NHMRC Public Consultations

Skip Navigation and go to Content
Visit NHMRC website

Draft Ethical guidelines on the use of assisted reproductive technology in clinical practice and research submission

ID: 
83
This submission reflects the views of
Organisation Name: 
Donor Conception Support Group of Australia
Personal Details
Comment on specific Sections, clauses or sentences of the draft revised Draft Ethical guidelines
Specific Comments: 
3

• the difficulty in balancing the needs and concerns of individuals or couples, donors and persons born as a result of ART It will never be possible to balance the needs and concerns for every individual concerned with donor conception. The primary concern must always be the people conceived as they had no choice in the method of their conception whereas the other two parties were consenting adults.

3.1

This section is of extreme concern to our group. In previous Ethical Guidelines there has always been the statement: • In these guidelines, AHEC has recognised that the welfare of people who may be born as a result of the use of ART is paramount. (2004 & 2007) Our question must be why has the welfare of people born as a result of ART gone from being considered paramount to not being at the bottom of a list? There is special mention in the section of embryos warranting serious moral consideration, while we do not dispute this we ask why this is mentioned in particular and why there is NHMRC Embryo Research Licensing Committee which investigates how embryos given for research are treated but no such committee exists to oversee the creation of human beings in ART - especially those created from donated gametes and embryos.

3.2
  • Decisions regarding any procedures or the use of gametes or embryos, should take into account any

potential harm to the person who would be born

Not enough is being done to investigate the potential harm that can be caused to donor conceived people either medically, socially or emotionally by the method of their birth. Clinics need to put more resources into better counselling and information sharing in order to allow potential parents to make better decisions about whether donor conceptin is right for them.

  • ART may have serious consequences for the person born. An individual or couple considering

undertaking ART should therefore give serious consideration to the psychological and physical
wellbeing of the person who would be born.

Of course potential parents but give serious consideration to the wellbeing of any children they might have but they need a huge amount of help in this especially when using donor conception. People struggling with infertility are in a very vulnerable position and not always in the best position to make decisions about using donor conception without help. Clinics are very profitable businesses and need to put more into counselling services not just for future parents but for all people involved (parents, donor conceived people and donors) longterm.

3.3

• If a person born as a result of ART is deprived of knowledge about their biological connections, they are also deprived of the ability to decide the level of significance these connections will hold for them. When a person born from donated gametes wants to establish contact with their biological parent(s) and/or their other biological family members, but is unable to do so, the effect on that person may be substantial. It is good that there is a growing recognition of the needs of donor conceived people to information about their donors and siblings; unfortunately this recognition is by far reserved for those conceived with the use of identifiable donors. Not enough is being done by clinics to contact past donors to encourage them to either become identifiable or to release more information about themselves to answer the needs of donor conceived people. • Consideration about biological connections and social relationships is important for potential gamete donors Consideration of biological connections/social relationships is not only important for potential gamete donors but for those who have donated in the past especially the many who donated in time when there was no counselling. Education campaigns are needed to give information to donors and to help support them.

3.6

 

  • It is unethical for individuals, or couples, to purchase, offer to purchase or sell gametes

or embryos or surrogacy services.

 

Our group finds this statement rather puzzling when clinics have bought semen from overseas sperm banks and have sold semen to other clinics within Australia.

5.3

There needs to be a number put on the limit as has been done in some state legislation. Our group’s opinion has always been that the limit should be 5 families including the donor’s own family.

5.6.5
  • clinics to provide ongoing opportunities to support parents, to

help them to understand the potential significance of the biological connection and the

benefits of early disclosure, and to assist parents to find effective ways of disclosing to their

children their genetic origins.

 

Our group is in agreement that there should be ongoing support for all parties: donor conceived people, parents and donors but this is definitely not happening; it is still the case that when a pregnancy/birth occurs that for the most part support from the clinics ceases.

5.9.1

Both the 2004 and 2007 guidelines also contained virtually identical statements to the 2015 draft which stated:

Working with relevant professional organisations, clinics should use forums for public information to encourage people who were donors before the introduction of these guidelines, and those previously conceived using donated gametes, to contact the clinic and register their consent to being contacted by their genetic children or genetic siblings and half-siblings, respectively.

The 2015 Draft states:

If the consent form does not include permission for release of identifying information (because the donation was made before the introduction of the 2004 edition of theseEthical Guidelines and the gamete donor has not come forward in response to the public information campaign, see paragraph 5.13), the clinic should make an appropriate effort, consistent with the original consent document and the privacy rights of the donor, to contact the gamete donor and obtain his or her consent to the release of information.

Our group would like to once again state (because we have raised this in a past submission) that there has never been a public information campaign run by any clinic in Australia to try and encourage past donors to come forward. The only time that clinics do anything in the media is to either advertise newly available treatments or to advertise for more donors. Complying with the guidelines is supposed to be part of the accreditation process and it is distressing to see what is (especially for older donor conceived people) an extremely important part of the guidelines being ignored and nothing being done about it.

Page reviewed: 20 April, 2017