Part B of the Ethical Guidelines on the Use of Assisted
Reproductive Technology in Clinical Practice and
Research, 2007
Name:
Organisation*:
L J Goody Bioethics Centre, Perth WA
*Please only include the name of the organisation here if the submission reflects the views of the organisation
5 Ethical principles for clinical practice of ART
Q2. Do you think that there are gaps in the current ethical guidance in Section
5?
As outlined below, regarding practical implications of the primacy of
the interests and welfare of the person who may be born.
Q3. Should Section 5 recognise the significance of the ‘biological connection’
(e.g. between donor-conceived persons and the donors of gametes,
between donor-conceived persons and their siblings or half-siblings, or
between persons conceived from donated embryos and their genetic
parents) as an additional ethical principle for the clinical practice of ART?
(see also questions in relation to Paragraphs 6.1.1 and 6.1.2 and Section
9.2).
Yes, without doubt. Biological connection is of the utmost
importance in the ‘natural paradigm’ (see below), and I submit that
the Guidelines should be strengthened to reflect this.
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Specific Questions
Section 5.1
Q5. Is more guidance needed on what constitutes the ‘welfare of those
involved’?
I believe that this is the biggest single lacuna in the current Guidelines.
Currently Part B of the Guidelines begins by stating a principle that
“Clinical decisions must respect, primarily, the interests and welfare of
persons who may be born . . .” – but the Guidelines then proceed to
address primarily the interests of the adult participants in ART
procedures. In saying this I also note that the law has also found it
difficult to determine exactly what should be taken into consideration in
assessing the ‘interests and welfare’ of children who may or may not
ever exist.
In response I submit that there is a ‘natural paradigm’ – a natural pattern
of interests inherent in the biological, psychological and social orders
within which children are normally conceived, born and raised – which
can shed light on this question. My submission proposes that the
natural paradigm is the best pattern for healthy human development in
all of its physical, social, emotional, psychological and spiritual
dimensions - a proposition which would merit further exploration if
space permitted.
In the ‘natural paradigm’ a child is conceived by two adults who not only
provide the gametes required but who also intend to care for the child
through pregnancy, delivery, and early life through to adulthood. The
child is carried to term by its natural mother, and is born to its natural
parents whose ongoing personal relationship with the child provides the
child with a sense of identity, security, social and psychosocial balance,
over and above the material necessities of life. Because these
relationships provide so much more than merely material support for
the child the natural paradigm, it will be noted, refers to the whole of a
person’s life considered more widely: physical, social, psychological,
relational, intellectual, and even spiritual.
It is a contention of this submission that the Guidelines do not currently
pay enough attention to this wider context of the child’s life. ART
processes may substitute for some elements of the natural paradigm
(namely the processes of conception and nurture of the embryo through
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to implantation) but then nature resumes its natural course. I submit
that social or other regulation of processes around ART should mimic
the natural paradigm as closely as possible in as many aspects as
possible, and vary from it only when necessary and as far as necessary.
These variations are by definition not normative, so the Guidelines
should seek to control and minimise their potential to put at risk the
interests and welfare of children who may be born.
In summary: in regulating the clinical practice of ART the Guidelines
should more clearly identify practices which are to be preferred because
they closely mimic the natural paradigm, and practices which should be
prohibited because they wander unnecessarily far from the natural
paradigm. Below I refer to this general rule as ‘the principle of the
natural paradigm’.
Section 5.2
Q7. Should there be a mandatory requirement for clinics to have policies and
procedures around embryos which are excess to the requirements of
patients?
Yes. If there is indeed a ‘very widely shared view . . . that embryos
warrant very serious moral consideration’ (5.2) then clinics should be
required to have very clear policies around the destination of embryos
that are excess to a couple’s reproductive requirements – specifically, a
clear hierarchy prioritising donation to another couple over any other
future use. This option most closely mimics the natural paradigm, eg in
the case of adoption.
Section 5.3
Q8. Paragraph 5.3.1 – Should financial transparency be included in this list of
protocols?
Yes – see comments on 6.7 below.
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6 Use of gametes in reproductive treatment programs
Specific Questions
Section 6.1 (see also Section 7.1)
Q11. Should there be a standard way that data is collected and stored to
facilitate linkage?
o If so, how?
o Should this guidance be included in the ART guidelines?
Definitely. Other questions around linkage should also be considered,
eg whether the usual presumption that ‘stored data will not be used
without consent’ should apply, or whether the contrary presumption
should be established: that stored data will almost certainly be used for
research purposes.
Q13. Does the statement in Paragraph 6.1.2 need to be strengthened? (see
also questions in relation to Section 5 and Section 9.2)
o If so, in what ways?
I submit that the whole guidance on ‘biological relationship’ should be
strengthened in line with the principle of the natural paradigm as noted
above.
Implicit in almost all ART procedures is the principle that it is better for a
child to have a biological relationship with its birth parents – hence
most couples try to use their own gametes before contemplating use of
donated material. Logical extension of this principle would shift
presumptions about ‘the child’s right to know’ from guidance which
protects donor anonymity (by the release of only basic personal
information), to guidance which protects the child’s right to any and all
information held by clinics in relation to their gamete donor/s.
Apropos of which, I submit that ‘double donation’ – ie creation of
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embryos using both donated ova and donated sperm – should be
avoided at all costs. If biological relationship means anything, it must
mean that the child has some inherent right to not only information
about its gamete donor/s, but also actual biological relationship with the
adults who will raise this child (in line with the principle of the natural
paradigm).
The only exception to this should be donation of excess embryos to
couples who cannot create embryos of their own, which again mimics
the natural paradigm (eg adoption). When there are several such
embryos donated, the recipient couple have the chance of having
children who are at least biologically related to each other, even if not to
their ‘parents’. This preserves an important element in the natural
paradigm.
Section 6.2 (also relevant to donated embryos)
Q17. Should there be an age limit for female recipients of gamete or embryo
donation?
o If so, what do you think this age limit should be?
Clinics should be required to make decisions about a woman’s
suitability to receive a donated embryo – and indeed to participate in
ART at all – based on a clinical judgment around the cause of infertility.
Specifically, if infertility is probably due to age (which must be a clinical
judgment), the principle of the natural paradigm would suggest that she
should not be eligible for the treatment at all.
Implicit in this submission is the proposition that ART should always be
intended to alleviate a genuine medical condition or pathology (however
infertility is portrayed), and not be reduced to purely elective status.
Section 6.3
Q18. Is more guidance required to enable clinics to take all reasonable steps
to reduce the numbers of genetic relatives created through donor
gamete programs? What guidance do you recommend?
The principle of the natural paradigm would suggest yes: just as in
natural families there is normally only a small number of siblings.
Hence I support the five-family rule as a maximum boundary, given that
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donation to five families may result in only seven or eight siblings.
Section 6.4
Q19. Should paragraph 6.4.1 be revised?
o If so, how?
No.
Section 6.5
Q20. In view of developments in other countries allowing women to receive
compensation above medical and travelling expenses for donating eggs,
should it be permissible for Australian women to also be compensated
for the reproductive effort and risks associated with donating their eggs?
(See also Section 13 Surrogacy)
The principle of the natural paradigm would strongly suggest a negative
answer. Any proposal to move toward financial remuneration for gamete
donation should be strongly resisted, as this shifts the whole dynamic of
ART toward a commercial basis. This runs quite contrary to the natural
paradigm, and indeed the pattern of non-elective medical practice, as it
risks commodification of both gametes and embryos.
Q21. Should more guidance be given about the reimbursement of legitimate
expenses? What guidance would you recommend?
Reimbursement of legitimate expenses actually incurred seems a
reasonable position to take. Reimbursement should only be made on
presentation of receipts for expenses actually incurred. See also
comments below on surrogacy.
Section 6.7 (see also Section 7.5)
Q22. Are there any specific relationships that give rise to particular concerns
between donor and recipient that should be included in the guidelines?
e.g. egg or embryo donation from a daughter to her mother.
In line with the principle of the natural paradigm, I would not support
any donations which risk generational confusion, such as the motherdaughter egg donation outlined, or a father donating sperm to his sonin-law.
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Section 6.15 (see also Section 8.4)
Q30. Should restrictions on posthumous donation require written expressed
direction from the donor or should the requirements allow less explicit
and/or implied expressions?
I submit that if posthumous use of gametes is to be permitted, then only
the most stringent standard of consent should apply: written, witnessed,
and absolutely clear in every respect.
Having said that, I have sat on WA’s Reproductive Technology Council
for 13 years so far; we have discussed the question of posthumous
collection and use of gametes since 2006. I am firmly of the view that
the posthumous collection and use of gametes for reproductive
purposes should be specifically prohibited. [NHMRC has removed thirdparty information]
The principle of the natural paradigm suggests that there are no
circumstances which would objectively justify the collection of gametes
from a dead or dying person with a view to later creation of embryos and
even later use of these embryos for reproductive purposes. As the
introductory paragraph to 6.15 says, it is tragic when a child is born after
the death of their natural parent; a fortiori it is seriously wrong that a
child should be conceived long after the death of their parent, and it
would be a serious injustice if our legal system were to facilitate such a
wrong.
In my view this question probably represents the most serious deviation
from the natural paradigm. My preferred position therefore is that no
consent to posthumous collection or use of gametes should be
authorised. But see also the following response.
Q31. Is it acceptable to take donations from dying or deceased persons?
o If so, under what circumstances?
o Should this rely on prior consent?
In keeping with the previous response, I submit that this is never
ethically acceptable. However, if there is not the political will to
explicitly prohibit these practices, then the conditions noted in 6.15
should be an absolute minimum. Further, consent should be in writing,
witnessed, and absolutely clear in every respect. I do not believe that in
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such a serious matter merely implied or verbal consent should be
acceptable.
7 Use of donated embryos
Specific Questions
Section 7.2
Q35. Paragraph 7.2.1 – Is the practice of on-donation of donated embryos
acceptable if all parties are involved in the counselling process?
I do not believe that on-donation of donated embryos is ever acceptable
- see my response to Question 13.
8 Storage of gametes and embryos
Specific Questions
Section 8.3
Q38. Should limits apply to the duration of storage of gametes - recognising
that if stored for fertility preservation purposes, they may not be used for
decades?
o If yes, what do you think the maximum duration should be?
o If no, what difficulties do you perceive and how should the
storage of gametes be managed?
I have no difficulty with the long-term storage of gametes for fertility
preservation purposes, on condition that they cannot be on-donated –
ie they must be used only by the original provider of the gametes. This
more closely approximates the principle of the natural paradigm, which
places a natural limit on an individual’s fertility and therefore on the
usefulness of gametes.
Section 8.7
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Q39. Paragraph 8.7.1 – In the case of stored embryos where the couple is in
dispute, should embryos be kept in storage until the dispute is resolved
or should there be time-limited storage?
o What do you think the maximum duration should be for timelimited storage?
o Should advance directives about the future of any excess ART
embryos be obtained prior to the embryo being formed, so that
in the event of a dispute a process for either disposal or donation
is known?
If the maximum storage time is 5 years (+ 5 extension) then this should
be the upper limit in the event of dispute between the couple. If the
couple cannot reach agreement within that period then a short further
extension (1 year) could be granted, but at the end of that period the
embryos should be allowed to succumb – that is, on donation should
not be permitted without the consent of both parties. This is in line
with the principle of the natural paradigm, in which a couple who
cannot agree on such matters would be unlikely to conceive in any
case.
9
Information giving, counselling and consent
Specific Questions
Section 9.2
Q42. Among the information which should be discussed, should there be
specific reference to the significance of biological connection between
donor-conceived persons and the donors of gametes, and to the right of
these donor-conceived persons to knowledge of their genetic parents
and siblings? (see also questions in relation to Section 5 and
Paragraphs 6.1.1 and 6.1.2)
See my response to Question 13.
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10
Record keeping and data reporting
11 Sex selection
Specific Questions
Section 11.1
Q49. Are there any circumstances under which it is appropriate to allow sex
selection for non-medical purposes? e.g. for family balancing, to replace
a lost child, for cultural purposes?
If ART is a genuinely medical procedure intended to rectify a medical
condition (infertility), then it should not be used for purely social or
elective purposes.
Q50. Do you think that it is ethically acceptable for ART to be available to
individuals solely for non-medical sex selection purposes, e.g. for family
balancing, to replace a lost child, for cultural purposes, when the
individuals are neither infertile (physically or socially), nor have reduced
fertility?
If ART is not restricted to addressing medical conditions (infertility,
infectious disease) then it will become more discretionary, just another
elective procedure. This would shift the dynamic of ART to matters of
personal taste, severely reducing the state’s ability to legislate it at all
and, concomitantly, increasing pressure on the public health dollar.
Ethically, the major objection to sex-selection is that it commodifies
children to meet the wants of their parents, rather than recognising the
child’s inherent dignity.
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12 Preimplantation genetic diagnosis
13 Surrogacy
Specific Questions
Section 13.2
Q57. In view of developments in other countries, should there be
compensation, more than expenses, for gestational mothers congruent
with the reproductive effort contributed?
See my responses to Qq 20 and 21. If payment of gamete donors in
excess of reimbursement for expenses actually incurred is not
acceptable, a fortiori the payment of surrogates for profit is also
unacceptable. Both practices commodify both embryos/children and
the processes around conception, pregnancy and birth, and so offend
the principle of the natural paradigm.
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