Patient attitudes to donation of embryos for research in Western Australia

Embryo cryopreservation has become an integral part of in-vitro fertilisation (IVF) procedures since the first pregnancy from a frozen–thawed embryo was reported in Melbourne in 1983.1 Controlled ovarian hyperstimulation results in around 10 mature oocytes being available for IVF, and any embryos surplus to the patient’s immediate needs can be frozen, stored and used in subsequent treatment cycles. It has been estimated that over 80 000 embryos are in storage in Australia;2 in the United States, there are over 400 000.3 The vast majority of these stored embryos will be used by patients in their treatment.3-6

The length of time embryos can remain in storage is subject to legislation, which, in Australia, varies by state.7 In Victoria, there is a 5-year storage limit with some provision for extension, whereas in South Australia and the Northern Territory a 10-year limit with no extension is in place. States without specific legislation, such as New South Wales and Queensland, follow the Reproductive Technology Accreditation Committee guidelines,8 which stipulate a 10-year limit to embryo storage. In Western Australia, the legal limit for embryo storage is 3 years, after which storage extensions for 2-year periods are granted by the Reproductive Technology Council.

As the end of the legal time limit approaches, couples must decide the fate of any of their embryos still in storage. In Western Australia, couples can choose (i) to use the embryos in a treatment cycle, (ii) to apply for a storage extension, (iii) to donate the embryos to another couple, or (iv) to discard their embryos. In our centre, 64% of couples decide to extend the storage, while 19% wish to discard their embryos, and 6% donate to another couple.6

Although the option of donating stored embryos to research is currently unavailable in Western Australia, amendments to the Reproductive Technology Act 1991 (WA) may allow couples to donate their surplus embryos to research. This would allow either stem-cell research, or embryo research to improve IVF technology. Patient attitudes to embryo donation for research in Western Australia have not been investigated. Therefore, the main objective of our study was to ascertain the proportion of couples willing to donate their embryos to research, in particular to research involving stem cells or to improve IVF techniques.

Embryo research is a sensitive topic that has been publicly debated in Australia and overseas in recent years. The main finding of our study was that nearly 30% of couples indicated that they would consider donating their excess embryos to research. This finding is consistent with those of a previous study which reported that 10% of couples from a Sydney IVF clinic indicated it was probable and 34% indicated it was possible that they would donate their embryos to research, and that 29% of patients from their clinic actually did donate embryos to research during 1986–2001.9 Other studies have found less willingness to donate excess embryos to research. For example, a French study found that 12% of couples with embryos in storage after 5 years would accept donation of their embryos to research.10 Interestingly, the preference for embryo donation to research is much higher in Sweden, where donation to another infertile couple is not permitted. There, 92% of couples surveyed preferred to donate their excess embryos to stem cell research rather than let them be discarded.11

We attempted to identify factors influencing couples’ reported intention to donate embryos to research. Individuals’ age and having children in the relationship did not influence their decision to donate to research, but those having strong religious beliefs were less likely to donate. A non-significant trend for those who were more religious to be less inclined to donate to research was also reported in the Sydney study.9 We found no preference for stem-cell research or research to improve IVF techniques, but respondents’ comments indicated that some couples would need specific information about the type of research program proposed before considering donation. This is consistent with the Sydney study, which found that lack of control over the type of research was a major concern for couples.9 Indeed, in accordance with the Research Involving Human Embryos Act 2002 (Cwlth), the NHMRC guidelines for research involving human embryos stipulate that researchers must obtain specific consent for each research project.12

Our study shows that couples in Western Australia are more likely to donate embryos to research than to donate to another infertile couple. The reluctance of couples to donate their embryos to another infertile couple is at odds with the relatively high level of acceptance of this form of embryo donation in the general community.13 However, 83% of the couples surveyed in our study had children in the relationship, and this has previously been shown to negatively influence parents’ decisions to donate their embryos to other infertile couples. The major concerns reported in this and other studies7,14 were the possibility of sibling marriage, having unknown children and the legal ramifications.

It is noteworthy that most couples consider it likely they will seek outside information to help them make the decision about what to do with their excess stored embryos. Indeed, only 10% of couples indicated they were comfortable making the decision alone. Moreover, in addition to formal counselling, couples are likely to seek information and advice from a range of different sources, including fertility nurses, scientific staff from within fertility centres, gynaecologists and general practitioners, as well as family members and ministers of religion. The need for educational programs on issues relating to embryo donation to another couple has been raised previously.7 Our findings support this view, and suggest that programs should be extended to encompass all potential donation options, including medical research.

3: Sources of assistance likely to be used to help couples decide the fate of stored embryos