by Wendy Kramer & Laura Strong •
A cultural phenomenon is growing these days in the world of gamete donation. The voices of the donor-conceived are growing louder and clearer, and the vast majority express that knowing or having known the identity of their donors is better than not knowing, psychologically-speaking. From actively listening to them, we learn that having a complete sense of one’s biological origins fosters a more whole identity, which can positively impact self-confidence (not to mention the importance of knowing one’s family medical history). They also prefer knowing and connecting with their half-siblings, just as anyone would want to know their first-degree genetic relatives. Furthermore, the vast majority of surveyed donors show that they not only think about the children they’ve helped to create, but also indicate a strong preference toward being able to know them. The extant research corroborates these experiences (DSR, 2015).
Although anonymous gamete donation is banned in 11 countries at the time of writing, the United States still lags behind in making such an ethical determination. There are numerous obstacles to banning donor anonymity in this country. In the meantime, the availability of all-open gamete donation clinics would offer an alternative option to those who want to do the right thing for their children while supporting organizations that follow this principle as a matter of regular practice. Since many egg donation clinics are already offering ethical options, we offer a sketch of what an ideal sperm donation clinic would be like. It would differ from existing U.S. sperm banks in three major areas.
Openness and Contact
First and foremost, an all-open gamete donation clinic, which we’ll call The Ethical Sperm Bank, would require all donors to make themselves available for contact with their offspring at any age. The donors would share photos, answer questions, share information about themselves, provide family medical history, and, optionally, have some required in-person meetings.
The reason behind fostering contact at any age, and not just once the age of 18 is reached, is that identity-formation begins long before the legal age of adulthood. This is the age typically chosen by those clinics who profess willingness to facilitate contact as the acceptable time for first offspring-donor contact, strictly out of liability concerns; the age of 18 is not chosen because it is the healthiest age for offspring to find out where half of their genetics came from. Theorists on identity formation, such as Erik Erikson, state that the most significant period of identity formation is adolescence – years before legal adulthood (Brogan, 2009). Curiosity about donors and half-siblings has already been expressed by tens of thousands of donor-conceived people desiring to know their first-degree genetic relatives long before the age of 18 (DSR).
At The Ethical Sperm Bank, donor contracts would state that donors are required to maintain a posting on the Donor Sibling Registry (DSR), a 501c(3) charity helping more than twelve thousand five hundred donor-conceived people to establish mutual consent contact with both donors and half-siblings since 2000. This would provide donors the ability to connect, share and update information with families, and respond to personal messages. Using the system provides a sense of empowerment and safety to users as they can have complete control over all sharing of information, thereby safely connecting with donors/offspring/half-siblings and taking the process as slowly as is comfortable.
Families and donors on the DSR are anonymous to each other until they voluntarily share personal contact information with each other. This system is currently being utilized and promoted by many egg donation clinics and agencies. Should the donor refuse all contact with his offspring, he would be in breach of contract, and legal consequences would follow.
Similarly, the intended parents would sign a contract stipulating that they will also open a DSR account and add their posting when the child is born. Their contract would require that they not restrict their child from knowing of his or her genetic origins or making contact with the donor/siblings. Obstructing the prescribed process would be considered a breach of contract. As an added benefit, The Ethical Sperm Bank would maintain updated contact information for all donors and families and fulfill requests in an honest and efficacious way.
Besides mandatory posting on the DSR, donors and recipients would have the option of also signing a contract mandating that donors must meet their offspring in person at least once before the age of 10 (before or around the start of puberty), once more between the ages of 10 and 18 (for continued identity formation and development of self-knowledge through the teen years), and on any number of additional occasions if mutually desired. Evidence that the two required meetings occurred would need to be submitted to the clinic, in the forms of a photograph or video and letters from both parties.
The fact that donors relinquish all parental rights and responsibilities toward their genetic offspring, as per standard legal practice, would give parents peace of mind and relieve any fears over losing their child to the donor. The donor would also agree not to intrude upon the family’s private lives, or be involved in parenting without the parents’ express permission. In turn, the family would agree not to contact the donors’ family, friends, employers, or other acquaintances, or publicize the nature of the donation without express permission from the donor.
The intended parents would be educated on the inherent desire, benefits, and importance of a person’s right to know the identity of both biological parents and would give informed consent before proceeding with insemination. Any intended parent who does not agree to the terms would be disqualified from the program. But, because the practices and philosophy of the clinic would be well-publicized and displayed, only parents who are open to this way of raising their donor-conceived child would likely consider working with the clinic in the first place. As greater public awareness develops on this issue, the demand for such practices may rise over time.
Recording and Reporting Births
The second major difference from existing U.S. sperm banks is that The Ethical Sperm Bank would conscientiously record and openly report the number of live births per donor. This practice could foster greater responsibility because it would enable the bank to accurately limit the numbers of births per donor and give parents and offspring an idea of how many half-siblings to expect. Parents too may naturally veer away from creating a scenario of excessive numbers upon seeing that a donor already has numerous offspring.
Careful limiting of the numbers, guided by research, would allow for the avoidance of consanguinity and social overwhelm on the part of donors and offspring; there would be a lower chance of half-siblings, cousins, or other unwitting relatives dating each other and becoming physically intimate, and donors and siblings would be less likely to feel the need to meet a challengingly high number of relatives. Most clinics do not accurately track births and, without such tracking, no consistent limits can be placed on births per donor. At the time of writing, the largest half sibling group on the DSR hovers around 200, and the donor listed on the DSR with the most offspring connections has 75 of them (DSR). There may be cases of even higher numbers.
Genetic and Medical Testing
Thirdly, The Ethical Sperm Bank would carry out comprehensive genetic testing on both recipients and donors, and conduct medical examinations to avoid, at all costs, the creation of offspring with serious diseases or health conditions. Many existing clinics claim to do so, but news stories attest to the fact that this practice is neither thorough nor comprehensive at all clinics. Currently, some clinics test some donors for some diseases, apart from the FDA’s mandated practice of STD testing. Parents should know what they are getting into, medically speaking, when they choose a specific donor. For a clinic or donor to hide a condition that the donor may pass down is unethical and potentially tragic.
Additionally, sperm recipients should have complete information available about their own genetics to make sure they are compatible with their donor’s genetics, particularly to be sure that they are not both carriers of the same problematic recessive gene(s). Knowledge of inherited physiological and psychological predispositions can be a significant element in a person’s healthcare, particularly in preventative healthcare.
Currently, there is little to no medical follow-up with donors, and information is rarely shared and updated with families. Sperm banks tend not to have records on all the families with children from a particular donor, exacerbating the situation. Families only have a snapshot of one day in the life of a healthy donor’s self-reported medical information, with no idea of what has occurred after that date. Because many medical and genetic issues are adult-onset and the medical issues of a donor’s offspring are relevant to multiple parties, the importance of establishing contact with a donor to ensure a free-flow of updated medical information cannot be overstated. Every family that includes children from a donor with a serious medical condition needs to be updated with this information so that the appropriate medical screenings and treatments for the children can be sought.
At the time of writing, existing sperm banks offer only anonymous donors or both anonymous and “open” donors. The latter claim can be misleading, since sperm banks often fail to follow-up on requests for contact, tell families that donors who were chosen as “open” are now anonymous, or claim to not be able to reach the donor 18 years after donation. And banks claim that intended parents continue to request anonymous donors, leading them to provide that which is in demand. In other words, they want to make sure business is good by meeting the desires of their clients. Therefore, they refuse to drop anonymous donation as an offering. We know that, when intended parents are properly educated and counseled on the psychological need of knowing one’s genetic origins, they will naturally choose to do what’s best for their child, putting their own fears aside.
Currently, most clinics do not emphasize the psychological well-being of their service’s non-consenting “products.” The reason is that, until now, the focus has been on the rights of the clinics to sell gametes and prosper, the right of a parent to have a child, and the right of a donor to remain anonymous. Now is the time for the needs and rights of donor-conceived people to not only become a part of this conversation, but to become first and foremost in this conversation. Only they can provide an accurate understanding of their own experiences – not the conjecture of detached medical professionals or unknowing parents. The Ethical Sperm Bank would require this child-centered focus of all its clients.
The reproductive medicine industry has claimed that banning anonymous donation would decrease the numbers of available gamete donors. While this has not been true in countries such as the UK, it is certainly a possibility here in the U.S. We currently do not have enough organ donors in the U.S., but that does not give us the right to procure these organs through unethical or illegal (payment) methodologies. The case may be that, sometimes, in the name of ethics, there just might not be enough donors. The end does not always justify the means, and anonymous donation is not ethically justifiable as a means for parents to form a family and for clinics to make profits.
There will likely still be some intended parents who would rather take what might appear as the path of least resistance, based on their own fears and lack of education, and for their own convenience and comfort. But the growing cultural movement toward openness with one’s children, along with adequate counseling and education, will eventually place pressure on such parents to do the right thing. These are the only solutions in the absence of government regulation. Perhaps in time and as public pressure mounts, regulation will follow. Either way, The Ethical Sperm Bank is an idea whose time has come.
Brogan, R. (2009). Major processes in identity development. Published on education.com. Retrieved online July 17, 2015 at http://www.education.com/reference/article/identity-development/
Donor Sibling Registry (DSR) (2015). 15th Year Information Booklet. Retrieved online July 17, 2015 at https://www.facebook.com/download/395409610650666/Law%20School% 20Powerpoint%20FINAL.pdf
Originally published by The Huffington Post