ProfessionalResearchOur scientific researchGamete donation in the time of DNA surprises

    Gamete donation in the time of DNA surprises

    In 2022, Cryos participated in a stakeholder workshop to better address and understand the challenges new technologies present in relation to the anonymity of donors and donor-conceived children.

      Technology is in rapid development, and this includes the fields of public availability of genetic information and the field of assisted reproduction. Public and private perceptions of donors and donor families have changed in the last decade, and many donor-conceived children are growing old enough to want answers about their ancestry. Guidelines given to parents have changed as we have come to know more about the science and psychology of gamete donation. Because of this, there is a risk that one’s status as either donor or donor-conceived can be revealed by results from public DNA-testing registries.

      To start the dialogue, the “Reconfiguring Donor Conception” network of social scientists organized a stakeholder workshop in Copenhagen in April 2022. Participants included fertility clinics, gamete donors, parents, donor-conceived children, gamete banks and researchers. Later, an overview of questions and points from the event was created.

      Read the full study here

      The workshop looked to answer the following questions:

      • How do technologies, such as genetic testing and online forums, impact anonymity in donor conception?
      • Which challenges or possibilities emerge in relation to donor conception as new technologies are used?
      • Are there ways to organize donor conception more responsibly in the future?
      Sperm donor talking to donor-conceived child

      Support and conflict 

      The relationship between the donor, the parents, and the donor-conceived child is complicated and can cause various conflicts of interest. In some cases, donor-conceived children may want to know about their genetic origins despite the parents having chosen an anonymous donor. In other cases, legislation of anonymity has changed since the child was conceived, and parents who were unwillingly forced to use anonymous donors may be anxious about their child’s physical and emotional health. The same thing could happen if a donor wanted to change his status from anonymous to non-anonymous – in the case that national legislation would allow it – posing new challenges for the parents of children conceived with his help. In some cases, it has been kept secret from the children that they were donor-conceived, as this was the advice given to parents up until the 2000s. New evidence suggests that secrecy about donor conception has a greater negative impact on the child than donor anonymity, unfortunately putting parents of donor-conceived children in a difficult position.

      However, the internet has supplied an outlet for people to come together. Various forums and groups exist, giving a place for people to share their experiences with regards to either being a donor, donor-conceived or a parent. In these forums, people can discuss their moral and personal quandaries as they appear. These groups are created by the people directly involved, however, without governmental or professional oversight. This limits the degree of help which can be provided to those in need.

      Furthermore, donors and treatment registries may stay private within national or corporate archives. This can be particularly difficult in cases where conception with an anonymous donor has occurred outside the parent’s country due to legislative issues, as these families have no legal rights to any knowledge about their donor. There is currently no one place to gather and seek information for those who wish to initiate contact, making the process complicated and potentially overwhelming even in cases where all parties want the same thing.

      DNA surprises in an evolving society

      The rise of public DNA testing and registries add issues when the genetic heritage is uncertain or hidden. Not only can the anonymity of a donor be jeopardized, the privacy of donor-conceived children and their families can also become at risk.

      Modern technology gives a new avenue of issues which could not be accounted for just a few decades prior. The people around the donors, parents and donor-conceived children can feel at a loss about how to handle the discovery, which can cause tension in the lives of everyone involved. However, no current network exists to support next of kin, which can cause harm to all involved. This is yet another issue which could be tackled if parties were helped to contact health care professionals.

      Decisions for the future

      The participants of the 2022 workshop reached a consensus that an independent international online registry was necessary to support the needs of people involved with gamete donation. Furthermore, this should relate to a professional support system with access to counselling and updates on the constantly changing guidelines within the field. Whether parent, child, or donor, the involvement does not stop at the donor-conceived child’s birth. It is a lifelong commitment.

      The establishment of such a registry is complicated by the international nature of fertility treatment. Agreements must be made between countries, clinics, gamete banks, and individual healthcare professionals to supply information. Many of these same parties should remain available to offer guidance and support to the people involved throughout their lives. Great collaborative effort is needed for the project to be successful. Furthermore, it is yet unclear who is suited to oversee this support system, but it is worth reaching an agreement. Afterall, the core of the fertility industry is the development and wellbeing of both donors and donor-conceived children.