Submitted by FertilityLab Wed 07/25/2012
As an embryologist by training and experience, my focus is usually on the technical aspects of IVF. But when I become aware of unintended consequences arising from high tech reproduction, I am forced to reconsider the status quo of how we provide assisted reproductive services to patients. I have been following a heated discussion regarding the rights of donor conceived children which started out as a simpler ethical question “How old should an egg donor be to donate her eggs: an ethical debate” on Dr. Craig Sweet’s Fertility Blog. The age question (which I also took up in a previous post) was replaced by a very heated discussion of whether the practice of anonymous donation is harmful to some donor-conceived children. The last time I looked there were over 90 comments on Dr. Sweet’s Blog post and he threatened to delete inflammatory comments if the temperature of the debate wasn’t reduced so the post may already be gone. The comments on this post made me aware of the VERY STRONG feelings regarding anonymous gamete donation that exist on the part of donors, donor-conceived children, intended parents and even “search angels”. What’s a search angel? Apparently, search angels are volunteers who use information supplied by donor-conceived persons or adopted persons to search public databases to try to find biological relatives. These volunteers are very passionate about reuniting biological families.and apparently there is no shortage of people who want these services. The debate rages on blogs and other venues regarding whether the current practice of anonymous donation of gametes violates a basic human right to identify their biological relatives. Many European countries, Canada and at least one province in Australia have banned the practice of anonymous gamete donation. Why? Because some (not all) donor-conceived offspring expressed a deep need to identify their donor and extended biological family but the existing laws and the contracts agreed to at the time of their conception blocked their efforts. In the US, the majority of both egg and sperm donors overwhelmingly choose to remain anonymous. Anonymous sperm donors have no expectation that donor-conceived children would ever contact them. That is slowly changing as some sperm banks are offering sperm donors the option of “open” donations which means the donor will allow their offspring the option to establish contact when they reach adulthood. However, most sperm donors still routinely relinquish all parental rights and have no financial responsibility for offspring conceived with their gametes. California Cryobank donors sign the following waiver : I have no intention or desire to be deemed a legal parent of any resulting child(ren) and, to the fullest extent possible, waive any and all claims that I may have to parenthood or any child(ren) that may result from my donation(s). I intend for this waiver to apply regardless of whether my semen specimens are used by a married or unmarried woman and regardless of the state in which my semen specimens are used. Anonymous egg donors similarly waive all their parental rights and responsibilities to donor-conceived offspring. Another consequence of these anonymity agreements is that the donor-conceived child is cut off from any biological relatives before they are even conceived. Donor-conceived children may grow up and eventually regret the “no donor contact” decision that was made for them. Creation of donor registries is one solution which creates a database of donor ID linked to donors which can be accessed by children as they become adults. Wendy Kramer and her donor-conceived son Ryan created the Donor Sibling Registry website which allows offspring who know their sperm donor’s ID to connect with half-siblings conceived by the same donor. If donors want to find offspring who are registered on the site, that is possible too. Contact occurs only if both parties are agreeable to the contact. One alternative to anonymous donation is known or directed donation. This option means that the donor is known by the recipient and is frequently, but not always, a relative of the recipient (eg. sister donating egg to sister) so that there is a shared genetic lineage between the donor and recipient. The extent of the known donor’s involvement with the donor-conceived child may vary in known donor arrangements but donor parental rights are still typically waived. For donor-conceived children who need (or want) to identify their entire biological network, open arrangements offer this transparency. If society decides that donor-conceived children have a basic human right to discover the identity of their donor and perhaps extended biological relatives, that will have widespread implications. Giving donor-conceived children these rights retroactively would mean that previous conception contracts are violated, donor confidentiality and privacy are made null and void and both the donors and recipients lives are disrupted. All the social simplicity of donating gametes anonymously which was appealing to the adults involved in the original third party reproduction agreement is made complicated and messy. When there are competing rights, whose rights should prevail? Should a system persist that sets up an inherent conflict of interest between adults participating in third party reproduction and the children that are created by that collaboration? The more I learn about the real anguish some of these donor-conceived children express, I feel that they have a compelling case for transparency regarding their origins. Donor-conceived children who were given no choice in the matter at the beginning should perhaps be consulted when their needs and opinions can be known. I have become uneasy about a system which irrevocably decides for a child, prior to conception, that they may never have access to the identity of half of their biological relatives. I realize that “changing the rules” on donors and recipient families who were promised anonymity will create problems and it may never be possible to offer this “open” gateway to all donor-conceived offspring who seek this currently. Just as the offspring are seeking biological connections, some donors also seek their donor-conceived offspring. In cases where contact is mutually agreeable, we should have a mechanism to facilitate this contact. As I read the angry comments back and forth, I felt sick and frustrated. Isn’t there some middle ground that can be a starting place for discussion? Why do we get bogged down by side-show questions like What makes a mother? , a recurring theme with no “correct” answer. The intended mothers most commonly expressed the viewpoint that daily nurturing of a child regardless of their biological origin makes a mother. Several donor-conceived persons weighed in on this point saying how grateful they were to their intended mother.No doubt that many happy families are produced and many donor-conceived children never long to know their biological relatives from the donor’s side. Eventually, someone asserts that donating gametes is no more significant than donating blood or plasma. Understandably, we become uncomfortable when someone asserts the primacy of genetics over everything because this view taken to an extreme has given rise to numerous examples of genocide and eugenics. However, to deny the importance of kinship in human relationships is equally without merit. Kinship and genetics do matter to people. If they didn’t, there would be relatively little interest in assisted reproduction. Most adults experience a change in priorities when they have kids. A parent’s focus naturally moves from their needs to their children’s needs. In our rush to solve conception problems, are we choosing the expediency and simplicity of anonymous donation which promises a socially simple solution for the adults involved without considering that this decision may create an unsolvable problem for some of the kids we are helping create? We must listen to the voices of donor conceived children who are miserable because of the current policies of anonymous donation. Some donor-conceived children express deep unhappiness with not being able to know the identity of the other half of their biological relatives. Other donor-conceived children express satisfaction with their life and do not apparently feel any need to connect with their donor derived biological relatives. Unfortunately, the status quo of anonymous donation supports only the second child’s needs but not the first. I realize that banning anonymous donation going forward could very well be a game changer for infertility patients and ART clinics, based on the effect of these bans in other countries. A ban on anonymity would be expected to drastically reduce the number of donors willing to participate and this will make providing donors for infertility patients difficult. When anonymous donation was banned in the UK, the number of sperm donors declined and UK fertility patients sought sperm donors elsewhere but recent evidence suggests that the numbers of known donors are increasing with time. Canadian infertility patients came to the US to find egg donors. It would likely make providing donor services to infertility patients more difficult, at least in the short term. Banning anonymous donation would negatively impact the business of egg and sperm banks which rely mostly on anonymous donors. Estimates suggest that 30,000-60,000 children are conceived annually in the US from sperm donation but in the absence of little real tracking data, these are estimates at best. Fewer children would be conceived from donor gametes, because the only other kind of donor (called known, directed or open) donors are a relatively rare bird. I wonder if known donation would become more common if anonymous donation were not an option. Would we more readily turn to our relatives and ask them for gamete donation to help us conceive a child rather than ordering sperm from a catalog or going through an egg donor agency, if anonymous gametes were not so readily available? Donor-conceived child Kathleen LaBounty blogs at Child of a stranger regarding her efforts to find her biological father. She characterizes the current anonymous donation arrangements as a type of hypocrisy. She notes that “couples use donor sperm or egg because they very much want at least some biological connection to their child. And yet, she says, by using anonymous donors they cut off that child’s other links.”And not just with the biological father, but aunts, uncles, grandparents. It’s half of the family,” she says. Events around the globe suggests that increasingly, donor-conceived children who want more transparency about their origins are gaining political momentum. In 2011, a Canadian court banned anonymous gamete donation because it agreed that donor-conceived children had lesser rights than adoptive children when it came to discovering their biological relatives. ASRM’s response to the Canadian ruling was that it will strongly oppose any move to ban anonymous donations. “We think that people ought to be able to build their families the way they see fit,” says Sean Tipton, the political spokesperson for ASRM. “And you don’t change the rules in the middle of the game.” ASRM whose mission is to advocate “on behalf of patients, physicians, and affiliated health care providers” is not particularly well-positioned to advocate for theoretical future children when anonymous donation arrangements are made. However, change may be on the horizon, whether or not ASRM works to support this change. In 2011, the state of Washington passed a law requiring that sperm and egg banks release the identity of their anonymous donors to donor-offspring at their request when they are at least 18. Because the Washington law allows donors to opt out and preserve their anonymity, it is unclear what real effect it will have. I need to be clear here. I support third party reproduction. I support the rights of single men and women, gay and straight couples to use third party reproduction to have their families. My personal unease arises from a growing concern that anonymous gamete donation may not be the best model moving forward. We may have a “lost generation” of kids who are blocked from finding their biological roots but it doesn’t have to be that way forever. And even for these kids, genome sequencing may eventually provide them the medical answers they need, if not the social connectedness they crave. The current system of anonymous donation is poorly positioned to support the future emotional and medical needs of all donor-conceived children and will likely be challenged by real (not theoretical) donor-conceived children as they reach adulthood and become politically active. Here is a link to many more resources for donor-conceived children who want to find their donor, including blogs by donor conceived children and parents of donor-conceived children. These links are also interesting reading for anyone interested in learning more about this issue.