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 before the legal age of adulthood. This is the age typically chosen by those clinics who profess a 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 501(c)(3) charity helping more than 12,500 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 this system provides a sense of empowerment and safety to users since 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 a donor refuse all contact with their offspring, they 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 donor’s 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 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.

Concluding Thoughts

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.

References

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

The Donor Sibling Registry’s reach is worldwide. In June we had new members joining from the UK, Israel, Canada, Australia, France, Norway, Denmark, Spain, & Sweden. These families used major U.S. sperm banks that ship internationally, and also small clinics in their respective countries. Getting these countries to educate families and donors so that they know about connecting on the DSR at any time (not only after children are 18) has been challenging. Yesterday I heard from 2 UK families who had no idea that they could connect on the DSR after using a London clinic.

We have facilitated half-sibling and donor/offspring matches in Australia, Austria, Belgium, Bolivia, Brazil, Canada, Cayman Islands, Chile, China, Cyprus, Denmark, Dominican Republic, Estonia, Finland, France, Germany, Greece, Haiti, Hong Kong, Iceland, Ireland, Israel, Italy, Japan, Kenya, Liechtenstein, Luxembourg, Malta, Mexico, New Zealand, Norway, Philippines, Puerto Rico, Russia, S. Africa, S. Korea, Spain, Sweden, Switzerland, Taiwan, Tanzania, The Netherlands, Turkey, the USA, and the UK.

1. I was told last year (after exhausting attempts to get information from CCB) that my sperm donor had passed away about five years ago. I had a gut feeling that he had passed before I was even told, so it wasn’t a total shock. My gut feeling thinks it is a car accident. It will be interesting if I EVER find out. However, I still wanted to know how he died and CCB said they couldn’t tell me that information. If the man is dead, what damage could be done? I only wanted to know for curiosity’s sake and for health reasons. Also, if he is really dead I want to know if I have any half-siblings who also might have reported a pregnancy with his sperm. I feel everyone’s frustrations and whirlwind of emotions in dealing with the legalities of the industry. I hope that laws will be changed in the future, allowing easier access to this information. I know very little about him, but what I do know is posted on the DSR in hopes that a half-sibling or someone will come across it. 

C’mon, California Cryobank. This young woman’s biological father has passed away, and you won’t release information to her about the cause of death? As if the cause of death of her biological father doesn’t matter to her both medically and emotionally? You won’t help her connect with any living relatives of the donor who might be overjoyed to know that there are children out there that he passed his genes to? (We have parents of deceased donors on the DSR who long to know the children their son or daughter helped to create). This situation should reach beyond your “policies” and allow for compassion and human decency.

2. My worst nightmare as an SMC was losing my job (which happened), but what we are going through is worse. Since I can remember, I have always waved off most of life’s difficulties, saying, “This is not a problem. A child with cancer, now that would be a real problem.” When I first heard the bad news from our doctor, one week after celebrating my twins’ 6th birthday, I was so devastated that I wanted to disappear. I don’t mean suicide; I am well aware that I am fully responsible for the two children I brought to life. I mean that I wanted to curl up into a cocoon and vanish, so I would not have to see my child go through all that was coming. People kept saying, “Be strong,” and I thought that was ridiculous. I chose to be an SMC and gave birth to twin boys at age 33, got a Ph.D., lost a job and a career and built it up again, lost my house in the process, and have always found the way to keep ongoing. I have been strong my entire life but I could not be strong for this. No one could!

My son’s biopsy surgery was halted because the swollen node on his neck had spread all over his chest, his trachea, his heart, and pretty much through every lymph node in his body. The anesthesiologist was concerned because he had a metabolic disorder so he could not have lipid-based anesthesia and the chest mass made it dangerous for her to use general anesthesia because his lungs could collapse. To use her own words, “A simple biopsy could be catastrophic” for my son.

Not for the first time, I wished I had more information about my twins’ genes. The biopsy was finally performed under a strange type of anesthesia that causes hallucinations. Then the oncologist called me and my family to a private room. I knew.

“Precursor T-cell Lymphoma/Leukemia,” and it was all over his little body, including his blood and bone marrow.

After the initial shock, some of my first concerns were, “Is his twin at risk?” and “Will my son ever get to meet his genetic dad?”

My son had been asking to meet his genetic dad since he was three. At that point, I had two reasons for contacting CCB. In addition to providing more information to my child, I also wanted to know if there were cases of metabolic conditions or autism in his family, since there were none in mine. I found out about my sons’ metabolic condition because by age 2 yrs it was obvious they had speech delays. One therapist referred me to a doctor, the doctor to another specialist, and so on, and all those times I had to repeat over and over, “I don’t know half of my children’s health history, but I will try to find out more.”

I contacted CCB and they were adamant about not contacting the donor or providing me with information about him, going as far as saying that they discouraged contact among donor families and refusing to recommend the Donor Sibling Registry (DSR) to a donor because there was no way to prove that the donor was who he claimed to be, and their anonymity had to be protected as promised above all things until the child turned 18. It made me feel as if I was seeking something forbidden, sinful, and illegal, which I know very well is not the case. My children have an innate right to learn about their origins. Even if they are under 18, they feel a connection to this stranger and so do I.

So I continued to argue my point with the CCB representative, until my insistence led him to transfer me to a genetic specialist. Initially, the genetic specialist tried to be nice, but as our conversation kept going in circles my A-type temper escalated. Eventually it became time for both to give in and meet each other halfway. I accepted that I could not contact the donor and they agreed that they could contact him themselves, to inquire further about his health and bring him in for more testing. So I let them contact him and I waited for a response. And I waited. I spoke and emailed the genetic specialist again a few days later, then a few weeks later, then every few months. I knew it could take some time, that the ball was now in the donor’s court, and that I had to accept his choice, that he might not be ready, but I had no idea how long it could take. The genetic specialist at CCB kept saying the donor had not contacted them back.

When my boys were 3 yrs old a speech therapist and an ENT recommended they get ear tubes. That was their first surgery, the first time an anesthesiologist needed genetic information to choose the correct anesthesia. My educational background includes enough physiology and medicine that I know the dangers related to anesthesia, and some of those dangers are very much genetic. I emailed CCB with more urgency, but obtained the same reply, “The donor has not contacted us.”

By the time my boys were 6 yrs old I had stopped contacting CCB on a regular basis. I had probably contacted them months or even a year before my son was diagnosed with cancer.

I have been in touch with a group of about 12 families of siblings (a total of 21 children) since my boys were 1 yr old. On Facebook we exchange pictures, health information, and watch the children as they grow. The children meet through Skype and the families that live close by meet in person. We are an extended family. I kept them in touch of my son’s condition as it progressed, from the time I thought it was a simple throat infection to the moment his biopsy results came back. They were devastated, as if it had happened to their child, as if their children had the same probability of having the same diagnosis as mine. I once again contacted CCB, this time in tears.

"One of my twins was diagnosed with cancer yesterday. I wanted to report this as part of the medical conditions and ask that now more than ever please, look to contact the donor. I would like him to know that my boys exist, that they are wonderful and beautiful and to give him the chance of getting to know them NOW. 

I know he was probably a student and has now moved and the only email in record might be his student email. Please, do EVERYTHING in your power to contact him. 

We are in the hospital right now and will be for at least four weeks, but as soon as I can get to a printer or pen and paper, I will send that letter to the person you mentioned before. What I ask meanwhile is to get an accurate contact information from him. I want to give both my son and the donor a chance at knowing about each other.

We are still dealing with the metabolic disorder and speech delay (educational autism for one of my boys) but none of those things were life threatening. This new condition is. 

Please, do everything in your power to make sure he is contacted, in person."

Their response was that the donor could only be contacted by the child when he turned 18, and that he would be informed about the medical condition during his next routine update.

Frustrated, sad, and overwhelmed with the demands of my son’s new condition, I stopped inquiring.

C’mon, California Cryobank. This mom is dealing with a very sick child, and you should be doing everything in your power to notify this donor (this medical information might matter to him if he has or will have his own children), and help the mom get all updated medical information. The donor needs to be given the opportunity to connect with this family. We know CCB donors who have never been contacted for your “routine update,” so what does that even mean? If this donor has not responded after 6 years, how do you intend to provide information to the thousands of donor offspring who are thinking they will have the opportunity to connect with their donor when they are 18? This is a medical emergency and again, compassion and human decency should override your “policies.” The “policies” should not just be about your own liability and protecting the anonymity of donors. They should also be inclusive of the best interests and the rights of the families, particularly the donor-conceived children.

And shame on you for not properly educating donors and recipients about the DSR. It is on the DSR that many families have been able to share and update urgent medical information that they would have no way to do otherwise. It is on the DSR that more than 12,275* families and donors have established contact and made lifelong connections, friendships, and relationships, enriching each other’s lives in ways we never could have imagined.

*3,400 people are posted on the DSR under California Cryobank. 3,045 of these people have connected with half-siblings on the DSR and another 230 are CCB donors and offspring (most under 18) who have connected. Many more have connected with CCB donors who are not posted on the DSR, since no donors are “anonymous” anymore with DNA testing and Google.