The Council published a report ‘Donor conception: ethical aspects of information sharing’ on 17th April. In this extract from the foreword to the report, the Working Party Chair and Council Member Dr Rhona Knight reflects on the reports creation and outlines some of the major findings.
In the early stages of developing this project, it became apparent that there were many interests at stake, and also very different heartfelt views on this issue, even amongst people coming from a similar perspective. A Working Party representing the full diversity of these views would have been too large to be practical. A small expert Working Party was therefore brought together, establishing a consultation process to ensure that we would hear, and could take full account of, the multiplicity of views and the diversity of contexts in which reproductive donation occurs. It was essential to consider the different perspectives of those affected by donor-conception, being aware that amongst donors, recipient parent/s and donor-conceived people opinions were not uniform, and indeed could be poles apart.
The Working Party also needed to consider the wider network of family, kin and cultural groupings impacted by, and impacting on, the donor conception ‘triangle’ of donor-conceived people, parents and donors, bearing in mind how all these interdependent relationships change over time. It also needed to consider throughout the one group it could not hear from: those who are donor-conceived, but who do not know this.
The word ‘information’ is used in many different ways in donor conception. It can, for example, be information relating to the fact that an individual is donor-conceived. It can also be information about the donor themselves, information about their medical history, their genetic makeup, and who they are as people. It was important to identify the benefit or harm that knowing certain information might confer on the different parties, as well as when and how this information could be shared most effectively. For example, the Working Party found that there was sufficient evidence to point to the conclusion that it is usually better for children to be told by their parents, at an early age, that they are donor-conceived.
In exploring the ethical considerations of information sharing, as in other areas relating to donor conception, the use of language is important. The language of rights, which tends to start with conclusions, seemed too adversarial, not permitting the more nuanced approach needed in dealing with the complex interdependent networks of relationships of family and kin. We have therefore used the language of interests and explored how these interests, together with the responsibilities of those involved in donor conception, can lead to a more individualised context dependent analysis and approach.
The Working Party places the onus on recipient parents to decide if, when, how and what information relating to donor conception should be shared with their offspring, seeing responsibility for these decisions as being a key part of the parental role. We also considered how different values impact on these relationships, and concluded that openness to children about the means of their conception is important in so far as it contributes to the quality of relationships within the family, and to the well-being both of parents and of donor-conceived people. We considered the need to ensure that useful information is collected and made available, that support for all those involved in accessing and sharing this information is provided, and that structures are in place to ensure any essential medical information can reach those who need to receive it.
As the cover of this report demonstrates, the ethical aspects of information sharing in donor conception are about people and relationships. I hope that this report will be useful to those considering donation or donor conception, to those providing and regulating care, and to those involved in donor-conceived kinship relationships.
I would like to thank everyone who so willingly contributed to our evidence gathering, whether through writing to us or meeting with us in person, enabling us to understand the complexity and diversity of experiences and viewpoints in this area.