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University of Technology Sydney Law Research Series |
Last Updated: 7 March 2017
Reflecting the ‘Human Nature’ of IVF Embryos: Disappearing Women in Ethics, Law, and Fertility Practice
Jenni
Millbank[♣]
Abstract
Many
laws and ethical documents instruct us that disembodied embryos created through
IVF processes are not mere tissue; they are ‘widely
regarded’ as
unique objects of serious moral consideration. Even in jurisdictions which
disavow any overt characterization
of embryonic personhood, the embryo, by
virtue of its uniqueness and orientation towards future development, is said to
have a ‘special
status’ or command ‘respect’. The woman
whose desire for a child or children created this embryo, and who inhabits
the
body to whom it may one day be returned, is an omission or at best an
afterthought in such frameworks.
This paper engages in an
historical analysis of this conundrum in the Australian context. It argues that
the institutional structure
of foundational ethics bodies (made up of a mandated
mix of scientific and religious representation, in practice dominated by men,
and absent any requirement of the participation of women patients) has produced
the embryo as an object of ideological compromise:
not mere cells and
not life, but a poorly bounded and endlessly contested
something-in-between. The paper then turns to engage with the narratives of a
selection
of women patients about their sense of connectedness to their stored
or discarded embryos, drawn from a larger study on decision
making concerning
patient’s experience of decision-making about IVF embryos. I draw on these
narratives to ask how we could
reorient law and policy toward the concerns,
needs and desires of such women.
Keywords: human embryos;
IVF; reproductive technology; ethical guidance; embodied relationality; feminist
challenges to the disembodied embryo
Introduction
I’ve only just started thinking about all of this, because ...
I’ve been in this tunnel of young children - it’s
a dark, dark
tunnel ...and I’m just coming out of that and I’m just starting to
go: Oh, right, I need to think about
...what am I going to do about embryos?...
because they do hover ‒ a cloud that hovers over me ‒ just
it’s there
and I need to make a decision.... I have five minute
conversations with my husband...there’s always some other drama happening,
someone needs a wee wee or someone’s fallen off a chair or whatever...
I’m going, ‘The embryos are our children’;
he’s going,
‘No, they’re just embryos ‒ hang on, the phone’s
ringing’. And so we never ever had
that conversation about what
we’re going to do about them. He’s laughing at me; I’m going,
‘This is breaking
my heart, these embryos’. (Ruby)
Institutionalized ‘regard’ for human embryos has taken
different forms in law around the world, leading to a range of
adverse impacts
upon the women who generated them. Laws and policies motivated by a belief in
the innate sanctity or value of human
embryos have tried to prevent embryo
destruction through a range of measures, such as limiting the numbers generated,
mandating immediate
implantation, prohibiting storage or donation for
reproductive use or research, or prohibiting destruction more
broadly.[1] These laws, in turn,
intrude upon (or completely override) women’s decision-making, and/or
drive them into unsafe or less safe
reproductive practices, such as increased
numbers of stimulated IVF cycles, higher numbers of embryos being implanted
(leading to
higher multiple birth rates), coercive donation practices, or
evasive travel to other regimes for treatment.
Australia, like the UK,
could be characterized as broadly liberal and secular in its approach to the
regulation of IVF. Both countries
provide fairly liberal access to a wide range
of state-subsidized treatment practices, and neither country has attempted to
attribute
personhood[2] or specific
legal protections to the human embryo. Yet both have also crafted rules and
ethical guidance that refer to the ‘special
status’ of the human
embryo[3]
and prescribe ‘respect’ and ‘regard’ for it—at
times in preference to the desires of the woman who
generated them. Storage
limits provide a paradoxical example of this. Mandated statutory limits in the
UK[4] and some Australian states were
based originally upon fears about the viability of embryos after long-term
freezing and about extending
the ‘conventional reproductive
competence’ of the
mother-to-be,[5]
but have since focused more on concern to limit the responsibility of storage
providers.[6] The wishes of the
woman—whether to utilize the embryo herself in a pregnancy attempt, to
donate it for the reproductive use
of another woman, to store it either for a
further period until she is reconciled to its destruction or for an indefinite
period
if she is not, or to remove and discard the embryo in circumstances of
her own making—are not prioritised within such a
framework.[7] The perverse effect of
law in this situation is that the embryo’s welfare may require its
destruction—a destruction that
is both mandated and respectful.
(Although Baroness Warnock herself said, at a later point, ‘You cannot
respectfully pour something down the sink ... I think
that what we meant by the
rather foolish expression ‘respect’ was that the early embryo should
never be used frivolously
....’[8])
When
a major review of Australian laws on embryo research was held in 2005, the terms
of reference set down in legislation required
the committee to take into account
‘community standards’. An entire chapter of the report was devoted
to the question
of what exactly such standards
were.[9]
Ultimately the committee sidestepped any definitive answer by acknowledging that
there is no ‘single set of values and interests
(or
‘standards’) held by a single
‘community’’.[10]
However, the report went on to utilize a device common in many such policy
documents before and since—identifying a pluralistic
moral framework but
simultaneously asserting universal regard:
Although a range of views was expressed about the precise moral status of
preimplantation embryos in particular, there was an overall
acceptance that
human embryos created by the fertilisation of a human egg by a human sperm are
entities of some social and ethical
significance because of their association
with the start of human
life.[11]
I
take issue with this premise for two reasons; one is the idea that embryos are
of abstract significance to society at large rather
than of specific
significance to the woman undertaking treatment; and the other is that this
significance is due to the potential
for life rather than its representation of
the myriad potentialities and desires (both imagined and real) to the woman
herself. It
is she who makes these meanings and to whom regard should be
accorded. As Isabel Karpin has argued:
The embryo is only connected with its potential for personhood by female
embodiment. Those who wish to make the argument that all
embryos have equivalent
value do so only by rendering the female body irrelevant In order to do this, a
complex process of disappearing
has to take
place.[12]
To
illustrate this issue, legislation in the Australian states of Victoria and
Western Australia continue to maintain strict 10-year
limits on embryo storage,
although both now allow requests to the regulator for extensions if there are
‘reasonable’
or ‘special’ grounds. The Western
Australian regulator, in a policy document aimed at patients, notes that while
‘some
participants understandably consider that they are entitled to
determine how their embryos are dealt with’ (a position ‘respected
and understood’ by the Council), it is ‘not considered appropriate
by the legislature or by Council’ to store embryos
indefinitely. In
outlining the considerations which govern the policy on extensions, the Council
includes ‘equity, welfare
and general standards prevailing in the
community’. In a section entitled ‘when approval will not be
considered’,
identifies reasons such as a ‘wish to keep an embryo in
storage indefinitely, or [a] wish to be buried with the
embryo’.[13] In the context
of a general policy document, this latter wish is very particular and must
almost certainly have arisen as the result
of a specific, and previously denied,
request. If one accepts that an embryo is an entity of significance to the woman
from whom
and for whom it was created, why should her wish to be buried with it
not be given serious moral consideration and deferred to unless
there is some
compelling imperative to do otherwise? How are the views of the community, or
regard for the embryo, determinative
of such a wish?
The purpose of this
article is to explore the underlying contest in values over the subject/object
of regard in ethical rules and
laws governing IVF practices and stem cell
research—the woman or the embryo—in order to make space for a more
profound
rethinking in the future. First, by examining in some detail one
Australian policy document from the 1980s, I explore in a concrete
way how the
centrality of the embryo in the ethical and regulatory terrain was established
very early on, and how women disappeared
in this process. Part II then examines
how a consistent centring of the embryo continued at the highest levels, by
tracing through
various iterations of national ethical guidelines on assisted
reproductive treatment. I go on to suggest that the institutional structure
of
this key ethics body in Australia, absent a guarantee of female participation or
perspective, continues to predetermine and reproduce
this framework through its
mandatory mix of clinical and religious membership.
In Part III of the
paper, I turn to ask what could a woman-centred regard look like? To do so I
relay detailed narratives from five
women discussing the disposition of their
stored embryos. These participants were drawn from a larger empirical study of
the impact
of law and policy on in-vitro fertilisation (IVF) users in Australia
with a particular focus on decision-making concerning stored
embryos.[14] The study comprised 48
interviews with a total of 54 interviewees augmented by a
survey.[15] In semi-structured
interviews, participants were asked for their views about use of embryos,
including in scenarios of relationship
separation or death of a partner, as well
as their views about donation and wishes regarding disposal. For those who had
actually
been through donation or disposal follow up questions were asked about
these experiences. Thus interviewee’s sense of relationality
with the
embryo arose through a more targeted and instrumentalist discussion about use
and disposal. Many of these interviewees expressed
intense distress and dismay
when faced with the operation of legal rules or clinical policies that they
experienced as intruding
upon their decision making. As one interviewee,
Clarice, noted even the process of categorisation of embryos is arguably not
‘sophisticated
enough to capture what those embryos are to the people who
created them’:
Spare to whom? ... They are spare in the sense, for some of them, that they
haven't been used yet and, obviously for some of them,
they'll never be used.
Well, for a start, those are two very different categories. In what sense is
your future child, for those
who might still be going to use them in the future,
spare? Why is that child any more spare or floating or for some broad Government
consensus to decide what happens to it [than] a future child you might have
through the normal channels, as it were? ... I do think
the law should
acknowledge that surplus has a connotation of additional and, therefore ... less
valuable than what you already have.
I don't think that that is really the case
with embryos. (Clarice)
My focus in this paper is exclusively upon the
perspective of the woman undertaking treatment. Although the woman’s
partner
may also have a considerable emotional investment in the process, and I
do not discount this attachment, this work rests on the premise,
demonstrated
through much previous empirical work, that women experience a greater sense of
connectedness to, and investment in,
stored IVF embryos; in part due to their
far greater physical involvement in the process of creating
them.[16]
Embryos were created from, and of, the woman, and intended for return to her: at
the time of generation these were steps in the process
of a pregnancy-to-be, but
return was interrupted, prolonged or foreclosed by later events (such as the
birth of children, or separation
of a relationship). This sense of disembodiment
was experienced as deeply jarring by interviewees:
knowing that they're just sitting there, sitting there, sitting there and I
can't use them, it creates a whole way of thinking around
them that is
different, I think, than it would otherwise be. (Danielle)
Women referred
to their stored embryos as ‘hovering’ (Ruby, Rose),
‘floating’ (Clarice) ‘suspended’
(Laurie) and
‘remote’ (Sam). Through exploring some of these narratives, I try to
tease out an approach which attends
to the individual, even idiosyncratic nature
of each woman’s relational matrix, in which her extra-utero embryo (or
embryos)
plays some role of significance to her and within her sense of kinship.
I draw upon, and build on the work of feminist theorists
such as Nedelsky,
Baylis, and Downie among others, on relational
autonomy[17] to argue for a
framework of decision making that has regard to the woman as a connected entity
exercising reproductive choice among
a range of outcomes and processes, rather
than simply having the option of consenting to, or refusing, those that are
presented to
her.[18]
The status of the human embryo in
Australian law and ethical guidance literature appears through a patchwork of
injunctions, absences,
and prohibitions on the state and federal levels. These
regulations address who may generate and deal with out-of-body embryos through
criminal prohibitions and licencing provisions, dictate how decisions must be
made about embryos in IVF processes (including pregnancy
attempts, testing,
storage, donation, and destruction), and by whom and to what uses such embryos
may be put when unwanted or deemed
unsuitable for reproductive
use.[19] These documents are
numerous and, moreover, have undergone many incarnations since IVF became an
accepted and increasingly widespread
medical procedure in the 1980s. The
significance and unique value of the human embryo is a unifying premise across
the board. Thus,
for example, Australian national ethics guidelines at different
times have instructed that limits to research are required to ‘reflect
the
human nature of the embryo’
(1996),[20] that embryos are
‘not to be treated as mere tissue’
(2004),[21]
that they ‘warrant serious moral consideration’ (2007,
2015)[22] or are ‘widely
regarded as objects of serious moral consideration’ (2004), and that they
command ‘respect’
(2004).[23] Yet the basis of this
significance is often unstated—assumed or simply asserted as a universal
truth—with little articulation
of why these entities matter and to
whom.[24] How did it come to
pass that ‘we’ all agreed on the special status of the human embryo,
even though no one is recorded
as having agreed on what that status was,
exactly?
The 1980s saw a plethora of inquiries and policy documents
generated as governments struggled to keep pace with the rapid development
of
reproductive technologies.[25] In
the Australian federation, parliamentary inquiries, independent law reform
agencies, specialist appointed inquiry bodies and pre-existing
ethical bodies
vied with each other, and often repeated each other, in a flurry of
investigation which – at least in the short
term – produced a
comparably small amount of legislation regulating the sphere, but which set an
overarching template for the
scope and terms of much ethical guidance, policy
and practice in the decades which followed. I have selected for discussion here
a federal parliamentary inquiry that commenced in 1985 and reported in
1986.
The Question Accepted by All: What is the Respect Due to the
Human Embryo?
In 1985, Senator Brian Harradine, a devout Catholic
and lifelong anti-abortion advocate, introduced a Bill into the Australian
Senate
to ban ‘non-therapeutic’ experimentation on human embryos.
The Bill was referred to a parliamentary committee with broad
terms of reference
which included: whether it is necessary, or desirable, to freeze, conduct
research on, or destroy embryos, and
what prohibitions, sanctions, and
regulatory bodies should be established as a consequence of its
findings.[26]
The Committee, led by Senator Tate, ultimately recommended against allowing any
form of experimentation on human embryos.
The Tate Report has often been
overlooked in favour of other more robustly reasoned or directly influential
reports (in particular,
the Waller inquiry, which laid out the template for
Victorian law, which was both the first and most comprehensive IVF regulation
in
Australia).[27] While the Tate
Report discussed here did not feed immediately into law, it does appear to have
had significant influence on the terms
of the nationally applicable Ethical
Guidelines on Assisted Reproductive Technology (ART) issued by the National
Health and Medical Research Council (NHMRC) in 1996, 2004, and 2007. It also
presaged aspects of the
2002 prohibition on human cloning laws. The report is of
note for the starkness of the contest of ideas visible in its pages, where
the
majority characterize the embryo as a human subject demanding guardianship,
while a vigorous dissent by two female senators argued
for the centrality of
women’s reproductive freedom and decision-making capacity. Looking back 30
years to their arguments gives
a dramatic sense of how different the legislative
and ethical frameworks governing IVF in Australia would have been had the
minority
carried the day.
The majority Report characterized the embryo
as an ethical subject or child-like entity, declaring that ‘the embryo of
the human
species should be regarded as if it were a human subject for the
purposes of biomedical
ethics’.[28] The majority
Report pursued this characterization most strikingly through two rhetorical
manoeuvres: asserting that the Helsinki
Declaration on human
experimentation[29] was applicable
to any research on human embryos, and adopting a ‘guardianship’
model towards decision-making concerning
human embryos. These steps went beyond
most other Australian public inquiries in overtly characterizing the embryo as a
child-becoming.
Yet the majority report also introduced a discursive practice
replicated in many later reports and ethical guidelines, namely, the
assertion
of a pluralistic framework of diverse or divergent views on the embryo
simultaneously with the assertion of universal regard for the human
embryo as a distinct and valued entity to whom something is
owed.[30]
In a
diverting side-step, the majority claimed a ‘well accepted’ ethical
framework when introducing the very features
that were most
contentious[31] in its reasoning,
saying at the outset:
The Committee recognises that in putting forward its view in a pluralist
society it cannot claim to reflect a unanimous view of the
community.
Nevertheless it considers that ... its resolution of the issues is based on
other well accepted features of our social
and legal arrangements, particularly
guardianship and biomedical ethics ... It is in this framework that the
Committee answers the
question accepted by all as the correct query: what is
the respect due to the human
embryo?[32]
Over 30 years
have passed and, in my view, we are all still caught in a framework that
perpetually asks and answers this wrong question—as
if it were the obvious
and, indeed, only question.[33] I
suggest that we still do not ask, as we ought to, ‘What is the respect
due to the woman undertaking treatment?’
The majority Tate
report laid down a blueprint of the subject embryo, a uniquely human
entity oriented towards future development that must be respected and protected.
If, as is the view of the Committee, the embryo may be properly described as
genetically new human life organised as a distinct entity
oriented towards
further development, then the stance and behaviour proper to adopt towards it
would include not frustrating a process
which commands respect because its
thrust is towards the further development of a biologically individuated member
of the human species.[34]
It
is worth highlighting the disappearance of women in this framework through the
simple reversal of replacing the embryo with a woman
in the text, which might
then look something like this:
As the woman undertaking treatment is existing human
life oriented towards further reproduction; the stance and behaviour proper to
adopt towards her ... includes not frustrating her process, which
commands respect because it is hers.
Interestingly, Senators
Crowley and Zakharov in the minority appear to have found it rhetorically easier
to replace the embryo with
a rock than with a woman when they argued in their
dissenting report:
Any object or thing has an infinite number of possible future courses. For a
non-sentient or inanimate thing, e,g. a rock, the particular
future outcome that
actually happens is determined by forces outside of itself. An embryo is like a
rock in this respect—it
cannot make decisions for itself. Its future is
decided by others. It has potential only in virtue of decisions by others about
it.[35]
The minority report
concurred with the majority that, unlike a rock, the embryo’s
developmental potential is something of ‘great
significance’, but
argued that ‘without a uterus, there is no development’ and, thus,
the focus should be on the
decision-making capacity of the
woman.[36] With rather unnerving
prescience, they noted that unless it is the woman who makes decisions,
‘society will determine the developmental
potential of the
embryo’.[37]
Crowley
and Zakharov critiqued the inherent contradictions in the
‘guardianship’ and subject/patient models of embryonic
status
promoted by the report, noting, for example, that the freezing of embryos for
possible later use cannot be characterized as a therapeutic intervention
on behalf of the embryo (not least of all because of the very low success rates
with
thawing at the time). Rather, embryonic freezing is a medical decision made
by and for the health benefit of the intended
mother.[38] Likewise, the minority
senators noted that the majority report did not support implantation against the
wishes of the woman, and
therefore countenanced the wilful destruction of
embryos as an inevitable consequence of women’s participation in IVF
treatment
programs.[39]
The
minority argued it was a ‘consequential logical step’ that the woman
making decisions about implantation should ‘have
the same unfettered
responsibility for decisions prior to
implantation’.[40] They
concluded that the woman ‘into whose uterus the embryo is placed’ or
the couple,
should determine all such other decisions as to, for example, how many embryos are produced, how many are placed in the uterus at any one time, whether and how many of their embryos are frozen, and if and when such surplus embryos are allowed to succumb. In all these decisions the couple will have regard to the advice, information and counsel given them by their doctor ....
....
Women have had to fight for their rights to their children in times past. We
see the same arguments as to their rights apply here.
The woman and/or the
couple are the appropriate and proper decision
makers.[41]
It bears
reflecting that many of these decisions continue to be severely constrained, or
even removed, by law and policy, rather than
being in the hands of the woman
undergoing treatment.
ART ethical guidelines, alert from the outset to
the movement of embryos from the realm of reproductive treatment to research,
have
addressed both practices.[42]
These guidelines perform a significant role in national regulation of ART in
Australia, although their influence has changed over
time.[43] Since 2002, national law
has provided that embryos can only be used or developed in the course of a
woman’s reproductive treatment
by ART units that have been accredited by
the Fertility Society of Australia’s Reproductive Technology Accreditation
Committee
(RTAC), which in turn requires evidence of
compliance with the NHMRC Ethical
Guidelines.[44] In addition, three
of the four Australian states that currently legislate on the provision of ART
in their jurisdictions also explicitly
require compliance with the NHMRC Ethical
Guidelines.[45] Thus the current
NHMRC guidelines, although expressed in the flexible and normative mode of
‘guidelines’ rather than
law, are actually enshrined by law as the
most significant governance instrument in ART practice across
Australia.
The first guidance from the NHMRC came in the 1982 In Vitro
Fertilisation and Embryo Transfer: Supplementary Note 4 to the NHMRC
Statement on Human Experimentation, which predated the findings of the
Warnock Report by several months. At a page and a half, the document is
astonishingly brief to
the modern eye. It covers nine points in total,
addressing the requirement of an institutional ethics committee and record
keeping,
the treatment of infertility within ‘an accepted family
relationship’, requirements of consent for patients and donors,
the claim
that surrogacy is ‘not yet capable of ethical resolution’ because of
the uncertainty of maternal status, the
unacceptability of cloning, and the
ability for conscientious objection by clinic staff. While point seven states
that the ‘wishes
of donors’ (gamete providers) should be taken into
account in setting a storage limit for embryos, the document undoes this
rather
by going on to recommend ‘a set upper limit which would be of the order of
ten years’—a limit that is then
carried through several iterations
of the guidelines over the following three decades. Stuhmcke and Chandler note
that at the time
this limit was first proposed the freezing of embryos was still
a highly experimental procedure; yet the limit has persisted and
‘regulators have continued to cast the need for storage limits as being
self-evident.’[46]
The
1996 Guidelines are considerably more detailed and reflect the influence of the
1986 Tate report. For example, the Introduction
to the 1996 Guidelines includes
the ‘ethical and social values’ engaged by ART, recognizing that:
[A]ny experimentation and research involved in these technologies should be
limited in ways which reflect the human nature of the embryo,
acknowledging that there is a diversity of views on what constitutes the moral
status of a human embryo, particularly in the early
stages of
development.[47]
In a brief, one-page section on research, the 1996 Guidelines direct
that ‘non-therapeutic research’ which ‘does
not harm the
embryo’ may be approved by an ethics committee, but procedures that
involve destruction should only be approved
in exceptional
circumstances.[48] In a discursive
frame that arguably anthropomorphizes the embryo, the guidelines provide that
‘embryo experimentation should
normally be limited to therapeutic
procedures which leave the embryo, or embryos, with an expectation of
implantation and
development’.[49] The
embryo is framed not as an object of concern with a future potentiality that
should be protected, but rather as a subject with its own
expectations of futurity in a manner very reminiscent of the 1986 Tate
Report. This statement appears to belie the pluralism of the opening
introduction
in the 1996 ethical guidance on the diversity of views on the
‘moral status’ of the embryo as it is implicitly accorded
a version
of personhood or sentience. The other effect, relatedly, is to erase the woman
(and her partner) who created, and presumably
consented to any research activity
on their embryo. It is her body in which the hope of implantation rests and
surely it is she who
holds an expectation that the embryo will be implanted,
rather than the other way around. Yet her wishes and concerns vanish.
The 2003 Draft Guidelines for Public Consultation (which preceded the
2004 Guidelines) state that the working group was guided by
‘a respect for
human life at all stages of
development’.[50] This
provision was notably dropped from the final
version.[51] A number of other
changes between the drafts and final versions of the guidelines alert us to the
contested values concerning embryos,
and those who generate them, within the
committee. For instance, the 2003 Draft Guidelines provided, ‘People who
wish to make
use of reproductive procedures should be encouraged to do so in
ways that are respectful of human life and the dignity of all human
beings’.[52] In the 2004 final
version, however, ‘human life’ has been removed and replaced with
‘all involved’, and the
injunction no longer applies to the patients
who use ART but rather to the clinicians who provide
it.[53] The 2004 Guidelines also
added for the first time a stand alone provision headed, ‘Respect human
embryos’, which states
that ‘While there are different views held in
our community about the moral status of a human embryo, one view that is very
widely shared is that embryos are not to be treated as mere
tissue’.[54] So while we
can’t agree upon what embryos are, we are all taken to agree on what they
are not. The placing of this statement is also revealing as it is
immediately followed by a sub-provision requiring clinicians to limit the
number
of embryos created. Thus, the overarching object of the provision is to ward off
the prospect of the future destruction of
unused embryos.
More
strikingly, the language of life, and death, has fluctuated across iterations.
For example the language of death and dying that
appeared in relation to embryo
destruction in the 2003 draft was replaced in the 2004 final version by the
terminology of
‘disposal’.[55]
Conversely, the 2007 amendments, repeated in the 2015 draft, introduced the
language of ‘life’ with the inclusion of
a non
statutory[56] and, arguably, surplus
definition of the ‘embryo’ as ‘a living entity in the earliest
stages of development’
(at the same time that such language was dropped
from federal legislation).
While many incarnations of the guidelines
include some reference to ‘regard’ for the ‘long term
welfare’ of
the women and men who utilize ART with various provisions
concerning requirements for informed consent, patients are arguably rendered
passive objects insofar as they are governed by rules that delimit what they may
and may not consent to, rather than active subjects
who should be consulted, or
deferred to, in generating or determining options or actions. There is one
striking exception in the
1996 Guidelines concerning disposal: ‘Embryos
may be allowed to succumb by withdrawal of support. Each clinic is to have
protocols
in place for this purpose. If indicated in their consent, the
preferences of a couple who generated an embryo are to be respected in this
matter’.[57] This carries
through to the 2004/2007 Guidelines which continue to include provision for
‘respect’ for ‘the wishes
of the persons for whom the embryos
are stored’, specifically in relation to the decision to discard, and the
method of disposal.[58] It is
interesting that in the 2015 Draft Guidelines the comparable provisions on
storage and disposal drop the language of respect
for the embryo (or the wishes
of its progenitors) and instead speak of ‘managing’ storage and
disposal of embryos, offering
‘options’ and ‘reasonable
time’ for the ‘individual or couple’ to consent or take
action.[59] The language of regard,
respect, and wishes fall away in the 2015 draft. The overall message from these
changes is ambiguous: the
presence of patients is more prominent, with
references throughout to ‘individuals and couples’ undertaking
treatment,
yet these references are continually ungendered. Apart from an
introductory provision requiring respect for ‘women and intended
parents’, the woman seeking pregnancy is never explicitly
mentioned.
In fact women, as such, hardly appear at all in any iteration
of the guidelines. There is only one instance in the research provisions
of the
2004 version (amended 2007) of the guidelines in which the woman patient’s
wellbeing is linked to concern for the embryo within a frame of
maternality. Under the heading, ‘Respect the embryo and all persons
involved’,
the provision reads: ‘Respect for the dignity and
wellbeing of the mother and the embryo must take precedence over any expected
benefits of knowledge. There must be no foreseeable harm to the embryo that
would make it unfit for transfer to the
woman’.[60]
While the
heading centres the embryo, the text of the provision appears to reverse this by
beginning with ‘the mother’.
This language is particularly striking
because she is not ‒ yet ‒a mother. She is someone who intends to
be a mother.
Elsewhere, she is ‘the woman’ or a ‘person for
whom the embryo was created’, a ‘person responsible
for the
embryo’ or a ‘gamete provider’. Here the woman and her
embryo’s interests and wellbeing are aligned
for the only time as her
maternality is envisaged—even though the embryo is still at this point
disembodied. Transfer is imagined
as the (shared) goal, and they are ‘the
mother and the embryo’. In another sense, one could argue that the
provision
implies that she is the mother that the embryo has an expectation
of being implanted within. Respect and dignity are language choices that
occur elsewhere in the guidelines in relation to the entity of the embryo
suggesting
that it is human-ish; they are discordant choices for a woman’s
intentions and desires for achieving pregnancy, again suggesting
a re-orienting
of value toward the embryo even when the woman herself makes a rare
appearance.
Isabel Karpin has argued that,
Failure, excess, loss, repetition, and waiting as well as successes are all part of the IVF experience. They are part of the woman’s embodied experience of the process and often lead to the development of a powerful feeling of connectedness with the frozen embryo that didn’t exist at the beginning of the process.
....
[A] legal response that treats all embryos as the same, requiring an abstract
form of disengaged respect at the same time as a pragmatic
recognition of their
disposability, fails to account for the complex and embedded integration of
these embryos in the selfhood of
the women who care about
them.[61]
I suggest that the institutional structure behind the Australian ethical
guidelines is, at least in part, responsible for creating
this space for the
embryo as a contested but constantly centred ethical subject, not-quite-life but
not-mere-cells.
Knowledge and Expertise
The National
Health and Medical Research Act of 1992 set up a legislative structure for the
organisation and in the process abolished
the first set of 1982 ART guidelines.
Each set of guidelines has been since been produced by a two-stage consultation
process mandated
by the legislation, in which a public consultation is followed
by a draft document that then forms the basis of further consultation
before
final guidelines are produced.[62]
While this is an admirably transparent process in guaranteeing input from
professionals, researchers, and the public, the transition
to this model
involved, regrettably, abandoning an earlier commitment to the input of
‘women and men’, including ‘at
least one laywoman and one
layman’.[63]
Since
1992 the statutory composition of the Australian Health Ethics Committee, the
body responsible for issuing the guidelines, mandated
by s 36 requires a Chair
and those with knowledge/expertise in:
and experience in:
and understanding of:
There appears to be an
implicit hierarchy of knowledge, expertise, experience, and understanding as
epistemological forms relevant
to the Committee’s work. There is no
requirement of gender equity, nor of lay or consumer membership as such. Thus
far, the
person with expertise in religion has always been a minister of
religion and/or a theologian—always a Christian, always a man,
and usually
a Catholic. At no stage has there ever been equal representation of women on the
working groups responsible for the ART
ethical guidelines. If anything gender
parity has declined with the passage of
time.[64] Perhaps of greater
significance is that only one member is selected to represent ‘knowledge
of issues that concern people who
access reproductive technology’. This
notably does not specify a woman who has herself undertaken IVF, and generally
appears
to be someone with current or past experience as an infertility or
genetics counsellor or nurse.
I suggest that this institutional model,
excluding women patients, and requiring religious input, locks us into an
ethical framework
that, through every incarnation of tinkering, continues to
centre the abstract entity of the disembodied human embryo at the expense
of the
embodied woman patient. Although I am more concerned with the understandings and
views of women patients than the community
at large, it is noteworthy that one
of the few Australian studies of community attitudes to the human embryo found
that:
[I]mportant gender differences were identified...Women were more likely to indicate that the right way to use an embryo was to transfer it to another woman or use it in research help another infertile woman. ...Women were also more likely to reject the involvement of external decision makers such as ethics committees or Government bodies, or even the man whose spermatazoon was used to make the embryo in decisions about embryo disposition.
...
As far as is known, the difference in views between women and men pertaining
to embryo status, acceptable uses and responsibility
for disposition decisions
is one that has not been previously identified or investigated in community
consultation. The present findings
suggest that it is important to address
gender difference in consultation processes and to have balanced gender
representation in
policy-making
processes.[65]
This leads me
to the embodied woman patient, and the question of what she might regard as
important or relevant in decision-making
about stored IVF embryos
Feminist relational
autonomy accounts of personhood, ‘repudiate the notion of a disembodied
rational calculator’ and instead
attend to the agency of ‘embodied,
socially engaged beings’[66]
In 2006 Karpin suggested that a feminist regulatory response to ART ‘begin
by challenging the primacy of the disembodied embryo’,
including
challenging ‘both its physical detachment from the female body and its
social detachment from the parental relation’
by foregrounding the figure
of the ‘not yet pregnant pregnant
woman’.[67] In recent joint
work, we have proposed, building upon the work of feminist theorists such as
Nedelsky, Baylis, and Downie among others,
a relational sense of the embryo that
centres the woman and values the ‘intensely personal and infinitely
variable’ meaning
of the embryo to
her.[68] This frame allows us to
regard a woman’s decision making concerning her stored embryos as part of
a broader political and social
context but also accepts that this experience
incorporates an individualised, fluid and variable sense of kinship and
belonging,
in which the embryo may (but not must) be regarded as part. As
with feminist work on pregnancy loss, it is a difficult but important task to
craft a space
in public discourse that can acknowledge women’s experience
of relationality in reproduction without having foetal/embryonic
personhood
claims imposed upon it.[69] This is
particularly difficult in political contexts where anti-abortion discourse is
prevalent (such as in the US where it has extended
to claims of personhood for
embryos, including for example the imposition of ‘adoption’ models
onto practices such as
embryo
donation).[70]
In this
section of the paper, I explore this ‘matrix of relations’ through
the narratives of a series of women patients
from our study, each of whom was
speaking about the prospect of destruction of her stored embryos; although for
some that that prospect
was more imminent than for others (and one had actually
kept physical possession of the vials in which her embryos had previously
perished). There is a rich body of published research addressing patient
decision making about stored embryos, which I do not attempt
to address
here.[71] Rather I focus on a small
number of women in detail, in order to illustrate the unique relational nature
of each woman’s understanding
of her embryos and how they fit for her with
her own sense of herself as a mother and patient, and with her partner,
children, and
other kin. I stress that very few participants in our study, and
none of the women quoted here, understood their own embryos to be
‘life’ or attributed personhood or almost-babyhood to them. Likewise
very few participants were opposed to destruction
of embryos per se. They
also notably did not speak of embryos as something special, requiring regard in
an abstract sense, or about the value that
should be accorded to other
people’s embryos; rather they spoke about the value and meaning of their
own embryos in a very
specific, conditional, and, I suggest, embodied
relation.
Regard as a relation, and as the Product of Labour: Rose
At the time of interview, Rose was the single mother of a six-month-old
child. Rose had eight embryos in storage which she had not
yet decided whether
she would utilize in further pregnancy attempts. Considering the possibility of
future destruction, Rose said:
[B]ecause of the very personal process I had to go through to get them and the fact that one of them is my daughter asleep in the bedroom [I feel] that they deserve better than just sort of being defrosted on a bench and flushed down the sink or whatever is going to happen to them. I would like the chance to be able to do something with them.
Like many other participants, Rose expressed the view that her stored embryos
were closely connected to her through their connection with her existing
child or children. This sense of sibling connection was expressed by
participants in our study,
as by those in many other
studies,[72] particularly in
relation to reluctance to donate embryos for the reproductive use of another
woman.[73] Yet it also went far
beyond this.
For many of our participants, this sense of connection with
embryos was particularly acute when, as with Rose, their child had come
from the
same treatment cycle: that is, when one embryo had been transferred and became
an existing child while others from the same
‘batch’ were stored for
later use. In such instances, a number of women expressed a sense of their
embryos as spectral
twins of their existing child—‘Is there going to
be another little girl with red hair like my daughter has, or a little
boy, is
he going to look exactly the same as him, because they’ve come from the
same batch?’ (Phoebe)—or as interchangeable
with them—‘I
look at my Claudia and I go, “My god they’re all potential
Claudia’s’” (Ruby)
— ‘It was just the
embryologist’s choice which meant we have the babies ... we do now and not
one or both of those
in storage’ (Survey
241).[74]
Many women said
they did not want their embryos to be wasted, or treated as waste (Juliet,
Joanne, Sarah, Sam) and expressed distress
at the prospect of them being
‘flushed’ or ‘shoved’ down the sink or toilet (Nicki,
Ruby, Sam, Kate), or
‘chucked’ in a bin (Veronica, Danielle). Here
Rose articulates her embryos as ‘deserving’ of ‘something
better’ than an imagined, and abject ending – a waste product left
on a bench and ‘flushed down the sink’.
In this sense she is
reflecting the idea in national ethics guidance that embryos are not mere cells
and even could be seen as putting
a subject position requiring regard: in that
it is they that deserve a particular end or process. Yet wrapped around
this is a series of other relationships and demands for regard. The
embryos
deserve this because of what Rose herself had to go through to get them.
It is her embodied effort, pain and sacrifice in IVF processes that call for
regard to be given to them, as well as
their interchangeability with her
sleeping child. Thus Rose articulates her embryos simultaneously as both
‘work object’
and ‘love
object’.[75] However, she does
so not to assert their inherent value, but rather her own desire to have some
control over the outcome and ‘do
something with them’ when they are
discarded. Her choice would be to bury them in her garden.
Connection to the Body: Apple
At the time of interview,
Apple had a one-year-old child and was mid-cycle in a further pregnancy attempt,
which she described as
having ‘two [embryos] with me at the moment,
and one on ice’. Like Rose, Apple did not actually know what occurred when
embryos are discarded and so imagined
it as a process of abandonment or clinical
disregard:
[L]eaving them to die in a Petri dish seems wrong. Just sort of letting them defrost and never make it kind of seems wrong. So in an ideal world, and I don’t know if it’s a possibility but what I’d like to do is have them put back in at a time where I know they’re not going to make it so at least they’re in the right environment when they don’t make it.
Apple expresses a wish for what has been termed ‘compassionate
transfer’ in the
literature,[76] a process not
publically offered in Australia, and only available when requested by the
patient at certain clinics, in which the
embryos are transferred at a time in
the woman’s cycle or in such a way (for example to the vagina rather than
the uterus)
that they are very unlikely to result in pregnancy.
Although
Apple begins by saying ‘die’ and ‘defrost’ when
referring to the imagined end in the Petri dish,
she then re-characterizes this
end as ‘not making it’ and wants this process to be completed within
her body which is
‘the right environment’. Many women we
interviewed expressed a sense of discomfort or wrongness at the on-going and
unanticipated out-of-body-ness
of their stored embryos. This was reflected in
their language around disposal, which invoked images of being tossed in rubbish
bins
or flushed down sinks or toilets. Apple’s re-naturalization of the
disposal process is expressed as something mitigating an
implicit sense of loss
(a sense of ‘at least they’re in the right place’) that
follows a logical order of the cycle in which, regardless of pregnancy, the
embryos
are returned to the body whence they came. Accordingly, her claim of
relation is about the embryos’ relation to her body as
well as about her
relation to the IVF process, which is perhaps more acute because she is in the
process as she speaks.
An End that is not yet final:
Phoebe
Phoebe had two children from IVF and seven stored embryos from
the same treatment cycle that she had continued to store for 10 years.
At the
time of interview she had been compelled to dispose of these embryos when the
storage limit was reached in her jurisdiction
and her clinic withdrew the option
to donate embryos to research (which had been her preference). She had
approached her clinic and
been permitted to take her embryos home. Phoebe said
that she ‘wasn’t silly’ and was well aware that the embryos
were no longer viable within a short time of taking possession of them;
repeatedly noting that they weren’t ‘really there’
anymore.
Nonetheless she had placed the vials in the butter compartment of her fridge,
where they had remained for the past nine
months. Phoebe explained this
process:
[T]hey're still sitting in my fridge because I now don't know where—I know I sound like a fruit loop but I'm not. I don’t know where to put them. We'd decided that we would either plant a tree or something like that; we would incorporate them, pot them in with the tree and that would be our memory sort of thing. But probably the fact that we've got a puppy ... and she's a total nut case, I think she'd dig the tree up. So I think that's probably—no, I don't want that just to happen just yet.
I could always probably plant a tree where she can't get to it but anyway it's just something that we haven't done. Plus we would also have to choose a time and a place that — ... the children weren't around that I didn't then have to go in and explain to them. They know they're IVF babies but I wouldn't want to go any further with that ....
I can always basically look at that particular tree or plant and think, well, I've got that memory of everything that I've gone through over the past 15 years basically, and that's the last memory I suppose. That's the end of the line and this is where they are and I can look at that and then think, well, that's a living object. I know the plant could die or whatever but you know what I mean?
It's just there as like a memory for me, probably more me. My husband, I don't know men sort of tend to think a bit—oh what's the word—they're just very cut and dried, where I think women, especially going through process of IVF it's all the what ifs and you think a bit more about everything that you're going through, you're navigating through.
... It's a clear tube with a yellow lid and it's in the specimen bag tucked away behind the butter ... [because] it's up high and the children can't reach that far yet. I think I would hate for them to one day open that butter or that area and go, ‘Mum, what's this?’ So yeah, I know I'm making light of it but I know I've probably got a limited time. I do need to find that plant and I do need to sort that out because there will come—
So basically there'll be a day when I think, right, I see a plant and I'll
think, well, that's the plant I want, and I'll just do
it, minus the dog and the
kids.
There is a complex and intersecting web of relationships at work
for Phoebe. The embryos are intimately connected to her, much more
so than to
her husband or existing children from the same ‘batch’. Elsewhere,
she says she is ‘probably a bit more
emotionally attached to them than the
next woman’, having just relayed the ‘bit of a rough trot’ she
had with IVF
including her near death experience from an earlier ectopic
pregnancy. In this sense the tree she imagines is a record of her own
arduous
process and she implicitly characterizes it as a memory of her, for her. But the
ceremony is also for the embryos as the
end of a line, an end of her process and
an end of themselves. The children and puppy are imagined as incursions on this
private
space, opening the butter compartment, digging up the tree.
The
choice of the fridge for storage, even in the express knowledge that this was
unrelated to viability, uncomfortably and ambivalently
mirrors the cold storage
of the clinic. Phoebe chose not the freezer, but the butter compartment, in fact
the warmest part of the
fridge, gesturing perhaps towards the warmth and
containment of the bodily environment that the embryos would not be
returned to in order to offset the coldness of mechanised storage? In all of
these things appears the shadow of the other, none
exists in a separate or
distinct state. Even the living tree which marks and transforms a death of sorts
(the end of the line) into
a different kind of life is imagined to be vulnerable
to the too-lively puppy, and immediately acknowledged as something that could
itself die.
In re-reading Phoebe’s interview transcript it is
striking that she characterizes the embryos as both there and not there in
a
process that is over but not yet complete:
I’m not silly, like I know this is the next step, we’ll get it
done. I realise I’m going to be sad with the next
step, then that will be
final. Even though I know it is now, that it’s all done and dusted now
sort of thing, and it’s
now just the next step of having the symbol, I
suppose. I‘ve just got to then do that and then it will
be—
The word ‘over’ remains unspoken, the sentence
unfinished.
Something useful to someone, that I would have felt
really good about: Scarlet
Scarlet had a one- and a two-year-old
child through IVF with two embryos left in storage. Scarlet strongly wished to
donate her embryos
for the reproductive use of others and, having been denied
access to her clinic’s donation program because of a genetic condition,
she had then self-recruited recipients and begun a known-donation process with a
couple who were aware of and understood the condition.
Scarlet described the
condition:
My family have a—not a disease, that's the wrong word—an illness
that's passed from mother to child and so all those embryos
have this illness
and both of my children do. It's a 100 per cent transmission to the child but
then the child inherits it in varying
disease. So they can have like a five per
cent disability, which you wouldn't even notice right up to 100 per
cent.
Scarlet volunteered that she had been taken aback when the clinic
counsellor proposed that she and her partner should both let their
own parents
know about the donation:
By the time the child was say 18 or 20 there's absolutely no guarantee our
parents will even be around, so I just didn't think that
that—I thought
that was probably going a step too far. It's one thing to explain to our
children that they may have siblings
out there that they're biologically related
to. I think it's probably more than my mum for instance could cope
with.
In imagining future kin, Scarlet saw the embryos as connected to
her children, but not to her parents, and she actively resisted the
clinic’s emphasis on genetic link.
However, the clinic’s
ethics committee refused to allow the donation to go ahead on the basis that it
would not be in the potential
child’s best
interests.[77] Scarlet’s
response to this rejection reads back from the embryos as children-to-be, or
rather as children-who-will-never-be,
to her own children’s disability, to
her sense of herself as a mother to those children and of herself as a person
with a disability:
I find it a really difficult argument to accept, because I have produced two children from exactly the same set of embryos and in essence they're saying that that was not in the best interests of my children. Now that's quite a confronting statement because I think my children are immensely loved and showered with everything they need and they're well built up, well cared for and it's hard to say that it was not in their best interests to even exist.
... I have the exact same disability as these embryos and I guess that's also saying that it would be in my best interests not to exist. A lot of people with disabilities and a lot of parents of children with disabilities would find that an extremely confronting point of view.
I've read things of parents with children with serious disabilities like
cystic fibrosis and those kind of illnesses, where the child
is wheelchair
bound—I live a very normal life—and those parents say they would not
be without those children. They love
them so much. I guess a committee has
decided I think in an extremely stretched sense of what is the best interests of
the child.
Physical selves and loved selves are merged as
‘well’ in Scarlet’s effort to articulate best interests within
a
web of kin and social relations. At the end of the interview, Scarlet said
that she felt it was a terrible waste and unfair that
the couple had been denied
the chance to receive her embryos, noting that the clinic had a two year waiting
list for donation and
was currently closed to new
recipients.[78] She added that she
too had been denied the chance to do something she would have ‘felt really
good about’.
Scarlet was very committed to the idea of her embryos
as something of worth: ‘There was never any doubt in both mine and my
husband’s mind that if they could be used for something, they should be.
It’s a really hard process to get to have embryos’.
As a result, she
then tried to donate them for research into the specific genetic condition she
experienced, but was told that this
‘wasn’t worth it’ for two
embryos, so she then pursued donation to broader research.
The part
of me that kind of still makes me a mother: Chloe
Chloe was the only
interviewee in the study who had completed her treatment without actually having
a child or sustained a pregnancy.
Because of her age and the fact that she had
experienced multiple miscarriages, she was not planning any further pregnancy
attempts.
She had stopped treatment when she still had one embryo in storage and
had kept it for almost six years by the time of the interview.
She said:
The only way I can articulate it is this is the only physical thing I have that's the closest to being a child. This is all I have left... it's an embryo. It’s viable...this is for me personally emotionally ‒ it is a potential child that you and your husband have created. You have nothing else left. This is it, the last hope. ...I can't get rid of it. Maybe I need to keep this forever. I just can't do it ....
That's the dilemma that we go through constantly. I keep looking at it, every six months it comes and I go I've got to do something, I've got to do something and I just stuff the paperwork away in the desk and go, no, something inside me still feels okay that I've got this living little thing there. That's mine.
... [I]t's the only living thing that I've created. Everyone else is ‒
but it kind of still makes me a mother.
As with Rose, implicit claims to
personhood are specific and contingent: this embryo is viable for me,
potentially a child, a living thing that is mine.
‘Hope’ and potentiality are very particular and embodied in
the IVF context, in which women repeatedly, often over a number
of years, have
embryos transferred into their bodies and then wait for a week to two weeks to
see if they ‘take’; a process
of not-quite or temporary pregnancy.
The relation of this embryo is to hope and to Chloe’s deeply internal
sense of herself
as a mother; although in any real sense the hoped for future is
lost and she is a mother-never-to-be. In this sense, building on
Karpin, Chloe
is a never-to-be-pregnant pregnant woman.
This quote from Chloe is the only interview quote that, when I have
presented at conferences, workshops and professional fora, has
always caused at
least one person listening to visibly cry. In my view, this reaction from
listeners speaks to an ability of the
community, if properly informed, to have
regard for women first and foremost in policy and practice that has, to date,
been dominated
by regard for the disembodied embryo. It is worth restating that
Chloe’s wishes are not honoured in law, and her embryo will
almost
certainly have been compulsorily destroyed by the time of writing as a result of
the 10-year storage limit in her jurisdiction.
Conclusion
Many laws and ethical documents in Australia, as elsewhere, instruct us
that disembodied embryos created through IVF processes are
not mere tissue; they
are ‘widely regarded’ as unique objects of serious moral
consideration with a ‘special status’
that commands
‘respect’. This paper has engaged in an historical analysis of the
Australian ethical governance to document
how this characterisation came to
pass. These documents characterise the embryo as an object of ideological
compromise: not mere
cells and not life, but a poorly bounded and endlessly
contested something-in-between. I argue that the woman whose desire for a
child
or children created this embryo, and who inhabits the body to whom it may one
day be returned, is an omission or at best an
afterthought in such frameworks.
The paper engages with the narratives of women patients about their
sense of connectedness to their stored or discarded embryos, drawn
from a larger
study on decision making concerning patient’s experience of
decision-making about IVF embryos. I draw on a selection
of these narratives in
some detail to illustrate their complex and contingent experiences of regard,
kinship and connection with
their embryos and to ask how we could reorient law
and policy toward the concerns, needs and desires of such women. Decisions about
storage and destruction are critical conflict points that have triggered
expressions of dismay by IVF participants when their feelings
of connectedness
with their embryos are
disregarded.[79] These are not the
only areas in which ART law and policy prioritize a universalized and
disembodied respect for the embryo over and
above the feelings and wishes of
those who created them, but they are the most acute and, particularly in the
case of destruction,
the most painfully paradoxical.
Changing legal
regulation and ethics governance to include the perspective of women patients on
their IVF embryos is a slow endeavour.
It is notable that the 2015 draft the
NHMRC guidelines, for the first time in their 30 year history, drop the
requirement of an embryo
storage limit of 10 years. Yet they do so in a way that
continues to sideline the woman undertaking treatment. Firstly, the draft
takes
as a starting point the administrative priorities of the clinic in disposing of
unclaimed embryos; and secondly, it prioritizes
the scientific expertise of the
clinic in determining viability. Only then does it go on to note that the
duration of storage may also depend upon the ‘personal
preferences’ of the
couple.[80]
Isabel Karpin
has argued that in developing ideas of relational selfhood, we are not
obliged to treat woman and embryo as equal or to situate the embryo ‘as a
rights bearing entity that requires protection’.
We are obliged to
‘respond to female agency and embodiment formed through this complex (and
sometimes uneasy) negotiation with a matrix
of relations and familial
possibilities’[81]—and,
I would add, with imagined future possibilities and relations, including
foreclosed and no longer possible futures, losses
and potentialities hitherto
unimagined. An ethical framework premised on respect for the woman undertaking
treatment must ask first
what these relations mean to the woman and then seek to
accommodate this meaning. I suggest that an embedded institutional structure,
such as that in place in Australia for the past 25 years through the NHMRC,
which legislatively mandates religious representation,
and which does not
require the embodied perspective of a woman patient, will continue to centre
abstract notions of regard for embryos
at the expense of the needs of women who
undertake IVF treatment.
[♣] Professor of Law, UTS.
This research was funded by Australian Research Council Discovery grants 0986213
and 15010157. Deep thanks
to my collaborators and colleagues, Isabel Karpin and
Anita Stuhmcke, the journal reviewers for their suggestions, and to all of
the
study participants who spoke with us.
[1] This includes past and present
laws in countries such as Italy, Spain, Germany, and Switzerland for example:
see Françoise
Shenfield et al., Cross Border Reproductive Care in Six
European Countries, 25 HUM. REPROD. 1361 (2010); John Robertson,
Protecting Embryos and Burdening Woman: Assisted Reproduction in Italy,
19 HUM. REPROD. 1693 (2004); Paolo Emanuele L. Setti et al., Italian
Constitutional Court Modifications of a Restrictive Assisted Reproduction
Technology Law Significantly Improve Pregnancy Rate, 26 HUM. REPROD. 376
(2011). This is not to suggest that such laws necessarily reflect the views of
medical practitioners, patients,
or the public: see Tanja Krones et al., What
is the Preimplantation Embryo? 63 SOC. SCI. MED. 20 (2006).
[2] For a thoughtful and grounded
critique of ‘life debates’ in the US and the role of political and
cultural context in
generating constructions of the embryo, see Elizabeth
Roberts, Abandonment and Accumulation: Embryonic Futures in the United States
and Ecuador, 25 MED. ANTHROPOL. Q. 232
(2011).
[3] See UK Department of
Health and Social Security, Report of the Committee of Inquiry into Human
Fertilisation and Embryology, Cmnd. 9314 (1984) (hereinafter ‘The
Warnock Report’), para. 11.17; Human Fertilisation and Embryology
Authority (HFEA),
Code of Practice (2015), para. 15.13. For discussion,
see David Gomez, The Special Status of the Human Embryo in the
Regulation of Assisted Conception and Research in the United Kingdom, 17
MLJI 6 (2011).
[4] Human
Fertilisation and Embryology Act 1990 (UK), s.
14.
[5] See discussion in Anita
Stuhmcke and Eloise Chandler, Storage Limits of Gametes and Embryos:
Regulation in Search of Policy Justification, 22 JLM 121, 123-125 (2014);
The Warnock Report, supra note 3,
para. 10.10.
[6] See eg National
Health and Medical Research Council (NHMRC), Draft Ethical guidelines
on the use of assisted reproductive technology in clinical practice and
research; Public Consultation 2015, section 7 https://consultations.nhmrc.gov.au/public_consultations/assisted-reproductive-tech
(accessed 15 September 2016). In the US and Canada where there are no
external storage limits this concern is more pressing: see Alana Cattapan and
Francoise Baylis,
Frozen in Perpetuity: ‘abandoned embryos’ in
Canada, RBMS (2016) advance access doi
10.1016/j.rbms.2016.04.002
[7]
See Jenni Millbank et al., Enhancing Reproductive Opportunity: A Study
of Decision-Making Concerning Stored Embryos: Report (2013) http://allabouttheembryo.net/embryo_wp/?page_id=43
(accessed 15 September 2016).
[8]
HL Deb, 5 December 2002, Col. 1327, quoted in House of Commons Science and
Technology Committee, Human Reproductive Technologies and the Law (2005),
Fifth Report of Session 2004-2005, vol. 1, ch. 4, para. 61. And see Emily
Jackson, Fraudulent Stem Cell Research and Respect for the Embryo, 1
BIOSOCIETIES 349 (2006).
[9]
Legislation Review Committee, Legislation Review: Prohibition of Human
Cloning Act 2002 and Research Involving Human Embryos Act 2002: Reports
(2005) (hereinafter ‘Lockhart Review’), ch. 7. In contrast, the next
review in 2011 spent a mere page on the issue: Legislation
Review Committee,
Legislation Review: Prohibition of Human Cloning Act 2002 and Research
Involving Embryos Act 2002 (2011) (‘Heerey Review’), para. 4.3.
[10] Lockhart Review,
supra note 9, at 69 (para.
7.1).
[11] Lockhart Review,
supra note 10, at xv.
[12]
Isabel Karpin, The Uncanny Embryos: Legal Limits to the Human and
Reproduction Without Women, 28 SYD. LAW REV. 600, 603 (2006).
[13] Reproductive Technology
Council of WA, Policy on Embryo Storage and Applications to Extend Beyond 10
Years (2010) http://www.rtc.org.au/clinics/docs/embryo_storage_policy.pdf
(accessed 15 September 2016)
[14]
The study utilised a multi-method recruitment process, using both clinical
avenues and broader advertising to the public and drew
responses from patients
who had undertaken IVF treatment in all Australian jurisdictions except the
Northern Territory. Volunteers
were invited to participate through either
engaging in face-to-face or phone interviews, or by filling out a survey either
online
or by hand. Recruitment covered the period July 201 to July 2012. The
sole inclusion criterion of the broader study was that participants
currently or
previously had stored embryos created through IVF. A survey was utilised to
gauge broad trends with in-depth semi-structured
interviews to explore
participant views and reasoning. Valid surveys were completed by 349
participants. Quantitative data collected
through the surveys was statistically
analysed with the aid of SPSS. Qualitative data both in surveys and interviews
were subject
to thematic analysis. Each member of the research team undertook
multiple readings of interview transcripts and survey open responses
both
throughout the data collection period and afterwards, coding emergent themes.
Identified themes were then subject to comparative
analysis among the entire
research team to ensure uniformity of interpretation. Ethics approval to conduct
this research was obtained
through the University of Technology Sydney Human
Research Ethics Committee UTS HREC Reference Number: 2009-262A and
2015000094.
[15] Interviews were
semi structured. All interviewees are represented by a pseudonym. Interview
duration varied between 30 minutes to
90 minutes, with most lasting around one
hour. In common with most empirical research on fertility, participants in the
study were
overwhelmingly female (>90%). Participants tended to be in married
or de facto relationships and were generally between 31 and
40 years of age, had
typically commenced treatment in the last two to 10 years, conceived children
through IVF, and most still had
embryos in storage at the time of their
participation. Nearly half of those with embryos in storage indicated that they
had completed
their IVF treatment. While the majority of participants had used
their own gametes in their IVF treatment, around one-third were
recipients of
donated gametes or embryos. For more detail on the methods and findings of the
study see Millbank J, Stuhmcke A, Karpin
I, Chandler E. Enhancing reproductive
opportunity: a study of decision-making concerning stored embryos: report.
http://allabouttheembryo.net/embryo_wp/?page_id=43
(2013) date last accessed 5
October 2016.
[16] See eg Emily
Jackson, Degendering Reproduction? 16 MEDICAL LAW REV 346 (2008); Tara
Cousineau and Alice Domar, Psychological Impact of Infertility, 21 BEST
PRACTICE AND RESEARCH CLINICAL OBSTETRICS AND GYNAECOLOGY 293 (2007); Sheryl de
Lacey, Parent Identity and ‘Virtual’ Children: Why Patients
Discard Rather Than Donate Unused Embryos 20 HUMAN REPRODUCTION 1661 (2005);
Jenni Millbank et al., Towards Facilitative Regulation of Assisted
Reproductive Treatment in Australia, 20 JLM 701
(2013).
[17] Jennifer Nedelsky,
LAW’S RELATIONS: A RELATIONAL THEORY OF SELF, AUTONOMY, AND LAW (2011);
Françoise Bayliss, The Self
in Situ: A Relational Account of Personal
Identity, in BEING RELATIONAL: REFLECTIONS ON RELATIONAL THEORY AND HEALTH LAW
(Jocelyn
Downie & Jennifer Llewellyn eds,
2012).
[18] See eg Angela
Campbell’s feminist case for ‘choice’ rather than consent,
within a framework of critical legal pluralism:
SISTER WIVES, SURROGATES AND SEX
WORKERS: OUTLAWS BY CHOICE?
(2013).
[19] For an overview, see
eg Jenni Millbank et al., Towards Facilitative Regulation of Assisted
Reproductive Treatment in Australia, 20 JLM 701
(2013).
[20] National Health and
Medical Research Council (NHMRC), Ethical Guidelines on Assisted Reproductive
Technology (1996) at 1.
[21]
NHMRC, Ethical Guidelines on the Use of Assisted Reproductive Technology
in Clinical Practice and Research (2004) at 13 (para. 5.2), 45 (para.
15.2).
[22] NHMRC, Ethical
Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice
and Research (2007) at 10 (para. 2.6); NHMRC, Ethical Guidelines on the
Use of Assisted Reproductive Technology in Clinical Practice and Research
(Draft) (2015) (para. 3.1).
[23]
NHMRC (2004), supra note 17, at 28 (para. 8.9), 49 (para.
17.4).
[24] Australia has kept
very detailed records of IVF treatment and outcomes since the early 1990s. Yet
the number of women undertaking
treatment, rather than the number of treatment
cycles, pregnancies and births, has only recently been counted. In 2013, almost
40,000
women undertook one or more cycles of IVF treatment. See Alan Macaldowie
et al., Assisted Reproductive Technology in Australia and New Zealand 2013
(2015) at vi.
[25] For an
overview of these developments, see Dianne Nicol et al., Regulating
Biomedical Advances: Embryonic Stem Cell Research[2002] MqLawJl 2; , 2 MACQUARIE LJ 31 (2002);
Don Chalmers, Professional Self-Regulation and Guidelines in Assisted
Reproduction, 9 JLM 414
(2002).
[26] Senate Select
Committee on the Human Embryo Experimentation Bill 1985, Human Embryo
Experimentation in Australia (1986) (hereinafter ‘Tate Report’)
at v.
[27] Committee to Consider
the Social, Ethical and Legal Issues Arising from In Vitro Fertilisation,
1982-1984, Consolidated Reports (1990) (‘Waller Reports’). On
the history of this legislation in comparison with the UK approach, see Kerry
Petersen,
The Regulation of Assisted Reproductive Technology: A Comparative
Study of Permissive and Prescriptive Laws and Policies, 9 JLM 483
(2009).
[28] Tate Report,
supra note 22, at
3.18.
[29] World Medical
Association, Declaration of Helsinki: Ethical Principles for Medical Research
Involving Human Subjects (1964) (amended 2013). The declaration was
reproduced in full in Appendix VII to the Tate
Report.
[30] See eg Lockhart
Review, supra note 9, at
87.
[31] For a contemporaneous
critique, see Pascal Kasimba & Stephen Buckle, Embryos and Children:
Problems Raised by the Majority Report of the Tate Report on Human Embryo
Experimentation, 2 AJFL 228
(1988).
[32] Tate Report,
supra note 22, at xiii (emphasis added). Elsewhere, the majority rests
its conclusions on the ‘ethical behaviour owed to that entity
resulting
from the fertilisation’: Id. (para.
2.15).
[33] The Warnock Report
asked, in a slightly less loaded fashion, ‘how is it right to treat the
human embryo?’ (supra note 3, para. 11.09). In 2002, the UK House
of Commons Science and Technology Committee stated, ‘At the heart of any
review
of assisted reproduction legislation is the fundamental question of the
status to be accorded to the human embryo’ (supra note 8, vol. 1, ch. 3, para.
24).
[34] Tate Report,
supra note 22, at xiv, (conclusions para.
6).
[35] Id. at [D.20],
page 70
[36] Id. at
[D.23], [D.28].
[37] Id.
at [D.24].
[38] Put simply,
the reduced likelihood of successful thawing and implantation per embryo is
subsumed by the benefit to the woman of fewer
stimulated IVF cycles (and her
ability to control the timing and spacing of her children through enhanced
ability to attain a pregnancy
at a later age with ‘younger’
embryos).
[39] This point remains
germane, as the creation of extra embryos for storage is routine IVF practice (a
cycle creating around 10-15 embryos
is regarded as ‘ideal’, with a
strict Australian standard of transferring only one or, in certain
circumstances, a maximum
of two embryos at a time). See Sesh Sunkara et al.,
Association between the number of Eggs and Live Births in IVF Treatment,
26(7) HUM. REPROD. 1768
(2011).
[40] Tate Report,
supra note 22, at
[D.48].
[41] Id. at
[D.50], [D.52].
[42] Sarah
Franklin, Embryonic Economies: The Double Reproductive Value of Stem
Cells, 1 BIOSOCIETIES 71
(2006).
[43] When first
established, the NHMRC Guidelines were the only form of external governance of
ART practice in Australia, pre-dating any
State-based legislation, and
influential through a peer-norm-based inspection and voluntary compliance
process: NHMRC, In Vitro Fertilisation Centres in Australia: Their Observance
of the National Health and Medical Research Council Guidelines (1987). After
Victoria introduced legislation regulating ART in 1984 (operative from 1988) as
did South Australia in 1988 and Western
Australia in 1991, the NHMRC guidelines
were subordinate to law in those states, but continued to operate in all other
states and
territories.
[44]
Research Involving Human Embryos Act 2002 (Cth), s. 11. RTAC, Code of
Practice for Assisted Reproductive Technology Units (revised August 2015)
(‘RTAC Code of Practice’),
http://www.fertilitysociety.com.au/wp-content/uploads/RTAC-COP-2015.pdf
(accessed 1 June, 2016).
[45] See
Assisted Reproductive Treatment Regulations 2010 (SA), reg. 8(2)(a); Victorian
Assisted Reproductive Treatment Authority (VARTA),
Information for Registered
ART Providers (Jan 2014) notes that compliance with the NHMRC Ethical
Guidelines is a condition of registration; see Assisted Reproductive Treatment
Act 2008 (Vic), pt. 8; Human Reproductive Technology Act 1991 (WA), ss
33(2)(ea), 29(5)(aa). NSW does not expressly require this, but there are few
areas of inconsistency: Assisted Reproductive Technology Act 2007 (NSW).
[46] Stuhmcke and Chandler supra
note 5, 132. Notably in 290 survey
responses in the current study to a question about desired storage limits only
55 respondents nominated
a limit under 10 years, with the majority preferring no
limit or a limit framed in terms of the recipient’s reproductive lifetime:
see Isabel Karpin et al., Analysing IVF Participant Understanding of,
Involvement in, and Control over Embryo Storage and Destruction
in Australia, 20
JLM 811 (2013).
[47] NHMRC
(1996), supra note 16, at 1 (emphasis
added).
[48] Id. at 10
(paras 6.3, 6.4).
[49] Ibid.
(para. 6.2) (emphasis
added).
[50] NHMRC, Ethical
Guidelines on the Use of Reproductive Technology in Clinical Practice and
Research: Draft for Public Consultation (February 2003) at
2.
[51] The final version instead
states that ‘the welfare of people who may be born as a result of the use
of ART is paramount’
and then includes, for the first time, ‘the
autonomy’ of individuals utilizing ART: NHMRC (2004), supra note
17, at 5 (paras 2.5, 2.6).
[52]
NHMRC (2003), supra note 45, at (para
5.1).
[53] NHMRC (2004),
supra note 17, at 13 (para.
5.1).
[54] Ibid. (para.
5.2). Repeated in the section on research, Id. at 45 (para.
15.2).
[55] Compare NHMRC (2003),
supra note 45, at (paras. 9.7, 9.13), with NHMRC (2004), supra
note 17, at 27-28 (paras 8.5, 8.7.2) (‘die’ in the 2003 draft was
replaced in the final 2004 version with ‘disposal’.
This was
likewise reflected in the provisions on research, in which the 2003 draft refers
to information being given to embryo providers
that the ‘embryo is allowed
to die’, which was replaced in the 2004 version with information on
‘what will happen
to each
embryo’).
[56] The 2004
Guidelines contained a definition of ‘human embryo’ that reflected
the terms of 2002 federal legislation (‘a
live embryo’). A revised
2006 legislative definition of ‘human embryo’ (‘a discrete
entity’) was then
reflected in the definition of ‘human
embryo’ in the 2007 revision of the ethical guidelines, and was then
carried through
into the 2015 draft guidelines: Prohibition on Human Cloning Act
2002 (Cth), s. 8; Research Involving Human Embryos Act 2002 (Cth), s. 7. The
added definition of ‘embryo’ therefore sits alongside the definition
of ‘human
embryo’.
[57] NHMRC (1996),
supra note 16, at 11 (para. 7.4) (emphasis added).
[58] NHMRC (2004), supra
note 17, at 27-28 (paras 8.7,
8.9.1).
[59] NHMRC (2015),
supra note 18, at (paras 7.2, 7.3,
7.6).
[60] NHMRC (2004), supra
note 17, at 49 (para. 17.4); NHMRC (2007) at 71 (para. 17.7). The 2007
revision separates out research on embryos that will be used
to attempt
pregnancy and those that will not. In contrast to the Tate Report, then, the
approach to therapeutic intervention in the
guidelines also addresses the
interest of the woman in having access to a viable
embryo.
[61] Isabel Karpin,
The Legal and Relational Identity of the Non-Yet Generation, 4(2) LAW,
INNOVATION AND TECHNOLOGY 122, 140, 141
(2012).
[62] National Health and
Medical Research Council Act 1992 (Cth), s. 13.
[63] NHMRC, Supplementary Note
1 Institutional Ethics Committees (IEC) (1992).
[64] The membership of the group
which devised the 1992 Supplementary Note is not public. However, the 1986
review of implementation of
the guidelines was undertaken by a nine-person
Medical Research Ethics Committee, in which there were three women: two laywomen
and
one scientist. The 1996 Guidelines were put together by a working group
established in 1994, which had seven people on it, of whom
three were women:
NHMRC (1996), supra note 16, at unnumbered page. The 2004 version
comprised two separate working groups over the period of development, the first
with
three female members out of a panel of nine, and the second with three out
of 10: NHMRC (2004), supra note 20, at 55-56 (Appendix A). The 2015 version
was devised by a group of 11, of whom four were women: Assisted Reproductive
Technology
(ART) Working Committee, Disclosure of Interests (2015) https://www.nhmrc.gov.au/_files_nhmrc/file/health_ethics/ethcial_issues/disclosure_of_interests_july_2015.pdf
(accessed I June 2016).
[65]
Sheryl de Lacey et al, Perceptions of Embryo Status and Embryo Use in an
Australian Community, 24 Reproductive Biomedicine Online 727, 742, 743
(2012)
[66] Anne Donchin,
Towards a Gender-Sensitive Assisted Reproduction Policy, 23 Bioethics 28,
34 (2009).
[67] Karpin,
supra note 12, at 621.
[68] Jenni Millbank et al.,
Towards Facilitative Regulation of Assisted Reproductive Treatment in Australia,
20 JLM 701 (2013) at 704. Cf. Martin Johnson, Escaping the Tyranny of the
Embryo? A New Approach to ART Regulation Based on UK and Australian
Experiences, 21 HUM. REPROD. 2756 (2006) (arguing for a distinction between
the embryo intended to be a child and the embryo not so intended);
see also
Lockhart Review, supra note 9
(featuring a number of supporters of this distinction based on intended use in
Chapter 7, ‘Community Standards on Status and
Use of
Embryos’).
[69] See eg
Helen Keane, Foetal Personhood and Representations of the Absent Child in
Pregnancy Loss Memorialization, 10 Feminist Theory 153 (20009); Catherine
Kevin, ‘I did not lose my baby...my baby just died’ Twenty-First
Century Discourses on Miscarriage in Political and Historical
Context, 110
SOUTH ATLANTIC QUARTERLY 849
(2011).
[70] See eg Jodi Bender,
Snowflakes in Texas? Enacting Legislation to Allow for Embryo Adoption,
16 Tex Wesleyan L Rev 413
(2009-2010)
[71] For a concise
summary see Sheryl de Lacey, Decision Making about Frozen Supernumerary Human
Embryos, 16 HUMAN FERTILITY 31
(2013).
[72] See eg Bangsboll et
al, Patients’ Attitudes Towards Donation of Surplus Cryopreserved Embryos
for Treatment and Research 19
Human Reproduction 2415(2004); de Lacey above note
15; Fuscaldo et al, How to Facilitate Decisions about Surplus Embryos:
Patients’
Views, 22 Human Reproduction 3129
(2007).
[73] See eg Sheryl de
Lacey, Parent Identity and ‘Virtual’ Children: Why Patients
Discard Rather than Donate Unused Embryos, 20 HUM. REPROD. 1661
(2005).
[74] For a more detailed
discussion, see Jenni Millbank et al., Embryo Donation for Reproductive Use in
Australia, 20 JLM 789
(2013).
[75] See Kathryn Ehrich
et al., The Embryo as Moral Work Object: PGD/IVF Staff Views and
Experiences, 30 SOCIOL. HEALTH ILLN. 772 (2008) (discussing these issues in
the context of ART staff, rather than women patients); see also Karpin,
supra note 56, at 142 (describing the embryo as a ‘nascent love
object’).
[76] See David
Ellison & Isabel Karpin, Death Without Life: Grievability and IVF,
110 SOUTH ATL. Q. 765
(2011).
[77] On the assessment of
potential offspring interests in ART practice in Australia see Thorpe et al,
In the Best Interests of the Child? Regulating Assisted Reproductive
Technologies and the Well-being of Offspring in Three Australian
States, 26
IJLPF 259 (2012); de Lacey et al, Child Interests in Assisted Reproductive
Technology: How is the Welfare Principle Applied in Practice? 30 HUMAN
REPRODUCTION 616 (2015).
[78]
Note that this ethical issue is distinct from selecting embryos in favour of
disability, as these were the only available embryos,
and indeed had been
utilised in her own treatment with no ethical objection. For discussion of the
issue of use of affected embryos
for reproductive donation see Sheryl de Lacey S
and Rob Norman, What Should We do with Donated Embryos that may be
Genetically Affected? 19 HUMAN REPRODUCTION 1065 (2004). It is noteworthy
that the 2015 draft NHMRC guidelines for the first time state that donation of
affected embryos should not be ‘arbitrarily prohibited’ but should
instead allow for a careful assessment of risks and
impact with the recipient,
including genetic counselling : National Health and Medical Research Council
(NHMRC), Draft Ethical guidelines
on the use of assisted reproductive technology
in clinical practice and research; Public Consultation 2015, at [6.3],
https://consultations.nhmrc.gov.au/public_consultations/assisted-reproductive-tech
(accessed 15 September 2016)
[79]
Anita Stuhmcke, Tick Tock Goes the Clock: Rethinking Policy and Embryo
Storage Limits, 22 FEMINIST LEGAL STUDIES 285 (2014).
[80] National Health and Medical
Research Council (NHMRC), Draft Ethical guidelines on the use of
assisted reproductive technology in clinical practice and research; Public
Consultation 2015, https://consultations.nhmrc.gov.au/public_consultations/assisted-reproductive-tech
(accessed 15 September
2016)
[81] Karpin,
supra note 60, at 143.
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