Ms Gillian Keegan:

The National Infertility Support and Information Group, NISIG, appreciates this opportunity to participate in the pre-legislative proceedings relating to the general scheme of the Assisted Human Reproduction Bill.

I have been involved in NISIG for over ten years and I am here to represent the organisation. My statement will briefly detail the areas of interest to NISIG’s members. We have provided ongoing support to people who are facing these challenges for over 30 years.

The National Infertility Support and Information Group is a patient group formed in 1996 and is the only charity in the Republic focusing on infertility. Our mission has been to provide practical and emotional supports to, and advocate on behalf of, those experiencing reproductive challenges and to provide support to families created using assisted human reproduction, AHR. Therefore, we provide support not only to those prior to birth but also afterwards and we have developed those services, especially recent years. We provide support at all stages of the fertility journey, from trying to conceive to IVF through donor conception and surrogacy. The AHR landscape has become quite complex in the past ten years and our group tries to represent that.

A key service provided by the group is peer to peer support and networking opportunities. Meeting others who are in a similar position makes the experience less isolating and gives people emotional support.

NISIG also supports families created through AHR. We ran our first family conversations event a year ago. It aims to support families of donor-conceived children who are starting to discuss their children's origins. We have developed our services over recent years. Funding is critical for our organisation to continue to provide these services. We have found that funding has been especially challenging over recent years. We were getting national lottery funding but unfortunately have not received that in recent years.

As an organisation, we welcome this overdue forward-thinking legislation and the proposed introduction of a regulatory body. We have had acknowledgement that patient voices will be included on that body.

Over the last ten or 15 years, NISIG has concentrated on laying the groundwork for public funding for fertility. Given that one in six people suffer from fertility issues, Ireland is only one of three countries, along with Lithuania and Cyprus, that does not currently have public funding. The sector in Ireland has become increasingly commercialised over the past decade. The lack of public funding and the entry of multinational companies into the sector has meant people going through fertility treatments are open to exploitation and it is very costly for anybody going through treatment, especially where they are doing repeated cycles. We ask that consideration be given to the number of cycles that may be publicly funded. We suggest that three cycles would be reasonable. We have seen evidence in support groups that a significant number of people travel abroad when certain treatments are not available in Ireland, for example, double donation, embryo adoption and egg sharing. We ask if funding for that will be considered and for secondary infertility, including for the transfer of frozen embryos, when people hope to expand their families.

As an organisation that provides emotional support through our 24 hour helpline and regional support meetings, we recognise the inherent value of counselling for those undergoing fertility treatments, particularly at points where treatments have failed, in donor conception and surrogacy. We find that people have a number of treatments, then have a conversation with a clinician where the clinician says that if they want to have a family, they may have to consider donor conception. That is a significant blow for people when they hear that and it takes quite a long time to come to terms with it. While counselling should be encouraged, it should not be arbitrary. It is certainly beneficial in situations where donor conception and surrogacy are considered, but it might be best for it to be separated from the treatment provider.

The Bill addresses the upper age limit of 47 for women undergoing IVF treatment. We consider that to be unnecessarily restrictive, especially as reproductive technologies continue to evolve. NISIG feels that there should be room for flexibility which needs to be exercised by clinicians. Before I address surrogacy, we would like clarification on whether egg sharing will be permitted in Irish clinics. We would also like clarification on whether a male surviving partner can use embryos via a surrogate. Regarding single embryo transfer, we would defer to clinicians’ recommendations on this and agree that this might be decided on an individual basis. The time limit on storing embryos can be unnecessarily restrictive for those trying to complete their families and for those who have had cancer treatment. Regarding the proposed national surrogacy and donor conception registers under the Children and Family Relationships Act, as I think was mentioned by a clinician, Dr. John Waterstone, in February, we feel that the proposal whereby a donor-conceived person who applies for a birth certificate would be told by the State that he or she was donor conceived without ever seeking that information is a dangerous invasion of privacy that needs to be reviewed.

As Professor Madden mentioned, restricting surrogacy to domestic arrangement will effectively rule out surrogacy as an option for many couples in addition to leaving the children and prospective parents of foreign surrogacy arrangements in a legal limbo. The prohibition on providing technical, professional and medical services, save for domestic surrogacy arrangements, will cause unnecessary further distress to many couples in the State while also potentially leaving clinicians open to fines or criminal action. While we appreciate that surrogacy is a very complex area, the legislative framework will need to reflect the actual realities of surrogacy in Ireland, namely, that most of it takes place outside of the country. We have a surrogacy support group and people who come to it are dealing with surrogacy outside the State. We ask on behalf of our members for clarification on whether parental rights such as maternity and paternity leave will extend to the parents of children born via surrogacy. That is one of their key concerns.

The areas of concern are funding, counselling and the register with regard to surrogacy. NISIG thanks the Joint Committee on Health for the opportunity to submit this statement and to speak at this hearing. We ask that due time and consideration be given to review the questions and issues raised in this statement as they reflect those of the people who are going through surrogacy and donor conception. As a support group, we have been helping those people for the past 30 years. We thank the committee for its time.