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Donor Conception, Secrecy, and the Search for Information

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Abstract

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.
Guest editorial
Sonia Allan
*
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 concerning 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.
We dance round in a ring and suppose
But the secret sits in the middle and knows.
Robert Frost, “The Secret Sits”,
The Poetry of Robert Frost (Lathem EC, ed) (New York, 1969) p 362.
INTRODUCTION
The progress of assisted reproductive technology throughout history has been both celebrated and
derided. It has been a practice that, while assisting people to have children, has been cloaked in a veil
of secrecy. Such secrecy reflects religious, moral and social views of the past, which were focused
upon protecting the adults involved (the recipient parents, donor and doctors) and failed to consider
the impact that secrecy may have upon some donor-conceived people. In recent times, little has
changed. While some jurisdictions have passed laws that prohibit anonymous donations, and provide
access to information for some donor-conceived people, for many people donor conception is still a
clandestine practice. For those who do not have access to information, calls to lift the veil of secrecy
have been steadily increasing.
1
What is the basis for such calls? What are the psycho-social, ethical
and legal arguments for and against release of information? How may competing interests be
balanced? How, if the call for information is heeded, should release of information take place? These
are some of the questions considered in this editorial and in the articles commissioned for this Special
Issue of the Journal of Law and Medicine.
2
*
PhD (Law), LLM (Global Health Law), LLB (Hons), BA (Psych) (Hons), GDLP, GCHE; Senior Lecturer, Deakin University;
Churchill Fellow. The author would like to thank all the contributors to this Special Issue of the journal for participating in this
project, for bringing their thoughtfulness and expertise to the issues, and for being an absolute pleasure to work with throughout.
She is very grateful to them all.
Correspondence to: Sonia Allan, Deakin University School of Law, Blg C, Burwood Campus, 221 Burwood Hwy, Vic 3125,
Australia; email: sonia.allan@deakin.edu.au.
1
See eg Pratten v British Columbia (Attorney General) 2011 BCSC 656; Senate Legal and Constitutional Affairs References
Committee, Donor Conception Practices in Australia (2011) (Senate Report); Victorian Law Reform Committee, Inquiry into
Access by Donor Conceived People to Information about the Donors (March 2012); Allan S, “Psycho-social, Ethical and Legal
Arguments For and Against the Retrospective Release of Information about Donors to Donor-conceived Individuals in
Australia” (2011) 19 JLM 354.
2
The articles were commissioned to explore psycho-social, ethical and legal issues the current author had raised in an article
concerning the retrospective release of information to donor-conceived people and in light of the Senate Legal and Constitutional
(2012) 19 JLM 631 631
To “set the scene”, this editorial first considers the history of artificial insemination, highlighting
early reactions to assisted reproductive technology that reinforced it being very much a clandestine
practice. It illustrates how acceptance of artificial insemination, including artificial insemination by
donor and other assisted reproductive technologies, has changed over time, and then questions the
continuance of secrecy that surrounds the practice. It argues that what has been overlooked historically
is the impact of secrecy upon some donor-conceived people. The above-mentioned call by the now
adult offspring for information about their donors is examined in light of psycho-social, ethical and
legal arguments that are raised for and against release. Laws in a number of jurisdictions that require
non-anonymous donations are highlighted, as are the practical realities of those who search for
information. The editorial then considers two recent Australian government committee reports that
conclude that the release of information to donor-conceived people about their donors is required. A
brief introduction to the model used in Victoria by the former Infertility Treatment Authority for
facilitating and supporting such release is also given. These issues are further explored in the articles
included in this Special Issue. The editorial concludes with a question: do the recent recommendations
of the Australian inquiries indicate a future of openness and honesty? This last question is introduced,
but left open – the answer will be seen in what Australian legislatures do in response to these calls,
and whether or not other jurisdictions elsewhere in the world follow.
ALONG HISTORY OF RESEARCH,PRACTICE AND SECRECY
The use of artificial insemination to achieve pregnancy has reportedly existed for centuries.
3
So, too,
has the secrecy that has surrounded such practice. Bateman Noveas
4
notes that “the historical origins
of assisted conception are clearly tainted by doubts about the morality of the acts involved [including
masturbation and instrumental substitution for sexual intercourse] and their legitimacy as medical
treatment”.
5
This is clearly illustrated by the strong disapproval that met early experimentation at the
turn of the 19th century in impregnating a woman with her husband’s sperm using “instrumental
insemination”.
6
The practice was publicly condemned as “offensive to natural law”.
7
It was said that it
“could constitute a real social peril”, and that “it was of import to the dignity of marriage that such
procedures not be transferred from the domain of Science to the domain of Practice”.
8
Around this
time, Dr J Marion Sims, who conducted 55 inseminations of six women using their husband’s sperm,
allegedly repudiated his own work as immoral.
9
Affairs References Committee Report, and ongoing inquiries in Victoria and New South Wales, Australia, into information
release to donor-conceived people: see Allan, n 1; Senate Report, n 1; Victorian Law Reform Committee, n 1; New South Wales
Committee on Law and Safety Inquiry into Inclusion of Donor Details on the Register of Births (2012) (ongoing).
3
References to artificial insemination go back to Talmudic documents written more than three centuries ago which record rabbis
discussing the status of a woman hypothetically impregnated by semen previously deposited in bath water: Kordimon S,
Artificial Insemination in the Talmud (Harofe Haivrc, 1942-43, Hebrew) p 62; English translation, p 164, cited in Critser JK,
“Therapeutic Insemination by Donor: A Review of Its Efficacy” (1995) 4 Reproductive Medicine Review 9. There is also very
early reference to King Henry IV of Ceville – often referred to as “le-impotente” – and attempts to impregnate his wife in the
1400s using artificial insemination (the use of a donor is not indicated): Birkhead TR and Montgomerie R, “Three Centuries of
Sperm Research” in Birkhead TR, Hosken DJ and Pitnik S (eds), Sperm Biology an Evolutionary Perspective (Academic Press,
USA, 2009) p 11. The history of artificial insemination is not complete without recognising that there was much
experimentation with it in farm animals: see Foote RH, The History of Artificial Insemination: Selected Notes and Notables
(American Society of Animal Science, 2002).
4
A senior researcher in sociology at the Centre de Recherche Sens, Ethique, Société (CERSES), a centre affiliated to the Centre
National de la Recherche Scientifique (CNRS) and to the Université Paris Descartes in Paris, France.
5
Bateman Noveas S, “The Medical Management of Donor Insemination” in Daniels K and Haimes E (eds), Donor
Insemination: International Social Science Perspectives (Cambridge University Press, United Kingdom, 1998) p 110.
6
In particular, the work of John Hunter in the United Kingdom and MA Thouret in France.
7
Tribunal de Bordeaux, 1880, Affaire Lejâtre, cited in Bateman Noveas, n 5.
8
See n 7.
9
Weinberger AD, “Partial Solution to Legitimacy Problems Arising From the Use of Artifical Insemination” (1959-1960) 35 Ind
LJ 144.
Guest editorial
(2012) 19 JLM 631632
Given the disapproval of artificial insemination with the sperm of a woman’s husband, it is not
surprising that the early use of donor sperm
10
also met with great disapproval. For example, in one of
the earliest reported cases of donor insemination (1884), an American physician, Professor William
Pancoast, used the sperm of one of his “best-looking” medical students to impregnate the wife of a
sterile Quaker merchant.
11
The woman was anaesthetised with chloroform and not informed of the
procedure, although reportedly the husband was told. It was only in 1909 (some 25 years later), after
Dr Pancoast’s death, that one of the medical students, who had been present, revealed the story.
12
Similarly, treatments conducted in the 1890s, by Dr Robert L Dickson,
13
were not reported until some
40 years later.
During this period, the Vatican condemned such practices as gravely immoral, stating that they
“infringe the child’s right to be born of a father and mother known to him and bound to each other by
marriage” and “betray the spouses’ right to become a father and a mother only through each other”.
14
In addition to objections regarding masturbation and instrumental substitution for sexual intercourse,
there were also objections concerning adultery. To this end, Bateman Novaes observes the significance
of using fresh sperm to maintaining secrecy:
The conditions under which the three principal participants in DI (the woman to be inseminated, the
man providing the sperm, and the physician) were being brought together emphasized the moral
premises of this arrangement: even if the offer of treatment might ultimately be justifiable in terms of its
positive results, it was nevertheless not perceived as morally appropriate or legally expedient for the
infertile couple to be acquainted with the sperm donor. The physician therefore beyond his/her technical
role as inseminator, had to intervene as a mediator: someone who makes it possible for semen transfer
to take place, without requiring the two parties to meet.
Stigma about male infertility was also apparent, As such, “the secrecy surrounding the procedure
and anonymity of the semen provider became the central organising principles of the practice, and in
one sense served as the most obvious justification for the physician’s presence in this situation”.
15
Notably, views bound up in morality, religion and natural law that criticised instrumental insemination
did not stop research or practice, but rather reinforced the secrecy surrounding donor conception for
over a century.
The history of artificial insemination by donor was significantly tainted during World War II by
doctors in Nazi Germany who performed donor insemination experiments on Jews, gypsies and
concentration camp prisoners, which were reflective of Nazi eugenic ideals.
16
Such experiments
highlight the potential misuse of artificial insemination by donor, a fear that is still prevalent today.
17
10
Sperm obtained from a male to whom the woman is not married or in a relationship with.
11
Gregoire AT and Mayer RC, “The Impregnators” (1965) 16 Fertil Steril 130.
12
A letter by Addison Davis Hard appeared in the American journal Medical World: Eichler M, “Of Desperation Born: The
Struggle for Children at Any Cost” in Turner J (ed), Living the Changes (University of Manitoba Press, Manitoba, 1990) p 230.
13
The first successful use of donor semen in the United States of America is attributed to Dr Robert L Dickson who was a
pioneer in birth control, sex education and marriage counselling.
14
The earliest statements reflecting this view by the Vatican were made at the Sacred Congregation of the Holy Offıce in 1897,
and were reiterated in Pius XII (1949), Donum Vitae (1987) and Evangelium Vitae (1995).
15
Bateman Noveas, n 5, p 111.
16
Cohen BC, The Ethics of Using Medical Data From Nazi Experiments (Copyright 2012, American-Israeli Cooperative
Enterprise), http://www.jewishvirtuallibrary.org/jsource/Judaism/naziexp.html viewed 22 February 2012. See the statements
cited in Cohen of Dr Jay Katz (deceased), formerly of Yale University School of Law, who described the Nazi experiments with
one phrase: “They’re of no scientific value”; of Brigadier General Telford Taylor, chief counsel for the prosecution at
Nuremberg, who described Nazi experimentations as “a ghastly failure as well as a hideous crime … [that] revealed nothing
which civilized medicine can use”; and of Lord Immanuel Jakobovits, Chief Rabbi of the British Commonwealth of Nations and
a pioneer of Jewish medical ethics, who said that “using the Nazi data offers not a shred of meaning to 6,000,000 deaths. In fact,
use of the data would serve to dishonor them even more so.”
17
King D, “Preimplantation Genetic Diagnosis and the ‘New’ Eugenics” (1999) 25 J Med Ethics 176. For discussion of the use
of the word “eugenics” in relation to preimplantation genetic diagnosis see Wilkinson S, “‘Eugenics Talk’ and the Language of
Bioethics” (2008) 34(6) J Med Ethics 467.
Guest editorial
(2012) 19 JLM 631 633
However, experimentation and practice did not stop. In fact, post-World War II scientific advances,
18
first with animals, and then with humans, marked the entry of artificial insemination by donor into
more public realms. In 1949, Christopher Polge, a doctoral student, developed improved methods of
freezing and thawing sperm.
19
In 1950, Cornell University scientists discovered that antibiotics could
be added to the sperm solution in artificial insemination processes to protect against possible
contamination.
20
In 1953 the first successful pregnancy from artificial insemination by donor with
frozen and thawed sperm was reported.
21
These were significant discoveries as the capacity to freeze
sperm meant that it was no longer necessary for all persons involved to be present (or close to hand).
Nonetheless, although practical obstacles were addressed, the moral and legal debate about such
practices continued. Such discussion focused primarily upon issues of adultery, illegitimacy, paternity
and the rights of legal inheritance of the child from the donor and/or husband/non-biological father.
22
Attitudes towards donor insemination remained very negative. For example, Daniels and Taylor noted:
[L]ittle had changed by 1960 when a UK interdepartmental committee, chaired by Lord Feversham
determined that donor insemination was “undesirable” and should not be practiced [sic] … Donation
itself was also viewed with deep suspicion, with the personal motivation of donors being called into
question. The committee decided that donation “is an activity which might be expected to attract more
than the usual proportion of psychopaths”.
23
The public response to the Feversham committee inquiry was similarly negative, ranging from
disapproval to abhorrence, with little or no support for donor insemination given to the practice other
than by the practitioners themselves.
24
However, by the 1970s, sperm freezing techniques had improved, sperm banks had developed,
instrumental insemination had become commercialised in many countries, and there were significant
calls for its use. Technological advances further increased the occurrence of donor conception
worldwide with the first in vitro fertilisation (IVF) baby born in the United Kingdom in 1978. Since
then, numerous assisted reproductive technologies have been developed. It was during this period and
following that laws in some jurisdictions were passed to provide legal certainty regarding the status of
children and their parents born as a result of such technologies. Generally, the donor of sperm was
declared not to be a parent (thereby having no rights or responsibilities), and the husband of the
woman who underwent the procedure, subject to his consent, was declared the father.
25
With the
passing of such legislation fears surrounding illegitimacy or questions of legal parentage and
inheritance were resolved. However, secrecy remained the guiding principle for many of those
involved. Daniels and Taylor described the situation in the 1970s and 1980s as one in which doctors
continued to tell families not to mention the child’s origins to anyone, including the child; the few
18
Such advances were not related in any way to the experiments conducted by the Nazis in World War II.
19
Polge C, Smith AU and Parkes AS, “Revival of Spermatozoa After Vitrification and Dehydration at Low Temperatures”
(1949) 164(4172) Nature 666.
20
Foote RH and Bratton RW, “The Fertility of Bovine Semen in Extenders Containing Sulfanilamide, Penicillin, Streptomycin,
and Polymyxin” (1950) 33 J Dairy Sci 544.
21
Bunge RG, Keettel WC and Sherman JK, “Clinical Use of Frozen Semen: Report of Four Cases” (1954) 5(6) Fertil Steril 520.
22
For example see Spiegel JL, “Seed of Doubt” (1955-1956) 17 U Pitt L Rev 659; Unknown, “Child Conceived Through
Artificial Insemination by a Third-party Donor Is Illegitimate – Gursky v Gursky, A [legislation]” (November 1964) 63(1) Mich
L Rev 160; Valeri JR, “Donor Insemination – No Clear Legal Future in Prospect” (Spring 1968) 3(2) Portia Law Journal 235.
23
Daniels K and Taylor K, “Secrecy and Openness in Donor Insemination” (1993) 12(2) Politics and Life Sciences 155 at 156.
24
Blizzard J, Blizzard and the Holy Ghost (Peter Owen, London, 1977), cited in Daniels and Taylor, n 23, p 156.
25
In Australia see Artificial Conception Act 1985 (WA); Family Relationships Act 1975 (SA); Parentage Act 2004 (ACT);
Status of Children Act 1996 (NSW); Status of Children Act (NT); Status of Children Act 1974 (Tas); and Status of Children Act
1974 (Vic). In the United Kingdom see Human Fertilisation and Embryology Act 1990 (UK), s 28. Laws concerning legal
parentage around the world differ both among and within states (eg in federal/State systems). For example, in the United States
the majority of States have enacted legislation that governs the status of legal parentage of donors and recipients but such
statutes vary regarding the degree to which they resolve issues of legal parentage (eg some require marriage). In the States that
do not have statutes governing the legal status of gamete donors or recipient parent(s), the issue is generally governed by the
common law but again is not uniform in its application or approach. It is beyond the scope and focus of this article to detail
these laws further.
Guest editorial
(2012) 19 JLM 631634
studies that had looked at families who were using donor insemination reported that parents had no
intention of telling their child(ren); that donors were matched as closely to the legal father as possible;
and, as no notation was made on the birth certificate, secrecy was enshrined.
26
Adams and Lorbach
27
further note that it was “not unusual in the past for doctors to use sperm from more than one man to
confuse paternity thereby placing a further barrier to identification of a child’s biological parent” and
that the general belief was that anyone involved in the conception (donor, recipient or donor
conceived) “could not and should not seek information about each other”.
28
Today, assisted reproductive technology is a growth industry. The European Society of Human
Reproduction estimates that there are 3.5 million children worldwide born as a result of such
technology. It may therefore be confidently estimated that donor conception touches the lives of
several million people including donors, donor-conceived people, those accessing assisted reproduc-
tive technology (recipients), siblings of donor-conceived people (biological and non-biological) and
extended families. In a number of countries we have moved to celebrate different family forms, and to
recognise the children and parents within them. However, for many people, donor conception
continues to be shrouded in secrecy, denial and shame.
WHAT ABOUT ME? DONOR-CONCEIVED OFFSPRING
The history of assisted reproductive technology illustrates that the secrecy surrounding the practice
focused primarily upon sex, marriage, morality, adultery, masturbation, the presence of a doctor using
an instrument to inseminate the woman, inheritance, legal parentage and stigma concerning male
infertility. Such secrecy was, and to a significant degree continues to be, steeped in moral, religious
and legal views that primarily (if not solely) focus upon the adults involved in the process. Notably,
such secrecy does not appear to have been ill intended or meant to cause harm to the resultant
donor-conceived person. However, the interest and/or need that donor-conceived people may have in
knowing about their conception and/or genetic heritage were largely ignored.
On occasion, however, there was a call for openness.
29
In some jurisdictions, laws were passed to
prohibit anonymous donation. In the present day, several countries (including Sweden,
30
Austria,
31
Switzerland,
32
The Netherlands,
33
Norway,
34
the United Kingdom,
35
Finland
36
and New Zealand
37
)
26
Daniels and Taylor, n 23 at 156.
27
A donor-conceived person and recipient parent respectively, as well as experienced advocates for the release of information to
donor-conceived families, and leaders of donor conception support groups.
28
Adams D and Lorbach C, “Accessing Donor Conception Information in Australia: A Call for Retrospective Access” (2012) 19
JLM 707 (below).
29
For example, see Annas GJ, “Fathers Anonymous: Beyond the Best Interests of the Sperm Donor” (1980-1981) 14 Fam LQ
1; Committee to Consider the Social, Ethical and Legal Issues Arising from In Vitro Fertilisation, Report on Donor Gametes in
IVF (Melbourne, 1983) (Waller Report); United Kingdom, Department of Health and Social Security, Report of the Committee
of Inquiry into Human Fertilisation and Embryology (HMSO, London, 1984) (Warnock Report); O’Donovan K, “A Right to
Know One’s Parentage?” (1988) 2 International Journal of Law and the Family 27; Haimes E, “Secrecy: What Can Artificial
Reproduction Learn from Adoption?” (1988) 2 International Journal of Law and the Family 46; Royal Commission on New
Reproductive and Genetic Technologies, Proceed with Care (Minister of Government Services, Ottawa, 1993); Maclean S and
Maclean M, “Keeping Secrets in Assisted Reproduction – The Tension between Donor Anonymity and the Need of the Child for
Information” (1996) 8(3) Child and Family Law Quarterly 243; Blyth E, “Donor Assisted Conception and Donor Offspring
Rights to Genetic Origins Information” (1998) 6(3) International Journal of Children’s Rights 237.
30
Lag om insemination (Law on Insemination) 1984 (Swed) (replaced by Genetic Integrity Act 2006 (Swed)).
31
Fortpflanzungsmedizingesetz. 275 Bundesgesetz, 1992 (Austria).
32
Federal Act on Medically Assisted Procreation of 18 December 1998 – FF 1996 III, 197 (LPMA) (Switz).
33
Wet donorgegevens kunstmatige bevruchting, 2002 (Neth).
34
Act on Biotechnology 2003 (Norway).
35
Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004 (UK).
36
Act on Assisted Fertility Treatments (1237/2006) (Fin).
37
Human Assisted Reproductive Technology (HART) Act 2004 (NZ).
Guest editorial
(2012) 19 JLM 631 635
and some Australian jurisdictions (New South Wales,
38
Victoria,
39
Western Australia
40
and South
Australia
41
) provide access to identifying and non-identifying information about donors to
donor-conceived people. Such access has placed importance on donor-conceived people being able to
learn about their genetic heritage, familial medical history, and kinship. However, even in these
jurisdictions, provision for the recording and release of information about donors to donor-conceived
people does not guarantee information flow. Without a means to enforce disclosure, recipient parents
may maintain secrecy if they so desire. To promote greater openness Victoria implemented an
addendum provision to the birth certificate of donor-conceived people born after 1 January 2010,
which states that further information is available about them on the Victorian Registry of Births,
Deaths and Marriages.
42
In this way a person will be alerted to the fact of their donor conception,
necessary of course to make the choice about whether they wish to access information about the
person(s) to whom they are biologically related.
On the other hand, many jurisdictions (in fact, the vast majority worldwide) continue to permit
“anonymous donation” and secrecy concerning the method of conception. Even in countries that have
laws providing for non-anonymous donation, such laws do so only prospectively (from the date of
their enactment), and as noted, most do not require that parents tell their children about the method of
conception. There are thus a significant number of individuals worldwide who continue to be deprived
of knowledge about the method of their conception and/or who may be denied access to information
about their donor and their genetic identity and heritage.
There are a number of increasingly well-known reasons why donor-conceived people are
searching for information and arguments that support the release of information to them.
A sense of self
One of the most significant reasons for searching for information about donors involves questions
about self-identity: the “who am I?” questions that many ask. For some, this simply involves a desire
to know more about themselves and their biological heritage. For others, there may be a stronger sense
of “lost identity” and a corresponding desire to know more about their donor.
43
The confusion and
distress of an unknown heritage is referred to as “genealogical bewilderment”.
44
Such bewilderment
may exist despite a child’s development being shaped by social as much as biological factors, because
knowledge of one’s immediate genetic heritage is considered integral to the self-identity of most
people.
In studies conducted to evaluate the consequences of non-disclosure for an individual’s sense of
identity, some respondents described feeling as though they were “freaks” or “products of
experiments” or that they were in some way “incomplete”. McNair wrote:
38
Assisted Reproductive Technology Act 2007 (NSW).
39
Infertility (Medical Procedures) Act 1984 (Vic); Infertility Treatment Act 1995 (Vic); Infertility Treatment Regulations 1997
(Vic); Assisted Reproductive Treatment Act 2008 (Vic).
40
Human Reproductive Technology Act 1991 (WA).
41
Assisted Reproductive Treatment Act 1988 (SA), s 16; Assisted Reproductive Treatment Regulations 2010 (SA), reg 4(c).
42
Assisted Reproductive Treatment Act 2008 (Vic), ss 153, 17B(2).
43
Turner A and Coyle A, “What Does it Mean to be Donor Offspring? The Identity Experience of Adults Conceived by Donor
Insemination and the Implications for Counselling and Therapy” (2000) 15(9) Hum Reprod 2041; Jadva V, Freeman T,
Kramer W and Golombok S, “Experiences of Offspring Searching for and Contacting Their Donor Siblings and Donor” (2010)
20 Reprod BioMed Online 523 at 524.
44
Turner and Coyle, n 43; Wellisch E, “Children Without Genealogy: A Problem with Adoption” (1952) 13(1) Mental Health
41; Sants H, “Genealogical Bewilderment in Children with Substitute Parents” (1964) 37(2) British Journal of Medical
Psychology 133.
Guest editorial
(2012) 19 JLM 631636
These sentiments suggest that identity is related to genetic inheritance in some way, and a fuller sense
of identity for a donor-conceived person may only be achieved through access to details about their
donor.
45
Bewilderment may be particularly acute for people who discover later in life that they were
donor-conceived. There is evidence to suggest that some donor-conceived people in these
circumstances may undergo a “fracturing” in their identity due to knowledge of their status, and feel
significantly deceived about who they are.
46
The curiosity about their donor and the propensity for
donor-conceived people to search for information is not related to the desire to escape negative family
issues; rather, most donor-conceived people report positive relationships with their parents.
47
Such
feelings coexist with the strong desire to know about one’s donor and frustration at being denied
information.
48
Chisholm has stated:
In short, there is a formidable argument to the effect that knowledge of one’s genetic origins is, at least
for many people, a matter of fundamental importance to their sense of identity and self-worth; and that
ignorance, as well as undermining this sense, could lead to risks of a medical kind, and a risk of
inadvertently partnering a half-sibling.
49
Concerns about medical history and the risk of forming consanguineous relationships are discussed
below.
Medical history
Some donor-conceived people wish to find out more information about their familial medical history.
The importance of knowing whether or not there is a familial history of heart disease, diabetes, cancer,
mental health issues, and/or other heritable diseases is undeniable and strongly encouraged in this day
and age.
50
Donor-conceived people who are denied access to familial medical histories are therefore
placed at increased risk as a result of not having access to information. This becomes very significant
as people age. There are many conditions such as type-2 diabetes mellitus or heart disease which often
develop later in life, and a donor who donated in the 1970s or 1980s, when donor conception was
shrouded in secrecy, may not have been aware that they are a carrier of these diseases. Similarly, a
donor-conceived person may become aware of a heritable condition, but has no way presently to
notify their donor(s) or half-siblings conceived using the same donor gametes.
51
This may have
ramifications not just for the person unaware of such information but for generations to come. On the
other hand, the release of medical information raises issues about health privacy and confidentiality
which are generally protected. However, there are some circumstances in which the release/reporting
of such information to third parties is allowed and prescribed by legislation, and a right to privacy is
not absolute.
52
45
McNair R, Outcomes for Children Born of ART in a Diverse Range of Families (Victorian Law Reform Commission,
Victoria, 2004) p 43.
46
Dennison M, “Revealing Your Sources: The Case for Non-anonymous Gamete Donation” (2008) 21(1) Journal of Law and
Health 1 at 13; Ravitsky V, “Knowing Where You Come From: The Rights of Donor-conceived Individuals and the Meaning of
Genetic Relatedness” (2010) 11(2) Minnesota Journal of Law, Science & Technology 655 at 670, referring to Warnock M, “The
Good of the Child” (1987) 1 Bioethics 141 at 151.
47
Mahlstedt PP, LaBounty K and Kennedy WT, “The Views of Adult Offspring of Sperm Donation. Essential Feedback for the
Development of Ethical Guidelines Within the Practice of Assisted Reproductive Technology in the United States” (2010) 93(7)
Fertil Steril 2236.
48
Turner and Coyle, n 43; Jadva et al, n 43 at 524; Dennison, n 46.
49
Chisholm R, “Information Rights and Donor Conception: Lessons from Adoption?” (2012) 19 JLM 722 at 734 (below).
50
Centers for Disease Control and Prevention (CDC), “Awareness of Family Health History as a Risk Factor for Disease”
(2004) 53(44) Morb Mortal Wkly Rep 1044.
51
See eg Donor Disclosure, http://www.youtube.com/watch?v=1mLdw3v1pkI viewed 30 March 2012.
52
For more detailed discussion of such exceptions see Allan, n 1 at 369-371.
Guest editorial
(2012) 19 JLM 631 637
Risk or fear of forming consanguineous relationships
Another significant driver in the search for information for some donor-conceived people is the fear of
unknowingly forming relationships with siblings or possibly their unknown donor.
53
While the
probability of such an occurrence is unknown, such a risk may be significant within smaller
populations, or where there are no controls on the number of families for which the same donor’s
gametes may be used.
54
While one way to avoid half-siblings forming relationships is to restrict a
donor to one donation or to one recipient family, it is clear that this is not, and has not been, the
approach to donor conception in most jurisdictions.
55
The reality is that a significant number of donors
are likely to have donated multiple times. Some may also have donated at multiple clinics, and in a
number of jurisdictions.
Entering consanguineous relationships may have negative legal ramifications.
56
There is also the
chance that such relationships would bear children, leading to the risk of genetic or chromosomal
abnormalities.
57
The fear of this occurring can cause great distress for some donor-conceived people.
58
Psycho-social and ethical dilemmas also exist. Most importantly, the threat of consanguinity poses yet
another challenge to the emotional and social wellbeing of some donor-conceived people. Crawshaw
59
describes how some donor-conceived people question “whether their attraction to someone may be
‘genetic sexual attraction’, and that an otherwise innocent statement such as ‘you look just like
so-and-so’ carries a very different significance to those personally affected by donor conception”.
60
The chances of such situations occurring and/or the fear of forming consanguineous relationships
would be removed if donor-conceived people and donors were able to obtain information about each
other.
Openness and honesty
There are other reasons beyond those detailed above that drive some donor-conceived people to search
for information. Some report simply wanting to know a name for their donor; others wish to say thank
you; while others want to know whether they have any half-siblings. Whatever the reasons, be they to
address harm that has been suffered, to prevent future harm, or for the many other psychological,
social, ethical and personal reasons that lead people to search, it is clear that underpinning their search
is a strong desire for openness and honesty. Simply put, they call for an end to secrecy and anonymity,
and an opportunity to choose for themselves.
Chisholm highlights general support for openness and honesty (or in the negative sense “a
concern about any system that depends on deception or concealment”) in the legal system in “not only
53
Senate Report, n 1, Submission 156 (M Crawshaw) p 7.
54
New South Wales Law Reform Commission, Artificial Conception: Human Artificial Insemination, Discussion Paper 11
(1984).
55
Some jurisdictions limit the number of families to which a donor may donate. For example, in Victoria, the maximum number
of families is 10: Assisted Reproductive Treatment Act 2008 (Vic), s 29. In New South Wales, the number is five: Assisted
Reproductive Technology Act 2007 (NSW), s 27(1). In Western Australia, the number is five: Human Reproductive Technology
Act 1991 (WA) (see “Human Reproductive Technology Directions (WA)”, Western Australian Government Gazette
(30 November 2004) p 5434 at [8.1]).
56
For example, the Australian Marriages Act 1961 (Cth), s 23(1)(b), makes marriages involving “prohibited relationships” void.
Section 23(2)(a)-(b) states that “marriages between an individual and their parent and an individual and their sibling, including
half siblings” are “prohibited relationships”. State criminal law also makes incest between individuals and their parents and
half-siblings a punishable offence: eg see Crimes Act 1958 (Vic), s 44(2), (4).
57
Bennett RL, Motulsky AG, Bittles A et al, “Genetic Counseling and Screening of Consanguineous Couples and Their
Offspring: Recommendations of the National Society of Genetic Counselors” (2002) 11(2) Journal of Genetic Counseling 97.
The authors, in recognising the risk associated with forming consanguineous relationships, recommend genetic counselling and
screening for consanguineous couples and their offspring. Donor-conceived individuals who are unaware of their relatedness to
others would not have the opportunity to undergo such counselling or screening.
58
Commonwealth, Senate Committee, Hansard (3 November 2010), oral evidence of donor-conceived individuals.
59
Honorary Fellow in Social Work, University of York; National Adviser to United Kingdom DonorLink; Co-Chair of PROGAR
(Project Group on Assisted Reproduction).
60
Senate Report, n 1, Submission 156 (M Crawshaw) p 7.
Guest editorial
(2012) 19 JLM 631638
background commentaries but in explicit form in some adoption legislation”. In addition, he notes that
“this approach is also reflected in numerous legal decisions in Australia and elsewhere”.
61
In the
context of donor conception, he quotes the Canadian Royal Commission on New Reproduction
Technologies:
62
Commission research showed that maintaining secrecy about the means of conception can be contrary
to the best interest of the child … Adults born through DI reported that the decision to keep DI a secret
was very damaging – they felt deceived and said they had always sensed that something was “wrong”
in the family. Some told the Commission that they found out about the method of conception at a time
of family crisis, such as a divorce or death in the family … Discovering the truth in this way is doubly
traumatic; the shock of discovery during an already stressful period is coupled with the realisation that
your parents had lied to you all your life.
WHAT ABOUT ME? THE DONOR AND RECIPIENT PARENTS
Contracts for anonymity, privacy and confidentiality
Some argue that sperm donors and recipient parent(s) signed or had a verbal contract which assured
the donor of anonymity.
63
Such contracts are sometimes used as an argument against releasing
information to donor-conceived people.
64
However, Rees questions whether, at least in the Australian
context, such “contracts” actually existed.
65
She asserts:
Potentially a reason that the “contract” argument is consistently raised is because merely stating that
donors’ medical records must be kept confidential might meet the argument that disclosure of the
identity should be one of the recognised exceptions to protection of privacy and/or confidentiality. Laws
protecting privacy and confidentiality recognise that these are not absolute concepts and permit a
balancing of interests.
In looking at samples of consent forms used in the past (the only form of written agreement that
appears to exist), Rees concludes that declarations and statements of consent which contained
“anonymity” promises “fall short of the binding contract that one might expect, given the frequent
arguments that there are contractual guarantees of anonymity”.
66
They simply do not meet the
formalities or requirements for enforceable contracts at law, and do not in themselves support
arguments against release of information.
Further, using a contract for anonymity as a starting point for deciding whether access to
information should be granted or denied proves unsatisfactory.
67
Even where a “contract” may have
existed, there are two obvious problems. First, the donor offspring made no promises, and were not
party to the contract, and thus any rights they have cannot be excluded by a contract between the other
adults involved.
68
Secondly, the law of contract recognises that some contracts should not be enforced,
61
See eg Brianna v Brianna (2010) 43 Fam LR 309; [2010] FLC 93-437; [2010] FamCAFC 97, discussed in Chisholm R,
“Parentage: Some Testing Problems” (2010) 24 AJFL 242 at 391 (Brennan and McHugh JJ); S v McC (formerly S) [1972] AC
24 (Lord Hodson); G v H (1994) 181 CLR 387; G v H (1993) 113 FLR 440; 16 Fam LR 525; [1993] FLC 92-380 at 79,942
(Fogarty J); Taylor v Burgess (2002) 29 Fam LR 167; [2002] FLC 93-120; W and G (No 1) (2004) 35 Fam LR 417; [2005] FLC
93-247; Re D (Paternity) [2007] 2 FLR 26 (Hedley J), discussed by Bryant CJ in Brianna v Brianna (2010) 43 Fam LR 309 at
[23], and by Smart C, “Law and the Regulation of Family Secrets” (2010) 24(3) International Journal of Law, Policy and the
Family 397, cited in Chisholm, n 49 at 734.
62
Pratten v British Columbia (Attorney General) 2011 BCSC 656 at [38].
63
For example, see Senate Report, n 1, Submission 49 (Canberra Fertility Centre) p 7; Submission 106 (Fertility Society) p 11.
64
Senate Report, n 1, Submission 49 (Canberra Fertility Centre) p 7.
65
Rees A “Keeping Mum about Dad: ‘Contracts’ to Protect Gamete Donor Anonymity” (2012) 19 JLM 758 (below).
66
Rees, n 65 at 768.
67
Allan, n 1 at 371-373; Chisholm, n 49 at 732.
68
Allan, n 1 at 372; Chisholm, n 49 at 732.
Guest editorial
(2012) 19 JLM 631 639
most obviously those that are illegal or contrary to public policy.
69
Doubts about the propriety of
deceiving donor offspring may therefore make any such contract voidable.
70
However, “rejecting the contract analogy … does not mean disregarding what underlies it”,
71
particularly where one is looking at retrospectively opening records as this may create difficulties for
some individuals who participated in donor conception with the expectation of anonymity. All authors
in this Special Issue agree that issues related to their privacy/confidentiality need to be considered.
However, suggestions vary as to how to address these issues. For example, in a recent article on the
question of whether retrospective release of information was possible, the current author suggested a
model that mirrors the approach taken toward adoption in some jurisdictions in Australia – that is, a
model in which donor privacy interests may be protected by “contact vetoes”, while allowing
donor-conceived people access to information.
72
In this Special Issue, Chisholm explores the option of
contact vetoes, and contends they are a reasonable compromise. He also suggests it might not be
necessary to go so far as to impose criminal sanctions for breach, relying instead on people’s sense of
decency and respect. Cahn similarly calls for “contact vetoes”, while also describing the less strict
approach of contact preference forms.
73
Tobin, in relation to retrospective release of information,
suggests contacting each donor and asking for them to voluntarily record their information on a
register.
74
Rees does not state a position on what might practically be done, ultimately calling,
however, for the legislature to make clear the position regarding contracts and release of
information.
75
Notably, the issues surrounding contract, privacy and/or confidentiality are not seen by
any of the authors, however, to negate the call for information from donor-conceived people.
Other considerations
It is also briefly noted here that some recipient parents and donors have also called for release of
information and an end to secrecy.
76
They wish to be open and honest with the people who are most
affected by donor conception practices, and to end the secrecy which they feel they have been forced
to maintain.
77
As such, the contract and/or privacy interests of those donors who do not wish for
information to be released need also be weighed against the interests of recipient parents and other
donors who call for information exchange.
78
EXPLORING PARADIGMS IN WHICH LEGAL RIGHTS OR INTERESTS MAY BE
BALANCED
The question thus becomes: how do we balance the interests of all parties involved? There are
different legal paradigms which may be used to further consider this question. Is it a question of
“rights” or “interests”? Interestingly, both approaches support release of donor information, but,
depending on how the approach is applied (and by whom), the practical suggestions related to
releasing information may differ.
Human rights discourse
Arguments based upon a human rights framework for releasing information have existed for some
time. For example, in 1998, Ramsey stated:
69
Allan, n 1 at 371-372; Chisholm, n 49 at 732.
70
Chisholm, n 49 at 732.
71
Chisholm, n 49 at 732.
72
Allan, n 1 at 363, 375.
73
Cahn N, “Legal Parent Versus Biological Parent: The Impact of Disclosure” (2012) 19 JLM 790 (below).
74
Tobin J, “Donor-conceived Individuals and Access to Information About Their Genetic Origins: The Relevance and Role of
Rights” (2012) 19 JLM 742 (below).
75
Rees, n 65 at 768.
76
Further discussion of the call for information by recipient parents and donors is found in Allan, n 1 at 366-368.
77
Allan, n 1; Adams and Lorbach, n 28 at 709.
78
Allan, n 1.
Guest editorial
(2012) 19 JLM 631640
Principles from the domain of human rights can provide an important framework for responding to one
of the most pressing challenges confronting reproductive technology … access by donor offspring to
information about their origins … [P]ut at its most succinct, from a human rights perspective, one might
ask the question – how can one argue against the basic human right to know one’s genetic identity?
79
Such a view has been the basis for the Convention on the Rights of the Child (the Convention)
being used to justify laws in some European nations that prohibit anonymous donation, and require
information release.
80
Particular emphasis has been placed upon Art 7 of the Convention, which
specifies that every child has a right to know and be cared for by their parents as far as possible.
81
With respect to this Article, the Implementation Handbook for the Convention on the Rights of the
Child states:
[A] reasonable assumption is that, as far as the child’s right to know his or her parents is concerned, the
definition of “parents” includes genetic parents (for medical reasons alone this knowledge is of
increasing importance to the child) and birth parents, that is the mother who gave birth and the father
who claimed paternity through partnership with the mother at the time of birth (or whatever the social
definition of father is within the culture: the point being that such social definitions are important to
children in terms of their identity).
82
As early at 1994, the United Nations Committee on the Rights of the Child also noted the possible
contradiction between Art 7 of the Convention and the policy of the state party in relation to artificial
insemination by donor, “namely in keeping the identity of sperm donors secret”.
83
Similar emphasis has been placed upon Art 8 of the Convention, which states that every child has
a right to preserve her or his identity, including nationality, name and family relations as recognised by
law without unlawful interference. Denying donor-conceived people access to information about their
genetic heritage may contravene this right by denying them access to important information that can
help in the development of identity and preserve family relations. With respect to this Article, the
Implementation Handbook notes:
The concept of “children’s identity” has tended to focus on the child’s immediate family, but it is
increasingly recognized that children have a remarkable capacity to embrace multiple relationships.
From the secure foundation of an established family environment, children can enjoy complex and
subtle relationships with other adults and with a range of cultures, to a much larger degree than may be
recognized. Thus children’s best interests and senses of identity may be sustained without having to
deny them knowledge of their origins, for example after reception into state care, through “secret”
adoptions or anonymous egg/sperm donations and so forth.
84
The European Court of Human Rights has also recognised in relation to Art 8 of the European
Convention on Human Rights that people “have a vital interest, protected by the Convention, in
receiving the information necessary to know and to understand their childhood and early
development”.
85
The message, at first glance, appears clear: pursuant to the above Articles, secrecy
and anonymity are not in the best interests of the child.
However, Tobin illustrates that the answer is not as clearly resolved by applying a human rights
lens when trying to balance competing interests. He recognises a need to move beyond the rhetoric of
human rights arguments to engaging in a substantive rights-based approach regarding the issues
79
Ramsey S, “Keeping Secrets and Telling Stories”, opening address at Donor Issues Forum organised by the South Australian
Council on Reproductive Technology, Adelaide, 30 May 1998.
80
For example, Sweden and Norway.
81
United Nations Convention on the Rights of the Child, opened for signature 20 November 1989, [1991] ATS 4 (entered into
force 2 September 1990).
82
Hodgkin R and Newell P, UNICEF Implementation Handbook for the Convention on the Rights of the Child (3rd ed,
UNICEF, 2007) p 105.
83
Norway CRC/C/15/Add.23 at [10].
84
Hodgkin and Newell, n 82, p 142.
85
Gaskin v United Kingdom (ECHR, Application No 10454/83, 1989). That Art 8 of the European Convention on Human
Rights may be engaged in the context of donor conception was recognised in Rose v Secretary of State for Health and Human
Fertilisation and Embryology Authority [2002] EWHC 1593 (Admin) at [48].
Guest editorial
(2012) 19 JLM 631 641
concerning donor-conceived people.
86
Such an approach involves balancing competing rights and
assessing the reasonableness of the proposed or actual interference with the human right in question.
To this end, there must be a consideration of the donor’s right to privacy too.
In considering the reasonableness of providing information to donor-conceived people by
applying this approach, Tobin concludes that there is a pressing social need that “donor anonymity
must be prohibited prospectively and donor-conceived individuals must be entitled to information
about their genetic parents”.
87
In particular, Tobin states that “a failure to ensure this access would
represent an inference with the rights of donor-conceived individuals for which there is no reasonable
justification”.
88
Regarding laws that may permit retrospective access to information, Tobin concludes that
the amendment of a law to allow for retrospective access to donor-identifying information runs counter
to the requirement under international human rights law that any interference with the right to privacy
must not only be prescribed by law, but that the law in question must be accessible and suffıciently
foreseeable.
89
He argues that retrospective legislation allowing information release to donor-conceived people would
never have been accessible and sufficiently foreseeable at the time donors were “guaranteed”
anonymity.
90
Importantly, however, he notes that a human rights approach would not support
retrospective release of information to an adoptee where anonymity was guaranteed either.
91
Of
course, this is contrary to what has occurred in numerous jurisdictions
92
that legislated to open records
for adoption retrospectively.
Nonetheless, while prospective release of information to donor-conceived people is strongly
supported by Tobin’s application of a human rights framework, there appears room for debate about
how to balance competing interests regarding retrospective release using a human rights framework.
Tobin concludes that the aim should still be to provide information in this context, stating that the
government has an obligation to contact donors and ask them to agree to release information, or
provide counselling to the donor-conceived person to support them in the event of a denial. In the
alternative, we may seek other resolutions (like the contact veto system),
93
or look to other
frameworks that may help to resolve these issues. In fact, Tobin notes that he does not
seek to dismiss or discredit discourses other than human rights that could be used to resolve the issue of
access to information for donor-conceived individuals. Instead [his] aim is to clarify, in a substantive
way, what it means to apply a human rights-based approach to this issue.
94
Similarly, Chisholm recognises that the problems are “surely too subtle and complex to be
resolved by any single formula, but the approaches discussed might help us develop a compassionate
86
Tobin, n 74 at 745-746.
87
Tobin, n 74 at 743.
88
Tobin, n 74 at 742.
89
Tobin, n 74 at 754 (emphasis added).
90
It may, on the contrary, be argued that the possibility of law enabling access to information by donor-conceived people has
always been “sufficiently foreseeable”. That is, donors might never have reasonably expected to remain anonymous. For
example, the 1983 Waller Committee said that “the donor shall be advised that there can be no guarantee of permanent, complete
anonymity”: Waller Report, n 29, pp 19-20. The Western Australian Reproductive Technology Council has also for some years
notified donors that “some time in the future it is possible that legislation may be further amended to make it a retrospective right
for all donor offspring to access identifying information about the donor”: see Western Australia, Reproductive Technology
Council website, http://www.rtc.org.au/faqs/index.html#anonymous_known viewed 4 April 2012.
91
Tobin, n 74 at 756.
92
Including all States and Territories in Australia.
93
Which in the author’s view might better balance competing interests (as opposed to giving the donor the absolute
decision-making power).
94
Tobin, n 74, fn 8.
Guest editorial
(2012) 19 JLM 631642
outcome”.
95
It is to Chisholm’s analysis of the adoption analogy, which considers various other
discourses and arguments for and against release of information that we now turn.
Adoption analogy: An interests-based approach
Psychologists have drawn many parallels between the experiences of donor-conceived people and
adoptees, particularly in relation to the problems described above that some people experience in
relation to genealogical bewilderment as a result of being denied access to information,
96
and the
secrecy that in the past shrouded both practices. Similarly, the Supreme Court of British Columbia
recently held that the circumstances of adoptees and those of donor offspring, with regard to the need
to know and have connection with one’s roots, are closely comparable.
97
In a legal context, where the
retrospective opening of adoption records has occurred, a “legal interests” approach has involved
weighing the possible injustices to one party that might be required to rectify a manifest injustice to
others. In drawing conclusions on this point, retrospective legislation is permissible if it serves to
rectify that manifest injustice.
98
Chisholm examines the information rights created in recent Australian adoption legislation to
date.
99
In detailing the secrecy that surrounded early adoption practices and the move towards
openness, the analogy between adoption and donor conception is drawn. While recognising that
adoption and donor conception are not in every way the same, he concludes that experiences from
adoption may inform decision-making about access to information by those involved in donor
conception. He notes that similar to donor conception practices, adoptive families used to be advised
to keep secret from the community and from the child what had occurred, but that studies have since
shown that openness and honesty about adoption are healthier for all concerned.
Chisholm concludes that donor-conceived people deserve the same, for the reasons of openness
and honesty and knowledge of oneself discussed above, and also based upon the Kantian principle that
individuals should not be used as a means to an end. In relation to this principle, Chisholm shows a
difference between adoption and donor conception that he states further demands release of
information to donor-conceived people. That is, unlike adoption – which is intended to benefit a child
already in existence – donor conception involves the creation of a new person. Chisholm states:
Although, of course, the parents will love their much-desired child intensely, we might hesitate to
describe the process as designed for the benefit of the individual created by it (in contrast to adoption).
Arguably, donor conception in circumstances of secrecy involves the creation of human beings in
circumstances where they will be misled about the truth of their genetic origins. It seems strongly
arguable that such a practice violates the Kantian principle.
100
He states that at the broadest level, the approach in adoption was to implement a system that
respects people’s rights to information, especially that which is of central importance to who they are
and how they live their lives. He agrees that contact vetoes may be used to protect peoples’ privacy by
ensuring they are left alone, while not preventing people from discovering the truth. His statement in
relation to donor-conceived people at the end of his article resounds:
[T]he case for information rights for donor offspring is at least as strong as the case for adoptees, and
arguably even stronger. In short, the adoption comparison provides strong support for the view that
donor offspring, when adult, should have an unconditional right to information about their genetic
origins.
101
Here it is useful to return to Tobin’s analysis for a moment. He, like Chisholm, recognises that, in
adoption, the child is already in existence, while with donor conception the child is not. However,
95
Chisholm, n 49 at 635.
96
Turner and Coyle, n 43.
97
Pratten v British Columbia (Attorney General) 2011 BCSC 656 at [3]. This case is discussed further below.
98
For detailed discussion of when legislatures may pass retrospective legislation see Allan, n 1 at 356-357.
99
Chisholm, n 49.
100
Chisholm, n 49 at 735.
101
Chisholm, n 49 at 739-740.
Guest editorial
(2012) 19 JLM 631 643
Tobin’s view is that, as “the motivation for [artificial insemination by donor] is to serve the
prospective parents interests”, retrospective release of information to donor-conceived individuals can
not rest on the same foundations as the release of information to adoptees. This again is important, as
it demonstrates that differences in starting point – child- or adult-focused, framework chosen, and how
that framework is applied – may lead to subtle differences in conclusions about whether and/or how to
release identifying information.
Nonetheless, in all articles in this Special Issue, there is a common thread: that information
release is generally called for, and all parties involved in donor conception need to be supported
through education, counselling and support services in relation to such release. Such services are
discussed following consideration of the actual experiences of those searching for information, and the
government inquiries that have ensued.
THE SEARCH FOR INFORMATION
The search for information is not restricted to donor-conceived people searching for their donor. The
current state of law in most jurisdictions also affects parents who are prevented from being able to
provide their children with information that many actually desire to impart; and donors, some of
whom do not wish to remain anonymous. What is apparent is that, given the absence of law or support
systems to assist them in most Australian jurisdictions, the search for information can lead to
frustration and despair.
102
The experiences of people regarding their search are most enlightening
when trying to determine whether legislation is needed to rectify their situation.
On being told of their donor conception, it appears that those who search follow a fairly uniform
path. Most donor-conceived people will begin their search for information looking for contextual
information (ie what donor conception actually is), and then proceed to asking the doctor or clinic
where the insemination took place for answers.
103
Adams and Lorbach highlight the frustrations that
information-seekers may meet when approaching the clinics involved in their conception.
104
In
describing both a survey they conducted and the experiences of donor-conceived people, recipient
parents and donors, they illustrate just how difficult the search for information is.
105
They report that
clinics may not respond, or if they do, applicants may be given different information at different times.
They also highlight that there is no standardised consensus between clinics as to the amount of
personal and non-identifying information that is collected.
106
Similarly, they report that while some
clinics say they are willing to facilitate contact or help with the search for information, the information
made available varies, as does the knowledge that clinic staff may have of the regulations and
legislation governing the industry in which they work. Adams and Lorbach emphasise that, for some,
this has led to fruitless and frustrating experiences with clinicians who are often the “gatekeepers” of
information.
107
While some simply give up their search at this point, others may turn to “sleuthing”, such as those
who were born in the 1970s and early 1980s searching medical school yearbooks for potential
look-a-likes because of the belief that many donors in those times were medical students.
108
Others
move (or are thrust) down the path of clinic or jurisdiction-based voluntary registers and DNA
testing.
109
However, Adams and Lorbach illustrate that these voluntary registers and certain types of
DNA testing prove unsatisfactory. As a result, they argue that the emergence and popularity of genetic
102
Adams and Lorbach, n 28.
103
Cushing AL, “‘I Just Want More Information About Who I Am’: The Search Experience of Sperm-donor Offspring,
Searching for Information About Their Donors and Genetic Heritage” (2010) 15(2) Information Research, http://
www.informationr.net/ir/15-2/paper428.html viewed 31 March 2012.
104
Adams and Lorbach, n 28.
105
Adams and Lorbach, n 28 at 710.
106
Adams and Lorbach, n 28 at 710.
107
Adams and Lorbach, n 28 at 710.
108
Cushing, n 103.
109
Adams and Lorbach, n 28 at 713-715.
Guest editorial
(2012) 19 JLM 631644
genealogy and publicly available online voluntary registers simply make clear that the models and
efforts currently employed by clinics and even government departments are failing offspring, their
families and donors, such that they are willing to undertake considerable time, effort and expense in an
attempt to discover information that is otherwise unavailable to them.
110
They argue that their years of
experience and exchanges with recipient parents, donors and offspring show a consensus that the best
way to resolve issues relating to information access is for the law to provide uniform access for all.
Here it is important to recognise that the starting point of such searches is for information, not for
a second parent, or even a relationship.
111
Cahn states that “arguments regarding disclosure of
information to donor-conceived individuals are entirely distinct from recognising parental rights and
responsibilities for the biological parents or gamete providers”.
112
She notes that disclosure of
information is not equivalent to saying, “donors are parents”.
113
Rather, information release would
simply provide donors, donor-conceived people and recipient parents with a basis to exchange
information. Put in this context, it is important to ensure and recognise that if laws were passed to
provide for such information release, such laws do not give rise to any other legal rights and
responsibilities for the donor. In addition, as with the suggestion for contact vetoes and/or contact
preference forms, such laws might include a requirement for disclosure of information but make clear
that this does not institute a requirement for contact unless all parties are agreeable.
114
In the meantime, Adams and Lorbach describe support networks that have been created in
response to little institutional support for the information quest.
115
Such support groups also have
engaged in years of lobbying government and policy-makers to change the laws that relate to
information release, focusing both upon prospective and retrospective release of identifying and
non-identifying information. But again Adams and Lorbach describe the constant disappointments and
frustrations in relation to this. Even where their lobbying has resulted in significant inquiries – such as
the Australian Senate Committee Inquiry into Donor Conception in 2010, and a report which followed
that recommended that a national register be set up as a matter of priority (discussed below) –
information release has yet to be achieved, eg through legislative reform.
RESEARCH AND INQUIRIES
In response to the call for information, there has been a growing body of research and inquiries that
focus upon arguments for and against releasing information to donor-conceived persons. In this
Special Issue, Blyth et al provide an exposé of the “relatively recent trend in academic research to
understand the perceptions and experiences of donor-conceived people who have learned of the nature
of their conception”.
116
They also note that the “American Society for Reproductive Medicine and the
Australian National Health and Medical Research Council openly advocate parental disclosure while a
2008 amendment to the United Kingdom’s Human Fertilisation and Embryology Act 1990 (UK)
provides legislative endorsement for early parental disclosure (s 13(6C))”, and further that “some
parents have explicitly taken a lead in advocating both disclosure of donor conception and the use of
donors who are willing to disclose their identity to offspring”.
117
In their review, Blyth et al conclude:
110
Adams and Lorbach, n 28.
111
Noting that for some people, establishing some kind of contact might be important and may be negotiated between the
parties. For discussion of how such linking may occur see Johnson L, Bourne K and Hammarberg K, “Donor Conception
Legislation in Victoria, Australia: The ‘Time to Tell’ Campaign, Donor-linking and Implications for Clinical Practice” (2012) 19
JLM 803 (below) and further discussion below.
112
Cahn, n 73 at 791.
113
Cahn, n 73 at 791.
114
Allan, n 1.
115
Adams and Lorbach, n 28.
116
Blyth E, Crawshaw M, Frith L and Jones C, “Donor-conceived People’s Views and Experiences of Their Genetic Origins: A
Critical Analysis of the Research Evidence” (2012) JLM 769 (below) which focuses on empirical studies published in
English-language, peer-reviewed journals.
117
Blyth et al, n 116 at 771.
Guest editorial
(2012) 19 JLM 631 645
[E]xisting research findings support the conclusion that the future choices of donor-conceived people
are necessarily limited when gametes or embryos from an anonymous donor are used and when
parent(s) choose not to tell them about the nature of their conception. If a donor-conceived person never
learns of the circumstances of her or his conception it has sometimes been presumed that no great harm
may be done. The accounts of many donor-conceived people in the reviewed studies regarding their
thoughts and feelings about themselves, their family and their place within their family both prior to and
following disclosure suggest that this presumption may not be robust. In addition, it is clear from these
studies that some (though not all) donor-conceived people experience great and long-lasting distress in
discovering the circumstances of their conception later, rather than earlier, in life. This review shows
quite clearly that neither the fact of donation nor the identity of an ostensibly anonymous donor will
necessarily remain concealed, even if parents are planning never to tell; nor can the reactions of
donor-conceived people to acquiring this information be predicted.
Such conclusions are similarly found in the 2010 Australian Senate Legal and Constitutional
Affairs References Committee (the Senate Committee) report on Donor Conception Practices in
Australia. The Senate Committee recommended that jurisdictions which do not already have
legislation in place should, “as a matter of priority”, introduce legislation to regulate donor
conception,
118
and that the “Australian Government pursue all available policy and political options
… to ensure that nationally consistent legislation relating to donor conception is developed”.
119
In
addition, 17 recommendations related to the preservation, recording and release of records concerning
identifying and non-identifying information
120
about donors to donor-conceived people.
121
These
included a call for the establishment, “as a matter of priority”, of a national register of donors
122
and
that this central register should operate according to principles which provide for donor-conceived
people to be able to access identifying information about their donor.
123
In a recent inquiry into donor conception practices, the Victorian Law Reform Committee
(VLRC) recommended that the Victorian Government introduce legislation to allow all donor-
conceived people to obtain identifying information about their donors regardless of when they were
born. As the basis to their recommendations, the VLRC found, among other things, that:
some donor-conceived people suffer substantial distress when they are unable to obtain
information about their donor, and/or if told of their donor-conceived status later in life;
current arrangements in Victoria for access to information by people conceived from gametes
donated prior to 1988 are confusing, inconsistent, and applied in a haphazard manner. Outcomes
differ depending on the treating clinic, and/or the treating physician, from which a person’s
parents received treatment;
the introduction of measures to provide all donor-conceived people with access to identifying
information will require legislative change;
the circumstances of donor-conception and adoption with regard to a person’s right to identifying
information are largely comparable;
all donor-conceived people should be aware of the manner of their conception. A person’s parents
should be principally responsible for informing that person of her or his donor-conceived status;
and
118
Senate Report, n 1, p 103, Recommendation 1.
119
Senate Report, n 1, p 103, Recommendation 2.
120
Identifying information would include the donor/donor-conceived person’s name, date of birth and address; non-identifying
information might include education (level and qualifications); eye colour; hair colour; height; weight; marital status; number of
children (if any); sex; year of birth; place of birth; nationality/culture with which the donor identifies; religion (if any); reason
for becoming a donor; number of offspring born through other donations; identity of other offspring born through other
donations; interests/hobbies/sporting activities; anything else the donor considers central to their personality. (It is difficult to
delineate some of the information as identifying or non-identifying as some information in combination might lead to the
identification of a person, but alone would be considered non-identifying.)
121
Senate Report, n 1, pp 103-109, Recommendations 3, 5-14, 19-21, 25, 31-32.
122
Senate Report, n 1, p 104, Recommendation 5.
123
Senate Report, n 1, pp 104-105, Recommendation 9. Arguably, such a register would also enable donors to receive
information about their offspring, and donor-conceived siblings to receive information about each other.
Guest editorial
(2012) 19 JLM 631646
if current arrangements permitting donor anonymity are changed to allow the release of
identifying information, measures to protect donors and donor-conceived people from
unreasonable interference in their private lives should be considered.
124
In relation to the final point, the VLRC have accepted the recommendation that a contact veto or
a contact preference form will protect donors from unwanted contact, while allowing for information
to be released. The VLRC did explore the option of contacting donors and asking for their consent;
however, in the end it rejected this option as it may simply leave donor-conceived people in the same
position – absent of information. Rather, the VLRC report suggests that once we acknowledge that
information is needed, then the best method of ensuring that this occurs is to enact legislation that
permits the opening of records. In balancing the competing interests of those donors who may not
wish for information to be released and the donors, recipients and donor-conceived people who call
for information, the VLRC states:
While the release of identifying information to donor-conceived people may potentially cause
discomfort and distress to donors (although this will not always be the case), it is certain that
donor-conceived people are actually suffering from their lack of knowledge about donors. Although
debates about the consequences of releasing identifying information often focus on the suffering that
donors may experience, the fact is that many donor-conceived people are already suffering, in some
cases quite profoundly, from not having access to this information.
125
The report signifies a shift to considering and hearing the voices of donor-conceived people, and
emphasising that the “best interest of the child” principle should not be empty rhetoric.
Notably, a government report that so clearly supports the retrospective release of information to
donor-conceived people is a world first. It may lead to changes that have long been called for but,
perhaps, were not expected. This is illustrated by the Chair of the Committee’s opening remarks.
Mr Clem Newton Brown says:
When the Committee commenced this Inquiry, it was inclined toward the view that the wishes of some
donors to remain anonymous should take precedence – as they made their donation on that basis – and
that identifying information should only be released with a donor’s consent. Upon closer consideration,
however, and after receiving evidence from a diverse range of stakeholders – donor-conceived people,
donors, parents, medical and counselling professionals, department representatives, and academics – the
Committee unanimously reached the conclusion that the state has a responsibility to provide all
donor-conceived people with an opportunity to access information, including identifying information,
about their donors.
126
That the Committee’s conclusions were unanimous is striking.
Finally, it is important to note that the VLRC has also recognised the importance of sensitivity,
counselling, education and public awareness campaigns in raising awareness and offering support for
all involved in information exchange.
127
To this end, their recommendations draw on the experience of
the Victorian Assisted Reproductive Authority (VARTA)
128
in these areas, and suggest they might play
an important role should legislation be passed. VARTA’s ability to provide counselling, education and
facilitation is discussed in the next section.
EDUCATION,COUNSELLING AND SUPPORT SERVICES
Johnson et al detail two initiatives developed by the former Infertility Treatment Authority (ITA), now
the Victorian Assisted Reproductive Treatment Authority (VARTA): the “Time to Tell” information
and education campaign, designed to provide parents with strategies for how to tell their children that
the family was formed using a donor, and a unique service model developed for linking biologically
124
Victorian Law Reform Committee, n 1, p xxix.
125
Victorian Law Reform Committee, n 1, p 73.
126
Victorian Law Reform Committee, n 1, p xvii.
127
Victorian Law Reform Committee, n 1, p xvii.
128
The current regulatory body in Victoria for assisted reproduction.
Guest editorial
(2012) 19 JLM 631 647
related parties.
129
The Victorian initiatives were based upon research that parents often find it difficult
to tell their children about their donor origins. Reasons for secrecy in this context were cited as
including “not wanting the child to feel different or disappointed if they are unable to find their donor,
to protect the non-biological parent, feelings of shame or embarrassment, feeling that there is no need
to tell, and not knowing how or when to tell”. Johnson et al note that “while the burden of keeping
secret the use of a donor is keenly felt by many parents … they also report fears and anxieties about
telling children about their donor origins”.
130
The Victorian initiatives were therefore aimed to raise
awareness of the implications of legislation in Victoria that provided for information release; to inform
parents of donor-conceived children about the benefits of telling children about their donor; and to
assist them in telling their children about their donor origins.
For the “Time to Tell” campaign, the ITA used media advertising and public relations campaigns,
maintained a website to disseminate information about donor conception, and produced resources such
as brochures and podcasts to advise parents about how to communicate with children of various ages
about their donor origins. Community education activities were also conducted, including public
seminars for parents, donor-conceived people and donors, along with assisted reproductive technology
clinics and consumer groups. Johnson et al emphasise how attendance at such seminars has steadily
grown, and has had significant reach.
131
In relation to the ITA Donor Register Services, Johnson et al detail the unique donor-linking
services model, which closely followed the Counselling Guidelines developed by the Australian and
New Zealand Infertility Counsellors Association. The steps involved for applications to the Central
Register (upon which mandatory identifying and/or non-identifying information may have been held)
involved counselling at all levels regardless of whether or not information was available, and whether
or not it was identifying or non-identifying.
132
In cases where identifying information was available,
the ITA assisted the applicant to establish contact via a “letter drop service” with the person about
whom information was available, and acted as an intermediary between the parties in relation to how
much information they wished to exchange.
133
Again, counselling was available for guidance
throughout the process. In relation to the voluntary register, people were supported in placing their
information on the register, searching for a match, and counselled in relation to whether or not such a
match existed, and if so how to proceed. Again, what is significant about the service model described
by Johnson et al is the level of support provided to applicants for information and the counsellor’s role
as an intermediary.
The process, complexities and outcomes detailed by Johnson et al in relation to the donor-linking
service provide valuable insight into how connecting people who are genetically related through donor
conception is not quick or easy, but is one in which support, education and counselling for all involved
can lead to very positive outcomes. As the numbers of donor-conceived people increase, and more
people are told about their origins, it is to be expected that the demand/need for such services will
grow, recalling the experiences outlined by Adams and Lorbach in relation to those who search for
information absent of such support systems at present. If the veil of secrecy shrouding donor
conception is removed, we should proceed with the knowledge that a very good service model exists
in Victoria and can be emulated in other jurisdictions. The VLRC has recommended a return to this
model to facilitate the retrospective release of information to donor-conceived people.
134
129
Johnson et al, n 111.
130
Johnson et al, n 111 at 809.
131
Johnson et al, n 111 at 811.
132
Johnson et al, n 111 at 813.
133
Johnson et al, n 111 at 813.
134
Victorian Law Reform Committee, n 1.
Guest editorial
(2012) 19 JLM 631648
CONCLUSION
Donor conception is a practice that has been veiled by a long history of secrecy that predominantly
focused on legal, moral and religious issues concerning the adults involved (donor, recipient parent
and clinicians). Over time, it has become apparent that some offspring born as a result have had a
heavy burden to bear in relation to such secrecy.
The question of recent times therefore has been whether the law should operate to abolish
anonymous donation in all jurisdictions,
135
and, more contentiously, to open the records of the past to
provide donor-conceived persons already in existence with information about their genetic heritage.
The difficulty with the latter is in balancing the competing interests of those who seek information
with those who wish to keep the secret (be it a donor who wishes to preserve anonymity or the
recipient parents not wishing to tell their child).
Retrospective legislation is permissible in such circumstances (and has been used specifically in
the assisted reproductive technology context to recognise legal parentage of donor-conceived people
for same-sex partners of birth mothers).
136
There is also clear precedent, by way of considering
information release in the adoption context that shows that the law can, and does, balance interests,
and at times makes a compromise. “If a donor-conceived person wishes to identify their donor, and the
donor wants to keep their identity a secret, the law cannot satisfy both. The interests are competing,
and the law must choose between them, or in addressing the interests it must seek a compromise.”
137
Chisholm, Tobin and Rees clearly articulate the need to be sensitive to all parties involved. Generally,
with adoption,
the view that prevailed was that the law should enable adopted persons and birth parents to have the
right to information, even though this did mean a change from the position as it was when the adoption
order was made. The interests of those who felt threatened by the new law were acknowledged by a
number of measures, notably the contact veto system.
138
The recent Victorian Law Reform Committee inquiry has accepted the proposal that this approach
should also be taken when balancing the interests of donor-conceived people and those donors who
wish not to have their privacy disturbed. In the adoption context such a decision reflected the starting
points explained by Chisholm: openness and honesty, knowledge about oneself, and not using
individuals as a means to an end. Again, a parallel may be drawn.
The current author’s own view is that the secrecy surrounding donor conception needs to be
something of the past. We are no longer in the 19th century, we are in the 21st. We celebrate different
family formations, and should support them in being open and honest. While not all donor-conceived
people will want information, access for all should be possible. They can then, at least, make the
choice. Donors who do not wish to have contact with the offspring created using their gametes may
lodge a contact veto. This is an effective way to protect their privacy while not denying information to
people for whom access is fundamental to their sense of self and wellbeing.
The recommendations of both the Australian Senate Committee and the VLRC show a growing
consensus on this issue, and will undoubtedly be welcomed by those donor-conceived people who
have been telling their stories for years, and waiting for people to listen. However, it remains to be
seen whether the Parliament will enact legislation that reflects this remarkable shift in the tide.
Victoria has always led the way in developing and updating its legislation regulating assisted
reproductive treatment and access to information by parties to donor conception. Perhaps the expert
and authoritative voices of the authors who have contributed to this Special Issue of the Journal of
Law and Medicine will be useful in resolving any doubts. We are therefore left not with a conclusion,
but a question: do the recent recommendations of the Australian inquiries indicate a future of openness
135
Noting that guidelines are not law and the call is for legislative intervention to prohibit anonymous donations and to
additionally notify donor-conceived persons of the method of their conception.
136
Allan, n 1.
137
Allan, n 1 at 375.
138
New South Wales Law Reform Commission, Review of the Adoption Information Act 1990, Issues Paper 7 (1992) at [3.16].
Guest editorial
(2012) 19 JLM 631 649
and honesty? The answer will be seen in what Australian legislatures do next and whether or not other
jurisdictions in the world follow.
Guest editorial
(2012) 19 JLM 631650
... Along with a growing recognition of the rights of donorconceived children to know their genetic parentage, donor anonymity has been coming under increasing scrutiny in a growing number of jurisdictions since the 1980s (Allan, 2018). As a result, the recipients' choice of opting for anonymous gamete donation in the course of treatment by means of assisted reproductive technology (ART) may be restricted by the policies and regulations of medical institutions providing the treatment, or by legal constraints such as mandatory donor registries in some countries (e.g., in the case of sperm donation in Sweden, the United Kingdom, New Zealand, and Germany). ...
... First, since the 1980s many countries have observed a growing trend toward a policy of increased openness in ART involving gamete donation, both in the form of encouraging disclosure of the mode of conception to the donor-conceived offspring as well as promoting legislative measures to ban donor anonymity (Allan, 2018). This legislative trend started with Sweden, which in 1985 became the first country to remove donor anonymity, and is still ongoing with Germany implementing its Sperm Donor Registry Act as recently as 2018. ...
... The major driving force behind this development is considered to be the increasing acknowledgment of the right of donor-conceived children to know their genetic parentage, which involves being informed about one's status of being donor-conceived and being granted access to both non-identifying and identifying information about the donor. This right is in turn underpinned by a growing recognition of the impact that the denial of this information could have on the process of identity formation of a donor-conceived child and the importance to have access to one's genetic parents' medical history (Allan, 2018). In many jurisdictions, the process of implementing policies and regulations banning donor anonymity is triggered or reinforced by the voices of individual or organized donor-conceived persons demanding a recognition of their rights. ...
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The decision to use an anonymous gamete donation in fertility treatment could have significant long-term psychological and social effects for all stakeholders involved. In light of the growing recognition of donor-conceived children’s right to know their genetic parentage, this entails profound ethical implications. This review aims to carve out the full spectrum of recipients’ motives and experiences related to donor anonymity which could serve as an analytical framework for future ethical and sociological research on issues of donor anonymity. This review was conducted following a seven-step approach for systematic reviews of empirical bioethics literature. The characteristics and quality of the studies included in this review were reported. Data analysis was conducted using qualitative content analysis and was informed by sociological functionalist theorizations of ignorance. The 53 studies selected showed a diverse spectrum of characteristics concerning date and country of study, methodology, family type of participants, sample size, and the timing of data collection in relation to the stage of treatment. A total of 22 categories of motives and experiences of recipients concerning donor anonymity were identified inductively and grouped into five main categories. Donor anonymity was identified as a eufunctional form of ignorance, by which the recipients experienced or intended to control, regulate, or protect inter-stakeholder relations. Interpreting recipients’ motives and experiences concerning donor anonymity as a form of ignorance directed toward particular stakeholders helps reframe the discourse on donor anonymity. It is a fruitful approach that can be refined further and applied in future research. This review identified possible directions for future investigations on motives for donor anonymity: the need for more thorough inquiries into the change in recipients’ preferences over time, such as in the form of longitudinal studies and research on the perspective of non-biological parents.
... Anonymous gamete donation is a practice found in most jurisdictions around the world (Allan 2012). In some countries such as Spain, France, and Denmark, the anonymity of donors is explicitly protected by legislation (Blyth and Frith 2009). ...
... However, this practice has come under increased scrutiny (Cahn 2009;Velleman 2005;Ravitsky 2012;Somerville 2011;Cowden 2012). Sweden, Austria, Switzerland, the Netherlands, Norway, the United Kingdom, New Zealand, and Finland, as well as the Australian states of Victoria and New South Wales now mandate that donors be identifiable to their genetic offspring 1 (Allan 2012;Blyth and Frith 2009). The primary reason for the current trend prohibiting anonymity is the belief that donor-conceived children have a fundamental moral right to know their genetic origins and that policies promoting identity release can protect such moral right (Velleman 2005;Cahn 2009;Cowden 2012). ...
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Background: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor oocyte program and to understand the ways in which anonymity functions for them. Methods: Semistructured interviews were conducted with 50 women: 28 oocyte donors and 22 recipients who were recruited from an academic center for reproductive medicine in the United States. Results: Donors and recipients view anonymity both as a mechanism to protect the interests of all parties (recipients, donors, and donor-conceived children) and as a point of conflict. Specifically, three key areas were identified where both donors and recipients saw anonymity as having an important role: relieving anxieties about family structures and obligations; protecting their interests and those of donor-conceived children (while acknowledging where interests conflict); and managing the future. Conclusion: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options.
... New Zealand's 'open' policy and practice is informed by research suggesting a link between access to genetic knowledge and identity development in donor-conceived offspring and is in line with that of countries such as the United Kingdom, Australia, Sweden, and the Netherlands (Allan, 2017;Bracewell-Milnes et al., 2016;Nordqvist, 2014;Pasch, 2018). In New Zealand, gamete donation practice is managed by accredited clinics in accordance with the requirements of the HART Act 2004 (Fertility Society of Australia & New Zealand, 2021). ...
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Egg donation has becoming increasingly common however there is a shortage of donors in many countries, including New Zealand. Research regarding motivations to donate in the context of New Zealand’s open-identity and altruistic donation policy and practice is, thus far, limited. This in-depth qualitative study comprised interviews with 21 women to examine their motivations in donating to recipients previously unknown to them. Donors valued parenthood highly and had become aware of the fertility struggles of other women through their own experiences, those of friends or family, or through online personal accounts or advertising. The ability to select recipients and build a comprehensive picture of them, such as through reading recipient profiles or meeting them in person, as is possible in New Zealand, deepened their identification with recipients and thus their empathy and desire to help. They resisted commercial models, positioning themselves as by nature altruistic and regarding their donations as expressions of solidarity and acts of personal gift-giving to specific others who became known to them through donation. Donation was interpreted as a socially relational process, setting up expectations around relationships and ongoing connection. Such understandings have implications for recruitment as well as ongoing experiences and support needs.
... The legal issues raised, however, were complex-there were issues regarding the rights and interests of donor-conceived people to information, the right to privacy of donors, whether there existed a contract for anonymity, how to balance human rights when such rights may conflict, the comparison between the approach taken for the release of information to adoptees and that which might be taken for donor-conceived people and, of course, whether and, if so, how information could be released (Allan, 2011a). To explore such issues further, it was necessary to call upon experts in relevant areas of law and practice, as well as donor-conceived people, recipients and donors, to draw on their experiences, and to research and write articles examining each specific issue raised in more detail (Adams & Lorbach, 2012;Allan, 2012a;Blyth, Crawshaw, Frith, & Jones, 2012;Cahn, 2012;Chisholm, 2012;Rees, 2012;Tobin, 2012;Johnson, Bourne, & Hammarberg, 2012). The outputs of such research were provided to the Victorian inquiry. ...
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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.
... 2009; Cowden, 2012;Ravitsky, 2012;Somerville, 2011). Although anonymous egg donation continues to be practised in most jurisdictions around the world, and some countries, such as Spain, France and Denmark, explicitly protect the anonymity of donors by legislation, an increasing number of countries, including Sweden, the Netherlands, Norway and the UK, now mandate that donors be identifiable to their genetic offspring (Allan, 2012;Blyth and Frith, 2009). Critics of anonymity practices often argue that they frustrate several fundamental and uncontroversial (and, as such, termed 'vital') interests of donor-conceived individuals and that protection of these interests calls for legal prohibition of anonymous donation (Cahn, 2009;Cowden, 2012;Velleman, 2005). ...
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Anonymous gamete donation continues to be practised in most jurisdictions around the world, but this practice has come under increased scrutiny. Thus, several countries now mandate that donors be identifiable to their genetic offspring. Critics contend that anonymous gamete donation harms the interests of donor-conceived individuals and that protection of these interests calls for legal prohibition of anonymous donations. Among the vital interests that critics claim are thwarted by anonymous donation are an interest in having a strong family relationship, health interests and an interest in forming a healthy identity. This article discusses each of these interests and examines what they could involve. The legislation in two countries is considered: Spain, which mandates anonymous gamete donation; and the UK, which prohibits such practice, to assess how these different legislations might or might not protect these vital interests.
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The capability of US mental health clinicians to confidently use scientific, rigorous information to authenticate their counseling practice is critical to successful mental health provision. In this age of genetics, the provision of substandard, ill-informed mental health professional services through non-evidence-based science has negative clinical implications for patients, families, and the behavioral health field. With exponentially increasing access to genetic testing, the high prevalence of discovering an unknown genetic parentage is a new phenomenon. This study aims to assess in-service and accredited training within NAMI mental health professional disciplines which serve US donor-conceived (DC). DC adults are one specific type of misattributed parentage (MP) population. Misattributed parentage situations include: unknown/undisclosed extramarital affair/tryst, adoption (hidden, orphan, foster care, late discovery adoptees), assisted conception (DC, sperm donation, egg donation, embryo donation, surrogacy, dna clinic mix-up etc.), rape or assault, or another event. The study’s findings included the lack of DC/MP curricula, clinical advocacy benefits, and clinicians’ need to understand genetics. Also, the study found future participatory research must include DC-related stakeholders (DC, donors, social/biological nuclear family, fertility industry, DNA testing companies, etc.). Clinicians called for cross-discipline communities of practice, the need for federal DC reporting, and research on modalities to treat specific DC-trauma/identity issues (eg. excessive numbers of siblings, specific legal/ethical issues, wide denial of known relationships, etc.). Most notably, clinicians agreed on the need to educate themselves via revamped association in-service and accredited academic training using donor-conceived-client-centered approaches and industry-standard behavioral health practices to improve donor-conceived peoples' health and mental well-being.
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Current birth registration systems fail to serve adequately the interests of those born as a result of gamete and embryo donation and surrogacy. In the UK, changes to the birth registration system have been piecemeal, reactive and situation-specific and no information is recorded about gamete donors. Birth registration has thereby become a statement of legal parentage and citizenship only, without debate as to whether it should serve any wider functions. This sits uneasily with the increasingly accepted human right to know one’s genetic and gestational as well as legal parents, and the duty of the State to facilitate that right. This commentary sets out one possible model for reform to better ensure that those affected become aware of, and/or have access to, knowledge about their origins and that such information is stored and released effectively without compromising individual privacy. Among other features, our proposal links the birth registration system and the information stored in the Human Fertilization and Embryology Authority’s Register of Information, although further work than we have been able to undertake here is necessary to ensure a better fit where cross-border treatment services or informal arrangements have been involved. The time for debate and reform is well overdue.
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This article addresses the changing relationship between traditional legal definitions of motherhood and fatherhood and newer scientific definitions of parenthood. It is acknowledged that procedures like DNA testing have transformed legal interpretations, but in so doing it is argued that the social and cultural significance of kinship has been squeezed out of consideration. There is now an almost unassailable presumption that it is best for a child to know his or her genetic origins, yet there is also evidence that families still keep certain matters (eg donor conception) a secret. These families are increasingly defined as out of step with modern, ethical thinking yet it may be important to understand how such families define a child's welfare. The problem with knowledge about genetic links is that it is not mere 'information' but is powerful knowledge that changes relationships regardless of the wishes of those involved. The fear of such changes may mean families prefer to reject openness, especially if the risks of loss appear too high. These issues are explored through data on family secrets and also through an unusual legal case involving a child who took the decision not to know his own genetic origins. The article concludes that it is important, in the rush to impose transparency and openness on families, that we are aware of the negative as well as positive consequences. © The Author 2010. Published by Oxford University Press. All rights reserved.
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Access to genetic origins information in donor assisted conception Attitudes, policies and legislation concerning the management of genetic origins information in donor assisted conception vary considerably throughout the world. An ad hoc Committee of experts on progress in the biomedical sciences established by the Council of Europe (Council of Europe 1989) determined to uphold donor anonymity as a general principle, but recognised the right of individual states to allow offspring access to information about their conception, including the identity of the donor. Few countries have introduced legislation. In its absence donor anonymity is the norm, although some countries permit donor offspring to discover the identity of the donor, subject to the donor’s express consent (e.g. New Zealand). Among European Union member states that have introduced legislation Spain and the UK protect donor anonymity but allow donor offspring access to some non-identifying information about the donor. Danish legislation guarantees donor anonymity and does not provide individuals with any legal right to establish whether or not they have been born following donor assisted conception. Austria and Sweden have both introduced legislation permitting donor offspring to discover the identity of the donor ‐ at the age of 14 and at ‘maturity’ respectively. In addition the Swedish legislation states that parents who have children following donor insemination ought to tell the child that they were born as a result of such treatment ‘as early as possible and at a time that they themselves find suitable’ (Jonsson 1988). In the State of Victoria (Australia) the Infertility Treatment Act 1995, that came into force on 1st. January 1998, provides that at age 18 donor offspring may have access to the donor’s identity. However it extends rights of access to information to other parties. Recipients of donated gametes may know the donor’s identity and, with the consent of recipients, donors may know the identity of the recipients and child(ren). At age 18 donor offspring may give consent on their own behalf to the donor learning of their identity. The descendants of donor offspring also
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This article considers the legal status of so-called contracts for anonymity between fertility clinics and donors of gametes that were made in the period before legislation authorising disclosure. It notes that while clinics frequently cite the existence of these "contracts" to argue against retrospective legislation authorising disclosure of the donor's identity, they may be nothing more than one-sided statements of informed consent. However, the article notes that even if an agreement between a donor and a clinic is not contractual, it does not follow that a person conceived through assisted reproductive technology has any right of access to the identity of the donor. The writer has not been able to locate examples of written promises by the clinics promising anonymity. There are written promises by the donors not to seek the identity of the recipients. These promises do not bind the resulting offspring nor do they appear to be supported by consideration. The article suggests that the basis for any individual donor to restrain a clinic from revealing their identity may be found in promissory estoppel. Nevertheless, there is no real issue in Australia concerning clinics revealing these details absent legislative authority. The issue is whether parliaments will legislate to authorise the disclosure. The article notes that it would be rare for parliaments to legislate to overturn existing legal contracts but suggests that the contract argument may not be as strong as has been thought.
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This article reviews the Australian experience in providing information rights for people separated through adoption, and considers its relevance in adjusting the competing interests of those involved in donor conception. The Australian laws, which differ from State to State, create information rights for adults who have been adopted, and also--with more qualifications--for other family members, such as birth parents and siblings. Some laws also seek to protect privacy, notably by use of the "contact veto". The author argues that the review of the Australian laws provides strong support for the rights of donor offspring, when adult, to information about their genetic origins. It also raises important questions about the rights and interests of other family members involved in donor conception, and how they might be accommodated.
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Donor conception practices in Australia have left thousands of donor-conceived people, their families and gamete donors bereft of information. The lack of a nationally timeline-consistent approach to information access has driven these people to seek support and information from self-help groups, online communities and even their own DNA. This article examines the historical perspective of information access and how progress is being made through lobbying and public awareness. To determine the current status of information availability, fertility clinics around Australia were surveyed. It is argued that current practices continue to fail donor-conceived people, their families and gamete donors, and that until all donor offspring are afforded the right to know their genetic family history, they will continue to suffer discrimination, and potentially risk psychological and physical trauma.
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Introduction. This paper discusses the findings of a qualitative study of sperm-donor offspring conceived in the United States who have searched for information about their donors and genetic heritage. It explores how these individuals search for information and the characteristics of such searches. Method. Sixteen telephone interviews were conducted with sperm-donor offspring who had engaged in varying levels of search for varying amounts of time. Analysis. Interview transcripts were coded with codes initially developed from the interview guide. Results. Results indicate that sperm-donor offspring often begin their search by talking to their mother and then trying to contact their mother's doctor, very soon after being told that they were donor-conceived. Next, individuals use University yearbooks to find "look-alikes." Eventually, some donor offspring attempt to contact prospective donors. Conclusions. Overall, this research demonstrates the sometimes intense, emotional and personally driven nature of search. Many participants engaged in search to gain a greater sense of their identity and self.
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To provide an in-depth analysis of offspring attitudes toward their means of conception and the practice of sperm donation in the United States. Survey-based study using a 46-item questionnaire. Eighty-five adult offspring of sperm donation. Participants were recruited through an Internet-based support group for adults conceived through sperm donation. Eighty-five of them completed the questionnaire provided through a link to another Internet site. Responses to a 46-item questionnaire. A majority of offspring learned of their conception at age >18 years during a planned conversation; had no information about their donor; viewed their donor as their "biological father"; had searched for and wanted identifying information on their donor and half-siblings; and supported the provision of extensive nonidentifying information or identity release in the practice of sperm donation. Participant attitudes toward their means of conception were evenly distributed from "very good" to "very bad." Other descriptive information on participants contributed to an understanding of their attitudes. Participant ratings of their conception were evenly distributed from "very good" to "very bad." Most believed that identifying information should be provided to recipients and that they themselves would not participate in the practice of gamete donation.
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Frequent comparisons are made between adoptive families and those families formed through artificial means of reproduction, particularly those involving sperm and egg donation. It is claimed that problems from the latter arising out of the extent of the child's knowledge of his/her parentage may be handled with reference to the solutions found within adoption to similar problems. This paper examines those claims and questions the initial premise. It argues that problems remain within British adoption on the issue of openness, at the level of legislation, administration and professional practice. It argues that problems remain because of an uneasiness which still persists about adoption as an institution. Moves to make the practice of adoption more open have, in effect, disguised but not eliminated this uneasiness. An attempt to extend those ‘solutions’ to artificial reproduction might (a) suggest similar ambivalence about those practices and (b) lead to claims which again disguise rather than solve those ambiguities. The paper concludes therefore that adoption might be a useful precedent for artificial reproduction but more in the way it poses questions which remain to be answered, than as a source of solutions for direct application.
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Current AID practices are based primarily on consideration of protecting the interests of practitioners and donors rather than recipients and children. The most likely reason for this is found in exaggerated fears of legal pitfalls. It is suggested that policy in this area should be dictated by maximizing the best interests of the resulting children. The evidence from the Curie-Cohen survey is that current practices are dangerous to children and must be modified. Specifically, consideration should be given to the following: 1. Removing AID from the practice of medicine and placing it in the hands of genetic counselors or other nonmedical personnel (alternatively, a routine genetic consultation could be added for each couple who request AID); 2. Development of uniform standards for donor selection, including national screening criteria; 3. A requirement that practitioners of AID keep permanent records on all donors that they can match with recipients; I would prefer this to become common practice in the profession, but legislation requiring filing with a governmental agency may be necessary; 4. As a corollary, mixing of sperm would be an unacceptable practice; and the number of pregnancies per donor would be limited; 5. Establishment of national standards regarding AID by professional organizations with input from the public; 6. Research on the psychological development of children who have been conceived by AID and their families. Dr. S.J. Behrman concludes his editorial on the Curie-Cohen survey by questioning the "uneven and evasive" attitude of the law in regard to AID, and recommending immediate legislative action: The time has come--in fact, is long overdue--when legislatures must set standards for artificial insemination by donors, declare the legitimacy of the children, and protect the liability of all directly involved with this procedure. A better public policy on this question is clearly needed. I have suggested that agreement with the need for "a better public policy" is not synonymous with immediate legislation. The problem with AID is that there are many unresolved problems with AID, and few of them are legal. There is no social or professional agreement on indications, selection of donors, screening of donors, mixing of donor sperm, or keeping records on sperm donations. Where there is agreement, such as in requiring the signature of the donor's wife on a "consent" form, the reasons for such agreement are unclear. It is time to stop thinking about uniform legislation and start thinking about the development of professional standards. Obsessive concern with self-protection must give way to concern for the child.