On November 2nd a new and important event took place in London. Entitled, From Secrecy and Anonymity to Facebook and DNA Testing, this workshop for professionals working in and around the donor conception industry and put on by the Donor Conception Network, was an attempt to help those in positions of influence to get to grips with what 21st Century donor conception practice needs to look like.
Marilyn Crawshaw set the scene by looking at research that addresses three fundamental background questions –
- What helps people to decide whether DC is right for them?
- How can we be sure that ‘telling’ children early is the best thing to do?
- What do people say helps them or hinders them in their contact with clinics about donor conception?
I am going to assume that anyone reading this blog is quite clear that telling a child from early years is best for both child and family in the vast majority of cases so lets look at Questions 1 and 3.
Crawshaw explained that the most effective and supportive way of helping people make the decision about whether DC is right for them is a psycho-educational approach that is ideally adopted by all clinic staff, rather than just the counsellor. This way of working first takes into account everything that the would-be parents bring with them – their personal histories, their relationship (if a couple), their culture etc. and then supports their decision confidence by giving high quality information in a way in which it is possible for those particular individuals to hear it. The importance of the decision should be underlined by helping the potential parents to think about who else needs to know and building strategies for talking with the child and others. Marilyn identified that concerns from the would-be parents could usually be divided into those that are child-centred and those that come from the here-and-now adult. Examples of the former are anxieties around both medical or emotional hazards for a donor conceived child and the latter are demonstrated in worries about bonding and whether they could love a non-genetically connected child. All staff in contact with parents should ideally be aware of the need for a balance of both types of concerns and be prepared to give good information or point the contemplating couple to people or places where their anxieties can be addressed rather than brushing them off with bland reassurance that everything will be fine. Here-and-now adult concerns can also influence how people visualise the donor. Someone who wants to see a donor egg as ‘a clump of cells’ rather than a vital component of life that comes from a living person is giving a message that this is the only way she can get her head round the idea of using a donor at the moment. As this way of seeing is obscuring a more child-centred approach, staff need to have the skills to gently challenge this vision and help the person concerned (probably a would-be mother) to be able to accept the reality of egg donation so that she and her partner can move forward in a way that will help sustain healthy relationships in their future family…or decide not to go ahead.
Crawshaw’s presentation was rich and dense and contained so much more than I can possibly bring you here. I hope it may become more widely available but in the meantime these are the points that Marilyn has extracted from research and experience as being the most helpful for clinics to bring to the attention of clients and support them with.
- Present DC as bringing additional aspects in family life that need preparation
- Be alert to the ‘here and now’ adults AND the ‘parents-to-be’
- Make clear that counsellors are there for patients not as gatekeepers
- Acknowledge that ambivalences and uncertainties are normal and can ebb and flow over the years to come but rarely disappear all together
- Normalise that people may need time to come to decisions and that sometimes (for couples) one partner has to wait for the other
- Aim for patient-led rather than clinic-led donor selection but provide help and support to the process
- Display DCN books and DVDs and copies of their free material
Even before genealogist Debbie Kennett’s presentation on the revolution that DNA testing is bringing to the DC community and the hugely complicated situations that can arise from the information about genetic relatedness that becomes available, it is possible to extract from Marilyn Crawshaw’s talk the seeds of a new way of helping people create families using third party conception. I will return to this shortly.
Becky, a donor conceived adult in her fifties and a member of a well-known group of DC siblings, spoke movingly of the tumult that occurred in her life when at 37 she was told of her DC beginnings by her mother. But to my mind her most valuable contributions were in challenging the language used by many around ‘telling’ and in her explanation of how complicated and emotionally draining the appearance of so many recent new half-siblings is to manage. These are often older people who have been given DNA testing kits for big birthdays as a ‘fun’ present only to have secrets opened up that have sent shock waves through extended families. Becky explained that the DNA companies had difficulty interpreting the connectedness between so many apparent half-siblings often appearing to be only months apart in age and that these new people often appear as ‘grandparents’ in the list of genetic relatives that is available for her to see. She knows just who they are, but the recipients of the ‘fun’ present usually think that there must be some fault with the DNA testing process. Is it her (and her already known half-siblings) responsibility to reach out to these people or should they leave them to make enquiries that will lead to donor conception becoming known about or give up and declare the whole DNA testing process a farce? An ethical dilemma that is debated hotly in Becky’s half-sibling community, but also undoubtedly a reason to continue limiting the number of families created from each donor and in the importance of openness about donor conception. Which leads to Becky’s significant observation that ‘telling’ is not good enough. Although ‘telling’ is now advocated as a process rather than a one-off event, Becky believes that ‘openness’ is a preferred term as it implies an internal process within an individual or couple as well as the external act of sharing information with a child and others. What is required for donor conception to be managed in a healthy way in all families is for openness to become a state of mind for parents. For this to become possible I am quite clear that a new way of providing donor conception services to would-be parents is needed.
The first principle that needs to be put in place is that donor conception is not a fertility treatment. Using DC does not make a person more fertile. It circumvents the fertility problem and replaces missing or sub-par gametes with eggs, sperm or embryos from someone else. It is a different way of founding a family. This difference I believe is at the heart of Crawshaw’s guidance to fertility clinics to ‘Present DC as bringing additional aspects in family life that need preparation’. The fact that DC is different to all other treatments to help people have a child leads I believe to a radical idea that services for people requiring donor conception should be separated from those treating people using their own gametes. This service, probably based in the same building because medical services are needed, would start from the premise that they are helping to build families rather than simply helping in the creation of a baby. Building families, rather than a narrow focus on making babies, inevitably leads to a longer view, taking into account the needs of the child as they grow and move from infancy to school years, becoming teenagers and then adults possibly thinking about a family of their own. One of the reasons that Becky’s mother told her at 37 was because Becky had recently had a daughter and the new grandmother didn’t want the secret to be perpetuated down the generations.
A new type of service would be based more on an adoption rather than a medical model, understanding that decisions made before donated gametes are used for conception (for instance, to go abroad for anonymous donation but actually all decisions) will have an impact that will last longer than a lifetime. DNA testing to find donors is likely to become available world-wide within ten years or so but donors promised anonymity may not want to be found, with all the pain and sadness that implies, and communication may be difficult because of different cultures and languages. A new service would understand that parents-to-be need time and opportunities to really get their heads round what they are undertaking and be prepared for the responsibilities that come with making a family with the help of a third/fourth party. DC Network’s Preparation for DC Parenthood workshops do just that but at present can only reach a tiny number of people undertaking donor conception. Part of this process would be helping potential parents to gain insight into their own motivations for wanting a child and recognising that if blood lines and the child being a ‘mini-me’ are really important for them, then donor conception is probably not the right way for them to create a family. And most of all a new service would, in a matter of fact and gentle way, encourage would-be parents to accept the donor as a real man or woman (a biological parent) who may, at some point, sooner or later, have a place – close in or more remote – in their family. It goes without saying that this new service would have openness at its heart and as a result many more parents would feel confident and comfortable with this path to family creation. As a consequence of the new open climate DC would become, like IVF, just another way for modern families to come into being.
I wonder which of the current clinics will have the foresight and the courage to break out of their mould and develop the service that is required for donor conception to become more mainstream. Perhaps that place doesn’t exist yet but I throw down the challenge to existing clinics that have been leaders in the recruitment of identifiable donors and understanding that good donor information is important in developing the confidence of potential parents rather then seeing it as a route to ‘designer babies’. DNA testing has quite rightly had the term ‘revolution’ attached to it Who will step up to be the first revolutionary provider of a new donor conception service in the UK?