filho/a a origem da sua conceção, sendo também esta a tendência reportada em estudos mais recentes. Verificou-se a existência de algumas limitações no estudo, nomeadamente o tamanho da amostra. No entanto, o QMRDG mostrou possuir validade facial, podendo constituir-se como um instrumento útil na prática clínica e na investigação com pessoas que estejam a realizar tratamento de fertilidade com recurso a gâmetas de dador. / Introduction: Parenting is a highly valued social role. However, for couples dealing with infertility this role can involve fertility treatments, and for some of them donorassisted reproduction. For couples who use third party reproduction, another concern can emerge: tell the child about the donor conception, or preserve secrecy. Although arguments for decision making have been studied, in Portugal research on this topic is scanty. Objectives: The current study sought out to develop and study the facial validity of Motivations for Disclosing/Not Disclosing Non-genetic Parenthood through Gamete Donation (QMRDG), which is designed to assess motivations that influence the decision-making process of parents who use gamete donation regarding tell or not to tell to his/her son/daughter his/her conception. The existence of differences concerning emotional negative symptoms and parenting sense of competence in three groups (parents that already disclosed, parents that decided not to disclose and parents that did not decide what to do) was also explored. Methods: This exploratory study was conducted in sample of 21 participants who undergone third-party reproduction treatment and became parents. Participants´ age ranged from 30 to 49 years. Participants completed a set of questionnaires through an online platform. The study was advertised by Associação Portuguesa de Fertilidade. Results: Data showed that most parents did not disclose to their child their donor conception due to the fact that the child is still very young, but their intention seems to be to disclose in the future. For parents who have disclosed, core motivations for that decision are based on the lack of reasons for omitting, on the importance of honesty, on the right to know genetic origins and on transparency in the family. Concerning motivations for not disclosing the little importance given to genetics emerges as one of the most important ones. QMRDG revealed good facial validity. The existence of ambiguous or difficult to understand items has not been reported. Discussion: In our study parent’s tendency was to disclose to his/her son/daughter his/her donor conception and this is also the trend reported in recent studies. There are some methodological limitations that should be considered mainly due to the sample size. However, the QMRDG proved to be an instrument showing facial validity, and it can be a useful tool in clinical practice and research with people who are pursuing fertility treatment with gamete donation.

Listening to late discovery adoption and donor offspring stories : adoption, ethics and implications for contemporary donor insemination practices

For most of the 20th Century a ‘closed’ system of adoption was practised throughout Australia and other modern Western societies. This ‘closed’ system was characterised by sealed records; amended birth certificates to conceal the adoption, and prohibited contact with all biological family. Despite claims that these measures protected these children from the taint of illegitimacy the central motivations were far more complex, involving a desire to protect couples from the stigma of infertility and to provide a socially acceptable family structure (Triseliotis, Feast, & Kyle, 2005; Marshall & McDonald, 2001). From the 1960s significant evidence began to emerge that many adopted children and adults were experiencing higher incidences of psychological difficulties, characterised by problems with psychological adjustment, building self-esteem and forming a secure personal identity. These difficulties became grouped under the term ‘genealogical bewilderment’. As a result, new policies and practices were introduced to try to place the best interests of the child at the forefront. These changes reflected new understandings of adoption; as not only an individual process but also as a social and relational process that continues throughout life. Secrecy and the withholding of birth information are now prohibited in the overwhelming majority of all domestic adoptions processed in Australia (Marshall & McDonald, 2001). One little known consequence of this ‘closed’ system of adoption was the significant number of children who were never told of their adoptive status. As a consequence, some have discovered or had this information disclosed to them, as adults. The first study that looked at the late discovery of genetic origins experiences was conducted by the Post Adoption Resource Centre in New South Wales in 1999. This report found that the participants in their study expressed feelings of disbelief, confusion, anger, sorrow and loss. Further, the majority of participants continued to struggle with issues arising from this intentional concealment of their genetic origins (Perl & Markham, 1999). A second and more recent study (Passmore, Feeney & Foulstone, 2007) looked at the issue of secrecy in adoptive families as part of a broader study of 144 adult adoptees. This study found that secrecy and/or lies or misinformation on the part of adoptive parents had negative effects on both personal identity and relationships with others. The authors noted that those adoptees who found out about their adoption as adults were ‘especially likely to feel a sense of betrayal’ (p.4). Over recent years, stories of secrecy and late discovery have also started to emerge from sperm donor conceived adults (Spencer, 2007; Turner & Coyle, 2000). Current research evidence shows that although a majority of couples during the donor assisted conception process indicate that they intend to tell the offspring about their origins, as many as two-thirds or more of couples continue to withhold this information from their children (Akker, 2006; Gottlieb, A. McWhinnie, 2001; Salter-Ling, Hunter, & Glover, 2001). Why do they keep this secret? Infertility involves a range of complex factors that are often left unresolved or poorly understood by those choosing insemination by donor as a form of family building (Schaffer, J. A., & Diamond, R., 1993). These factors may only impact after the child is born, when resemblance talk becomes most pronounced. Resemblance talk is an accepted form of public discourse and a social convention that legitimises the child as part of the family and is part of the process of constructing the child’s identity within the family. Couples tend to become focused on resemblance as this is where they feel most vulnerable, and the lack of resemblance to the parenting father may trigger his sense of loss (Becker, Butler, & Nachtigall, 2005).

Identity and genetic origins : an ethical exploration of the late discovery of adoptive and donor-insemination offspring status

This thesis is an ethical and empirical exploration of the late discovery of genetic origins in two contexts, adoption and sperm donor-assisted conception. This exploration has two interlinked strands of concern. The first is the identification of ‘late discovery’ as a significant issue of concern, deserving of recognition and acknowledgment. The second concerns the ethical implications of late discovery experiences for the welfare of the child. The apparently simple act of recognition of a phenomenon is a precondition to any analysis and critique of it. This is especially important when the phenomenon arises out of social practices that arouse significant debate in ethical and legal contexts. As the new reproductive technologies and some adoption practices remain highly contested, an ethical exploration of this long neglected experience has the potential to offer new insights and perspectives in a range of contexts. It provides an opportunity to revisit developmental debate on the relative merit or otherwise of biological versus social influences, from the perspective of those who have lived this dichotomy in practise. Their experiences are the human face of the effects arising from decisions taken by others to intentionally separate their biological and social worlds, an action which has then been compounded by family and institutional secrecy from birth. This has been accompanied by a failure to ensure that normative standards and values are upheld for them. Following discovery, these factors can be exacerbated by a lack of recognition and acknowledgement of their concerns by family, friends, community and institutions. Late discovery experiences offer valuable insights to inform discussions on the ethical meanings of child welfare, best interests, parental responsibility, duty of care and child identity rights in this and other contexts. They can strengthen understandings of what factors are necessary for a child to be able to live a reasonably happy or worthwhile life.

Synthesis and properties of d6 metal complexes of bidentate and tridentate ‘super donor’ ligands

La polyvalence de la réaction de couplage-croisé C-N a été explorée pour la synthèse de deux nouvelles classes de ligands: (i) des ligands bidentates neutres de type N^N et (ii) des ligands tridentates neutres de type N^N^N. Ces classes de ligands contiennent des N-hétérocycles aromatiques saturés qui sont couplés avec hexahydropyrimidopyrimidine (hpp). Les ligands forment de cycles à six chaînons sur la coordination du centre Ru(II). Ce fait est avantageux pour améliorer les propriétés photophysiques des complexes de polypyridyl de Ru(II). Les complexes de Ru(II) avec des ligands bidentés ont des émissions qui dépendent de la basicité relative des N-hétérocycles. Bien que ces complexes sont électrochimiquement et photophysiquement attrayant, le problème de la stereopurité ne peut être évité. Une conception soigneuse du type de ligand nous permet de synthétiser un ligand bis-bidentate qui est utile pour surmonter le problème de stereopurité. En raison de la spécialité du ligand bis-bidentate, son complexe diruthénium(II,II) présente une grande diastéréosélectivité sans séparation chirale. Alors que l'unité de hpp agit comme un nucléophile dans le mécanisme de C-N réaction de couplage croisé, il peut également agir en tant que groupe partant, lorsqu'il est activé avec un complexe de monoruthenium. Les complexes achiraux de Ru(II) avec les ligands tridentés présentent des meilleures propriétés photophysiques en comparason avec les prototypes [Ru(tpy)2]2+ (tpy = 2,2′: 6′, 2′′-terpyridine). L’introduction de deux unités de hpp dans les ligands tridentates rend le complexe de Ru(II) en tant que ‘absorbeur noir’ et comme ‘NIR émetteur’ (NIR = de l’anglais, Near Infra-Red). Cet effet est une conséquence d'une meilleure géométrie de coordination octaédrique autour de l'ion Ru(II) et de la forte donation sigma des unités hpp. Les complexes du Re(I) avec des ligands tridentates présentent un comportement redox intéressant et ils émettent dans le bleu. L'oxydation quasi-réversible du métal est contrôlée par la donation sigma des fragments hpp, tandis que la réduction du ligand est régie par la nature électronique du motif N-hétérocycle central du ligand lui-même. Cette thèse presente également l'auto-assemblage des métal-chromophores comme ‘métallo-ligands’ pour former des espèces supramoléculaires discretes utilisant des complexes neutres. Les synthèses et propriétés des métaux-chromophores précités et les supramolécules sont discutées.

Similarity not favourability : the role of donor prototypes in predicting willingness to donate organs while living

Using an extended Prototype/Willingness Model, we examined the predictors of willingness to donate an organ to a partner/family member and a stranger while living. A questionnaire assessed university students’ (N = 284) attitudes, subjective norm, prototype favourability, prototype similarity, moral norm, and willingness to donate organs in each recipient scenario. All variables, except prototype favourability, predicted willingness to donate organs in both situations. Future strategies should emphasise perceived approval from important others for living donation, the consistency of living donation with one’s own morals, and encourage perceptions of similarity between oneself and living donors to increase acceptance of living donation.

Knowing a donor and identifying as one : determinants of people's willingness for related and anonymous living donation in Australia

While LRD (living donation to a genetically/emotionally related recipient) is well established in Australia, LAD (living anonymous donation to a stranger) is rare. Given the increasing use of LAD overseas, Australia may likely follow suit. Understanding the determinants of people’s willingness for LAD is essential but infrequently studied in Australia. Consequently, we compared the determinants of people’s LRD and LAD willingness, and assessed whether these determinants differed according to type of living donation. We surveyed 487 health students about their LRD and LAD willingness, attitudes, identity, prior experience with blood and organ donation, deceased donation preference, and demographics. We used Structural Equation Modelling (SEM) to identify the determinants of willingness for LRD and LAD and paired sample t-tests to examine differences in LRD and LAD attitudes, identity, and willingness. Mean differences in willingness (LRD 5.93, LAD 3.92), attitudes (LRD 6.43, LAD 5.53), and identity (LRD 5.69, LAD 3.58) were statistically significant. Revised SEM models provided a good fit to the data (LRD: x2 (41) = 67.67, p = 0.005, CFI = 0.96, RMSEA = 0.04; LAD: x2 (40) = 79.64, p < 0.001, CFI = 0.95, RMSEA = 0.05) and explained 45% and 54% of the variation in LRD and LAD willingness, respectively. Four common determinants of LRD and LAD willingness emerged: identity, attitude, past blood donation, and knowing a deceased donor. Religious affiliation and deceased donation preference predicted LAD willingness also. Identifying similarities and differences in these determinants can inform future efforts aimed at understanding people’s LRD and LAD willingness and the evaluation of potential living donor motives. Notably, this study highlights the importance of people’s identification as a living donor as a motive underlying their willingness to donate their organs while living.