In the early days of donor conception services, the concerns of campaigners focused on the potential for adverse impacts from donor anonymity. Starting from the 1980s and 1990s, the UK and the State of Victoria, Australia were considered the two leading progressive jurisdictions. Not only did they seek to regulate medical treatments but they also recognised the rights of donor-conceived. Gradually other jurisdictions followed suit (though some, sadly, remain resistant). Recently a burst of progressive legislation has been enacted by other Australian States (see BioNews 1256 and 1249) who have followed Victoria's lead in opting for retrospective release of donor's identity. The thrust for such developments has been rooted in the human right of children and adults, including donor-conceived people, to know their identity.

However, this progressive approach has been limited by its short-term lens. There have been some improvements in attention to the psychosocial aspects that may affect prospective donors and prospective parents and in Australia and New Zealand this includes mandatory implications counselling. However, the availability of longer-term professional psychosocial support, including counselling services and intermediary services to support those wanting professional support in exchanging information and/or making contact with donor relatives, has not kept pace. Its development has been hampered by scarcity of funding, organisational and legislative support, and by lack of acceptance of moral by jurisdictions or the fertility industry.  

The fertility industry's focus has remained squarely on their 'duty of care' in relation to the period surrounding treatments and donor recruitment alone, despite experiencing a huge growth in profits. Jurisdictions and regulators too have largely avoided accepting any duty of care for the psychosocial fallout from the lifespan implications of creating life in this way. This leaves donor-conceived people, and others affected, to cope with the repercussions without adequate or equitable access to professional psychosocial support if they need it. Instead, they are left reliant solely on their personal networks and/or on peer support groups who are also squeezed by inadequate funding and all too often are seen as a 'get out' for those unwilling to accept any wider duty of care.  

Professional support and peer support are not mutually exclusive. Each have their place: some will want to use one or the other; some will want to use both.

As the years have gone by, evidence has grown of the complexity (for some) of the lifespan implications of donor conception and surrogacy, including from the voices of those conceived through such routes. It is now clear that ethical donor conception treatment is about more than family building. The needs of people seeking information and contact with donor relatives have become apparent. Many are tasked with managing large groups of donor siblings (and their families and networks) resulting from ineffective or non-existent national or international regulation, for example. Some learn that information provided to their parents could be inaccurate for example, that siblings in the same family had not been conceived using the same donor after all, or that the egg donor was in fact a migrant woman from a country far from the one in which she donated. 

The complexity has also become clear for the many people who learn of their origins outside of infancy – for example, through commercial DNA testing or late/accidental disclosure – and have had to cope with reassessing their identity and kinship networks, who they are and where they belong in their worlds.  

The spectre has also emerged of so-called fertility fraud, both historical and contemporary, including where the treating doctor used his own sperm or that of other patients, all without permission, for example Dr Donald Cline in Indiana (see BioNews 998) and Dr Jan Karbaat and Dr Jos Beek from the Netherlands (see BioNews 996 and 1150), or where sperm donors have been found to be 'serial/mass donors’, within and outside regulated systems (see BioNews 1257 and 1180). Sadly, we can expect more such challenging situations to come to light.

All such impacts are now being found to continue inter-generationally.

Evidence is building too about the lifespan impacts on donors regardless of whether they donated anonymously: how they handle talking about their donation history in existing and/or new relationships, with their children and in their wider family; how they feel about meeting their donor-conceived offspring and, sometimes, learning that there are many more out there than they ever imagined.

Into this has come the shocking news that those two earlier progressive jurisdictions – the UK and the State of Victoria, Australia – are dismantling their existing professional psychosocial support services for adult donor-conceived people and donors seeking information about, and possible contact with, each other. This is happening just at the point that their need for support are growing, and research is identifying the complexity of the required professional response (for some).

Although the Human Fertilisation and Embryology Authority (HFEA) in the UK has only provided limited free professional support for some time, even that has now been axed for those conceived or who donated post-August 1991. In Victoria, VARTA (the Victorian Assisted Reproductive Treatment Authority) became a world leader. It set up a team of professionals to assist with 'donor conception linking', ran 'Time to Tell' seminars to help recipient parents, collected resources that have been accessed internationally, and to help build the practice knowledge base. On 17 October, the Victoria Parliament voted to axe it from the end of the year despite strong opposition, the Guardian reported.

The Australia and New Zealand Infertility Counsellors Association recently published a revised version of its guidelines for supporting people connected through donor conception who are seeking access to information about each other, which may include the intention of making contact (sometimes also called intermediary work). Prior practice traditionally focused on donor-centred 'linking'. The new guidelines have been renamed 'donor conception linking' in acknowledgement that it occurs in a variety of ways and with a range of parties, not solely between donors and donor-conceived people. Thus it can include requests for information and linking between recipient parents who have used the same donor as other parents to conceive their children, and the partners and families of those affected by donor conception (eg donors' partners, extended family). 

These revised guidelines emphasise the specialist nature of this work, highlighting that all practitioners should ensure they are appropriately trained and experienced in this field before taking it on. The British Infertility Counselling Association is starting to consider providing training to its members and other interested counsellors/therapists, including about intermediary work. Both organisations are concerned about the potential inequity of provision if it is not funded by other than those who need it.

The International Infertility Counselling Organisation also recently issued a statement highlighting their concerns about the growing squeeze on the provision of psychosocial support at all stages, including for those seeking information about and/or contact with genetic relatives.

Medical science may have brought hope to those coping with involuntary childlessness but surely there is a responsibility to engage with adequately supporting those who need professional and or peer support.