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University of Technology Sydney Law Research Series |
Last Updated: 21 September 2020
What is the responsibility of Australian medical professionals whose patients travel abroad for assisted reproduction?
This is a pre publication version of an
article forthcoming in (2019) Medical Law Review
Jenni
Millbank[♦]
Abstract
Australian medical
professionals whose patients undertake assisted reproductive treatment abroad
face a conflict: to try to provide
optimal and on-going care for their patient
at the same time as ensuring compliance with Australian legal, ethical and
professional
rules which proscribe as unsafe or unethical key aspects of such
treatment.
A major suggestion from literature on medical travel is that
risks to the patient can be mitigated through the involvement of the
local
professional. However, the force of legal regulation and ethical guidance in
Australia strenuously directs clinicians away
from involvement in overseas
reproductive treatment.
This article reports on 37 interviews with
Australians travelling abroad for surrogacy, egg donation and embryo donation,
reflecting
on patients' experiences with Australian medical professionals both
before and after they travelled. Patient reports demonstrate
a fragmented and
bewildering medical landscape in Australia, in which the ability to access
domestic care and expertise varied markedly
depending upon the kind of treatment
patients were seeking abroad, and the mode of practice of the Australian doctor.
Doctors practicing
within licensed IVF clinics were notably more constrained
than those outside such a setting. Patients seeking egg donation were offered
information and received a wide range of diagnostic and preparatory treatments,
while those seeking surrogacy were shunned, chided
and offered limited (and
sometimes covert) assistance.
While recent changes to national ethical
guidance improve clarity on information giving, the ethical and legal propriety
of Australian
medical professionals providing diagnostic or preparatory
treatment for cross border reproduction remains uncertain.
Keywords
cross border reproduction; collaborative care; egg donation; professional responsibility; surrogacy; ethical guidelines
Introduction
Commentators have
expressed a range of concerns about the risks posed by medical
travel.[1] Feminist critics of cross
border assisted reproduction practices have focused on the impact of inequality
on the safety and informed
consent of reproductive contributors such as
surrogates and egg donors in destination countries, as well as the systemic
entrenchment
of inequalities in destination healthcare
systems.[2] Within broader medical
travel, such as that for cosmetic, dental or bariatric surgery, analysts have
tended to focus instead on risks
to the travelling patient; through for example,
incomplete or incompetent care abroad, or lack of follow up and poor record
management
or information flow between treating clinicians once
home,[3] and the resulting strain on
local health systems when patients return with complications that require
intensive care or extensive
remediation.[4]
Heightened
risks faced by Australians travelling abroad for assisted reproduction include
ovarian hyper-stimulation due to less stringent
medication or monitoring
protocols, multiple birth as a result of more common (and higher order) multiple
embryo transfer, and, due
to the lack of counselling and prevalence of donor
anonymity in overseas treatment, possible later difficulties with disclosure and
adjustment concerning donor conception if the donor’s identifying
information is desired by parents or offspring and cannot
be
accessed.[5]
This article examines the conflict which lies in the competing obligations for
Australian medical professionals whose patients undertake
assisted reproductive
treatment abroad: to try to provide optimal and on-going care for their patient
at the same time as ensuring
compliance with Australian legal, ethical and
professional rules which proscribe as unsafe or unethical key aspects of such
treatment.
A prominent suggestion from the literature on medical travel
is that risks to the patient can be mitigated through the involvement
of the
local professional both in assisting the patient with informed
decision-making,[6] and through
collaborative care or continuity of care between the patient’s
home medical professionals and the treating professionals
abroad.[7]
Such local involvement is said to lessen the likelihood of harm by ensuring that
patients understand risks before making travel or
treatment decisions, including
an awareness of variations in ethical or clinical standards between their home
and treating country,
by reducing the need for lengthy or repeated travel
through preparatory treatment at home, and mitigating risks of medical
complications
through record sharing and other forms of enhanced communication
between
professionals.[8]
Van Hoof et al go so far as to argue that such benefits may outweigh a medical
professional’s obligation to conflicting law
in their own
jurisdiction:
A local physician who is helping a patient evade the law may have a
justifiable claim that there is no moral wrong in this act...
The duty of care
for the patient can outweigh the duty to uphold the spirit and essence of the
law. [9]
In 2016 the
Australian and New Zealand Royal College of Obstetricians and Gynaecologists
(RANZCOG) issued a position statement on
cross border reproductive care (CBRC).
The statement recommends that individuals seeking CBRC ‘should have an
informed discussion’
with a specialist in obstetrics and gynaecology,
taking into account suitability for pregnancy and the welfare of the unborn
child,
before travelling, and also that patients who have undertaken CBRC should
not be subject to penalties or restrictions on care upon
their return. The
statement also recommends that:
Practitioners facilitating CBRC should be familiar with their local
regulatory and legal obligations. Practitioners are at all times
subject to
local regulations... Medical practitioners should be aware that significant
penalties may apply for facilitation of certain
reproductive practices, such as
commercial surrogacy.
[10]
The RANZCOG guidance is
patient-centred in that it encourages informed decision-making before the
decision to travel and continued
care after travel. However, it provides no
assistance on the knotty question of what degree of involvement a practitioner
may ethically
have in terms of diagnosis and preparatory treatment or engagement
in a process of collaborative cross-border
care.[11]
The injunction to
practitioners to ‘be familiar’ with regulatory and legal obligations
is easier said than done. The force
of legal regulation and ethical guidance in
Australia strenuously directs clinicians away from any involvement in
overseas reproductive treatment. Yet it does so with varying strictures as
between different practices (egg
donation versus surrogacy), and as between
different practitioners and sites of practice (fertility specialists working
within licensed
IVF clinics versus specialists operating outside of clinics and
general practitioners (GPs)). Notably, what constitutes prohibited
‘facilitation’ practices has never been defined.
In 2017 the
Australian national ethical guidelines on assisted reproductive technology
tackled CBRC in some detail for the first time
in their 35-year
history.[12]
While these revisions provide greater clarity on information giving, and greater
consistency on approaches between egg donation and
surrogacy, they continue to
direct practitioners away from continuity of care. Moreover, the NHMRC
Guidelines continue to be situated within a patchwork framework of regulation:
applying
only to clinicians operating within licensed IVF clinics, such that
they may continue to be sidestepped by other medical practitioners.
This article
argues that a fragmented and inchoate approach to ethical duties in Australia
has fuelled a series of elaborate ‘grey
zones’ which both patients
and practitioners have occupied and expanded as the Australian uptake of CBRC
has continued to grow.
The context for this discussion is provided by
empirical findings drawn from interviews with Australians travelling abroad for
assisted
reproduction, reporting on patients’ actual experiences with
Australian medical professionals both before and after they travelled.
The views
and experiences of interviewees are drawn upon to situate this ethical
discussion within a pragmatic lived context, in
which patients experienced
themselves as ‘helped’, ‘supported’, or ‘turned
out in the cold’,
and professionals as nudging them in particular
directions or ‘selling them into’ services, within a confusing maze
of
Australian and destination country regulation.
Little is known about
the extent to which local medical professionals participate in
CBRC.[13] In 2010 the European
Society of Human Reproduction and Embryology (ESHRE) published a survey of 1,230
foreign patients at forty-six
IVF clinics in six destination countries. Among
respondents 59 per cent reported that they had received some help from their own
doctor, for drug prescription (16.7%), cycle monitoring (16.7%) or both
(25.6%).[14] However, the level of
involvement varied widely depending upon the patient’s home country: there
was a high level of medical
support in Germany (81.7%), compared to the UK which
was one of the lowest at 45.3% (of 53 UK
patients).[15] In Culley et
al’s 2011 qualitative study of 51 British patients who undertook CBRC, 18
participants reported no involvement
or assistance from UK healthcare
professionals. Another 18 participants reported some assistance, mostly for
preparatory ultrasounds
or prescriptions, on an ad hoc basis; only six among
them reported assistance from their home fertility
clinic.[16]
Culley notes, ‘Many of our participants reported that they would have
appreciated recommendations on overseas clinics from
UK clinics, and assistance
with preparation and follow
up’.[17]
The findings
in the present study of Australian patients is broadly consistent with the
international data cited above. Twenty-two
of 37 participants who undertook
treatment abroad (59%) reported some involvement from Australian health
practitioners in their CBRC
process; but only a minority reported on-going
involvement from a treating fertility doctor. This low level of specialist
involvement
is arguably a consequence of the Australian system of fertility
regulation, explained below.
The study
The broader study examined the experiences of
Australians who travel, both internationally and within Australia, to undertake
assisted
reproduction. Semi-structured interviews took place between June 2015
and June 2018 with a total of 93 interviews
conducted.[18] The total cohort
comprised 66 interviews with
patients[19] and 27 with a variety
of professionals.[20] All
participants are referred to with pseudonyms.
Among the patient group
were 37 interviews with people who had travelled overseas. Countries travelled
to were: India, Thailand, Nepal,
Mexico, Spain, South Africa, Greece, Canada,
and the USA.[21] Ten participants
had travelled to more than one country in different attempts. Several
participants also undertook treatment with
more than one provider in a given
country in subsequent pregnancy attempts. Twenty interviews involved
participants who had undertaken
one or more surrogacy arrangements overseas
(seven gay men, 12 women in heterosexual relationships and one man and woman
interviewed
as a couple). Seventeen interviewees were of patients who travelled
to undertake egg or embryo donation in order to try to achieve
a pregnancy
themselves (16 women and one man and woman interviewed as a
couple).[22] Among a number of other
topics, patients were asked about their engagement with Australian health
professionals in their process.
The interviews revealed significantly more local
health practitioner involvement in cross border reproductive treatment than the
researchers had anticipated. While it is not possible to know whether this is
representative of the experiences of Australian fertility
travellers more
broadly, this qualitative interview data provides valuable insights into
patient’s experiences and perceptions
of local care in CBRC.
Who is travelling, for what, and how is this at odds with Australian standards
Surrogacy and egg donation are lawful
throughout Australia, with relatively liberal access and a broad range of
private providers
of assisted reproductive treatments. Yet Australians are
notable consumers of CBRC in a wide variety of destination countries.
Current evidence suggests that Australian women travel abroad to
undertake egg donation to access donor eggs more quickly, and with
a wider range
of choice, than they would be able to within
Australia.[23]
Egg donor agencies in destination countries recruit young women (typically under
25 years old) and pay them, or arrange for them
to be paid, a set
sum.[24] Although payments vary
widely across jurisdictions (from around $800 AUD in South Africa to $5000 and
upwards in the USA) such a
fixed sum is not a direct reimbursement of
out-of-pocket expenses and so would be regarded as ‘valuable
consideration’
or commercial trading under Australian law. Common
destinations for Australians seeking egg donation at the time of writing are
South
Africa, Greece, Spain and the USA, and this was reflected in the cohort of
the present study.[25]
The
anonymity of egg donors in mandated by law in South Africa, Spain and Greece. In
the USA the use of unidentifiable donors remains
common practice, but some
services also offer identifiable donors (across a range such as
‘open’ donors whose identity
is available at the time, or
‘identity release’ donors who consent to be identifiable at a later
point). Among all interviewees
who undertook egg and embryo donation overseas,
only four, all of whom undertook treatment in the USA, had an identifiable donor
– and all reported that this arose out of their own insistence on this
requirement. While many commentators assume that those
travelling to
jurisdictions with donor anonymity do so because they are actively
seeking anonymous donors,[26]
this and other Australian studies do not bear out that
assumption.[27] In fact only four
egg recipients, Olivia and Madeline (USA), Shelby (Greece) and Katinka (South
Africa) indicated that an unidentifiable
donor was their preference. The
majority of interviewees simply stated that this was ‘how things
were’ and accepted it
as their ‘only chance’. Indeed, five
interviewees had connected with other sibling and half-sibling families through
voluntary registers and other means, even without identifying information on the
donor/s.
Since the late 1990s, Australia has strongly promoted single
embryo transfer (SET) in order to reduce multiple births associated with
IVF,
which are now among the world’s lowest, at 4.4 % of IVF births for
2015.[28] This is not so in many
destination countries, where double embryo transfer remains the norm in IVF
generally, with an even higher
incidence of multiple embryo transfer in
surrogacy. A recent large scale retrospective analysis of USA fertility clinic
data from
2006-2013 found an average of two embryos transferred per donor IVF
cycle, with a resulting multiple birth rate of
20.8%.[29] Women in the present
study undertaking egg donation abroad in order to achieve their own pregnancy
reported between one and three
embryos per transfer, with two embryos reported
as the expected ‘norm’ in all four destination
countries.[30] As with anonymity of
donors, interviewees did not generally report that they travelled seeking this
practice; rather it was just
‘how things were done’ in the
destination country.
All except one of the 17 women undertaking egg or
embryo donation abroad had undertaken extensive IVF treatment within Australia
utilising
their own eggs, and at least five women had also undertaken subsequent
IVF within Australia using donated eggs. As a consequence,
these women had
received extensive advice on SET and the risks involved in multiple pregnancies
during prior treatment. This greater
awareness meant that several women reported
that they had refused double embryo transfer overseas on one or more treatment
occasions.
This may have had some impact upon the incidence of multiple births,
although the rate was still considerably higher than in domestic
treatment: of
11 births and four resulting pregnancies in the overseas egg donation group,
there were three multiple pregnancies,
all of which were twins. (Likewise of 32
resulting pregnancies in Culley et al’s UK study, 6 or 19% were
twins).[31]
Australian women
and men who travel overseas to undertake surrogacy do so for a range of reasons
which include: local legislative
barriers to access in some states (such as the
exclusion of gay men from regulated surrogacy in Western Australia), perceptions
of
unavailability or complexity of domestic surrogacy, the desire to access
professional intermediation and matching services, the desire
for (the
appearance of) legal certainty around parentage and surrogacy obligations, and
the belief that overseas providers are more
successful and
accessible.[32]
When gay men undertake surrogacy, or when a female intended parent is unable to
contribute her own eggs, overseas surrogacy arrangements
also included the use
of egg donation services such as those described above. Within the 20 interviews
of those who undertook surrogacy
abroad, 16 had also utilised donor eggs in one
or more surrogacy attempts.
Common destinations for Australians in the
2000s seeking surrogacy were India and Thailand. Following regulatory
crack-downs, operators
migrated across to Nepal and Cambodia, respectively, as
well as Mexico, before these jurisdictions, too, were shut
down.[33] Canada, the USA, Ukraine
and Kenya remain common destinations at the time of writing.
Surrogacy
agencies recruit and match surrogates with intended parents and oversee the
execution of contractual arrangements which
purport to be directly between the
surrogate and parents. Such contracts typically involve a series of instalments
of set payments
to surrogates in addition to actual expenses, totalling around
$8000 in India or Thailand (in the past) to $30,000‑–$50,000
in the
USA. As with egg donation, payments to surrogates above directly incurred
reasonable expenses are unlawful in Australia.
In contrast to egg
donors, surrogates are identifiable in most current destination countries
(although notably in India surrogates
were more likely to be secreted from both
social networks and intended parents, with deleterious effects on their
well-being).[34] In the USA and
Canada it is common practice for intended parents and surrogates to meet and to
maintain a relationship during the
pregnancy, and often afterwards. As with egg
recipients, only a minority of intended parents undertaking surrogacy utilised
identifiable
egg donors; reflecting the fact that most destination jurisdictions
for surrogacy also mandated gamete donor anonymity. As with egg
donation, the
use of identifiable donors in surrogacy resulted from the intended
parents’ own strong preference and occurred
mostly in the USA, but also in
two arrangements in Thailand and one in India (in which the intended parent met
the Ukrainian egg
donor by chance at the clinic and established a
friendship).
Multiple embryo transfer has been reported as common
practice in international surrogacy; up to four embryos was common in the past
in India, with two to three still accepted in the USA (resulting in a multiple
birth rate of over 42 per cent among gestational surrogates
there).[35] In a 2014 survey of 112
Australians who had travelled overseas for surrogacy, the mean number of embryos
transferred was 2.9 and
62 participants (55%) reported that their surrogacy
involved a multiple pregnancy (with a resulting 45% of births
premature).[36] The experience of
interviewees in the present study was comparable with these findings, with
participants reporting between one and
four embryos transferred per surrogacy
attempt, and two as ‘the norm’. Of the 18 interviewees reporting
births from overseas
surrogacy arrangements, eight were multiple births; seven
twins and one set of triplets. As with the egg donation cohort, an insistence
upon SET arose in the surrogacy interviewees among some women who had undertaken
previous IVF in Australia, but this appeared to
be less common.
The Australian legal and ethical landscape
Australian regulation places a strong emphasis
on altruism across all elements of reproductive contribution. The 2017 NHMRC
Guidelines
state that:
The current situation in Australia is that gamete donation must be
altruistic, and that commercial trading in human gametes or the
use of direct or
indirect inducements is prohibited by legislation. This position reflects
concerns about the potential exploitation
of donors (particularly egg donors)
and the potential risks to all
parties.[37]
and
Commercial surrogacy, where the surrogate receives financial compensation
above and beyond expenses associated with the surrogacy
procedure and pregnancy,
is ethically unacceptable because it raises concerns about the commodification
and exploitation of the surrogate,
the commissioning parent(s) and any person
born as a result of the surrogacy
arrangement.[38]
There is no
ethical distinction drawn between payment for surrogacy or for egg donation in
these guidelines. Likewise, legislative
objectives are expressed in very similar
terms when proscribing payment for gametes, embryos and surrogacy. Yet, the way
in which
prohibitions on payment have been enacted in legislation and publicised
are widely divergent, and have arguably resulted in a situation
in which payment
for surrogacy is perceived as somehow really illegal while payment for
eggs is overlooked entirely or viewed as a merely technical breach.
Trading in gametes is a criminal offence under Australian federal and
state law if undertaken within Australia; this includes the
giving, receiving,
or offering to give or receive, valuable consideration, such that
offences would encompass the actions of the egg donor, the agent or agency
and
the egg recipient in most forms of overseas arrangements if taking place within
Australian jurisdiction.[39] Very
little attention has been paid to the fact that some, perhaps most, Australians
entering into paid arrangements with egg donors
abroad through online mediums
are actually within Australian borders at the time they offer the payment, and
possibly also while
they transfer the payment. Even though the egg is being
provided overseas, there is the real possibility that some patients are still
committing a criminal offence before they travel.
All Australian states
currently criminalise commercial surrogacy if it is undertaken within the
relevant state, through prohibiting
the giving or offering of payment, receiving
or offering to receive payment, as well as prohibiting intermediaries and often
prohibiting
advertising.[40]
As with offering payment for eggs, it is often overlooked that those who
offer payment for surrogacy (and who act as intermediaries for paid
surrogacy) could actually be committing offences as they sit at their
keyboards
in Australia sending emails or Facebook messages, even though the execution of
the actual arrangement and payment may ultimately
take place offshore.
Commonality in the ethical basis, and fundamentals of the legal
prohibitions, concerning payments for eggs and for surrogacy has been
overshadowed by the unusual extraterritorial criminal offences concerning
commercial surrogacy in three jurisdictions; the ACT, Queensland
and NSW. These
provisions explicitly extend criminal liability to those who are ordinarily
resident in those jurisdictions even if
the entirety of their conduct took place
elsewhere.[41] This means that even
if every aspect of a commercial surrogacy arrangement, offer and all, took place
abroad, residents from those
three jurisdictions are still caught by such
criminal prohibitions. These provisions received significant media attention and
adverse
commentary, particularly in NSW, as in 2010 NSW was the only
jurisdiction to actually introduce this provision (rather than simply
carrying it over from earlier laws as the ACT and Qld had) as part of what was
an otherwise ‘liberalising’
wave of surrogacy reforms throughout
Australia.
Licensed IVF clinics are subject to an additional form of
regulation in that they must comply with national
guidelines.[42] These guidelines are
consulted upon and reissued every 10 years or so, and they reflect developing
understandings, evidence and norms
concerning both safety and ethical standards
in assisted reproduction. Since 2007, compliance with these guidelines has been
a federal
statutory condition of licence for IVF
clinics.[43] All but one of our
patient cohort were reporting upon treatment undertaken under the 2004/2007
Guidelines, so these will be addressed
first before turning to the new
challenges posed by the 2017 guidelines at the conclusion of this
article.
Within Australia, single embryo transfer is mandatory in
surrogacy, and very strongly encouraged in all other IVF
cycles.[44] Since 2004, the National
Ethical Guidelines have asserted emphatically that it is the right of donor
conceived people to be able
to access information on their genetic heritage,
prohibited Australian IVF clinics from undertaking gamete donation with
anonymous
donors, and included numerous provisions for the mandatory storage and
release of identifying information on donors (which had at
that time had only
been provided for by law in two
states).[45]
The 2004/2007
Guidelines appeared to craft a broader scope of responsibility for professional
actions concerning surrogacy compared
to egg donation. Under the heading
‘Do not trade in human gametes’, the Guidelines provided,
‘Commercial trading
in human gametes and/or the use of direct or indirect
inducements, must not be
undertaken’,[46]
thus addressing direct engagement in the practice of payment for gametes. This
was comparable to the requirements concerning SET
and donor identification in
that the obligation concerned the treatment which the clinician or clinic was
directly providing. In
contrast the wording concerning surrogacy was both
broader and less clear. Under the heading, ‘Do not undertake or facilitate
commercial surrogacy’, the Guidelines repeated the phrase ‘undertake
or facilitate’ concerning the prohibition of involvement in
pregnancies and in
arrangements.[47] The
2004/2007 commercial surrogacy prohibition was thus understood by many to
include the provision of diagnostic medical care, as
well as referral or
information and advice to a patient who was involved in or planning a paid
surrogacy arrangement abroad.[48] As
will be discussed below the undefined prohibition on ‘facilitation’
appears to have had a major impact upon the differential
treatment of patients
pursuing surrogacy as opposed to egg donation.
The more intense
regulation of doctors within IVF clinics compared to other medical professions,
and vaguer prohibitions on the conduct
of those working within IVF clinics
concerning surrogacy compared to egg donation, correlated strongly—but not
completely—with
patients’ experiences of their health professionals
in the present study. Interviewees reported far more assistance from GPs
than
fertility specialists for surrogacy, and much more extensive involvement from
both groups when it came to egg donation.
How Australian health professionals are engaging with patients undertaking international egg donation and surrogacy
Participants reported the involvement of
Australian health professionals across a range of areas, through:
Referral and information giving
Within
this study direct referral from an Australian health or medical practitioner to
a particular overseas provider was extremely
rare. There were no reported
referrals concerning surrogacy, and only three participants reported that their
fertility doctor specifically
referred them to an overseas provider for egg
donation.
Among the three egg donation referrals, experiences were
varied. Katinka did not follow the referral, preferring to seek out peer
information sources. Shelby found her referral to be a negative experience
because she felt that her local doctor was not giving
her impartial advice about
his ‘mate’ in Greece. Shelby undertook one round of treatment which
she described as chaotic,
with poor communication from the recommended
clinic:
The experience of that week in Greece was pretty awful. We paid the fertility specialist here ... to manage the process, discovered what that meant was he sent them an email telling them I'd be coming and his secretary gave me a photocopy of my file... The [Greek clinic] was like a zoo and we waited five hours for an appointment and when we did get to see him ... He hadn't read anything. He didn't have the file already.
....
The communication was really bad. The information about the drugs that I had to take was really bad... they told me verbally [a] different dosing regime [to the one] in writing and gave me something different. I kept trying to contact them ... about which doses I should be taking and never got return calls. I ended up contacting my specialist back here in Australia who said, “Just take the doses that I told you. Don't worry about the fact that you're not getting contact from them. That's just the way it works. It'll all be fine.”
As a consequence, Shelby left her fertility specialist in Australia and
ceased using the clinic in Greece (although she was very positive
about a second
clinic she subsequently went to in Greece as result of peer recommendations
through the internet). In contrast, Millie
was very happy that the South African
doctor she was referred to had a long-standing professional relationship with
her local fertility
doctor. Millie experienced this as a collaboration in which
there was trust on both sides and improved communication and continuity
of care
as a result.
She knows him very well professionally, so we had that continuity of care so
[my IVF doctor] would talk to him and he could talk to
[her] directly... they
could share information. She knew that I would be well cared for in South
Africa. Conversely [the South African]
doctor knew that I would be well cared
for in Australia when I got back, so there was absolutely no issues with me
going.
General information-giving concerning overseas egg donation was
commonly reported as volunteered by, rather than solicited from, fertility
professionals. Multiple participants noted that in the process of undertaking
IVF in Australia, their fertility doctors, nurses,
and embryologists
‘suggested’ or mentioned egg donation overseas as their ‘best
option’. This was general
information rather than a specific referral as
the following quotes make clear.
[My fertility doctor] straight up [said] that you can go to various clinics
overseas, because the waiting lists are very, very long.
You basically never get
to the end of it.... She suggested to me three countries at that stage. (Leah,
egg donation, Greece)
Actually an IVF doctor said to me, I think you should look at other
countries... he said I think you need to look abroad. South Africa
is an option.
(Amanda, egg donation, South Africa)
[My IVF doctor] said to us that our best chance was to do it overseas because
the quantity of available, and quality [of Australian]
donors was not very high.
.... So he let me know the four countries that had the best progress and then
basically said go and do
the research. So he said the US, Greece, South Africa
and Spain. (Cassandra, egg donation, Greece)
Notably, no participant
reported a negative response from their fertility doctor or other health
professional concerning overseas
egg donation. Some, such as Rosalind who
undertook egg donation in Greece, said that her local fertility clinic nurses
and counsellors
were keen for knowledge about her treatment abroad as they saw
it as ‘another option’ for their patients who were unsuccessful
in
Australia. When Zara, who had unsuccessfully undertaken egg donation with two
separate known egg donors in Australia, both of
whom were in their 30s, told her
clinic staff that she was going to South Africa the embryologist wished her well
‘and also
said, “choose someone young”.’
In
contrast to egg donation, when patients initiated discussions about overseas
surrogacy with fertility specialists they were generally
met with responses
which they described as hostile or discouraging. These findings align with the
responses in a survey study by
Hammarberg et al of 249 Australians who had
undertaken or planned to pursue paid surrogacy overseas. They found that few
sought information
from a local general practitioner or IVF clinic and those who
did reported that IVF clinic staff were significantly more likely than
other
groups to express negative reactions
.[49]
Gerry,
who ultimately undertook surrogacy in Canada, said that when he called
Australian IVF clinics seeking information, ‘they
just wanted to terminate
the conversation very quickly.’ Jody, who undertook surrogacy in the USA,
stated similarly of her
Australian IVF clinic,
as soon as you say the word surrogacy they just kind of shut you down. Even one of the nurses who I became quite friendly with, she said “do not say that word in our offices.”
Dian, who was born without a uterus, characterised this as the
‘door just shutting’ when she tried to raise the topic
with her
fertility specialist. This meant that Dian travelled to India to attempt
surrogacy with her own eggs without having had
a thorough preliminary
investigation into her fertility. After three weeks in India Dian’s eggs
were retrieved and found to
be unusable, and her hormone levels indicated that
any further attempt was very unlikely to succeed.
Cheryl also undertook surrogacy in India with own eggs and said:
[My doctor] ... was very against offshore surrogacy. I mentioned it to her
just to get her idea and she said ‘oh that's terrible.
These are women
that are terribly exploited and you'll go over there and you'll get a disease
and you'll be in some terrible baby
factory and what not’. Anyway, she
said those things and then I just shut down that dialogue with
her.
Notwithstanding this negative response and the subsequent breakdown
of her therapeutic relationship with her fertility specialist,
it is notable
that Cheryl was the one intended parent undertaking surrogacy in India to insist
upon SET, based upon her own prior
experience of IVF in Australia:
[E]very doctor here [in Australia] is so, so adamant that you should only
transfer one. Twins are not - twins are something that you
want to avoid if you
can, if you have a choice about that. (Cheryl, surrogacy,
India)
Hammarberg et al note that, ‘health professionals have a
duty of care to people who seek their advice’ and argue that
doctors must
be able to provide ‘objective and comprehensive information about all
aspects of surrogacy’.[50] The
example of Cheryl above demonstrates that even in a situation where a doctor
believes the overseas treatment to be unsafe or
unethical, their specialist
knowledge and advice may still be instrumental in preventing or minimising harm
to reproductive contributors,
their patient and any subsequent child.
Informed consent in overseas treatment requires a good understanding of
both clinical and ethical (or psycho-social) dimensions of
treatment abroad, and
how this compares to local treatment. The experience of participants
demonstrates limited involvement of Australian
health professionals in
information-giving practices about CBRC. Very few participants reported
receiving specific advice from their
local medical practitioner about risks
commonly associated with overseas treatment, such as multiple embryo transfer or
ovarian hyper
stimulation. Jane and Alice (discussed below), both undertook
surrogacy in India using their own eggs, and reported experiencing
ovarian hyper
stimulation. The incidence of ovarian hyper stimulation in overseas treatment
cannot be known. This is because for
most participants, ovarian hyper
stimulation was a risk faced by their egg donor rather than themselves (as only
the women undertaking
surrogacy with their own eggs were themselves undertaking
a full stimulated cycle of IVF). When participants utilising an egg donor
were
asked whether they had any concerns about clinical risks to the donor, they
typically responded that it was ‘very safe’,
because the clinic in
the destination country had assured them that this was so. However, some also
reported results which could
be interpreted as indicating hyper stimulation,
such as 40 eggs being retrieved in a single cycle. Tom, who undertook surrogacy
in
India with a Ukrainian egg donor, only discovered years later when seeking
out his egg donor for another pregnancy attempt that she
had been overstimulated
and was dangerously unwell following her original treatment.
It was also
apparent that most participants had not received targeted counselling or
information about donor conception. Within Australian
IVF treatment counselling
is generally voluntary for those utilising their own gametes but mandatory if
donor gametes are used or
surrogacy is involved. As only a handful of
participants had undertaken domestic treatment with donated gametes prior to
travel,
the great majority of participants had not undertaken
‘implications counselling’ about gamete donation (which generally
includes information on disclosure to the
child, how identifying information is
stored and how and when it may be accessed) within
Australia.[51] No participant
reported being offered such counselling as part of their overseas
treatment.[52]
As noted
above, while a small number of interviewees stated that they preferred or sought
anonymity in a donor, most simply accepted
the prevailing regime in the country
of treatment and, arguably, had not been assisted or encouraged to consider the
issue in any
depth. Therese, who was pregnant at the time of interview,
following four rounds of egg donation in Spain, said:
If the child wants to know, I can't help it, we made a decision and it was
our decision, it is shitty for them if it's not what they
think would be the
right decision, but we actually didn’t feel like we had many choices. I
didn’t want to pick the kid
with the small tidy ears, I just wanted a
baby.
Dina, who received both donor egg and donor sperm in treatment in
Greece, and at the time of the interview had a seven year old son,
would have
preferred identity release donors as well as more information on the donors:
I didn’t get any photos. That's the issue I've got now, that there was
nothing identifying for my child, for my son, to be able
to relate
to.
Shelby had a three year old son from egg donation in Greece, and was
pregnant with another child from the same donor at the time of
interview.
Although she stated that she preferred an anonymous donor, Shelby nonetheless
expressed ambivalence about this outcome:
It would have been - it would be nice for Thomas to have the option to send something over there and say you know what, I'd kind of like to get in touch with you and if she's open to that then she could be contacted. That option doesn't exist in Greece. It's just ─ the anonymity is rock solid. There's no indication that that's going to change. Maybe it will in 20 years but certainly at the moment that's just not an option that Thomas is ever going to have. I'm sad for him that he doesn't have that because I'd like him to be able to choose if he wanted to...
Then - I don't know. On the one hand it's easier for us to say, “I'm
sorry baby but in Greece they just don't allow you to
contact so it's a little
bit out of our hands.”
Several participants appeared to have a poor
understanding of the rules governing donor identity disclosure in the
jurisdiction of
treatment. A number of interviewees did not believe that
anonymity laws would prevent them from later accessing the donor’s
identifying information should they or their child wish to. Cassandra, who had a
young son from egg donation in Greece and was still
trying for another pregnancy
with the same donor, described anonymity as ‘one of the downsides of doing
it in another country’,
adding:
So if Andrew at some point wanted to better understand his genetic
background, then there wouldn't be much opportunity like at this
point of time.
So whether the Australian Government can help facilitate some of that in the
future, I don't know.
Madeline, who acknowledged that she chose an
anonymous egg donor in the USA out of preference noted, similarly to Shelby,
that ‘on
the flip side’ it was a ‘worry’ that her son
‘will probably never be able to – if he wants to find
her,
he’ll probably never be able to’, but then went on to add that she
would be ‘fully supportive if he wants
to try and look for her.’ Of
some concern is the fact that three parents mentioned that they had identified,
or intended to
identify, the egg donor despite legal regimes which guaranteed
her anonymity. Two intended parents in surrogacy arrangements, in
Mexico and the
USA, respectively had utilised details about the donor to identify her through
Facebook, although they had not made
any contact at the time of the interview.
Likewise a woman who had undertaken treatment in the USA which involved donated
gametes
stated that she wasn’t ‘stuck with the decision’
because ‘with a bit of effort’ she could probably
track down the egg
donor by using Google image matching, along with an adult photo of the donor and
her educational history.
I suggest that the above discussion indicates
that the lack of specific counselling and information about donor conception
issues
may be detrimental to some patients, in that they were not fully prepared
for, or aware of, overseas restrictions on access to identifying
information.
Moreover, if patients seek to identify and contact donors in the future without
their consent and without any form of
professional intermediation or support,
this could potentially be quite problematic.
Diagnostic
work
Three women, Carys, Beth and Rina, each of whom had no uterus,
reported assistance from gynaecologists in assessing their potential
fertility
in order to pursue surrogacy with their own eggs. Notably all of these doctors
were approached as OB/GYNs in private practice,
not as fertility specialists
working within the setting of an IVF clinic.
In contrast, Alice, who
also had no uterus, approached an IVF clinic because at 37 she was worried about
declining fertility - and
so in addition to diagnostic work she wanted to
explore freezing eggs or embryos in advance of local or international surrogacy.
The doctor at the IVF clinic not only refused to treat her (as was required by
the law of that state)[53], but also
refused to undertake any fertility investigations, unless she had a domestic
surrogacy agreement in place. Alice said the
she felt that she was ‘forced
offshore’ where she did a ‘horrendous [IVF cycle] in India, I was
over-stimulated
and very ill.’
I had no idea what to compare it to either, because I'd never had IVF
before. So I wasn't aware of how much of the injections I should
have been
having, what was safe, anything like that. ... We didn't really question
anything either, we just trusted that these
guys are professionals, we'd had
friends that had used the same organisation and had successful pregnancy ... So
just went in trusting
everything and not questioning.... I learned afterwards
about how dangerous being over-stimulated can be. It could have ruined all
our
chances for this to happen. So after the surgery... the egg pick up - I had to
stay there for another 12 hours ... on a drip
to try and calm the ovaries right
down and then keep going back every day or every second day to have an
intravenous drip with some
hormone in it to try and settle everything down. I
suffered a lot of pain and swelling and horrendous headaches and mood swings.
Every side effect you can think of, I had. Then had to fly all the way back to
Australia. But at the time, I just thought, “Oh
well, this must be how
some people react to it all”...It wasn't until I did the Australian round
of IVF [for a subsequent domestic
surrogacy arrangement] that I realized ...
Women undertaking egg donation overseas reported freely accessing the
services of fertility specialists within IVF clinics for a range
of diagnostic
work, in addition to support from their GPs and specialist gynaecologists not
associated with IVF clinics. Two USA
clinics which were utilised by four
participants for egg and embryo donation had exacting protocols requiring
prospective patients
to undertake a range of tests (including mammogram, chest
x-ray and sono-hystogram and a full ‘uterine evaluation cycle’
with
the medication); all four interviewees reported the assistance of their
fertility doctors as well as GPs in this process. Among
those seeking egg
donation abroad, three women reported that diagnostic tests requested by the
overseas provider resulted in finding
previously undiagnosed issues, (polyps,
fibroids and a blocked fallopian tube), which were then treated by their local
specialist
prior to travel. Having these previously undiagnosed issues
discovered and treated within Australia by their existing doctors was
clearly
beneficial to the on-going health of these women, regardless of the reproductive
outcome.
For Carole, who undertook embryo donation in the USA, the line
between diagnosis and preparatory treatment was complex to navigate:
I could get the [diagnosis and treatment] procedure done in Western
Australia, but it couldn't be under the care of somebody who was helping me
to get pregnant ... So I had to just go to my GP and I had to get a
referral. She understood what was going on. But I had to get a referral to a
gynecologist surgeon ... for... a couple of those procedures. She did the
procedure and she knew what was going on, but neither of
them were helping me to
get pregnant and working directly with [the US clinic]. I was the one who had to
get the instructions from
[the US] and then go to my doctor about it. I couldn't
go through ... the IVF clinic. And I had to go through the same process to
organise all of my medication and my ultrasound through independent service
providers that were not IVF clinics. The IVF clinics
are ... not allowed to ...
help me to get pregnant using donor embryos. But they - and I spoke to them
directly, but they were clearly
able to see me after I was pregnant and help me
then, but only then.
This situation was particularly difficult for Carole
as she knew another recipient, travelling from a different Australian state to
utilise the same overseas provider, who was being fully assisted by her local
IVF clinic.
Gay men undertaking surrogacy abroad were differently
situated from most female participants in that they had not undertaken IVF,
had
no pre-existing relationships with Australian fertility professionals, and were
not going to be a patient in the treatment abroad.
A number of gay men reported
that they had no contact at all with local medical professionals in advance of
undertaking surrogacy
overseas. Derrick said, ‘I didn't seek out any
medical information because it wasn't relevant I think to my situation’
(surrogacy, USA). Nonetheless, three gay male interviewees reported that they
undertook blood tests and semen analysis in Australia
at the request of overseas
providers, with the assistance of their GP who wrote the referrals, in order to
pursue surrogacy in India,
Thailand and Mexico respectively. Gabriel described
his GP as ‘very helpful and very nice and friendly’ but lacking
expertise
on the ‘actual nitty gritty of what's going on.’ A lack of
experience with Australian IVF professionals meant that male
travellers were
generally less well informed of the risks of multiple embryo transfer in
comparison to female interviewees. For example
Tom, who undertook surrogacy in
India, saw nothing unusual about having four embryos transferred into the
surrogate in one attempt.
Preparatory Treatment
For women undertaking surrogacy with their own eggs, if preparatory IVF
treatment within Australia included egg collection (such that
the eggs or
embryos were then transported overseas, rather than the woman undertaking IVF
treatment aboard), this would offer advantages
of safety, comfort and continuity
of care to the patient. Such treatment is clearly prohibited by the 2004/2007
and subsequent 2017
NHMRC Guidelines if it is part of a commercial surrogacy
agreement. Two participants, Beth and Rina, reported that they did exactly
this,
for surrogacy in the USA and Canada respectively, with the strong support of
their Australian fertility doctors. Beth was able
to do so because her treatment
pre-dated the 2004 introduction of the Ethical Guidelines; Rina because her
clinic ethics committee
and her jurisdictional regulator assessed her Canadian
surrogacy arrangement as ‘non-commercial.’
Beth and Rina were
very much exceptions. Jody couldn’t sustain a pregnancy and was trying to
use her own eggs for surrogacy,
but also had a diagnosed genetic issue such that
she needed to undertake PGD on the embryos:
So we thought I'll do the IVF in Australia and we'll ship the embryos to
India - but most of the IVF - well pretty much all of them
bar one or two
doctors won't have a bar of that here in Australia... Anyway, we found a doctor
that said I will help you ─
a doctor that we'd used prior and she said
“but I won't entertain any country but America. I'll help you ship the
embryos
over there.”
Other women who sought much lower levels of
assistance from fertility doctors, primarily monitoring and medication in
advance of egg
collection to be undertaken overseas for surrogacy, received
short shrift. Jane had already undertaken one unsuccessful surrogacy
attempt in
India with her own eggs when she approached an Australian fertility specialist
in an IVF clinic to assist her with the
preparatory treatment for a second
attempt:
So I went in and had an appointment with this lady and I talked to her about,
could I start the process off here. Because I'd already
done it once in India,
but I didn't want to go back for the full three weeks and leave my family. She
was absolutely horrified...
She was supposed to be a pro surrogacy IVF doctor,
and she said she had helped people with surrogacy before through America. But
when it came to India, she was very against it.... I was so horrified by what
she'd said and so shocked.
Interestingly the above quotes from Jody and
Jane suggest that some fertility specialists working within IVF clinics
were prepared to breach prohibitions on facilitating commercial surrogacy when
undertaken
in the USA, as it was regarded as a safer and more ethical
destination than India.[54] However
for most clinicians, the refusal was a blanket one. Imogen was attempting
surrogacy in the USA with her own eggs and had
received her preparatory
medications directly from the overseas doctor, but still needed a local
Australian doctor to monitor her
response to the medication in advance of the
travel. Such monitoring is important to plan the pregnancy attempt but also to
prevent
complications and adverse events such as ovarian hyper stimulation.
That was really awkward, and really weird, because ... I managed to get an appointment with [a doctor at an IVF clinic] and she basically said to me, “look, don't tell anybody that I'm doing this for you. We're not allowed to do it, and I don't - don't tell anybody. We're not allowed to do it. I don't like what you're doing. But you're here now, so let's have a look.” She was not impressed with the whole surrogacy... we didn't talk a lot about it because I was there for 10 minutes. ... I didn't go back to her because I thought: that's completely crazy.
...
I literally went walking down [a suburban main street] going, “I'm sure
there's got to be somebody here with an ultrasound wand
who could do
this.” ... All I needed was somebody to be able to give me a film of what
all the follicles looked like so that
I could scan it and send it. ... I went to
[an out of hours' medical clinic].... They don't care who you are. They just do
whatever.
So I said to the guy, “look, I desperately need an ultrasound,
blah, blah, blah”... then he said, “well, you can
try these three
[ultrasound services]”, and ... [one] took [the referral] and he did it,
and it was done.
Carys, who was undertaking surrogacy with her own eggs
in the USA, had a GP who assisted the process. The GP wrote referrals for
ultrasounds
and prescriptions under the direction of the overseas doctor, to
prepare Carys for egg retrieval in the USA, and then again with
follow up scans
and blood tests afterwards, directed by, and sent to, the overseas doctor. Carys
reported that it was she who communicated
all of this information back and
forth, to the extent that the ultrasound practice put all of the scans on a USB
so that she could
send them directly to her US doctor.
Among the egg
donation cohort, local medical assistance was much easier to come by, both from
GPs and from doctors within IVF clinics.
Therese, Katinka and Cassandra all
characterised their need for preparatory treatment as simply
‘getting’ their Australian
doctor to write scripts or referrals. In
Katinka’s words:
I just rocked into a GP and said, this is what I'm doing and this is what I
need. I want you to write me a script for X, Y and Z and
give me a form for this
ultrasound. The GP did that without any issue at all - whereas ... some
fertility specialists ... they perceive
it as them helping us break the law if
they actually enable that...
Rosalind and Cassandra undertook egg
donation in Greece, Therese in Spain, Madeline and Tasha did so in the USA,
Helen in South Africa
and Nerida undertook embryo donation in the USA and egg
donation in South Africa in different attempts. All seven reported that their
Australian fertility doctor and IVF clinic assisted them with ‘before
care’ including the provision of medication, monitoring
through ultrasound
scans and blood tests, and then follow up with pregnancy tests and monitoring,
such as the seven week foetal heartbeat
scan, upon return. Interviewees reported
this assistance as supporting them in a process which they were
‘driving’. As
discussed below this contributed to continuity of
care, but did not always guarantee it.
Follow up Treatment
Three participants reported early miscarriages following egg donation
abroad. This was a difficult and isolating experience in which
the absence of
local follow-up care was acutely felt. Leah stated of her experience after
returning from Greece, ‘there was
no follow up, there was no ultrasound,
there was no nothing. So we actually don’t know what happened.’ Leah
changed to
a different IVF clinic in Greece following her experience and
characterised herself as ‘cutting out the middle man’ when
she
stopped seeing her Australian IVF doctor. However, Leah was in need of further
medical care as her periods stopped altogether
following the cycle in which she
miscarried. She stated that her new Greek fertility doctor, whom she had only
consulted with via
Skype, was treating her for this complication:
He tells me what I need. He writes it down for me. I take it to my GP who's fully aware of my journey ... so I just have to make sure that he's written down for me the correct spelling of the medication that I need, what it's for. Then I just tell him a little bit about the background as to why we're doing it and then he'll write me an Australian script for it, so that's how we're coordinating it at the moment. Yeah, he's supporting me through it because I think he understands what a terrible tough time I went through last time.
Conversely, Therese who was pregnant upon return to Australia from Spain,
did not return the follow up phone calls from her Spanish
clinic:
I just hid for them because I thought if I miscarry in two weeks' time, I
really didn't want them to be able to use my data as a positive
pregnancy test.
Then I did finally get back to them and say, “We've had a 10-week scan
[through her Australian IVF clinic],
and looking good.” They haven't been
in touch since, so tick box, job done.
While several of the egg donation
cohort reported follow up care from their Australian IVF provider upon return,
there were gaps in
cover. After overseas treatment, Olivia’s Australian
fertility doctor undertook follow up blood tests and a foetal heartbeat
scan but
she was unsure about who to turn to at that juncture:
... it's quite confusing when you get back because you've never kind of got
the continuity of care which is quite hard. So I'm still
in contact with the
nurse coordinator in the US and emailing her to tell her what's happening.
The real danger that lack of continuity of care poses to patient safety
is exemplified by Madeline’s experience. Madeline undertook
egg donation
in the USA and returned home to Australia; her ectopic pregnancy was only
diagnosed because she sought further investigation
from her GP after blood
results showed that her hormones were not rising as they should have with a
positive pregnancy result:
I was a little bit disappointed with the care I received from both [the US]
and the doctor here because there seemed to be a bit of
- to us there seemed to
be a bit of a battle between who was right. The [fertility] doctor here wouldn't
do an ultrasound on me because
it was ... less than six weeks, so it would have
been very difficult to see anything. However ... I just wanted to make sure
that,
well I just wanted to identify where exactly the embryo was. I was clearly
pregnant but I wasn't - there was a problem. So I didn't
want to end up a
situation where I would be in emergency and have some doctor perform surgery on
me and run the risk of never being
able to carry a child. I know that sounds
quite dramatic but I wanted it to be on my terms. So I went to my GP who sent me
straight
away for an ultrasound at which time they confirmed that there was
nothing in the uterus but they could see a mass in one of my tubes.
So she then
referred me to a [different] gynecologist and he did the surgery the following
day.
In sum, patient reports demonstrate a fragmented and bewildering
medical landscape in Australia, in which their ability to access
the care and
expertise varied markedly depending upon the kind of treatment they were seeking
abroad, their state of residence, and
the mode of practice of the Australian
doctor. It is important to recollect that overseas surrogacy and egg donation
breach Australian
laws and ethical principles for exactly the same reasons:
because they involve payment to contributors and (frequently but not always)
the
use of unidentifiable gamete providers. Yet those seeking egg donation were
offered information and received a wide range of
diagnostic and preparatory
treatments in many but not all Australian states, while those seeking surrogacy
were shunned, chided and
offered limited (and sometimes covert) assistance.
This strikingly differential response both as between the kinds of
treatment sought abroad, and in the sites of local assistance—with
specialists outside IVF clinics considerably more willing to engage than those
within them—is almost certainly an outcome of
wording of the 2004/7
national Ethical Guidelines. As noted those Guidelines contained broader and
vaguer prohibitions on IVF clinics
engaging with commercial surrogacy compared
to egg donation, and do not apply to practitioners outside of IVF clinics. It
thus appears
that the Guidelines, while trying to promote ethical practice in
assisted reproduction in Australia, have generated a perverse outcome
for
Australians engaged in CBRC in that they actively drove patients away from
specialist local expertise. This reduced the ability
of some patients to engage
in informed decision-making in dialogue with their local doctor and also reduced
patients’ ability
to access diagnostic or preparatory treatment within
Australia. In turn this meant prolonging their treatment abroad and potentially
increased their exposure to less safe treatment practices such as
hyper-stimulation. GPs were notably more willing to assist but
this was usually
limited to following the directions of an overseas practitioner to generate
scripts and tests, rather than offering
specialist input on risks.
Even
when some form of domestic treatment was available, and in instances
where it was undertaken under the direction of the overseas practitioner such
that it arguably came
within the notion of collaborative care raised in the
introduction, such care was fragmented. Only a handful of participants reported
that their local medical records were provided to overseas practitioners.
Notably, most patients reported that treatment instructions
were not
communicated directly between their doctor abroad and their Australian doctor,
but were rather transmitted through themselves.
The patient herself often took
emailed instructions from the overseas doctor to a local consultation, or
physically collected test
results and emailed them directly back to the overseas
doctor. These practices highlight a series of ‘Chinese walls’
through which local practitioners appear to be seeking to protect themselves
from allegations of impropriety whilst continuing to
provide some form of
on-going care for their patients.
Is there scope in Australia for developing continuity of care as a harm reduction strategy in CBRC?
In 2017 substantially revised Ethical Guidelines
on assisted reproductive treatment were released. For the first time, the
Guidelines
include a number of specific provisions on CBRC. The amorphous
language of ‘facilitation’ was removed from the provision
on
commercial surrogacy which was clarified as follows:
8.8.1 Clinics and clinicians must not practise, promote or recommend
commercial surrogacy, nor enter into contractual arrangements with
commercial surrogacy providers. (emphasis added)
Recollecting that the
Guidelines prohibit trading in gametes as well as anonymous gamete donation,
they also provide:
4.2.7 Clinics and clinicians must not promote or recommend practices which
contravene these Ethical Guidelines or Australian legislation, nor enter
into contractual arrangements with overseas providers who offer such practices.
(emphasis added)
It would appear from these provisions that both direct
referral and general information giving about surrogacy and egg donation (such
as the commonly reported practice of ‘suggesting’ a country for
donor eggs noted above) are now prohibited alike.
The new provisions
for the first time include clear guidance on information giving about treatment
risks and standards.
4.2.8 Clinics approached by an individual or a couple for advice on undertaking ART overseas have an ethical obligation to advise the individual or couple of any concerns about the standard of care in the overseas clinic or acknowledge where the standard of care is unknown.
4.2.9 Where an individual or couple has made an autonomous decision to seek
ART overseas, clinics may provide information aimed at the reduction of
harm to the intended parent(s) and the person who would be born. This may
include advice aimed at reducing the likelihood of ovarian hyperstimulation,
the
promotion of single embryo transfer and supporting the right of persons born
from donated gametes or embryos to know the details
of their genetic origins.
(emphasis added)
These provisions are broadly in accord with the first
recommendation in the RANZCOG Position Statement on CBRC, and represent a
significant
improvement in that they explicitly state that a clinician can
contribute to their patient’s informed decision-making in CBRC
without
falling into ethical breach. This is particularly important, given the findings
of researchers in Australia, and comparable
jurisdictions such as the UK, that
CBRC patients increasingly inform (and misinform) themselves through online peer
forums and may
miss out on crucial advice from specialist
doctors.[55]
However, the
vexed question of the extent to which an IVF doctor may participate in care of
their patient undertaking CBRC (in circumstances
where there is no contractual
arrangement between providers), ie through the collaborative provision of
diagnostic or preparatory
treatment, remains unsettled. The Guidelines
state:
4.2.10 Where an individual or couple has made an autonomous decision to seek ART overseas, a clinician may feel they have an ethical obligation to participate in elements of the treatment of the individual or couple in order to minimise potential harms, however:
• clinicians have no obligation to participate in such treatment ...
• clinicians should be aware of the relevant legislation in the relevant state or territory before participating in the treatment in such circumstances. (emphasis added)
As with the RANZCOG recommendation on CBRC, the National Guidelines
throw the onus back upon the practitioner to ‘be aware’
of
Australian legal restrictions. Recollecting as discussed above that these laws
are a complex matrix of provisions, with extraterritorial
prohibitions
concerning commercial surrogacy in three states and territories, this final dot
point arguably sends fertility health
professionals straight back into confusion
as it does not spell out which ‘elements’ of treatment are
permissible. This
provision also highlights that in the piecemeal Australian
system, reform of any one aspect, such as the Guidelines, is manifestly
insufficient if undertaken alone.
Conclusion
Patient-centred care requires a context in which
a medical practitioner is able to put the health needs of their patient first if
she is contemplating or undertaking treatment abroad, even – perhaps
especially – if such treatment is unlikely to meet
Australian clinical and
ethical standards. To date Australian regulation has arguably hindered rather
than helped the objective of
securing safer outcomes for Australians undertaking
CBRC.
The findings reported here from the experiences of 37 individuals
and couples who undertook surrogacy and egg and embryo donation
abroad
demonstrate that the input of Australian healthcare professionals into their
CBRC treatment was inconsistent, inadequate and
highly fragmented. The
involvement of Australian practitioners generally comprised a limited technical
or clinical aspect of the
overall ‘assemblage’ of medical services
accessed by travelling patients. Patients rarely saw themselves as continuing
under the care of their local practitioner, and even more rarely viewed that
professional as a source of on-going advice or counsel.
Even when
domestic practitioners did retain some involvement with their patient for
diagnostic or preparatory treatment it appeared
that practitioners and patients
tip-toed around fine legal lines. As a result, continuity of care was
compromised because medical
practitioners were not communicating directly.
Information giving and counselling, which could have assisted in informed
decision-making
concerning both clinical and ethical aspects of treatment
abroad, was largely unavailable.
Complications and adverse or
potentially negative outcomes reported by participants included: multiple birth
rates considerably higher
than those occurring in Australia; ovarian hyper
stimulation among participants (and at least one egg donor); amenorrhea;
miscarriages
with no follow up care; and common use of unidentifiable donors
accompanied by a degree of both ambivalence and confusion among a
number of
parents concerning the consequences of anonymity.
This paper argues that
an ethical approach to Australian involvement CBRC must take a patient-centred
approach in order to advance
harm minimisation through enhanced opportunities
for informed consent and continuity of care. This requires a clear and
consistent
legal and ethical framework; one in which health professionals (and
their patients) are able to understand and comply with their
obligations. Such
an approach will mean substantial change and harmonisation of existing legal and
ethical regulation within Australia
so that obligations are consistent across
place of residence of the patient, the kind of treatment sought and the site and
the mode
of practice of the professional.
[♦] Distinguished Professor
of Law, UTS. This research project was conducted with Isabel Karpin and Anita
Stuhmcke, funded through ARC
DP 1510157, and undertaken with UTS Ethics Approval
2015000094. My deep thanks to Isabel, Anita and the journal reviewers for their
comments on earlier versions of this article, to Norman O’Dowd, Rachel
Carr and Michaela Stockey-Bridge for research assistance
on the project, and to
all of the interview participants for sharing their experiences and
thoughts.
[1] Leigh Turner,
‘Transnational Medical Travel: Ethical Dimensions of Global
Healthcare’ (2013) 22(2) Cambridge Quarterly of Healthcare Ethics
170.
[2] Andrea Whittaker,
‘Cross-Border Assisted Reproduction Care in Asia: Implications for Access,
Equity and Regulations’
(2011) 19(37) Reproductive Health Matters
107; Marcia Inhorn and Pasquale Patrizio, ‘The Global Landscape of
Cross-Border Reproductive Care: Twenty Key Findings for
the New
Millennium’ (2012) 24(3) Current Opinion in Obstetrics and
Gynecology 158.
[3] Turner,
above n 1; Leigh Turner, ‘Quality in Health Care and Globalization of
Health Services: Accreditation and Regulatory
Oversight of Medical Tourism
Companies’ (2011) 23(1) International Journal for Quality in Health
Care 1; Valorie Crooks et al, ‘Ethical and Legal Implications of the
Risks of Medical Tourism for Patients: A Qualitative Study
of Canadian Health
and Safety Representatives’ Perspectives’ (2013) 3(2) BMJ
Open e002302.
[4] Johanna
Hanefeld et al, ‘Medical Tourism: A Cost or Benefit to the NHS?’
(2013) 8(10) PLOS ONE e70406; Turner, above n
1.
[5] Jenni Millbank,
‘Responsive Regulation of Cross Border Assisted Reproduction’ (2015)
22 Journal of Law and Medicine 346. Such outcomes are of course also
possible in IVF treatment within domestic systems such as those in Australia,
but are posited
as less likely due to legislation, policy and ethical guidance
which aims to prevent them, discussed below.
[6] Jeremy Snyder et al,
‘“Do Your Homework... and Then Hope for the Best”: The
Challenges That Medical Tourism Poses
to Canadian Family Physicians’
Support of Patients’ Informed Decision-Making’ (2013) 14 (September)
BMC Medical Ethics
37.
[7] Turner, above n 3;
Frances Shenfield et al, ‘ESHRE’s Good Practice Guide for
Cross-Border Reproductive Care for Centers
and Practitioners’ (2011) 26(7)
Human Reproduction 1625; Frances Shenfield et al, ‘Cross Border
Reproductive Care in Six European Countries’ (2010) 25(6) Human
Reproduction 1361.
[8]
Shenfield at al 2010, above n 7, 1626;
Edward Hughes and Deirdre DeJean, ‘Cross-Border Fertility Services in
North America: A Survey of Canadian and American
Providers’ (2010) 94(1)
Fertility and Sterility e16; Wannes Van Hoof, Guido Pennings and Petra De
Sutter, ‘Cross-border Reproductive Care for Law Evasion: Should Physicians
Be Allowed to Help Infertility Patients Evade the Law of Their Own
Country?’ (2016) 202 (July) European Journal of Obstetrics, Gynecology,
and Reproductive Biology 101,
102–103.
[9] Van Hoof
et al, above n 8,
105.
[10] Royal Australian and
New Zealand College of Obstetricians and Gynaecologists, Cross-border
Reproductive Care (2016), 3
<https://www.ranzcog.edu.au/RANZCOG_SITE/media/RANZCOG-MEDIA/Women%27s%20Health/Statement%20and%20guidelines/Clinical%20-%20Gynaecology/Cross-Border-Reproductive-Care-(C-Gyn-36)-New-March-2016.pdf?ext=.pdf>
accessed 5 October 2018.
[11]
Likewise see the US professional association guidelines on CBRC, which assumes
throughout that the home physician is not the treating physician: Ethics
Committee of the American Society for Reproductive Medicine (ASRM),
‘Cross-Border Reproductive
Care: An Ethics Committee Opinion’ (2016)
106(7) Fertility and Sterility 1627,
1631.
[12] National Health
and Medical Research Council, Ethical Guidelines on the Use of Assisted
Reproductive Technology in Clinical Practice and Research (2017) https://www.nhmrc.gov.au/guidelines-publications/e79
accessed 5 October 2018.
[13]
Marcia Inhorn and Zeynep Gürtin, ‘Cross-Border Reproductive Care: A
Future Research Agenda’ (2011) 23(5) Reproductive BioMedicine
Online 665 .
[14]
Shenfield at al, ‘Cross Border Reproductive Care in Six European
Countries’, above n 7,
1364.
[15]
Ibid.
[16] Lorraine Culley et
al, ‘Crossing Borders for Fertility Treatment: Motivations, Destinations
and Outcomes of UK Fertility Travellers’
(2011) 26(9) Human Reproduction
2373, 2376.
[17]
Ibid.
[18] Interviews were
transcribed, anonymised, and entered into NVivo software to enable thematic
coding and analysis. All three investigators
contributed to coding themes and
held multiple meetings to discuss and cross-check coding in order to ensure
consistency of approach.
[19]
This figure does not include five follow-up interviews with patients who had
been very early in their CBRC arrangements at the time
of the original
interview.
[20] These
professionals included: doctors, regulators, lawyers, counsellors, agents and
facilitators. Among the professionals were three
Australians who had also
previously travelled overseas as intended parents to undertake surrogacy. For
analysis of the professionals
see Jenni Millbank, ‘The Role of
Professional Facilitators in Cross Border Assisted Reproduction’ (2018)
Reproductive
BioMedicine & Society Online,
forthcoming.
[21] At the time
of interview, participant’s average age was 42. While interviewees had
travelled for treatment between 11 years
and six months previously, the average
(and median) time since travel was two years.
[22] Among interviewees, 30
had children born as a result of CBRC and a further four participants were
pregnant at the time of interview.
Apart from multiple births, most parents had
only one child through CBRC. Five participants had a subsequent child or
pregnancy through
further overseas treatment at the time of interview, and a
further four parents through overseas surrogacy were still pursuing a
subsequent
surrogacy arrangement at the time of interview. Three other interviewees who had
undertaken CBRC without success later
had children through other means: one
through domestic surrogacy and two through domestic adoption/permanent
placement.
[23] Iolanda
Rodino, Sonja Goedeke and Sarah Nowoweiski, ‘Motivations and Experiences
of Patients Seeking Cross-Border Reproductive
Care: The Australian
and New Zealand Context’ (2014) 102(5) Fertility and Sterility
1422, 1425 ; Author ref; and see similar findings on UK travellers Culley et al,
‘Crossing Borders for Fertility Treatment’,
above n 16.
[24]
Guido Pennings et al, ‘Socio-Demographic and Fertility-Related
Characteristics and Motivations of Oocyte Donors in Eleven European
Countries’ (2014) 29(5) Human Reproduction
1076.
[25] See also findings
from this research that those destinations, and the Czech Republic, were a focal
point of Australian women’s
discussions in a major on-line peer discussion
forum: Stuhmcke et al,
forthcoming.
[26] See eg
Ethics Committee of the American Society for Reproductive Medicine,
‘Cross-Border Reproductive Care: a Committee Opinion’
(2010) 100
Fertility and Sterility
645.
[27] Note that in the
survey study by Rodino et al, a desire to use an anonymous donor was the least
common motivation for travel at 16%:
above n 24, 1425. This is on par with
international data: Shenfield et al above n 7 reported that overall 17.9% of
respondent patients indicated a wish for anonymous donation as a reason for
travel: at 1363; Culley
et al above n 16 at found that only 10% of their 51
participants expressed this desire:
2379.
[28] Oisin Fitzgerald
et al, Assisted Reproductive Technology in Australia and New Zealand 2015
(2017), 50; dual embryo transfer still occurred in 14% of treatment cycles in
2015 but notably dual embryo transfer is lower among egg and embryo
recipients than women undertaking autologous cycles: ibid, 54 and Supplementary
Report, Table S4, 4.
[29]
Aaron Levine et al, ‘Assessing the Use of Assisted Reproductive Technology
in the United States by Non–United States
Residents’ (2017) 108(5)
Fertility and Sterility 815, 818, although notably this was the same for
both local and overseas
patients.
[30] And see Culley
et al on comparable UK experience, ‘Crossing Borders for Fertility
Treatment’, above n 16,
2377.
[31]
Ibid.
[32] Sam Everingham,
Martyn Stafford-Bell and Karin Hammarberg, ‘Australians’ Use of
Surrogacy’ (2014) 201(5) The Medical Journal of Australia 270;
Rodino et al, above n 24, 1425, 1426;
Emily Jackson et al, ‘Learning from Cross-Border Reproduction’ 25(1)
(2017) Medical Law Review 23
.
[33] Jackson et al, above n
33, 24; Everingham et al, above n 33.
[34]
Nitin Lamba et al, ‘The Psychological Well-Being and Prenatal Bonding of
Gestational Surrogates’ (2018) 33(4) Human Reproduction
646.
[35] Kiran Perkins et
al, ‘Trends and Outcomes of Gestational Surrogacy in the United
States’ (2016) 106(2) Fertility and Sterility 435
.
[36] Martyn Stafford-Bell,
Sam Everingham and Karin Hammarberg, ‘Outcomes of Surrogacy Undertaken by
Australians Overseas’
(2014) 201(6) Medical Journal of Australia
330, 331.
[37] National
Health and Medical Research Council, above n 12,
[5.4].
[38] Ibid
65.
[39] While penalties for
individuals previously ranged from fines alone under state and territory law
(see eg Transplantation and Anatomy Act 1978 (ACT) s 44, a $7000 fine) to a
maximum of 6 months imprisonment and/or a $4440 fine (eg Human Tissue Act 1983
(NSW) s 32) – this was increased to a markedly more onerous 15 years
imprisonment under federal law in 2002, and then mirrored through
into state
laws subsequently, as a result of attempts to prevent human cloning and the use
of donated gametes in unlicensed research:
see Prohibition of Human Cloning Act
2002 (Cth) s 21; Prohibition on Human Cloning Act 2008 (Vic) s
17.
[40] Anita Stuhmcke,
‘The Criminal Act of Commercial Surrogacy in Australia: A Call for
Review’ (2011) 18(3) Journal of Law and Medicine 601; Anita
Stuhmcke, ‘The Regulation of Commercial Surrogacy: The Wrong Answers to
the Wrong Questions’ (2015) 23(2) Journal of Law and Medicine 333;
Angela Campbell, Sister Wives, Surrogates and Sex Workers: Outlaws by Choice?
(Ashgate, 2013). Penalties for individuals engaged in commercial surrogacy
range across the states from one to three years’
imprisonment and/or fines
of between $4,000 to
$110,000.
[41] Stuhmcke 2015
above n 41; Jenni Millbank,
‘Rethinking “Commercial” Surrogacy’ (2015) 12 Journal
of Bioethical Inquiry
477
[42] In three Australian
states there is also stand-alone legislative regulation of assisted reproductive
treatment. For the purposes
of this discussion it is important to note that they
add to the confusion outlined above for professionals involved in fertility
treatment because they contain additional obligations, addressing issues such as
supply or export from the jurisdiction, and these vary depending
upon whether the object of regulation—the gamete or embryo—is
defined as formed from donor
gametes or not: see eg Assisted Reproductive
Treatment Act 2008 (Vic) s 36).
[43] Research Involving Human
Embryos Act 2002 (Cth) ss 10,
11.
[44] Reproductive
Technology Accreditation Committee, Code of Practice for Assisted
Reproductive Technology Units (2017) [3.3]
<https://www.fertilitysociety.com.au/wp-content/uploads/2017-RTAC-ANZ-COP-FINAL-1.pdf>
accessed 5 October 2018; also similarly 2015,
2010.
[45] See discussion in
Jenni Millbank, ‘Identity Disclosure and Information Sharing in Donor
Conception Regimes: The Unfulfilled
Potential of Voluntary Registers’
(2014) 28 International Journal of Law, Policy and Family 223; see NHMRC
Guidelines above n 12 and below n 47.
[46]
National Health and Medical Research Council, Guidelines on the Use of
Assisted Reproductive Technology in Clinical Practice and Research (2007)
[6.5]
<https://www.nhmrc.gov.au/guidelines-publications/e78>.
[47]
Ibid [13.1].
[48] See
Millbank above n 5.
[49]
In that study, 26% of participants reported a negative reaction from a doctor in
their IVF clinic, and 29% reported a negative reaction
from a clinic nurse or
counsellor: Karin Hammarberg, Martyn Stafford-Bell and Sam Everingham,
‘Intended Parents’ Motivations
and Information and Support Needs
When Seeking Extraterritorial Compensated Surrogacy’ (2015) 31(5)
Reproductive BioMedicine Online 689,
693.
[50] Ibid
694.
[51] On the legal and
ethical requirements for counselling in Australia see Eloise Chandler et al,
‘Rethinking Consent, Information
Giving and Counselling Concerning Stored
Embryos in IVF treatment’ (2013) 20 Journal of Law and Medicine
759, and current NHMRC Guidelines above n 12 [4.2.3], [4.4.1]; on the content of
such counselling see Australia and NZ Infertility Counsellors Association,
Guidelines for Professional
Standards of Practice (2003) at https://www.fertilitysociety.com.au/wp-content/uploads/Guidelines-for-Professional-Practice.pdf,
accessed 5 October 2018.
[52]
For a discussion on the need to develop such counselling see: Eric Blyth, Petra
Thorn and Tewes Wischmann, ‘CBRC and Psychosocial
Counselling: Assessing
Needs and Developing an Ethical Framework for Practice’ (2011) 23(5)
Reproductive BioMedicine Online
642.
[53] The Australian states
of Victoria, WA and NSW prohibit IVF treatment in pursuance of surrogacy unless
an approved/assessed surrogacy
arrangement has already been entered
into.
[54] One exception was a
male interviewee who reported that his male partner was assisted by an IVF
clinic to retrieve, test, store and
then transport his semen to Mexico for use
in a commercial surrogacy arrangement (so that he did not have to travel at all
to undertake
the arrangement).
[55] Stuhmcke et al forthcoming;
Hammarberg et al, above n 50, 692;
Rodino et al, above n 24, 1429; Jackson
et al, above n 27; Lorraine Culley et al, ‘“What Are You Going to
Do, Confiscate Their Passports?”
Professional Perspectives on Cross-Border
Reproductive Travel’ (2013) 31(1) Journal of Reproductive and Infant
Psychology 46.
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