It is unlikely that anyone reading this blog will be unfamiliar with Charlie Gard, the child with severe mitochondrial disease whose parents have been fighting through the courts for the right to take Charlie to America for experimental treatment. No-one could fail to be moved by the parents’ devotion to their severely ill son. Until this morning I would have said that there was nothing that could be drawn from this case to help us look more clearly at donor conception families and the vexed question of rights of access to information. But then I read the article in the Guardian by Ian Kennedy, Emeritus Professor of health Law, Ethics and Policy at University College London and realised that principles enshrined in law to do with the precedence of the welfare and rights of children, have just as much to do with donor conceived children as they do with a very sick child where there is a dispute between parents and doctors about treatment. As Kennedy says, listening to parents is vital but passion and emotion are not a good basis on which to make decisions about the future of a child. Of course a case like that of Charlie is heartbreaking but as a society we have to decide if there should be principles and rules to guide everyone when trying to make such hugely difficult decisions.
Whilst reading the article I found myself thinking about the Lebanese/American poet and philosopher Khalil Gibran whose book The Prophet was read by everyone in the 1960s and 70s who wanted to change society. One line from On Reason and Passion came to mind – For reason, ruling alone, is a force confining; and passion, unattended, is a flame that burns to its own destruction. This plea for a balance between hearts and minds is what everyone involved with baby Charlie have been struggling to achieve and the intervention of American evangelists, the Pope and Donald Trump has done nothing but tip the scales towards emotion, making life even more difficult for parents and hospital staff alike.
Kennedy believes that the first step to using reason to guide decision making is to acknowledge that children do not belong to their parents. And when I read this my thoughts immediately returned to Gibran. I have always loved what he had to say about children because it resonated so strongly with my feelings about all my own children. I’ll quote just the beginning but it is worth reading all the way through –
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
Kennedy continues by saying that parents do not have rights regarding their children, they have only duties – the principal duty being to act in their children’s best interests. It is of course children who have rights and any rights parents have exist only to protect their children’s rights. He goes on to say that parents’ views as to their children’s interests should usually be respected but parents cannot always be the ultimate arbiters of their children’s interests.
For me, what both Kennedy and Gibran are saying is that having children is a privilege that carries huge responsibility. Parents have a duty to, as much as is possible, put the interests of their children above their own desires and frailties. I believe strongly that one of the duties of couples and individuals using donor conception to conceive is to acknowledge to themselves (no matter how difficult this is) that at some time in the future their child may wish to have information about and/or contact with the person who contributed their eggs or sperm to help bring them about. Having recognised this, the parents’ responsibility is then to make every effort to find a known or identifiable donor and tell their child about their beginnings from a very early age.
There may be a right to do ones damnedest to try to have children, should that be the desire, but there is no right to have them and once they are here, the rights are all theirs.