The current context of professional psychosocial support in relation to the use of Assisted Reproduction Treatments (ARTs) and their lifelong implications

IICO is the international infertility counselling organisation, the umbrella organisation for national bodies providing infertility counselling. Currently, IICO has over 20 member organisations (www.iico-infertilitycounseling.org) which meet on an irregular basis to promote high standards in infertility counselling.

Medical interventions are a means of achieving family life OR enabling people to end their treatment attempts if unsuccessful OR (for donors and surrogates) enabling others to achieve family life: they are not an end in themselves.

ARTs are a route to family life, so policy and practice in relation to treatments and donations should be informed primarily by child- and family- focussed considerations.

The use of ARTs has lifespan social, emotional and relational as well as health implications for all affected, with significant additional aspects to be considered and navigated where donor conception and surrogacy are involved. Those affected include those conceived and their current & future families; donors & their families; surrogates & their families.  All also have networks that might be affected that are continually evolving over their lifespans. Lifespan aspects should therefore also be reflected in policies and practices.

Numbers of DC-born and surrogate-born children are growing internationally but there are no internationally agreed donor or surrogate quotas.  Viewed from the lifespan perspective of those conceived, international quotas are sorely needed.

The profile of those seeking ART treatments has changed in recent years with more single people and same sex couples seeking treatment than previously. This has impacted on the landscape of families, with new family compositions created by ARTs which do not always have a sound legal framework.

The use of imported and exported gametes and levels of travel to other countries for treatments have increased in recent years, bringing important and potentially complex issues for the immediate and longer term.

The context for donors has also changed with the use of intra-familial donation or donation from friends, the use of embryo donation, legislative changes around anonymity (either prospectively or retrospectively), and the growth in non-statutory routes for identification of donors such as through commercial DNA testing and facial recognition.

Profits posted by the fertility industry are growing to the stage where it is now one of the highest earners internationally.  Yet there are no requirements on the industry to contribute towards psychosocial interventions prior to and during treatment; at the end of treatment; for families with dependent children; or for other life-course related needs including information release and intermediary services.  This reflects a medical model approach rather than a child and family model approach.

There is now widespread knowledge about the skills and qualifications required for professional psychosocial interventions prior to, during and immediately following ARTs and prior to gamete donation and surrogacy.  Far less is known about what is appropriate for work with families with dependent children where DC and surrogacy is involved, with DC and surrogate-born young people and adults, with their families and networks, and with donors, surrogates and their families and networks.

Few jurisdictions have systems in place for providing information release and intermediary services (also known as donor linking counselling and intermediary support services). Some of those that do, such as the UK and Victoria Australia, are withdrawing or minimising these professional support services just as DC people have reached the age when they can exercise their legal rights to access their state-held information.  This despite their stated experience of providing such services that some people’s experiences are proving complex and challenging and despite the growing research evidence that such services are needed.

Direct to consumer DNA and other informal, non-statutory routes to identification are a way of circumventing official systems and reinforcing the importance of being open from the start.

There are no internationally agreed standards for psychosocial support.

Recommended provision of professional psychosocial support

The focus in this statement is on professional interventions but peer support can also be of crucial importance.  The two sources of support should not be seen as competing, but as complementary.

Anyone contemplating the use of ART (and their partner if they have one) and in particular DC and/or surrogacy should have the right to receive a minimum of two free psychosocial counselling from a qualified counsellor[1] specifically trained in providing counselling services to intended parents around the psycho-social implications for the use of donor conception and/or surrogacy.

Anyone completing ART treatment (and their partner if they have one) and in particular where this involves DC and/or surrogacy, should have the right to receive a minimum of two free psychosocial counselling from a qualified counsellor specifically trained in providing counselling services to intended parents.  This could be to discuss a resulting pregnancy, or a failure to conceive, or the need to consider alternative options.

Anyone contemplating donating gametes for the use of others, or becoming a surrogate (and their partner(s) if they have one) should have the right to receive a minimum of two free psychosocial implications counselling from a qualified counsellor specifically trained in providing counselling services on the psycho-social implications of donating or being a surrogate.  In cases of known donation and surrogacy.  This should be extended to include shared sessions between the parties.

More needs to be available to help parents, donors and surrogates with strategies for disclosure and openness; and more needs to be available to help families with dependent children and DC or surrogate-born people with any issues arising from their origins.

The specific role for professional psychosocial support in Information release systems and policies

• Ethically informed policies and services should include clear reference to where responsibilities lie (including financially) for support with information release and the exchange of information and contact between those genetically and gestationally related following DC and/or surrogacy. This includes donors, surrogates and ‘siblings’ as well as donor-conceived and surrogate-born people.
• Psychosocial professional support should be made available when information release is requested or when the use of an intermediary is requested. Where counselling is needed, this should be provided by a qualified counsellor.  For professional support with information release and intermediary services alone, advanced counselling skills will be required: the professional qualifications and experience for such work need to be clearly specified.

Key Messages

• Medical interventions concerning ARTs are only the start of the human experiences of those affected. The experiences of those affected – including donors and surrogates and their families as well as DC and surrogate-born people and their families – are dynamic and unfold over their lifetimes. The fertility industry should share responsibility for the provision of high quality psychosocial professional support services.
• This field is ever evolving but the barriers to responding organically throughout the life stages with appropriate psychosocial skills and knowledge include the lack of financial structures and policies as well as the limited research and practice evidence base and the limited availability of training, in particular for work at later life stages.
• Professional support and peer support each have their place when responding to the needs of those affected. The use of each can differ across time and context and can be stand-alone or complementary.

[1] The qualification requirements for counsellors differ across jurisdictions; some regulators and professional bodies also specify what qualifications are required