Excerpts from research thesis 2012

The following information is drawn from my own PhD thesis.  A full reference list is available with the Thesis.  

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Riley, Helen Joyce (2012) Identity and genetic origins : an ethical exploration of the late discovery of adoptive and donor-insemination offspring status. PhD thesis, Queensland University of Technology.     
http://eprints.qut.edu.au/view/person/Riley,_Helen.html

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Overview of thesis IN FULL  (Research questions, scope and structure) 

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. 

1.       Identification of late discovery as a significant issue of concern that deserves additional and particular recognition and acknowledgment. 

Evidence has shown that people adopted in the ‘closed’ period of adoption and donor insemination offspring, whether late discovery or not, can experience genealogical bewilderment, involving psychological distress and confusion, declining self-esteem, and difficulty establishing human connectedness.  Nonetheless, it can also be argued that there are particular concerns attached to the lateness of discovery.  For late discoverers the truth of their origins has remained a secret throughout their lives, sometimes for 20, 30, 40 years or more.  In contemporary adoptions it is now recommended that a child be told of their origins as soon as possible after reaching an age where they can understand simple concepts.  This is considered necessary in order to prevent identity confusion and possible psychological harms.  For late discoverers the secret had been kept long beyond what most people would consider reasonable.  Discovery can expose many layers of secrets and a wide distribution network of those who kept the secret.  The secret may not only be known to close family, but also to friends, neighbours, distant relatives and even shopkeepers, community leaders and spiritual advisors.  Discovery therefore involves additional and particular impacts encompassing (i) the perceived betrayal of trust by those in the highest positions of trust to them; (ii) the knowledge that many others, including strangers, knew this secret and had participated in the conspiracy of silence; (iii) the realisation that the concealment of this information has undermined their agency (autonomy/free will) and influenced decisions they might otherwise have taken had they had this information; (iv) that they have been denied opportunities to search for and/or meet biological kin; opportunities that might have been possible if they had been given this information earlier; (v) that information given or assumptions made about their genetic medical history are false; and (vi) even loss of culture or ethnicity.

2.          The ethical implications of late discovery experiences for the welfare of the child. 

The late discovery experience has implications for discussions on the relative weight or influence of biological and social origins in child development.  The late discovery  experience, involves the intentional and secret separation of the biological and social worlds of a child. This lived experience can provide valuable input into the nature vs nurture debate and contribute to discussions of what may be in the best interests of the child in these and other practices.

These two strands of concern tie in with the two main questions explored in this thesis.  Firstly, what insights can be gained from the lived experiences of a group of late discoverers?  Secondly, what are the ethical implications of these experiences for late discoverers themselves and more generally, for the ‘welfare of the child’ in these contexts?

1.1      Research questions

1.1.1  Identification of late discovery as an issue of concern deserving of additional and particular recognition and acknowledgment 


Adoption

Evidence of genealogical bewilderment arising out of closed adoption practices have been well-documented.  Despite this, little attention has been devoted to one particular aspect of this bewilderment: the experiences of those who were not told of their adoptive status and who discover this information as adults.  Perl and Markham (1999) have estimated that the numbers of late discoverers of adoptive status in Australia were somewhere between 1% and 9% of those adopted over the 30 year period[1], when anonymity and closed records were standard practice, supported by Australia-wide state and territory legislation[2]. A mid-range estimate of 5% means that as many as 10,000 adoptees may have discovered this information as adults, or still remain unaware of their status [Since this thesis was completed an Australian wide study of past adoption practices has confirmed an even higher figure of 11% - Australian Government, Australian Institute of Family Services (2012),  Past Adoption Experiences: National Research Study on the Service Response to Past Adoption Practices, Canberra http://www.aifs.gov.au/institute/pubs/resreport21/index.html].  The great majority of these late discoverers have received little, if any, recognition or acknowledgment of the effects that this secrecy may have had on them.

Donor-assisted conception

Similarly, little attention has been given to the experiences of those who have discovered, as adults, that their conception was donor-assisted.  As donor-assisted conception practices have burgeoned around the world over the past two decades, new stories of late discovery in this context have also emerged. Many adults who have used this form of conception have never told their child or children of their origins, despite the wealth of information concerning the adverse effects of such secrecy that is available as a result of the discrediting of closed adoption practices.  This dynamic of secrecy appears to be largely confined to heterosexual couples using donor-insemination and can be attributed to a desire to protect the male partner[3] (the stepfather) and his family from the stigma of infertility.  A recent Senate inquiry report into donor conception practices in Australia (2011) estimates the total number of children conceived in Australia in this way as being between 20,000 and 60,000, of which approximately two-thirds were born using donor sperm[4].  Research evidence suggests that, in jurisdictions where no legislation exists to ban donor anonymity and provide an offspring with legal access to information, a majority of all couples using sperm donation still do not tell the child of its origins (Gottlieb et al., 2000; Grace et al., 2008; McWhinnie, 2001; Salter-Ling et al., 2001). Although it is impossible to estimate how many of these children may have discovered their origins as adults, an estimate of 5%, as a median figure, means that between 500 and 2,500 sperm donor offspring in Australia may be late discoverers.

The continuing lack of recognition and acknowledgement of the additional and particular concerns that may be faced by those who have discovered the truth of their genetic origins as adults, has resulted in many late discoverers being unable to effect healing repair. When stories of late discovery in adoption and donor-insemination have emerged, they have often been a by-product of, or footnote to, broader studies.  This is problematic for two reasons.  Firstly, the particular and sometimes very different additional challenges faced by late discoverers have tended to be subsumed within these broader contexts.  When they have been acknowledged they have also tended to be subsumed within the broader ‘pathologising’ frameworks that are available.  A pathologising framework assumes that an individual, therapeutic approach is the best, or perhaps only, response to address harm.  While a therapeutic approach may, indeed, be appropriate and necessary in many instances, there are nonetheless additional and particular concerns that remain unrecognised and unacknowledged.  These concerns encompass additional identity and relational losses and disruptions, a perceived betrayal of trust; a sense of injustice, feelings of social disregard, a perceived lack of accountability and responsibility by others towards them, and exclusion from normative standards and values.  Secondly, this pathologisation has been compounded by ‘professionalisation’ within both the social science and bio-medical fields, resulting in restricted and narrowed foci of interest and hampered, cross-disciplinary research exchanges.  It has privileged the rational and scientific ‘expert’ and these experts can dismiss other voices as emotive and irrational (Delany, 1997 & 2002; Jordan, 2000; Kass, 2002; O'Shaughnessy, 1994; Summerfield, 1999).  This has had the effect of both restricting the field of research interest within these disciplines and preventing the spread of knowledge.

This thesis will therefore focus on those who have experienced late discovery as a distinct cohort deserving of additional recognition and acknowledgment of concerns particular to their experience.  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.

1.1.2  Late discovery experiences can contribute to understandings of child welfare

Over the last 20 years in Australia, a range of claims have emerged in regard to both adoption and donor-assisted conception practices.  In adoption, there have been ongoing campaigns by heterosexual couples to gain more ‘streamlined’ access to adoption of children from overseas countries.  Also, there has been advocacy by gay and lesbian couples to have the right to adopt or foster children, both domestically and from overseas (Cuthbert & Spark, 2009b; Riggs, 2008).  Similarly, in donor-assisted conception, campaigns have mainly revolved around the right of access by de facto couples, single women and lesbian couples to Assisted Reproductive Technology (ART) (including donor-assisted conception).  These claims have involved legal challenges under anti-discrimination legislation.

In ART, the conceptual basis of these various claims has largely been adopted and preferred in legislative and clinical policy and practice.  Victoria has now removed prior restrictions on access to donor gametes, so that de facto couples, single women and lesbians are entitled to access ART.  New South Wales has transferred the power to decide who can access gametes into the hands of the donor, which permits wider access, but also enables unequal access if some, but not all, donors permit equal breadth of access.  South Australia remains committed to the concept of medical infertility as the determining factor in access.  Western Australia has no restrictions on access; its legislative emphasis lies in defining legal parentage concerns.  In the other four jurisdictions, Queensland, Tasmania, the Australian Capital Territory (ACT) and the Northern Territory (NT), access is determined on a clinic-by-clinic basis, as constrained by the Reproductive Technology Accreditation Committee (RTAC) and the National Health and Medical Research Council (NHMRC) guidelines[5].

As a result of the anti-discrimination claims made by de facto couples, single women and lesbian couples, as well as lobbying conducted by other interested parties[6], ethical concerns about donor-assisted conception as a practice have largely been restricted to, and subsumed by, legal and legislative debate over the need to balance such claims, while protecting the welfare of the child.  This has resulted in differences in the way in which the concept of the welfare of the child is acknowledged, and in the preference/priority given to the child’s interests relative to adult interests[7].  Both Victoria[8] and South Australia[9] explicitly place the welfare of the child as the paramount consideration.  Indicating an ongoing clash over this matter, in 2008 the South Australian Government proposed to amend the Assisted Reproductive Treatment Act to place the welfare of the woman undergoing treatment on an equal footing with the best interests of the child, but this was defeated[10].  In contrast, the wording of the New South Wales Act awards equal status to the interests of the child, the donor and the woman undergoing treatment[11].  Despite claims in the Agreement in Principle[12] that the best interests of the child are recognised as paramount, this is not reflected in the Act.  In a step down the spectrum of approaches, Western Australia[13] merely states that the interests of any child born as a result of the treatment should be ‘taken into consideration’.  Significantly, all jurisdictions continue to deny access to identifying information for donor offspring born or conceived prior to the legislation being enacted.  In the four jurisdictions where no legislation exists, providers are required to adhere to National Health & Medical Research Council (NHMRC) and Reproductive Technology Accreditation Committee (RTAC) guidelines.  Any public debate on the status or meaning of the welfare of the child in this context, and how this operates in these jurisdictions, remains minimal, despite more strongly worded NHMRC Ethical Guidelines coming into force in 2007.

The parliamentary debates surrounding the regulation of donor-assisted conception in Victoria, South Australia, New South Wales and Western Australia have been accompanied by a perception, by a majority of legislators and policy makers, of the need to balance contested claims.  Of course, the current emphasis on rights and the disputes occurring over access to these rights, fuels such perceptions.  Most recently, in New South Wales, gamete donors have been given the right to control who can use their gamete/s[14].  In presenting the legislation this was claimed to be necessary, as it was in the best interests of the child[15].  Despite arguments that this move was discriminatory, as it could be used to prevent access to gametes on racist, gender or religious grounds, its proponents claimed that no child would wish to find out later in life that their donor had objections to the family who raised them, and this was, therefore, in the child’s best interests. Whatever the motivations for this action, this approach is nonetheless one solution that has been found to resolve politically sensitive claims to access.  It may also be an attempt to empower, and thus encourage, donors, as sperm donations have been decreasing in jurisdictions that have outlawed donor anonymity.  This decline has been accompanied by lobbying to encourage sperm donation[16].

The inconsistency found in these approaches is not just an issue for concern in this context, but also highlights the confusion surrounding understandings of what is in the best interests of the child more generally.  Blyth and Farrand (2004) and Blyth (2008) have noted the difficulty in defining what a ‘reasonably’ happy or ‘worthwhile’ life is, when attempting to operationalise[17] child welfare or best interests.  Blyth and Farrand (2004) have argued that, even the wording of this principle, does not reliably afford priority to the best interests of the child, compared to other best interests or priorities.  In fact, they assert:

Imprecise conceptualisations of “well-being”, “welfare” or “best interests” principles may not only be of limited value, but may also be positively harmful, permitting assumptions that simply because concern for the welfare of the child is articulated in codes, regulations or statutes, it is necessarily adequately addressed (Blyth and Farrand, 2004, p.94).

While suggestions to resolve these imprecise conceptualisations by strengthening the child’s ‘voice’ have included extending full citizenship rights to donor-conceived children prior to conception (Riggs, 2008, 2009), this would not necessarily remove this debate from within highly contested legal and legislative frameworks that include demands for balance.  This is exemplified in the Public Interest Law Clearing House’s (PILCH) submission[18] to the recent Senate Report into donor conception in Australia (2011).  They argue that a balance must be struck between the rights of donors and donor-conceived individuals.  Also, that a human rights-based approach to access to donor information provides a helpful framework for addressing and balancing these concerns in a nuanced way.  Unfortunately, evidence suggests that such ‘balancing’ arguments challenge the paramount position of the welfare of the child in legislation, in a variety of ways.

In recognising and acknowledging the personal accounts of late discoverers, a new perspective becomes available from which to explore these concerns.  This new perspective does not offer a model to improve attempts to balance contested claims in a ‘nuanced’ way within rights discourses and legislative frameworks.  It does, however, seek to offer new ethical insights for any discussion of what is in the best interests of the child within these and other arenas.  It can also offer new insights into notions (legal and otherwise) of parental responsibility and duty of care.

While adult claims to equal rights and freedom from unwarranted discrimination within existing frameworks are understandable and valid, the pressure to balance contested claims will continue to result in challenges to the concept and status of the best interests of the child.  Often, those with political power and the strongest voice emerge victorious in such contests, no matter how ‘nuanced’ the attempts to balance may be.  What is needed, and what this thesis offers, is the opportunity to consider children’s ‘best interests’ from an ethical perspective.  This ethical viewpoint should acknowledge the vulnerability and dependency of children in a broader context than is offered by traditional and conventional understandings of parent/child dynamics and entitlements.  Such a perspective can strengthen conceptualisations of child welfare in a variety of contexts.

Feminist philosopher Margaret Walker asserts that child vulnerability engenders a range of responsibilities onto parents and other adults and describes this type of responsibility as dependency-in-fact (2006 p.90).  Walker asserts that, although we are all responsible in some way for protecting those who are vulnerable to our actions and choices, in certain contexts we owe others, including children, a moral and legal duty of care.  This means that special obligations are owed in particular relationships where one holds control of the vulnerable.  The greater the degree of vulnerability, the more stringent is the sense of responsibility.  When an adult with a special responsibility and obligation, such as parenting[19], fails to act in ways that honour the nature and forms of trust that define that relationship, they have failed to serve that responsibility and obligation.

Practices of responsibility engender confidence in shared moral understandings.  This means that a relationship exists between trust, recognition and normative expectations.  Adults need to meet their special obligations in order to strengthen the “common fabric of trust” that is needed for all, and particularly children, to operate successfully in the world as future adults (Walker, 2007, p.101).  In so doing, they also strengthen ethical understandings and renew “the fund of recognition itself” that forms part of normative social practices and shared practices of responsibility (Walker, 2007, p.101).  When the welfare of the child is placed in competition or conflict with adult rights, particularly when those adults hold a special obligation as parents, this can result in children being placed in positions of lesser moral value; of diminished recognition and acknowledgment.  In choosing to use donor-insemination parents are intentionally separating their child’s identity from his or her genetic origins, and are permitted and even encouraged to do so. In doing so, they are, arguably, instrumentalising their child and failing to exercise moral responsibility and accountability as adults who hold a special obligation.  Their moral duty may be fulfilled, but their special obligation to award their child equal moral worth—respect for individual freedom, the need to feel empowered, and the ability to exercise control—is ignored.  The child’s dependency-in-fact is betrayed through the act of denying them recognition of their equal moral value and equal moral status.

Accounts of the late discovery of genetic origins offer a distinctive perspective for engaging in a discussion on the meaning of ‘parental duties’, the best interests of the child and a child’s right to identity.  The ambiguous nature of identity and identity rights, and the lack of clarity and consensus regarding the right to identity in the United Nations Conventions on the Rights of the Child (UNCRC) is already an issue of concern, revealing no clear pattern or common ground among nations regarding preservation of identity rights under these articles (Blyth & Farrand, 2004; Heimerle, 2003; Ronen, 2004).  Late discovery accounts provide an opportunity to better understand the immediate and long-term effects on identity, relationships and values (the ethics of identity) for those whose biological and social worlds are being intentionally separated.  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 lived reality 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, friend, community and institutional secrecy from birth.  This has been accompanied by a failure to ensure that normative social 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 others, particularly significant others such as family, 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.  These experiences can also strengthen undestandings of what factors are necessary for a child to be able to live a reasonably happy or worthwhile life.




[1] Late 1940s to late 1970s.
[2] Although not enshrined in legislation, keeping the secret from the child was often suggested as a good idea by social workers.
[3] The infertile male partner in a couple using donor-insemination is often (in research and in daily life) referred to as a ‘social’ father.  This thesis argues that this term conceals the moral relationship that exists between fathers and their children.  From this point, the term ‘stepfather’ will be used, as this is the term used in other relationships where a biological father is replaced by another father figure in a family.
[4] This report notes that other estimates suggest that there are in excess of 60,000 donor-conceived individuals in Australia (this figure represents both sperm and egg donation births).  Blyth et al (2008) note that between 30,000 and 75,000 children are born annually by donor conception in the United States of America. In the United Kingdom, between 1992 and 2008 there have been around 1,700 births (or 2,000 children) born each year following treatment using donated eggs, sperm or embryos (http://www.hfea.gov.uk/donor-conception-births.html).
[5] This piecemeal, and sometimes contradictory, legal situation has been described as ‘chaotic’ by lawyer and legal researcher, Edwina Schneller.  She argues for the need for national legislation to resolve this situation (2005).
[6] Such as donors who wish to remain anonymous, supporters of the right to use sperm posthumously, those wishing to use surrogacy techniques, reproductive technology providers and others.
[7] Refer to paragraph 3.9 for a more detailed discussion on this concept.
[8] Assisted Reproductive Treatment Act (Victoria) 2008, Part 1.5a.
[9] Assisted Reproductive Treatment Act (South Australia)1988, Part 2.7.4A.
[10] Reproductive Technology (Clinical Practices)(Miscellaneous) Amendment Bill, Second Reading 26/11/2008.
[11] Assisted Reproductive Technology Act 2007 (NSW), Part 1.3(b).
[12] Assisted Reproductive Technology Bill 2007 (NSW), ‘Agreed in Principle’ Speech, 7 Nov 2007.
[13] Human Reproductive Technology Act (W.A.) 1991, Div 1, Part 4.1.d (iv).
[14] Assisted Reproductive Technology Act 2007 (NSW) Part 2.19.
[15] Assisted Reproductive Technology Bill 2007 (NSW), ‘Agreed in Principle’ Speech, 7 Nov 2007.
[16] Senate Report on Donor Conception (2011), Canberra Fertility Centre [Submission 48], Fertility East [Sub 56], Andrology Dept, Concord RG Hospital (Sub 162].
[17] This is a term used in the social sciences to describe the process of defining a vague concept so as to make the concept clearly understandable, distinguishable or measurable.
[18] Submission No. 125.
[19] This thesis argues that the terms ‘parent’ and ‘parenting’ include gamete donors.  This claim is explored in more depth in paragraph 9.2.5.