The L.A. Gay and Lesbian Center presents on Saturday February 13th, 2010 from 8:30-11:45 am:

CREATING A FAMILY: A half day conference for prospective Lesbian, Gay, Bisexual and Transgender parents.

Preparing to start a family through donor conception

Wendy & Ryan Kramer Co-Founders of Donors Sibling Registry

Sacha Finn a local donor conceive youth and member of COLAGE (Children of Lesbians and Gays Everywhere)

Join Wendy Kramer, Ryan Kramer, and Sacha Finn to share knowledge, experiences, challenges, concerns and insights of families that have chosen the path of donor conception.  The discussion will focus on the importance of always asking the question “what is in the best interest of the child to be born” and the need for a more open forum dialog amongst the parents and children in the donor community.

Come to be the first to hear about our current research of 286 donor children born to GLBTQ parents and what we have found to be important to children conceived through donor insemination.

For more information, and to register, please email: familyservices@lagaycenter.org.

We look forward to meeting you!

The three surveys for parents are ready!

1. Recipients of Donor Sperm (gestational moms)
2. Non-bio Parents of Sperm Donor Children (moms and dads)
3. Parents of Egg Donor Children (one or both parents together can take this survey)

We really struggled with trying to have just one survey for all parents, but there were so many different
questions that just didn’t pertain to all parents, that we decided it was necessary to create three separate surveys.

We will be gathering information about choosing donors and sperm banks, pregnancies and births, raising children and
medical issues. Many of the questions included in the survey were formulated as a direct response to issues we found in the donor and offspring surveys. We have an amazing opportunity to use our collective experiences to better educate the infertility industry so that their future policies might be more influenced by the needs of us- the donor families.

I hope everyone will participate. For recipient moms with spouses/partners -  we rarely hear from the non-bio parents so please encourage your spouse/partner to participate.  We want to hear from them!

Because these surveys are a bit longer and because we know your spare time is precious,  we will be offering a random drawing of 10 cash prizes of either $100 (DSR members) and $50 (non-members) for those who complete the survey by January 31, 2010.

Survey for recipients of donor sperm:
http://www.surveymonkey.com/s/TS72J7N

Survey  for non-bio parents of sperm donor children:
http://www.surveymonkey.com/s/8RZ6ZTX

Survey for parents of egg donor children:
http://www.surveymonkey.com/s/GFHTQN3

Hi PRS, Repro Lab and Fertility Ctr. of CA Families,

I want to forward a letter that I sent to Sherron at PRS last week. I wanted to make sure that you were aware that PRS sells sperm through a Mexican clinic and that it looks like there are several PRS donors on the Mexican clinic’s list. The link: http://www.centrodefertilidad.com/catalogo.html. There are several different pages of donor lists, so make sure to look at them all. Also, just because your donor may not appear on the current list, does not mean that he hasn’t been listed in the past.  Archive.org can show you lists from prior years. For example, here is the link to a 2008 list:
http://web.archive.org/web/20080620145136/http://www.centrodefertilidad.com/catalogo.html

Given the difficulty that the sperm banking industry has had in keeping track and updating medical records of children born from donors, I see this as worrisome. Just last month a PRS donor was reported to have passed along a fatal heart condition to many of the 22 (known!) offspring he helped to conceive.

We at the DSR believe that it does matter where the sperm you buy originates from. We feel that everyone has the right to know the truth about the origins of their sperm so that they may have a chance of connecting with their half siblings and/or donors. As we have never had anyone from this Mexican clinic register on the DSR, I doubt that these families have any idea that their donors are from PRS. I also doubt that they are adequately counseled and educated about the importance of allowing children the right to be curious and search for half siblings. From what I have been told, donor conception is a closed, secretive business in Mexico . If there were to be a medical issue, or if the children wished to connect with yours as half-siblings, they would most likely be out of luck.

We know that other clinics also ship their sperm around the world. Xytex ships to Canada and Australia , but the clinics they ship to have become much better at advising people about the origins of the sperm they are purchasing. Many people from these clinics are connecting with their half siblings here in the US. Some of these clinics are actually handing out DSR brochures to their recipients. My guess is that no Mexican sperm recipients are walking out of that clinic with a DSR brochure in their hand.

This Mexican clinic was started by Repro Lab and the Fertility Ctr. of CA and we found their donors on the list too (these two banks share donors already). I have written both of these labs too, but not received a reply. PRS did reply, “For international sales, we have processes in place for the required reporting of pregnancies and their outcomes as well as informing parents of any medical issues that may arise.”

I wonder if these international “processes” are similar to the (inadequate and ineffective) ones currently in place by sperm banks in the US?

Wendy

My letter to Pacific Reproductive Services:

I just came across the website for the Center of Human Fertility in Mexico and am very surprised to see PRS donors listed in their catalog.

Do you notify PRS donors that their sperm is being exported to Mexico ? Are PRS families aware that there might be unknown matches in other places around the world? Considering that claim to keep careful tabs on offspring and recipients, are you then also keeping track of the Mexican births? How does this tie in with your limitations on the numbers of families to conceive with any one donor? Are there other countries that you export to, that we haven’t uncovered yet?

Apparently Reprolab and The Fertility Center of California also have donors listed in the Mexican catalog. How are DSR members to know who their children are related to if this type of practice takes place? How is urgent medical information to be shared?

So far, I have identified 8 of the donors on the Mexican list as PRS donors, with a total of 40 families and 72 children on our site who have used these donors. In addition, I see that one of these donors also donated at TSBC.

I look forward to your reply.

Wendy

Sent to Biogenetics, Follas/Genome Resources, Zygen, Idant Laboratories, California Cryobank, Fairfax Cryobank, Xytex, New England Cryogenic, Northwest Cryogenic, The Sperm Bank of California, Pacific Reproductive Services, and other sperm banks and clinics:

Donor Sibling Registry Health Alerts

In the wake of the recent serious health issue passed along by a PRS donor, the DSR would like to invite you (and all sperm banks) to report health issues to the Donor Sibling Registry so that we can send members to their respective sperm banks for updated information. On more than one occasion, the banks were not aware of all families that needed to be notified in regards to a serious health issue or even after the death of a donor. Many times, families “lurk” on the DSR, as they have not posted, nor have they reported their births to the sperm banks. It is crucial that we reach these families.  We do not want any children to be born with health issues that could have been prevented by a simple reporting system.

We have thousands of members who are already in touch with each other to share and update vital health information. Several sperm banks already alert us when their is a serious medical  issue or the death of a donor, but we would would like to invite all banks to participate in this sharing of information.

When a Health Alert is sent to the DSR by a sperm bank, we will promptly alert all members that have posted for that donor, as well as the ones we keep track of (thousands) who have not posted, or removed their postings. We will also alert members on our website and Yahoo Group. With hundreds of thousands of visitors to the DSR each year, we can reach a lot of people that might have used the affected donors.

We see this reporting as a necessary public service- and one that can be initiated immediately.

Sincerely,

Wendy Kramer

In response to the article on the sperm donor who passed along a serious heart defect, Donor Sibling Registry Board member, Dr. Kirk Maxey, sent this letter to the editors at JAMA:

Dear Sirs;

It is admirable to note that Dr. Maron and his coauthors recognize that unintended transmission of genetic illness through sperm donation is inadequately addressed by current US FDA guidelines. I was rather stunned by their naivety, however, on their subsequent admission that they were aware of only one documented instance of such a medical outcome.[1] In addition to the 2008 case of Fragile X to which they refer, there are numerous others. Severe Congenital Neutropenia (SCN) due to ELA2 mutation was transmitted to 5 offspring by Michigan Cryogenics donor F827 as reported by Boxer et. al in 2006.[2]. In 2004, Dutch law regulating sperm donation was reformed to outlaw anonymity, establish a central donor registry, and limit donors to 10 offspring, stimulated in part by the disclosure in 2002 that a donor in the city of Den Bosch had conceived 18 children in 13 families before being diagnosed with autosomal dominant cerebellar ataxia (ADCA), when his diagnosis had been known to physicians but kept secret since 1997. [3] In May of 1995 in California, Brittany Johnson was diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKA) inherited through her donor parent, California Cryobank donor 276, despite a clear history of kidney disease supplied on the donor family history questionnaire. ( See Johnson vs The Superior Court of Los Angeles, and references therein.)

There are no accurate records of the number of donor conceived children born each year in the US, but estimates range between 30,000 and 100,000. It should surprise no one that genetic illness is present in any population of this size. But in a tragic twist of fate, the procurement and supply of human gametes is an unregulated, profit-centered business, unlike the charitable and altruistic system used for blood products, kidneys, and virtually all other living tissue. The cloak of secrecy enacted by most sperm banks and the absence of federal regulations conspire together to insure that questions about the prevalence of inherited illness in this population cannot be answered, because the population cannot even be identified. Substantial numbers of reproductive services providers continue to counsel their patients to withhold from their offspring even the knowledge that they are donor conceived. The US donor conceived community today is a mixture children and adults who unwittingly harbor false personal genetic and family histories, and others who have gained in later life (at the cost of variable but real psychological trauma) the knowledge that their biological parent was a donor. It is unusual for these persons to have any information about this donor at all.

In 2000, Wendy Kramer and her donor-conceived son established an internet site called the Donor Sibling Registry, (DSR), a private, voluntary ad hoc substitute in the US for the government mandated donor registries required by Australia, England, and many other western nations. In the case of Pacific Reproductive Service donor 203, whose transmission of HCM is described by Dr. Maron et. al., 5 of the 13 recipient families (38%) were DSR members, indicating that the 27,000 registrants on the DSR site represent a substantial fraction of the donor conceived community. Theoretically, the incidence of genetic illness among this population should be less than the population at large, since sperm banks could easily take steps to disqualify donors who carry known mutations or other risk factors, and in fact most sperm banks stridently assert that they do so.

A simple survey of the medically documented cases of inherited disease among DSR members confounds this idea. Some defects are well defined, such as the balanced translocation of chromosome 10 in NECC donor D-250, a defect visible upon simple karyotype, which resulted in severe disability and the institutionalization of a donor conceived daughter, and the conception of a number of balanced translocation carriers.  Several donors have fathered cohorts of offspring having an incidence of autism/Asperger’s syndrome exceeding 60%.  A different Pacific Reproductive Services donor carries the gene for OCA1A albinism, while a Fairfax donor is associated with familial Hemophagocytic lymphohistiocytosis (HLH) and pre-adolescent mortality and morbidity among his progeny. Another Fairfax donor carries a cystic fibrosis (CF) mutation. There is congenital hypothyroidism, Williams-Beuren syndrome, PKU, and many more. The percentage of all congenital and developmental disorders among DSR offspring actually seems to exceed the population average. This deserves further study, as it is logical that a strong selection bias predisposes parents with sick donor conceived children to search for the DSR and pay its subscription fees in the hope of filling the void of paternal medical information that is the legacy of anonymous sperm donation.

The assertion by the authors that such genetic illness cannot be prevented is only true in the narrow sense that no one could be expected to screen a donor for this novel MYH7 mutation in the early 1990s. However, most of the cases of HCM revealed by Maron and his colleagues could have been prevented, if a simple protocol of periodic donor quarantine and detailed pediatric examinations had been instituted in combination with a mandatory central register of all donor conceptions. The graded protocol of donor quarantines that we have proposed many times, generally known as “5 & 2″, would have averted the conception and subsequent death of the 2.5 year old patient.

“5 & 2″ prescribes that after thorough and complete medical qualification of naive donors, they are permitted no more than 5 pregnancies, and they are then quarantined until the youngest in this cohort reaches age 2 and completes an extensive pediatric evaluation, along with all of the other 4 half-sibs. If all are healthy and without detectable abnormality, the donor is re-permitted and can now be used for 2 times his prior number of conceptions - in this case, 10. Upon reaching that milestone, he is again quarantined, while his ten new two and three year offspring undergo their physicals, along with the now seven to eight-year old first set of sibs. Had this system been followed by Pacific Reproductive Services, the first cohort, which included the proband, would have contained four carriers of the mutation, two of whom have hypertrophy easily detected on cardiology exam, and the donor would have been retired ten years before conceiving the unfortunate patient IV-11, who died of his condition at age two and a half.

It is my sincere hope that the positive outcome of this new knowledge will be the meaningful reform of a seriously flawed system of donor gamete acquisition and quality surveillance.

.

Sincerely,

Kirk M. Maxey, MD
President and CEO, Cayman Chemical Company
Member of the Board of Directors, Donor Sibling Registry
Ann Arbor Reproductive Services Donor #A013

1.    Am J Med Genet A. 2008; 146(7) p 888-892
2.    J Pediatrics 2006; 148(5) p 633-636
3.    J Med Ethics 2002; 28 p 213-214

The Donor Sibling Registry is still offering a free first counseling session
with one of our licensed therapists. We realize the importance of being able to
speak with someone in the mental health profession who is also well versed with
donor family issues. Please contact me privately if you are interested in
speaking with someone.

As always, I am also always available to help people trail blaze though the many
issues and challenges we all face as parents, donor conceived people and donors.
If you need someone to talk to, please let me know.

Thanks so much if you have already completed our surveys!

We have prepared three surveys: One for donors, one for donor conceived people
with heterosexual single moms, or moms and dads and one for donor conceived
children of GLBTQ identified parents.

PLEASE NOTE: surveys for donor conceived people are NOT to be filled out by
parents. Surveys are for mature middle schoolers and older.

Survey for donors:
http://tinyurl.com/yll2ku5
Survey for those with single heterosexual moms, and also for those in mom and
dad families:
http://tinyurl.com/yjqrso7
Survey for donor conceived children of GLBT identified parents:
http://tinyurl.com/ykg5keo
Wendy

From Today’s Journal of the American Medical Association:

“Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation” JAMA, 10/21/09, Vol. 302, Number 15, p. 1681-1704, including commentary

A donor who had no knowledge of of underlying heart disease, donated to a sperm bank over a 2 year period from 1990 to 1991. In 1995 he was diagnosed with HCM (a disease of the muscle of the heart in which a portion of the myocardium is hypertrophied (thickened) without any obvious cause. It is perhaps most famous as a leading cause of sudden cardiac death in young athletes. The occurrence of hypertrophic cardiomyopathy is a significant cause of sudden unexpected cardiac death in any age group and as a cause of disabling cardiac symptoms. - Wikipedia)  Nine of his twenty four (twenty two donor kids, two with his wife) children have been identified as having HCM (eight of the donor children and one of those produced with his wife).

One child died at age two due to heart failure, two others have extreme left ventricular hypertrophy at age 15 years and are judged to be likely to be at an increased risk for sudden death.

From the article:

“While the US Food and Drug Administration (FDA) inspects the operation of the banks and screening procedures for donors, this process has been directed primarily toward the prevention of infectious diseases, with little attention to the potential transmission of genetic diseases.”

“This case underscores the potential risk for transmission of inherited cardiovascular diseases through voluntary sperm donation, a problem largely unappreciated by the medical community and agencies regulating tissue donation.”  The article goes on to say, “We are aware of only one other documented instance in which a genetic disease was transmitted to an offspring by sperm donation”.

These are some of the medical and genetic issues that have been reported on the DSR:  Ectodermal Dysplasia, Autism, Aspergers, Von Wilberands (blood disease), MCAD (genetic disorder requiring both parents to be carriers), Type I Diabetes, Albinism, heart murmur, hypertrophic cardiomyopathy, Marfan’s Syndrome, PHACES Syndrome,  Dwane Syndrome, Kiddney Disease,  Hemoglobin D, Metabolic Genetic Disorder, Complex Congenital Heart Defect, Tourettes, Hypophosphatasia, Williams Syndrome, Mitral Valve Stenosis, CHD, VUR, PKU, Tay Sacks, Atrial Septal Defect,  HLH, Hypospadias, Karatosis Pilaris, Ebsteins Anolomy, ASD, Van Der Woude Syndrome, Seizure Disorder, Horseshoe Kidney, Imperforated Anus, Hole in Heart, Cyctic Fibrosis, Spinal Muscular Atrophy, Amniotic Band Syndrome, Polycystic Kidney Disease, Congenital Heart Disease, Hydrocephalus, Zellweger Syndrome, Leukemia, Renal Disease, Severe Congenital Neutropenia, JDM, and Bi-Polar Disease.

Link to survey:
http://www.surveymonkey.com/s.aspx?sm=tKA_2bB9T_2bPBXER4yIjm_2fUMQ_3d_3d

We are hoping to gather insightful sperm donor information so that we

can better educate the industry and also have donor conceived people

and recipients better understand the motivations, thoughts, desires

and hesitations of former sperm donors.

We know that there are questions that you might be uncomfortable

answering. Please feel free to skip any questions that you would

rather not answer.

You will remain completely anonymous if you wish to be. We will

only be sharing the general results of the survey.

There are 45 questions that should take between 10-15 minutes to

answer. Please pass along to any donors that you might know of.

Thanks so much!
Wendy

Please pass along- you do not have to be a DSR member to participate.

http://www.surveymonkey.com/s.aspx?sm=yxS6EHgz_2fBei8YHhY69e9Q_3d_3d

We have assembled the following survey intended for donor conceived youth

and adults who are children in both single mom and mom/dad families. Our

goal is to provide an accurate reflection of experiences and to assist families in

having meaningful dialogue related to the challenges specific to our “donor”

community.

A NOTE TO PARENTS: This survey is designed for mature school aged youth

and above. Please review the questions to make sure that they are age

appropriate for your child. Again, our goal is to understand our children’s

experiences so that we can design and provide better resources for families as

we go forward.

Hello!

We have assembled the following survey intended for donor conceived youth

and adults who have one or more LGBTQ identified parents. Over the years the

Donor Sibling Registry has gathered information from a myriad of families, but

we believe predominantly more heterosexual. We think the issues for LGBTQ

families are both similar and quite different. The results of this survey will be

used to both better understand and to begin to construct resources that are

designed to meet the needs of our families. Our goal is to provide an accurate

reflection of experiences and to assist families in having meaningful dialogue

related to the challenges specific to our community.

Please note that this survey tool was designed by members of the DSR who are

also identified as LGBTQ. Two are licensed therapists.

A NOTE TO PARENTS: This survey is designed for mature school aged youth and

above. Please review the questions to make sure that they are age appropriate

for your child. Some of the questions deal with potentially difficult topics for

families. Again, our goal is to understand our children’s experiences so that we

can design and provide better resources for families as we go forward.

If you only have one parent, please answer questions for Parent B (bio parent).

PLEASE NOTE: Many questions will allow more than one answer.

We appreciate your time (should take no more than 15 minutes). Thank you!

The Donor Sibling Registry

The Survey:

http://www.surveymonkey.com/s.aspx?sm=RX_2fluti77pCoF1yS3HQybA_3d_3d