One of the founding principles of the Donor Conception Network when it was founded 24 years ago was openness with children about the fact of having been donor conceived. One of the main reasons for this was respect for our children’s autonomy and right to assign whatever meaning they liked to this information. As the years have passed the organisation has realised that not only should children be ‘told’ they are donor conceived but ideally they should also have access to information about their genetic background and roots, should they choose to know about these. DCN argued this case cogently when the government was considering removing anonymity from gamete donors. With important testimony from donor conceived people and support from some professionals we won the day.
Research to support ‘telling’ and access to genetic origins has been patchy, sparse and recently subject to attacks by people like Guido Pennings who have questioned the empirical basis of such a stance. He argues that parents should be able to choose to tell or not, just like any other piece of information, not understanding or recognising that information about genetic heritage is NOT just like any other information. It may or may not make all the difference to a donor conceived person. The point is, it is THEY, not the doctor or their parents who should know about it and have choices as to any action they want to take.
Enter Professor Vardit Ravitsky from the Ethics Department of the University of Montreal. Her writing on this topic is like a clear mountain stream. It is she, with other colleagues, who wrote the excellent second refutation of the Pennings BioNews piece http://www.bionews.org.uk/page_847313.asp. and the other day I was introduced to the article Autonomous Choice and the Right to Know One’s Genetic Origins on which, I think, the latter article was based. She argues that the inability to know ones genetic origins may cause some people great harm and others no harm at all, but that all are treated wrongly when they are deprived of the ability to access their genetic origins if they choose to do so. She says, “People can be wronged without being harmed” and goes on to cite a case where someone’s personal financial information is made public but no harm is done. However, there had been a risk that harm could be done and the same thing happens when donor conceived people’s right to know is violated. Donor conceived people’s experiences and needs to know vary hugely – for some there may be a life-long struggle that has caused much psychological harm whilst others perceive the search as something challenging but ultimately fascinating and with the possibility of interesting new relationships. For all of them, the right to know is grounded, not necessarily in a need for protection from harm but “rather in their autonomy to make choices about what their genetic origins mean to them at different points in their lives. This choice is linked to fundamental aspects of human existence; our understanding of who we are and how we are connected to others.”
Ravitsky brings a cool, clear eye and some refreshingly unacademic language to the long debated questions on ‘telling’ and access to origins information. As she says, “The right to know is not about giving DC people information; it is about removing barriers to access, barriers that we (society) created around a process we (society, fertility doctors and regulators) enabled.
Respect is all. And it is good to know that the path DC Network instinctively followed 24 years ago is now so well supported and articulated so clearly and persuasively by at least a portion of the bio-ethics community.