30 November 2015
Director, Donor Conception Network; Senior Accredited Member, BICA; Policy, Research and Development Consultant, CoramBAAF and BRCG MemberAppeared in BioNews 830
The resounding message that came from the Progress Educational Trust/National Gamete Donation Trust event on 3 November was that more needs to be done to support parents of donor-conceived children in telling them about their origins. This applies to those with older children who haven’t been told yet as well as those with young children. The donor-conceived adults present were very clear that, without that starting point, conversations about donor-conceived (DC) people and their needs and rights are meaningless because a high proportion don’t even know about their origins and therefore cannot join the conversation. We, as representatives of the organisations below, couldn’t agree more.
The Donor Conception Network has been leading the way in encouraging openness as the best policy for families for the last 23 years. But many find it’s not easy. People are often grappling with the balance between privacy and honesty in the family. Finding the right age, the right words, and even the confidence, to explain to children or young people about how they were conceived can be a daunting task. DC Network runs 'Telling and Talking' workshops for parents and in pre-workshop surveys people are asked how they feel about the prospect of starting to talk to their children. People sometimes use the words 'overwhelmed', 'anxious' or even 'terrified'. Most parents need support of some kind and, luckily, there is a lot available.
For instance, DC Network has developed a wide range of resources and services that are used by families all around the world. It has published 'Our Story' books for children and 'Telling and Talking' books for parents. It runs workshops, conferences and local groups around the UK. The telephone helpline means parents and prospective parents can call and talk about their experiences and concerns, and the Network offers peer-to-peer support in lots of different settings. Talking to other people who already have donor-conceived children can be enormously reassuring, and hearing how they have explained things to their children gives people the confidence that they too can be open about the subject. The website has a wealth of information and personal stories. Over the years DC Network has supported many families in telling their older children and it’s always a privilege to be part of that process.
And DC Network is by no means the only organisation offering help.
People who are thinking about using gamete/embryo donation to form their family are now required by most licenced clinics to see their counsellor prior to treatment. For many years, these counsellors (the majority of whom are part of the British Infertility Counselling Association - BICA) have explored the issues around sharing origins information with children. This is viewed as vital to the wellbeing of the future family and in helping people prepare for donor-conceived parenthood. Increasingly prospective parents indicate that they want to have an open, honest relationship with their child and use counselling to focus on best practice around when and how to 'tell', guided by research and the personal experience of others.
Experience suggests that many of those who are unsure or disinclined to tell have not had a chance to talk about the issue before. Counsellors can help people to understand the legal rights of donor-conceived young people and the rationale for 'openness' alongside the risks of secrecy. Advising them of the support and services available through the DC Network will most often lead to a decision to be open. In this sense, counsellors are representing the best interests of children and can be influential while respecting people’s autonomy.
A minority will still feel unable to be open, but people often need time and perhaps even the actual birth of the baby to understand the full implications of keeping the secret. Everyone moves at their own pace, with many people changing their minds at a later date. The support is there for parents at whatever point they decide to tell, through counselling and through DC Network.
BICA is committed to ensuring that its members facilitate clients in making well-informed decisions about donor-conceived parenthood. It regularly runs workshops and courses for infertility counsellors to enhance their knowledge and skills, as well as offering training to MDT colleagues. However, much more needs to be done to encourage a child- and family-centred culture in treatment centres so that they fulfil their statutory duty to advise patients that it is important to tell children at an early age and how best that can be done.
While BICA is committed to promoting openness in clinics, the Birth Registration Campaign Group (BRCG) believes that there is also an urgent need for the current birth-registration system to be overhauled and modernised to reflect the diverse family forms that now exist in modern-day Britain. There needs to be a birth-registration system in place that respects and reflects the fundamental right of all children and adults to know their genetic origins as well as their legal parentage. This will enable all people to make fully informed life decisions, including those of their health and well-being.
BRCG have proposed a system that does not compromise a person’s privacy, nor that of his or her family, but nevertheless enables all individuals (including those donor conceived and adopted) to access information about their genetic origins. They would like to find a way to engage with the present Government to honour their commitment for the review of birth registration made by the previous administration during the passage of the Human Fertilisation & Embryology Act 2008, and underpin in legislation the principle that all children have a right to know their genetic origins.
The PET event has only fuelled the determination of all three organisations to do even more over the coming years.