The DSR Files an FDA Citizen’s Petition

We filed a “Citizen’s Petition” to the FDA, and it’s now available for people to add comments. Please, add your comments, as the more we get, the better our chances of accomplishing something (anything….even a further conversation with the FDA would be considered success). https://www.regulations.gov/docket?D=FDA-2017-P-0052

From my FDA contact: Good Morning Wendy,

I’ve attached your acknowledgement receipt for the petition. Its docket number is officially FDA-2017-P-0052.

You may view or comment on the petition through www.regulations.gov here is the link to your petition: https://www.regulations.gov/searchResults…

I have sent the petition to the FDA’s Center for Biologics Evaluation and Research (CBER). Per regulation the center has 180 days to respond to you about this petition. That response may be a decision or an interim response. We won’t likely receive an update before that time unless the center has questions for you. In that case, they will contact you directly.

A few examples of initial public comments:

“Our cryobank has been unable or unwilling to locate our “identity release” donor for 6 months now, despite all requirements/paperwork being in order, and does not return phone calls or emails regarding the status of our request to contact the donor.
However, with DNA testing we were able to locate the donor ourselves, only to learn that some of the original information we were provided by the cryobank was incorrect, including identity release status, ethnicity/religion, college information, SAT scores, and certain health information. This industry needs to be regulated so that donor information is factually correct and that the cryobanks are being forthright and honest in their dealings with clients.”

“The United States is one of the only developed countries on earth that is lacking crucial regulation and oversight of the artificial reproduction industry. There is ample research supporting the negative effects that this lack of regulation continues to cause. The FDA has a responsibility to put common sense regulations in place to ensure the safe and ethical creation of human lives by donor conception.”

“I strongly support additional review of the donor gamete industry. I believe the FDA should engage in further investigation of the business of egg, sperm, and embryo donation as a basis for developing further regulation and oversight. As an academic who has studied and written articles and books about the fertility industry, I strongly urge you to undertake additional review. Thank you.​”

​“I reported to the sperm bank that my child was diagnosed with cancer (lymphoma/leukemia) the same week of his diagnosis and provided proof, so they could report it back to the donor and to the other families who had used the same donor. Almost two years later, none of the 11 families I am in contact with have been notified about my son’s condition.”

And I also submitted a comment:

Recent input from families who used California Cryobank  (from the DSR’s Secret Facebook page, January 2017). This information illustrates the dishonest manner in which sperm banks (California Cryobank is not unique in this respect) disseminate information about limits on numbers of offspring for any one sperm donor:

“They told me in 2011 it was limited to 20 family units but they are now saying it has increased to between 25 and 30 family units.”
“In 2011 CCB also told me that they limit families of open id donors to 20 and anonymous donors to 25. ”
“Back in 2004 I was told that each donor had 10 vials and that was it. ”
“When I used CCB in 1999 they told me limited to 30 families- as of right now there are 30 kids.
“In about 1990 they told me ten. I guess it just depends on who answers the phone!”
“In 1991 they said 1 or 2 births was the limit.”
“In 2005 we were told the limit per donor was ten families ”
“In 2010, when we chose our CCB donor, we were told 10 families max.”

Note: When a prospective donor called CCB last summer and asked this question: “What is the maximum number of children that you allow per donor? California Cryobank told the prospective donor, “12 to 15 family units.”

 

 

 

 

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Sperm and Egg Donation: 10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You

10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You

1. Most donors* and recipients are not properly educated, counseled, or informed beforehand about the needs and rights of the children they are helping to create. This includes the importance of connecting with families to share and update medical information, and the innate desire of donor conceived people to know about their first-degree genetic relatives.

2. There is no comprehensive medical and genetic testing conducted by clinics and sperm banks. In the US the FDA only mandates for STD testing and for a handful of other diseases. Some facilities test some donors for some diseases. Testing for STD’s does nothing to prevent transmission of genetic illness. Proper genetic testing of all donors is critical. Hundreds of medical and genetic issues have been reported to the Donor Sibling Registry, many of them hereditary.

3. There is little to no regulation or oversight of the US reproductive medicine industry, which ships sperm to over 40 countries around the world (so this is a global issue). This industry is not required to maintain or update records regarding genetic disease transmitted to donor offspring. Information about inherited physiological and psychological predispositions are a significant element in obtaining appropriate medical care, particularly in preventative health care including screenings and preventative medicine. Examples: genetic predisposition for heart diseasemental illness, or Cystic Fibrosis. A donor’s medical profile is merely a self-reported family health history, along with a snap shot of one day in the life of a healthy young adult. 84% of surveyed sperm donors and 97% of surveyed egg donors were never contacted for medical updates.

4. No accurate record keeping exists about how many offspring are conceived for any one donor. Records, if any are kept, are incomplete regarding the number of offspring created from each donor, as all reporting is voluntary. There are many large cohorts of half-siblings, some now as large as 200. If urgent medical issues arise, families can not then be notified. Many families who are on file with the sperm banks claim that they were never notified about medical and genetic illness reported to sperm banks by donors and by families who used the same donor: they learn about the genetic and medical issues by connecting with other families on the DSR.

5. Around three quarters of surveyed donor offspring advise that prospective parents do not use anonymous donors. Many countries have banned anonymous donation and we all need to ask the question “what is in the best interests of the child to be born?” “Anonymity” is never the answer. Many heartfelt stories and testimonials by donor offspring have been reported to the DSR. Many parents use donor conception instead of adoption because a genetic connection is important to them, but then negate the importance of that very same genetic connection when it involves their child’s relationship to the “donor”, the other half of their child’s genetic family, ancestry and medical history.

6. Many donor conceived children long to connect with their half siblings and their donors long before they are 18. 18 is an arbitrary number set by clinics and sperm banks to protect their own financial liability. This age limit is not backed up by any psychological research. Quite to the contrary, research has shown that many wish to connect, and have made successful connections, long before the age of 18. Thousands have been doing so on the Donor Sibling Registry for more than 16 years.Many egg clinics (not one sperm bank) have been connecting donors and parents on the DSR (anonymously) from pregnancy or birth for years. This allows parents and donors to share and update medical information right from the start, and it allows children to have access to their biological parents from the moment they start asking questions.

7. DNA: Donors Not Anonymous. Anonymity is a thing of the past and shouldn’t be promised to any donor or to any prospective parent. Sperm banks and egg clinics need to stop the fallacy of selling “anonymous” donors. Donor conceived people have been locating their biological parents via DNA testing (along with Google and social media) since 2005, as reported in New Scientist Magazine, so this is not news. Donors do not need to test their own DNA in order to be easily found by offspring and/or their parents, and there is no law prohibiting contact. Donors must be willing to be known by any offspring they help to create – and long before offspring turn 18.

8. Because of this end to guaranteed anonymity, nondisclosure is no longer an option. Many people who swabbed their cheeks to learn more about their ancestry and family tree have been shocked to find out that they are not genetically related to one of their parents, because their parents used a donor, and kept it a secret. Many have also been shocked to connect with half siblings. Finding out in this way that your parents have not been honest can wreak havoc on a donor offspring’s sense of trust and stability in the family. If you are a parent who has yet to tell your donor conceived child that they were created with the help of a donor, now would be the time to have that conversation, and we can help with that. It’s never too late to tell.

Family secrets can be toxic, and your donor conceived child has a right to know about the methodology of their conception, about their medical background, and about their ancestry. If parents have not told, there is usually some grief associated with infertility that is unresolved, or there is an unfounded fear about a non-bio parent’s relationship with the child being negatively affected by the truth coming out.

Parents: This shouldn’t be about your unresolved grief, your hesitations, or your fears. This should be about what’s in the best interests of your child, and their right to the truth about themselves, their medical background, their ancestry, and their genetic relatives. After telling (or after your children find out via DNA testing), please do not ask your children to keep the “secret”. This may have been your secret, but it shouldn’t be theirs. This type of response could cause unnecessary resentment, anger, and upset. Secrecy implies shame, and donor offspring have nothing to be ashamed of, most certainly not the methodology of their conception. Get yourself some counseling to help work through your unresolved grief, fear, or shame so that you don’t pass it along to your children. You are, and always will be your child’s mom or dad. You can work on becoming a more confident parent, secure in the knowledge that your child knowing the truth won’t rattle the strong parental foundation that you have built.

9. Telling is just the beginning. Many parents think that just because they have told their child about his/her origins, that this will be enough. Many then minimize the importance of the “donor”, thinking that because they don’t feel DNA is important, then their child shouldn’t either. Parents need to know that their child may view this invisible one half of their DNA to be a very important part of their identity and they may feel an urgency about gathering information and also connecting with their previously unknown genetic relatives. DNA isn’t the only way to make a family, but the importance of familial DNA connections can’t be denied. Honor your child’s curiosity, and let them know that they have your full support as they venture out for more information. Don’t behave in a way that forces your child to search for answers behind your back, as that can only create more resentment. They need you to be on their team.

10. The choices you make early on about creating your family with a donor will affect your donor conceived child for many decades to come. Try to think beyond your own needs, and educate yourself about what we now know to be true for donor conceived people.

The Donor Sibling Registry (DSR) is a US based, global registry with a mission of connecting, educating, and supporting all those in the “donor family”. The 501(c)3 non-profit organization facilitates mutual consent contact among donors, recipients and offspring, so that they can share important medical information, and explore new relationships. Since it’s inception in 2000, the DSR has helped to connect almost 14,000 of its 52,500 members with their first-degree genetic relatives.

* No one is “donating” anything, as all eggs and sperm are sold.

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FINDING OUR PEOPLE: Wendy and Ryan Kramer’s Story by Ellen Glazer

As someone inveterately curious about people’s lives, I hit “pay dirt” recently. Not only did I get to hear a family story in some detail, but it was not “just any” family story. My “pay dirt” took me to a series of interviews with Wendy Kramer. I had the incredible pleasure of hearing about her experiences as a mom helping her son, Ryan find his people. As the search unfolded, it was clear that these were Wendy’s people as well. Here is a bit about why we had the interviews and how they worked.
First the why…For many years the DSR website has received and shared family stories of search, connection, kinship redefined. Countless stories have been offered, but one has remained largely in the background. I know that as a board member and reader of the book Finding Our Families: A First-of-Its-Kind Book For Donor Conceived People and Their Families, I knew bits and pieces of Wendy and Ryan’s story, but I had no sense of a time line, of how much—if at all—the website assisted Ryan in his personal search, about what –if any—relationships Ryan had with genetic siblings, his donor, extended family. There were pieces of information but I had lots of questions. Admittedly, I’m a family story junkie, but in this instance, I was pretty sure I was not alone in my curiosity. From my perspective, this was a story worth telling and long overdue.
Now the how…This was the fun part! I don’t watch TV, but have heard from so many others of the thrill of moving from episode to episode of an exciting and engaging series. Who among us has not known –or been—someone tethered to Mad Men or Orange is the New Black. Over the course of five or six weeks, I had my own thrill of going episode to episode: for me it was the Wendy and Ryan story.
I suppose that Wendy and I could have covered the Kramer’s story in one long, intense phone call but that wouldn’t have worked for me. Instead I needed to take each episode in, write it up, marinate on what I’d learned and then move on. It was clear that each twist and turn in Ryan and Wendy’s journey taught them new lessons about family and that these lessons were well worth passing on to others. I wanted to not only hear this fascinating story but to make sense of it. And so it was to this end that Wendy and I spoke once each week for about an hour over five week span. I remember looking forward to each call, eager to find out “what happened next” and how it was all unfolding.
Our conversations continued until the story was current and there was nothing more to tell—at least not yet. Hopefully Wendy will share new chapters in their story as they unfold and I will have the opportunity—I hope—to add them to the narrative you will see on the DSR website. For now, I hope that you will find Finding Our People (the link to the pdf can be found here, on the DSR’s Board Member Page) as moving and compelling as I did. It more than satisfied this family story junkie.
Ellen Glazer, November 2016
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Telling Early, Very Early by Ellen S. Glazer, LICSW

When people come to me for “donor counseling,” I begin by asking them what would be helpful. Almost always, the response is the same, “We’re wondering what would be a good age to tell our future child about the donor?” This wording, their tone and accompanying facial expressions all tell me that these future parents are frightened. Much as they long for a successful pregnancy, they fear that it will be followed –at some point–by difficult and painful conversations with their child.

In an earlier DSR blog I tried to turn this fear on its head and suggest that conversations with donor conceived children offer wonderful opportunities for proud storytelling. But when does that storytelling begin? And how do parents begin the conversation? My advice is pretty consistent and shared—I think—by others experienced with donor conception. Tell early. Tell naturally. Tell before your child can begin to understand.

There are several reasons why telling early makes sense. Here are a few “top liners”…

There will be no “moment of telling.” If you talk with your child openly and naturally from the time she is an infant, you avoid the burdens that come with a “moment of telling.” Your child will grow up with this knowledge and it will be woven into his identity from a young age. And if you speak joyfully and with pride, as I have suggested in my Storytelling blog, your child’s feelings about this information will mirror your happiness. I’d expect something like this to go through his little mind, “My parents look and sound so happy when they talk about how I was born. I can tell I made them happy.”Another reason for telling early relates to storytelling. If you subscribe to my “proud storytellers” outlook, then you will want to tell the story in its entirety from the start. The story begins long before your child was conceived, let alone born. It begins in your own family and if you have a partner, in his/her family and in your union. It is all one story and now you are weaving the donor into it. Children love to hear stories and they especially enjoy stories about themselves. You will be treating them to even more—stories about you and your families. Your early conversations will begin to root them in your families and shared history.

Next, let’s focus your feelings: it’s simply easier and more comfortable to begin the conversation when your child is too young to understand. Many parents call it “practice time.” They appreciate being able to separate their own lingering feelings of loss and disappointment from their child’s experience, reminding themselves that for their child, donor conception is in no way associated with negative feelings. This practice time helps many parents rid themselves of their own negativity and move, more securely and authentically, to a place of confidence and pride.

Finally, telling early avoids any risks of procrastination. You might ask, ”Does it really matter whether we tell our child at 6 months or at 18 months?” If the goal is to have a child who “always knew,” you can—I think—safely tell him anytime up to 2 or 3 years of age. The problem, I’ve found, is that once a child is verbal, parents who have yet begun conversations, are prone to delay telling. Some rationalize it, saying to themselves, “this is not a good time.” Others simply avoid the subject. “We just keep forgetting,” they may say.

Telling early should not be confused with telling often. Just as there are parents who avoid, delay, deny, there are others who over-emphasize. Since one of the reasons for telling early is that you don’t want your child to feel different –at least not in a negative way—you don’t want to talk about it to the point of magnifying differences. Children will surely pick up on this. A parent who perseverates about donor conception can generate self-esteem issues as significant as one who waits until a child is much older to tell.

Babies babble. Parents can babble too. Babies gurgle and coo. Parents can gurgle and coo too. My best advice is to join your child when he is still a baby. Yes, it may sound at the start like foolish babbling but clear communication will take shape over time. Before it does, you will be building your self-confidence, rooting your child in her proud history and setting the stage for a lifetime of open, honest conversations about matters big and small.

 

 

 

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California Cryobank Discourages Donors From Posting on the DSR

For those of you who used California Cryobank, and wonder why your donor hasn’t yet registered on the DSR, here’s a possible reason why: A former California Cryobank donor just emailed me about what CCB had just told him about the DSR. He said, “…they were quite strong in their position that I should NOT register [on the DSR] bc there are likely errors with people putting wrong donor id, or even fakes.. so that if I register, CBank says there’s more than a slim chance I’d be reaching out or opening up to people not really offspring of mine.” If you used CCB or are a CCB offspring, I encourage you to let CCB know how you feel about them discouraging donors from posting and connecting on the DSR.

This from the sperm bank who has been known to delete urgent medical information from a donors profile?  They are the ones who have acted unethical and irresponsible. Not just my personal experience, but check out the user comments for CCB on our “Which Sperm Bank” page of the DSR.

We have been operating since 2000, long before CCB ever thought about having a registry. We spend many thousands of dollars each year to maintain and protect our website and our member’s privacy. We have successfully connected more than 13,200 people, and just this week hit 50,000 members. In all that time, and through all those members, we had one single donor impostor, a couple of years ago. I caught him within the first 24 hours. Certainly not worthy of negating our 16 years of hard work and thousands of successful connections!

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Proud Storytellers- A Guest Blog Post from Ellen Glazer

“We cannot know who we really are until we know the stories of our lives.”

                                    Daniel Mendelsohn in The Lost: The Search for Six of Six Million

 

“Do you think we really need to tell our child?” This is a question I hear often from people considering or pursuing egg or sperm donation. Many feel beaten down by years of infertility and want to move on to parenthood feeling confident and secure in their authenticity as parents. They fear that conversations with their children about donor conception will undermine their relationships with these long awaited, cherished children.

For many years, my response to the question was always the same. I took a deep breath, went looking for my most compassionate voice and tried to gently tell them why talking with their child was something they needed to do. I’ll admit that it probably came off as a bit of a lecture, with me cautioning them on the hazards of secrecy. Somehow people took note of what I said and as time went on, they began to come back to me with accounts of the conversations they had with their children. These accounts were sweet, poignant, wise, funny, tender, playful and inspiring. They were never sad or mad or ugly in any way. For me, a light bulb went off: the very conversations that parents feared most were actually not-to-be-missed opportunities.

Shortly after the light bulb went off, I consulted an old friend who is a distinguished child psychotherapist. I said nothing to her about the questions parents ask nor of my responses to them. I simply asked her if she might have any advice to someone who was a parent through donor conception. Without missing a beat she replied, “The parents need to love the story and their children need to know that their parents love the story.”

So how do parents love the story? Many of you come to donor conception after years of disappointment. Your efforts to start or expand your family may have included several failed IVF attempts. Along the way, you’ve been told you have “bad eggs,” or you are “a poor responder” or you “failed the cycle.” It is hard to come to donor conception feeling great about yourselves and about the process. However, it is important to remember that there is another side of things: your future child’s perspective. Try to remember, as you move forward, that your child does not have to experience loss.

The story that you will tell your child is the only story your child will know. You are the authors of that story and you have the opportunity to write it well and tell it proudly. Yours can be a story of resourcefulness and resilience, of dealing with disappointment and moving beyond it to a very positive place. You can pack into your story several important life lessons about how people can cope with adversity, compromise, collaborate and most important, grow their family. As author Bruce Feiler tells it in “The Stories that Bind Us,” (NY Times March 2013), your oscillating family narrative offers your children “a strong intergenerational self.” Feiler offers up compelling research that testifies to how being strongly rooted in one’s family history, with detailed knowledge of that history, serves young people well, especially during their teenage years. They have “the security that comes from knowing they are part of something bigger than themselves.”

I encourage people embarking upon donor conception to make decisions that they feel will set the stage for great conversations with their future child or children. For some this means having a known donor or one who is willing to be identified. For many it means joining the Donor Sibling Registry and being able to say to their child, “I knew this might be important to you.” For all, it means chronicling the story from the beginning and preserving all the memories that make the story. As author and professor Joshua Gamson writes in Modern Families, “Stories help things make sense. They put things in an order. This is how it happened. They are also the stuff from which identities are built. Creation stories, in particular, are about selfhood. ‘In telling the story of our becoming, as an individual, a nation, a people. ”

And so, to circle back to where I began, yes, for sure parents “need” to tell their children the truth about their origins. From my vantage point, this is an opportunity not a burden. All parents do right by their children by rooting them securely in their family history. Donor conception offers a helpful reminder to parents that “we cannot really know who we are until we know the stories of our lives.”

 

 

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THINKING ABOUT SELLING YOUR SPERM OR EGGS?

Springbreak

Selling your sperm or eggs means much more than paying for a spring break vacation.

This kind of irresponsible advertising (from a NY sperm bank*), only goes to show the lack of proper education given to prospective donors about decisions made now for a quick buck, that can affect them (and their families) for the rest of their lives.

If you are considering selling your sperm or eggs, are you thinking about your medical history, past, present and future?

Would you be willing to provide ongoing current medical information with respect to yourself and your immediate family? As a “donor”, it is important to consider the ongoing ramifications for any children conceived who share your DNA. If you sell your sperm this year, the sperm may be sold for many years into the future and potential mothers may keep that sperm for many years after purchase, attempting to provide their children with full biological siblings. Several families on the Donor Sibling Registry (DSR) report that they know of half siblings more than 20 years apart in age. Egg donors who donate to the new egg banks are now facing similar situations.

Should you or a member of your immediate biological family develop a health or medical issue following your initial completion of the donor interview, it would be essential that you provide this information to the sperm bank or egg clinic/agency/bank and post the information (anonymously if you’d like) on the DSR website, www.donorsiblingregistry.com, which enables donors, recipients, and offspring to make mutual consent contact, to meet each other, and also to share and update medical/genetic information.

Published research has revealed that 97% of egg donors and 84% of sperm donors have never been contacted to update their medical records, while 31% of egg donors and 23% of sperm donors report that they, or immediate family members did have medical/genetic issues that would be important to share with families.

It’s not just your looks, intellect or athletic abilities that might get passed along. Susceptibility to disease is also often inherited. For many years after your original donation, children who share your DNA may develop medical and health concerns that can only be properly addressed with your updated information. Conversely, it might be crucial for you to know about any medical issues reported by families, as you may someday have children of your own. It is also important to note that the accuracy of the medical and health history you provide to the sperm bank or egg clinic/agency/bank is crucial to the potential parents reviewing that information. Certain conditions carry genetic components that are not readily tested for, and your accurate information is vital for proper screenings, testing, and preventative care.

If you have children of your own, or plan to….

Have you considered the possibility that in this small world your children may encounter biological half-siblings?

At the present time, sperm banks and clinics do not keep, nor are they required to keep, any record of live births resulting from any specific donor. What this means for the children born with your DNA is that they may be many in numbers. Currently, the largest group of half-siblings on the DSR is around 200. The children you have now, or may have in the future, may meet your biological children born from your donations. Random meetings among half-siblings are regularly reported on the DSR. Honesty is essential. Before you donate, consider your willingness to be forthright with your children.

Are you planning on donating anonymously?

If you are planning on being an “anonymous donor” it is important to understand that because of advances in DNA testing and Internet search engines, the likelihood of your remaining “anonymous” in the future is growing smaller. Have you considered what your reaction will be if you are “found” by your biological children in the future? The children born from your donations may be curious and will want to search out their ancestry, medical backgrounds and their genetic roots. As noted above, many donors have more than 20, 50 and even more than 200 biological children.

Have you considered the possibility that you will be contacted in the future, even if your donation is anonymous? How would you respond if, one day in the future, you were asked to meet with your genetic offspring and his or her parents? You will need to think about the fact that this could be potentially disruptive to any family that you may have formed in the traditional manner.

With this in mind, would you consider registering on the DSR so that urgent information can be passed back and forth right from the start??

Please consider…

Please consider how you might feel about your donation in the future. It is likely that more than one child will come to exist as a result of your donations. These children are genetically yours; in fact, they may one day have children of their own who will be your genetic grandchildren!

Take a moment to imagine how donor offspring might feel. Many will wonder about where they got some of their physical characteristics. Or wonder about where they get their talents and personality traits. Many are extremely curious about genetic family history and ancestry. And many feel a deep longing to connect with and to know their unknown genetic parent.

Imagine your reaction if your genetic offspring found you and expressed a strong desire to connect, or if they needed a lifesaving bone marrow transplant. Please consider these issues carefully as you make your decision on whether or not to become a donor. Your actions today may have an incalculable effect on the future.

Your donation is much more than a transaction with a sperm bank or egg bank/clinic/agency.

 

*In 2015 this sperm bank gifted $100,000 to the ASRM, the organization that makes recommendations to the reproductive medicine industry. The fox watching the hen house?http://www.manhattancryobank.com/resources/media-press/

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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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