By Charlotte Talbot
Introduction
‘Donor Family Matters’ is a book by Wendy Kramer that details the founding of the Donor Sibling Registry (DSR). The DSR is a network where people can sign up and find out about their genetically related half siblings, and where consent can be obtained to contact their sperm, egg, or embryo donor. The DSR was started by Wendy Kramer, the book’s author, and began as a humble Yahoo group where Wendy posted that she was looking to contact others who had used the same donor as she had in conceiving her son. Quickly, the group became flooded by others in her situation also wanting to find genetically related siblings. With the group now much expanded, Wendy sees the DSR as a group that fulfils people’s right to know about their genetic heritage.
Wendy largely raised her donor-conceived son, Ryan, as a single mother. However, over time, she and her son became increasingly curious about the identity of the sperm donor. Over the course of a few years, they used pieces of information from the sperm bank, including the donor’s location, birth date, and a DNA match that demonstrated his ancestral heritage. Using this information, they were able to find where the donor went to university and were even provided with a copy of his diploma. With all of this information, they were able to locate and contact the donor. They used not only publicly available information but also confidential data that was not necessarily theirs to obtain. Despite this history, the DSR now operates a strict mutual consent policy where people are only contacted when they consent to this.
The Noun and the Verb
Throughout the book, Wendy makes the distinction that parenting is not just about genetic heritage. She stresses that the parent who raises the child, despite not being genetically related, is the parent in the “verb” sense of the word, and that this parent is just as important as the “noun” (with the “noun” referring to being a “parent” in a purely genetic sense).
The book suggests that, although genetic heritage seems almost paradoxically important for those who are in families with donor conception, parenting in the “noun” sense and the “verb” sense are equally valued. This idea values relationships and “family” who are not genetically related.
Losing and Gaining Relatives
There is an ethical dilemma that is faced by parents: when do you tell a child that they are conceived using a donor (whether that be an egg or sperm donor)? Wendy sees it as a straightforward answer; that children deserve to know as soon as they are able to understand. However, due to a lack of a traditional father figure in her son’s life, this may have been an easier decision to make for Wendy. In families where both parents are present and there are possible siblings who are only genetically half related, it is often more complex. This has the potential to re-define family relationships, causing significant turmoil. Hence, it is often seen that that some donor children are made aware, and others are not. Ethically, what are the rights of the parents and child in this situation?
In Wendy’s case, a driving factor in causing her to tell her son about his heritage was that her son struggled with mental health issues, and Wendy felt that these difficulties could be somewhat alleviated through knowing that it was a “shared experience” between him and his genetic half siblings. This seems somewhat counter-intuitive as families where several members struggle with mental health issues may not feel that these issues are alleviated through the shared experience, so this illustrates the emphasis that some people try and place on genetic heritage.
Whose Rights?
Parents using donor gametes often consider the rights of all parties involved when choosing whether to pursue contact with the donors, especially those of their child. The DSR has a strict policy of mutual consent between all parties regarding contact. Often, donors sign a contract which gives them anonymity, which is supposed to protect their interests and prevent couples from blurring the line between parenting in the “verb” and “noun” sense. This raises difficult questions: can someone truly deny the right for someone to know their genetic heritage, and what are the potential approaches that could be taken?
Counselling and Advocating
Throughout the book, it is suggested that the significance of using donor conception is not adequately counselled by fertility clinics. In particular, there is a challenging situation that couples may be ill-equipped to deal with at a later point: how to tell (or not) resulting children that they are donor-conceived. Wendy sees the DSR as being able to fill this gap, helping to counsel parents into facilitating these discussions and ensuring that children know their genetic heritage.
Furthermore, the DSR has been able to act as an advocate for donors. The network has been uniquely able to uncover, with unequivocal evidence, when donor contracts have been broken, and where clinics have acted irresponsibly. Contracts often set a limit of five biological children from one donor, yet the network has found up to 200 genetically related children from one donor. This is an obvious breach of rights of the donors and the subsequent children, as well as irresponsible manipulation of the gene pool in the name of profit.
Conclusion
This book has demonstrated that mutually consenting contact between both donors and siblings can be a very positive and profound experience for many people. The DSR’s origins may not have been built on mutually consented contact, largely because it was a time when donor conception and infertility were taboo subjects and where a facility similar to the DSR did not exist. However, the DSR has now helped to tackle the stigma of such issues and bring more accountability into the assisted reproduction sector. Wendy’s book highlights her experience of the importance of genetic heritage in donor conception but does not minimise the value of parenting in the “verb” sense. While many are secure in knowing their genetic inheritance, this book helps the reader to have more empathy for those who do not and the impact that this has had on both Wendy, her son and other families affected by this.
Charlotte Talbot is a 4th year medical student at St George’s (University of London), who has intercalated in Women’s Health at King’s College London.