Royal Hospital for Women
Department of
Reproductive Medicine
Template for response
Part B of the Ethical Guidelines on the Use of Assisted
Reproductive Technology in Clinical Practice and
Research, 2007
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Name:
Department of Reproductive Medicine Royal Hospital
Organisation*: for Women, Randwick, NSW
*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
General Questions
Section 5.2
Q6. Paragraph 5.2.1 – Should there be exceptions to the
restrictions/limitations on accumulating gametes/embryos in some
situations? e.g. for fertility preservation in children, young people and
adults undergoing chemotherapy, for the purposes of preimplantation
genetic diagnosis, and/or for women with reduced ovarian reserve.
Restricting the accumulation of gametes/embryos does not apply to current
practise and is often performed for reasons of fertility preservation, low
ovarian reserve, advanced maternal age and PGD. This should be taken into
account.
6 Donation of Gametes
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?
There should be a national registry. The NSW registry collects this data. If it
was national this would also make it easy to make sure the donor did not
donate to more than five families across Australia
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Q14. What assistance is required to support parents in telling their children
about their genetic origins?
o Should this guidance be included in the ART guidelines?
o How, and by whom, should this assistance be provided? e.g. Is
there a role for community practitioners such as GPs and
maternal-child health nurses?
Parents should be supported and assisted in a standardised way by
counsellors at the clinic in which the ART was performed. A protocol should be
developed and links to other resources be given.
Section 6.2 (also relevant to donated embryos)
Q16. In the best interest of the child, should there be an age limit for:
o male gamete donors?
o female gamete donors?
o Male and female gamete providers for donated embryos?
If so, what do you think the age limit(s) should be?
There should be an age limit for anonymous donors (male 45 years, female
35 years) in order to maximise the chance of pregnancy and reduce the
burden of disease. There should not be an age limit on known donors as
family/genetic linkage may outweigh the other issues.
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?
Perhaps there should be an age limit of 50 however more importantly the
health of the recipient should be thoroughly assessed and risks of pregnancy
discussed. Mothers over 50 are at almost three times the risk of low birth
weight, premature birth, and extremely premature birth; their risk of extremely
low birth weight, small size for gestational age, and fetal mortality was almost
double.
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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)
There are significant risks to women travelling overseas for anonymous egg
donation including the risks with regards to multiple embryo transfer and
unknown genetic origins which is detrimental to the psychological health of the
child. Australian clinics should be able to compensate women for egg donation
and comply with the donor register so that the health of the child is cared for.
Section 6.10 – 6.11
Q24. Do you think that the current ethical guidance is adequate?
o Should information about the number and sex of half-siblings be
available to donor-conceived persons?
o Do you think that more information about half-siblings should be
available to donor-conceived persons? e.g. identifying
information.
Information should be available with informed consent. IVF Australia has a
program called siblinks that allows half siblings to contact each other
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?
Embryo storage should be 5 years with assessment and review at that time
Gamete storage should be ten years with review
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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)
This must be discussed, many women find it hard to imagine a child and the
impact of decisions on that child as they are simply focused on achieving a
pregnancy. The dialogue regarding the health of the child must begin in early
phases of counselling.
Section 9.8
Q43. When a child or young person with stored gonadal tissue or gametes
reaches adulthood, how should the ongoing consent arrangements be
managed? i.e. the transition from parental consent to the consent of the
individual.
The age for consent for medical procedures Is generally 16 years however
with regards to storing gametes if a payment was required many young
adults would have difficulty with this and may make a decision they regret
later. This is something to consider.
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10
Record keeping and data reporting
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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?
6 out 10 staff were against sex selection in any situation. 4 out of 10
members were open to sex selection however long term data is still needed
in terms of the risks to the child. This depends on whether an IVF/ICSI/PGD
embryo is at increased health risk as compared to a naturally conceived
pregnancy. There is some data suggesting slight increased health risks in
IVF babies (hypertension) however we do not have large amounts of long
term data for PGD.
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?
This should not be medicare rebateable
12 Preimplantation genetic diagnosis
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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?
Gestational mothers should be appropriately compensated more than just
expenses.
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14
Innovations, training and quality assurance
Not confidential