Australia and Britain have both moved to standardise the transfer of only
one, or at most two, embryos at one time to minimise the chance of multiple
births. More than 120,000 human embryos are now in storage across Australia.
While the majority will be used in future IVF cycles, many thousands will not,
leading to difficult choices for parents. Over the past decade over 20,000
embryos were discarded in the state of Victoria alone as a result of mandatory
storage limits set by law. Last year roughly the same number of embryos were
destroyed as were utilised in treatment in the state of Western Australia.
Each IVF cycle can produce a number of additional embryos which may be
stored at clinics for use in future cycles. Very few, if any, patients envisage
storing these embryos for an extended period of time, but this can sometimes be
the case. This might occur because of spacing of children, a couple being
undecided about whether to have more children, spontaneous pregnancy following
IVF treatment, or inability to agree whether to use the embryos or dispose of
them.
In the Enhancing
Reproductive Opportunity research project in Australia (1), my colleagues and I examined the impact of law, ethical guidelines, and
clinical practices on the decisions that people make about stored embryos.
Unlike most research that is focused upon embryo donation for research, we were
concerned with whether people were able to make the family formation decisions
they desired. Our sole inclusion criterion was that an individual or couple had
engaged in IVF treatment and stored embryos. We drew upon the experience of
over 400 past and present IVF patients in more than 20 clinical sites across
Australia covering matters such as storage limits, use after the death of a
partner and embryo donation for reproduction.
We found that current IVF laws and ethical guidelines on issues such as
storage limits and destruction practices are intrusive and disrespectful.
Policies and practices in modern-day IVF do not do enough to acknowledge the
emotional significance of embryos, particularly to the women who underwent
painful and invasive treatment to create them.
Public debate has often characterised embryos in dichotomised terms, as
either 'mere' cells or as entities of moral significance: 'life' or potential
life. We do not believe that embryos should be granted a moral or legal
significance in and of themselves as distinct entities. Rather, their value is
relational. We concur with Sheryl de Lacey's (2) findings that for
participants, 'embryos were considered part of their family that existed yet
simultaneously did not exist'.
Embryos matter because of what they mean to those for whom they were
generated. This meaning is intensely personal, and infinitely variable. We
advocate, ambitiously, for the development of a framework of law, policy and
practice capable of honouring these diverse meanings as much as is possible.
Government regulation of IVF to date has largely focused on the prohibition
of negative or undesired practices. Our research concludes that we should
radically change the role of external agencies to instead focus upon
facilitation of positive practices. Informed consent should be enabled with
more information, and support services should be provided externally. We
propose a separation of responsibilities between fertility clinics and
government agencies, with key information, advice, support and dispute
resolution services being provided independently of fertility clinics.
Our report contains 57 recommendations for change to laws, policies and
practices around IVF in Australia. Many of these issues have also recently been
or are currently under debate in the UK at this time. Key recommendations
include:
-
A clear 'ready reckoner' outlining options on the storage and disposition
of embryos, accompanied by plain language explanations of their legal effect -
Standard 'exit counselling' at the end of IVF/ time of family completion
-
A standard family limit of ten families per donor
-
On death of a patient, a default rule that decisions on embryos (including
own use) rest with the surviving partner -
Introducing an external information giving and support agency to: undertake
donor recruitment, manage a voluntary donor identity register and facilitate
donor-recipient-offspring contact, including provision of associated
counselling and support services; and an accessible external dispute resolution
body and appeals process -
No compelled destruction of embryos, including as a result of storage
limits -
Patients should decide the manner of destruction of their embryos including
options such as taking them home for their own form of disposal or undertaking 'compassionate'
or non-viable transfer back to the body of the woman -
Greater support for embryo donation for reproduction
Australian states such as Victoria and Western Australia have been the
forerunners in the development of laws that respond to the unique challenges
posed by IVF. In retrospect, many of these laws could be characterised as a
belaboured process of trial and error. More reform in fertility regulation will
undoubtedly occur. It is our firm belief that future reforms need to be much
more carefully informed by people's lived experiences of assisted reproductive
technology.
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