Egg Donor Medical Alert: Cooper Center for IVF.

I received this today from a former egg donor. If you used the Cooper Center for IVF between 1997-1999, or know anyone else that did, please see the postings for this clinic on the DSR. Contact Wendy if you need more information.
 
Hi Wendy,
 
I have been a member of the registry since 2004. I donated eggs in 97, 98, and 99. ​ ​
 
I am concerned about the children that may have resulted from those cycles. I have been diagnosed with Autosomal dominant polycystic kidney disease (ADPKD). I have 4 children, 2 have the disease. One does not and the youngest has not yet been tested. He is 15 and conceived from the cycle in 99. I kept 3 eggs and donated 20.
 
I contacted the clinic immediately after I found out. They completely accepted the information but did not give me any real Indication that they would relay the information.
 
I lost my mom in 2005 to aneurysm as a result of the disease.
My niece had aneurysm surgery 4 years ago. She was the youngest diagnosed with serious complications.
My sisters are both in renal failure waiting for transplants.
 
 
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One Step Forward, Two Steps Back: Moving from Fresh to Frozen Egg Donation by Ellen Glazer

Guest post by Ellen S. Glazer, LICSW, Author, “Having Your Baby Through Egg Donation”.

Over the course of several years I had the privilege of participating in many initial meetings between egg donors and their recipients. These meetings were almost always warm, optimistic encounters that transformed strangers into kin. I especially remember one recipient who seemed to float out of the room and phoned me a few minutes later to say, “I want her eggs more than I want my own.”

From my vantage point, donor-recipient meetings provided a solid foundation for many families built through egg donation. I observed that the women who had met their donors or spoken with them at length by phone, felt confident and optimistic during pregnancy. They seemed to feel secure in knowing they were their child’s real, true mothers. In addition, having connected with their donor seemed to remove anxiety about where their child was coming from. In fact, that anxiety was often replaced by what I think of as the donor “add on”—the recognition that the donor brings something that is a nice and welcome contribution to the family. There was the donor with perfect pitch, the donors with a few additional inches of height, the donor with the entrepreneurial spirit that the recipient wished she had.

And so it was with a combination of fear and sadness that I “welcomed” the arrival of egg banks five or six years ago. I knew that these programs would be attractive to many women seeking donated eggs. Having the eggs “already there,” spares recipients all the time, effort, costs and anxiety that came with finding a “real live donor” who had to show up, pass all her medical and mental health screening and then go on to produce good eggs. Undoubtedly, these programs would be cost effective for recipients. (Although I did not appreciate how much the role finances would play until I began reading of “money back guarantees”).

Egg banks could have been a “win-win” option—and perhaps some will still prove to be. A woman could undergo stimulation, have her eggs retrieved and frozen. She could then be matched with a recipient couple or individual whom she could meet or talk with before consenting to the donation. Recipients could enjoy all the benefits that come from meeting their donor and still be spared the anxiety of knowing it could all fall through. Frozen banks could have been great but so far they have represented a giant step backwards—in my opinion—for egg donation.

Recent visits to the websites of leading frozen egg banks confirmed my fears that the egg banks seem to have little interest in connecting donors and recipients. In fact, they seem to regard connection as either irrelevant or something to be avoided. By contrast, the frozen banks seem more focused on offering up an assortment of genes than a real person. One program proudly tells recipients that they will receive the following about donors: Childhood photos, Audio interviews, Blood type, height, weight, build, whether pregnancies have been achieved, hair and eye color, years of education, grade point averages and SAT scores, ethnic background, occupation, interests, family medical history. With a special agreement people can sometimes arrange to receive adult photos. Fresh donor programs usually offer up several adult photos and I have known many recipients who have requested and received additional photos.

What is strikingly missing at “bank” websites is any recognition of the intimate and lasting relationship that would exist between the woman who donates and the woman who hopefully becomes a mother and maybe a grandmother and great-grandmother through her eggs. The connecting of family trees now and for generations to come goes beyond SAT scores and grade-point averages.

We are still early on in the life of egg donation. The first pregnancies through this process came in the early 1980’s. We are earlier still in the world of egg freezing. I hope that people involved in egg donation—physicians, “egg banks” and recipients will be moved—as I surely was—by the segment on CBS This Morning (January 10) that showed several sperm donor offspring enjoying a gathering with their donor. As one young woman said, “I always felt loved and wanted but something was missing before I found my donor.”

There is the opportunity for there to be a new generation of donor offspring who can grow up without that sense of something missing. I hope that some involved in the still “infancy” of egg donation will see this as an opportunity to lead the way.

 

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An Invitation to All Sperm Banks

I’d like to set a challenge to all sperm banks in the US.

I invite you to follow in the steps of many egg clinics and agencies, and offer your donors and parents the option of writing the Donor Sibling Registry into your sperm banking agreements – establishing anonymous (if desired) contact on the Donor Sibling Registry, right from the start.

The Donor Sibling Registry (DSR), is a non-profit organization that assists individuals who were conceived as a result of sperm, egg or embryo donation, and are seeking to make mutually desired contact with others with whom they share genetic ties. We facilitate contact amongst half siblings (and their parents), and also connect donors and families who wish to be in touch– oftentimes long before the children turn 18.

Since 2000, we have helped to connect more than 12,700 people on the website, and now have a total of 48,400 members, including more than 2,400 donors. One DSR sperm donor was featured this week on the CBS Sunday Morning News show meeting several of his donor offspring.

Another donor describes his heartfelt reasoning for desiring contact:

“My decision to be a donor was inspired by the blessed gift of my children. They and their half-siblings (I only know of a son and daughter) have the right to know each other. With humility, I can say that I’ve never had misgivings about being a donor and continue to desire contact without any presumptions. I sent an inquiry and personal letter to [my sperm bank], and, having since discovered the DSR, will trust the universe in this quest. As a parent of children who are the light of my life, I already feel an affinity with the parents of these children conceived in trust and love.”

We’re reaching out to people who facilitate the creation of happy families. We’d like to partner with you. Here’s why:

• As we move toward increased openness as a society, there’s a particularly strong need to stay at the forefront of the trend within the donor industry.
• 2012 published research (Reproductive BioMedicine Online) on 164 sperm donors showed that, while 84% of sperm donors have never been contacted by their sperm banks for medical updates, 23% of the donors felt they, or close family members, had medical/genetic issues that would be important to share with families. 94% were open to contact with offspring.
• Registering on the DSR is the only way for parents and donors to stay anonymous (if desired) while still establishing relationships and sharing medical info.
• It can be of equal medical importance to donors that their offspring provide updated medical information, especially as the donors build their own families.
• We now know that there is desire for earlier contact between donors and recipient families. Many appreciate the ability to establish contact and foster relationships as a child is growing up. Many think that 18 is an arbitrary age that does not meet the needs of donor offspring.
• Families often wish they could ask their donors simple questions, such as, “My son would like to know if you ever played a musical instrument?” or, “Is there any diabetes in your family?” or, “My 10 year old daughter would like to send you a father’s day message, is that ok?”
• The DSR can help by providing a valuable service to your parents and donors, and to your company – at no cost to you. (It’s a win-win-win!)

In 2015, another published study of sperm donors in Facts, Views & Vision in OB/GYN (the Scientific Journal of the Flemish Society of Obstetrics, Gynaecology & Reproductive Health), called “Sperm Donors Describe the Experience of Contact with their Donor-Conceived Offspring” revealed that most of the surveyed donors had become curious about, and had made contact with, their offspring. Almost half of the respondents now considering their donor-conceived offspring to be “like a family member”. At the same time, donors were respectful of the integrity of the family in which their offspring were raised.

What Does A Relationship With The DSR Do For Your Sperm Bank?

• CONTACT: The issue of contact between the donor and the recipient is removed from the hands and focus of the sperm bank.
• CONSENT: Since the DSR relies on mutual consent; the sperm bank doesn’t need to be worried about protecting anyone’s privacy.
• CHOICE: Each party can remain anonymous if they choose, so the decision is ultimately in the hands of those involved. Each party can decide how much information they’re comfortable sharing.
• CURRENT: The sharing and updating of medical records happens on the DSR, so the agency/clinic has less work since they have provided a tool for medical updates.
• EMPOWER: Parents and donors are empowered to set the parameters of their own relationships, without a middleman, and without waiting 18 years. Offspring have the opportunity to establish relationships with their genetic fathers while they are developing, not having to wait until they are adults.

We invite you to set precedent within the sperm banking industry. Become a leader in fully educating and supporting families and donors. If we ask, “what is in the best interests of the child being born?” the answer is never “to use anonymous donors”. Anonymity is antiquated. It is a concept of the past in the adoption community, and becoming so in sperm and egg donation as well. The desire to connect is here now, and we can move the sperm banking industry forward in an open and supportive way, acknowledging the rights and needs of donor conceived people to know about their biological parents, the rights of donors to know about children that they help to create, and the rights of parents to better serve the needs of their donor conceived children.

We look forward to working with you! We have sample contract verbiage and frequently asked questions on the DSR website to help you incorporate the DSR into your donor and parent agreements.

Some feedback from the egg donation industry:

“More and more of our recipient and donor pairs hope to sign up for the Donor Sibling Registry. We often have comments about how helpful you are as facilitator.” – Andi, Oregon Reproductive Medicine

“Each year I see more intended parents who want to make sure their child one day ”has the option” to meet their donor if they wish. As an agency I am grateful that there is a program like The Donor Sibling Registry that can be an advocate for the child, donor, and intended parents who desire this type of relationship.” Katy Encalade, Program Director, Egg Donor Solutions

“Just wanted to send a note to say how much our clinic appreciates this option for our patients. Currently our office only offers anonymous embryo donation. However, some of our patients would like a more open arrangement. Your site allows patients who trust our office and want to stay with us, to have the best of both worlds. Now they have a place where they can go to control the amount of contact they have with their donor or recipient. It’s the perfect solution for them and we are grateful you offer this option!”- Christine The Fertility Center, MI

While exploring the idea of Egg Donation to build a family there are unknown scenarios that families may encounter. It is simple for both intended parents and egg donors to consider their feelings and needs now but may not fully understand what future questions there might be. The Donor Sibling Registry allows a safe and comfortable way to allow future communication when it becomes apparent it would be beneficial to a parent, the egg donor, or a resulting child. The Registry allows all parties to ask questions, exchange medical information, and possibly meet when the time is right for each. The Donor Sibling Registry allows all individuals to move at their pace and the lifetime membership is a worthwhile investment. – Kallie Wilson, MSW, Care Coordinator, Egg Donor Solutions

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A Sperm Bank Director Speaks

https://www.dropbox.com/home?preview=20151207_133623.mp4

Unfortunately, this interview gives insight into many of the problems within the sperm banking industry. Sperm bank staff, including directors, are too often misinformed and can also be dishonest when presenting “facts” about donor anonymity, accurate record keeping, contacting donors, and numbers of donor offspring. A few notes about the interview:

1. “Folklore”? I don’t believe that the NY Times, and many other reliable news sources present “folklore” when talking about the large number of half sibling groups.
This director needs to watch the documentary about Ben, the sperm donor with 75+ offspring. I promise you, this is not “folklore”.

2. Sperm banks are only minimally regulated by the FDA. The FDA mandates testing for STD’s and a handful of other diseases. But because of lack of regulation or oversight, we have some banks testing some donors for some diseases. This particular sperm bank claims to only test for STD’s. Some of the diseases that are supposedly tested for by sperm banks, like Cystic Fibrosis, have been reported in donor offspring.

3. “We don’t disclose that… it’s on our website”?! What does that even mean. She doesn’t disclose it, but you can read it on their website?

4. “Make an attempt to find the donor….” 18 years later? How do you find a person 18 years later? The truth is, not often, as sperm banks either do not regularly reach out to their donors, or donors do not respond and are therefore not find-able almost two decades later.

5. “A lot of hype out there”. We have many published papers in peer reviewed academic journals and have had stories featured with The NY Times, CBS (we have an upcoming story on CBS Sunday Morning about a donor with more than a dozen offspring), NBC, TIME, and hundreds of other media outlets around the world.

6. Her hyperbole about comparing donor offspring to children conceived in the “backseat of a car” is ridiculous. What is that argument? A remark from a DSR parent: “What kind of ethics is this professor teaching when she uses the argument that more kids from accidental pregnancies don’t know their genetic parents as justification for denying that information to those people deliberately conceived where all the parties are known. It was an excellent example of gas lighting/ diversion of the interviewer. Instead of addressing the topic, throw the person off balance by accusing them of ignorance of something completely different.”

7. She is misinformed about donor programs “disappearing” when anonymity was banned in other countries. Certainly not in the UK, as you can see with HFEA numbers– donors have increased since 2005 when anonymity was banned. Given the fact that her sperm bank does not offer open or willing-to-be-known donors, this is not surprising. Her sperm bank’s website touts their anonymous donor program: “With over twenty-five years of service, our highly selective anonymous donor program offers over 40 donors with diverse ethnic backgrounds.”

8. She is again misinformed about SART tracking the number of donor children. SART doesn’t track “a lot of that”. There are certainly no “anonymous donor numbers” as she claims. There is no entity that requires this type of tracking, and therefore, no one knows how many donor conceived children are out there.

9. The interviewer is a Master’s student in Bioethics. (He is not affiliated with the DSR and did have permission to record the interview). Telling him that “you can skew your paper how ever you want” or that there are “a lot of unknowns and you are not qualified to judge it” was condescending. Why so defensive and arrogant?

10. Again, she needs to read the published research in peer reviewed academic journals about donor offspring. Her claim that only those on the “outside” can want known donors, is simply not true. In fact it’s quite the opposite. When we have the opportunity to properly educate and counsel prospective parents, they do not choose anonymous donors. They understand that they need to ask, “what is in the best interests of the child to be born?”, and proceed with that answer in mind.

Unfortunately, this is a lot of the attitude that I encounter at reproductive medicine conferences.

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NBC Story: 48 Donor Siblings and the ASRM

How One Girl’s Search Brought Her 48 Half Brothers and Sisters

In NBC’s 11/6/15 story about donor siblings that connected on the Donor Sibling Registry, we again hear from the spokespeople at the American Society of Reproductive Medicine (ASRM), and how utterly disconnected they are from the realities of donor family issues. Maybe that’s because the ASRM is made up of the very people that they are supposedly making recommendations for. So it’s a case of the fox watching the hen house. Without any outside regulation or oversight, it’s a case of “self-regulation” by a multi-billion dollar industry. (Where else have we seen the repercussions from a set up like that?!)

Judith Daar, the chair of ASRM’s ethics committee and a professor of law at Whittier Law School, questions whether it would be appropriate to put limits on sperm donors.

But the ASRM’s Sean Tipton doesn’t foresee the federal government establishing a sperm donor registry.

“They don’t want to spend the money, they don’t want the hassle,” says Tipton. “Before you are going to regulate people’s reproductive choices, you have to have a really good reason. I don’t think you want to jump in on a legal solution where it’s not certain what the long-term consequences would be.” “Could a similar regulation be enforced in a natural situation? Would we tell people who want very large families to restrict the number of offspring?” said Daar. “I think we would not favor the law limiting the individual’s ability to procreate naturally.”

Right, Sean, but in a “natural situation” there isn’t the possibility of creating 200+ children from one unknown person. And as far as having a “really good reason” for limits and accurate record keeping, take a look at the Donor Sibling Registry Medical page, you’ll see a lot of “good reasons” why this industry needs some sort of regulation, including comprehensive medical and genetic testing, updating and sharing of medical information, accurate record keeping on the children born from any one donor, and limits of the number of children born from one donor. The long-term consequences of establishing a more responsible industry would only help donors, donor conceived people, and their families.

Instead of pointing people to situations that are unrelated to us, the donors, offspring and parents who have used donor sperm and eggs, why not be brave enough to address the actual issue — that there is no oversight and regulation in a high profit industry that has acted irresponsibility and without ethics. Mr. Tipton has addressed the issue of regulation by saying, “..we know any regulation of that is likely to impede access and increase the cost.” This is not about regulating “people’s reproductive choices”, or a matter of money, as no one is challenging a person’s right to reproduce.

This is a different conversation, about the rights of the children this industry is helping to create. They should be able to know that there are limits on amount of half siblings they can have, as well as have access to medical information and to their own first degree genetic relatives.

Mr. Tipton tells us that the industry doesn’t want the “hassle” of creating a registry for accurate record keeping. I feel that regulation and oversight of the infertility industry is a necessity, and would only improve this broken system, and help thousands of families who have used donor eggs and sperm to create their families.

A picture of 200 random people. This picture illustrates the largest number of half siblings reported to the DSR.

2015-11-06-1446820354-5962558-200.jpg

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IVF, Test Tube Babies and Sperm Donation

Here’s one of my pet peeves: when people use the term​s “test tube babies” and “IVF” when talking about any type of assisted reproductive technology.  Particularly, methodologies that do not usually involve the use of IVF at all, like sperm donation.

Both US and international media too often confuse In Vitro Fertilization (IVF) with the general use of donor sperm via ICI or IUI : intra-cervical insemination that happens inside the body, not in a petrie dish.  The term IVF is too often used as if it applies to ​all ​who utilize donor sperm and sometimes, children born from donor sperm are all referred to as “test tube babies”.

IVF is the process of fertilization by first stimulating the ovaries to produce multiple eggs at a time, removing the eggs from the ovary (egg retrieval), manually combining an egg and sperm in a laboratory dish, and then transferring the embryo to the uterus. Most women who get pregnant via donor conception do not need to use IVF. 

While IVF is necessary with egg donation, it is only used in a minority of donor sperm inseminations​, where the woman has infertility issues​.  In our 2009 survey of 1700 Sperm Donor Recipients, 83% of women used IUI or ICI (placing sperm internally), with only 16% using IVF (using an external petrie dish) to conceive.

So for the more than four-fifths of us who used donor sperm to build our families, we did not need the use of a petrie dish, only a turkey-baster type of medical device, and therefore we just don’t have “test tube babies”.

 

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It’s OK to Have Mixed Reactions to Success Stories

Guest Post From, Ellen S. Glazer, LICSW.  

Author, “Having Your Baby Through Egg Donation”.

As a social worker counseling individuals and couples building their families through donor conception, I love reading the DSR’s “Success Stories.” They are so often testimonies to the shifting landscape of kinship and of people’s ability to pursue and nurture new forms of family. I’m not comfortable with anonymous donation and feel strongly that some measure of openness is best. However, what that “measure” might be varies—I believe—from one situation to the next and can surely change over time. My discomfort in any sort of “one size fits all” approach to openness prompts me to write this blog entry.

First, I want to say that it OK to feel uncomfortable reading “success stories.” If you come to donor conception after a long stint with infertility you likely feel vulnerable. Everything that has happened so far as served to eat away at any confidence you had about becoming or bing a parent. You long for something to work, for you to be blessed with a child you love and cherish and to feel that you are a real, true, full and forever parent. DSR “success stories,” heartwarming as they are to someone like me, could surely feed into insecurities. I feel it is important for you to know this is a natural reaction. It is also likely to be one that will diminish once you are a parent and have a little person or persons saying “mommy, mommy, mommy” all day long. I am reminded of a client who was feeling insecure when her twins were just beginning to walk and talk. She was catapulted out of this insecurity when her husband observed, “You know that if the donor walked in right now the girls would have no idea who she is and most likely, they’d run and cling to you.”

If you are considering egg, sperm or embryo donation or are already DC parents, I encourage you to see openness as a process. In my experience, it is usually not something that you can fully plan or predict or legislate in advance. Rather, it unfolds based on the particular “cast of characters” and on what is going on in their lives. I have seen situations in which people initially want no contact whatsoever and then something changes. That change might be sparked by a comment or observation from a nurse in their fertility clinic or something that the donor writes in his or her profile. Or they attend a support group and hear positive reports from others of their experiences meeting or corresponding with their donors. I remember one client whose fully open relationship with her egg donor prompted several other women to seek open donors. These were women who encountered the delightful donor –recipient duo in the clinic waiting room and said “I want what they have.”

“I want what they have” is a nice sentiment but can’t always be “operationalized.” Most egg donation agencies and cryobanks do not encourage donors to be open. Many do not even let donors know that openness is an option. Your donor might be open to openness if he/she knew it to be an option. Not knowing this, he/she is not only unlikely to initiate contact but may be guarded or reluctant if you seek it. So if you seek openness in an arrangement that was anticipated to be anonymous, you may have to take it slowly. Here’s another client example—a mom through egg donation who has never met her donor but whose goal has become “for her to be like another aunt.” She is starting to nurture this possibility through emails.

It’s also quite possible that you don’t want what they have. You may read the DSR website and blog and be convinced that you want to avoid/move away from anonymity. Still, you may startle or squirm when you read postings that say “I was found by my daughter” or “Finding my sister.” Again, it is ok to be uncomfortable with this language and maybe also the kinds of meetings they chronicle.

So….as I began, I enjoy the DSR Success Stories and endorse some openness in donor conception. However, I also recognize and respect the benefits of taking it slow, seeing how things go and exploring relationships. I hope you can feel good and confident in being open to possibilities.

 

 

 

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The Ethical Sperm Bank: An All-Open Sperm Bank. An Idea Whose Time Has Come.

http://www.huffingtonpost.com/wendy-kramer/the-ethical-sperm-bank-an_b_7841180.html

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 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 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.

Co-written with Laura Strong. Laura Strong holds a Master’s in Marriage and Family Therapy and has worked with clients for 7 years. Her specialties are couples concerns, family systems, self-esteem, and pervasive developmental disorders. She is currently creating a web business and composing numerous informative webinars. She lives with her loving spouse and sweet dogs.

 

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

 

 

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The Donor Sibling Registry’s Worldwide Reach

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 US 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 the US, UK, Australia, Austria, Belgium, Bolivia, Brazil, Canada, Cayman Islands, Cyprus, Denmark, Dominican Republic, Estonia, Finland, France, Germany, Greece, Haiti, Hong Kong, Ireland, Iceland, Israel, Italy, Kenya, Luxembourg, Malta, New Zealand, Norway, Philippines, Puerto Rico, Russia, S. Africa, S. Korea, Spain, Sweden, Switzerland, The Netherlands, and Turkey.

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C’mon California Cryobank- 2 Heartbreaking Stories

Two Donor Sibling Registry posts from yesterday- one from an offspring and one from a mom, both about California Cryobank:

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 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 a 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 a SMC and gave birth to twin boys at age 33, got a PhD, 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 on going. 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 2yrs it was obvious they had speech delay. One therapist recommended me to a doctor, a 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 whom 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 let 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 half way. 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 on 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 3yrs 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 1yr 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 life long connections, friendships and relationships, enriching each others 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, as no donors are “anonymous” anymore with DNA testing and Google.

 

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