From another Fairfax Cryobank donor:
“I was a sperm donor at Fairfax Cryobank (the Genetics and IVF Institute) in Fairfax, Virginia, for nearly two years. I’ve made contact with them a number of times over the years (last time in 2000) asking them to make my personal contact information available to anyone who was interested in learning that I was their donor. They told me they have a strict privacy policy and that even if I waived my rights to privacy, they were still keeping all files private. I’ve made any number of inquires requesting that my “private” file be opened, but they have refused and have been unwilling to even provide me with my donor number. VERY frustrating. The doctor I had previously made contact with will no longer take my calls nor respond to my written requests. I would love to make contact with any biological offspring or parents of biological offspring who, for whatever reasons, may be searching for me or would be interested in making contact with me.”

Does anyone have any information on Dr. Walter Fox and his partner Dr. Adler who practiced in Beverly Hills in the early 1980’s?

We recently received this email from a donor:

“Years ago I contacted them, trying to get information.  But they told me nothing.  I didn’t know to ask for a donor number.  When I was a donor, it was Drs. Fox and Adler, but apparently they went their separate ways at some point. At least 10 or more years ago, long before I heard of DSR I actually spoke with someone from their office.  He seemed to remember me, but refused to give any information.
I have three children through my marriage, and I often think about the others I never knew.  Your site seems to be the only way to try to reach each other.  Thank you for caring enough to do all this.”

Dear Fairfax Cryobank and CLI,

For years, we have been receiving emails from former sperm donors, like this one from today, requesting our help:

“…Can you guide me as to how I’d best get my donor number from Fairfax Cryobank?  I contacted them several times over the past year (once by phone and once with email) but they didn’t respond.”

The Donor Sibling Registry, and many former Fairfax Cryobank/Cryogenic Laboratories (CLI) Sperm Donors would like to request that you release donor numbers to all those donors requesting to know their own donor numbers. We have many former sperm donors who have come to the Donor Sibling Registry wishing to make mutual consent contact with their offspring. Because you continue to refuse to give these men their donor numbers, making contact continues to be difficult. Some of these former donors wish to share medical and genetic information with the families who used their sperm. You are then prohibiting them from making connections that are desired by all parties, as well as prohibiting the sharing of important medical and genetic information.

We ask you publicly to please consider the ethics and potential medical ramifications of keeping donors’ numbers from them. By refusing to return phone calls, respond to their email requests and by refusing to give them their own donor numbers, you are thereby prohibiting them from sharing and updating medical and genetic information.  Please consider the negative affects of deliberately keeping donors from making mutual consent contact with the families that used their sperm and the offspring that desperately want to know their biological fathers, their ancestry, and their medical backgrounds. For some of these families- the sharing and updating of medical information is critical.

Wendy

A DSR member has an important message for all families that have used CLI donor 1368:

To the parents of offspring from Donor 1368:

Donor 1368 has a rare genetic liver condition called alpha 1.  This is a condition, not a disease and can be managed, but it needs to be identified so that it is not misdiagnosed or mistreated.  Donor 1368 is Phenotype Pi-SZ, which means that he is passing one deficient gene to every offspring he creates, making them carriers.
For information, go to http://www.alpha-1foundation.org/.  In order to get tested for free (and w/o health ins. knowing) you can participate in a research project at the University of South Carolina.  Go to the website, www.alphaoneregistry.org, email alphaone@musc.edu or call toll free, 1-877-886-2383.  They will send you free test kits with instructions.

It is very important that all offspring from Donor 1368 are tested for the presence of this genetic condition as proactive health care is imperitive for both carriers and alpha 1 deficient individuals.  I am the mother of three offspring from Donor 1368 and would be happy to answer any questions you have for me; I can be contacted through Wendy at the DSR.

BioNews July 19, 2010

‘My Daddy’s Name is Donor’: Read with caution!

09 July 2010

By Eric Blyth and Wendy KramerEric Blyth is Professor of Social Work at the University of Huddersfield and Visiting Professor in the Department of Applied Social Sciences, Hong Kong Polytechnic University. Wendy Kramer is co-founder of the Donor Sibling Registry (www.donorsiblingregistry.com)

Appeared in BioNews 567

The ‘My Daddy’s Name Is Donor’ report is co-authored by Elizabeth Marquardt, director of the Institute for American Values (IAV)’s Center for Marriage and Families, who produced IAV’s previous report highly critical of donor conception (1), Norval D. Glenn, of the University of Texas at Austin, and Karen Clark, of FamilyScholars.org, and published by the Commission on Parenthood’s Future, a New York-based think tank, in association with the IAV, in May 2010 (2).

At the outset we should declare our alignment with the authors’ desire to acknowledge donor-conceived people’s right to access their ancestral, genetic and biological background.

Nevertheless, we have serious misgivings about the report, which is based on an online survey utilising Survey Sampling International’s SurveySpot web panel drawn from more than one million American households (3). 1610 adults aged 18-45 years took part, of whom 562 were adopted as infants, 563 were raised by their biological parents, and 485 conceived as the result of sperm donation. The authors claim that their sample is ‘representative’ (p. 5) or ‘very nearly representative’ (p. 6), although a more accurate claim would be that it is representative of the ‘millionplus American households that had signed up to receive web surveys on, well, anything’ (p. 20) - and who are offered cash and other rewards for their participation, rather than of the US population as a whole.

Representativeness apart, the first thing to be said about this report is that it eschews all deference to modesty. In a single sentence, its claim to be ‘the first effort to learn about the identity, kinship, wellbeing, and social justice experiences of young adults who were conceived through sperm donation’ (p. 5 - our emphasis) discounts every previous research study in this field, and may well explain the absence of reference to any existing studies (except for a cursory end-note [pp. 123-124]). It also probably explains why there is no evidence that the specific questions posed in the study are grounded in existing research involving donor-conceived people. What is less easily explained is why ethical review for this study was not obtained - an essential pre-requisite for all serious research involving human participants. Dissemination of the report via IAV, rather than through an academically credentialed institution, also suggests a lack of competent peer review at any stage.

Somewhat incongruously, the authors intersperse their own findings with comments from other people totally unconnected with the study, but known to be opposed one way or another to donor conception. Whilst we are not claiming that there is a one-size-fits-all approach to reporting research, this unorthodox approach serves to obfuscate rather than illuminate.

However, the major concern with the report is the authors’ extensive misrepresentation of their own data so as to best promote their message that donor conception is ‘bad’, even when their own evidence doesn’t support it. Space limitations mean that we can provide only illustrative examples here:

1) The authors report the following findings: 65 per cent of donor-conceived participants agree that ‘My sperm donor is half of who I am’; 45 per cent agree that ‘The circumstances of my conception bother me’; 47 per cent report that they ‘think about donor conception at least a few times a week or more often’ - and draw from these the exaggerated claim that ‘donor offspring experience profound struggles with their origins and identities’ (p. 6 - our emphasis). The one statement that might suggest any sort of ’struggle’ - ‘the circumstances of my conception bother me’- generated the following responses from donor-conceived participants: 19 per cent ’strongly agreed’; 26 per cent ’somewhat agreed’; 20 per cent ’somewhat disagreed’; 30 per cent ’strongly disagreed’ and five per cent ‘didn’t know’. In other words, more than half didn’t care.

2) This strategy is repeated when discussing payment to donors. The authors assert that ‘nearly half [of donor-conceived people] are disturbed that money was involved in their conception’ (p.6) and ‘with donor conception… the growing child struggles with the dawning realization that his or her biological father or mother sold the goods to make the child without even a look back to say goodbye’ (p. 72). But what do their participants say? Twenty per cent ’somewhat disagreed’ and 33 per cent ’strongly disagreed’ with the statement ‘it is wrong for people to provide their sperm or eggs for a fee to others who wish to have children.’ Added to the six per cent who ‘don’t know’, then 59 per cent of donor-conceived participants had no strong concerns about ‘donor’ payment (p.84).

3) They make a big deal of the ‘fact’ that donor-conceived people feel that ‘no one really understands me’ - repeating this on no less than three occasions (pp. 7, 39, 45). However, once again, the participants themselves tell a somewhat different story. As many ’strongly disagreed’ with the statement ‘I don’t feel that anyone really understands me’ as ’strongly agreed’ with it, although overall, slightly more agreed (either somewhat or strongly) as disagreed - 53 per cent vs 46 per cent (p. 104). Of course, this statement is pretty vague and doesn’t necessarily have anything to do with donor conception. In contrast, when the study focused on very specific issues about donor conception itself, the level of support from donor-conceived participants is high. For example, 56 per cent disagreed with the statement ‘If I had a friend who wanted to use a sperm donor to have a baby, I would encourage her not to do it’ (p. 82). However, this does not sit easily with the authors’ agenda. Instead, in order to emphasise their anti-donor conception message, on two occasions (pp. 14 and 65) they focus on the observation that 37 per cent of the donor-conceived participants agreed with the statement.

4) The data are again misrepresented when reporting participants’ agreements with various ‘expert opinions’: 44 per cent agreed that ‘Donor conception is fine for children so long as parents tell children the truth about their conception from an early age’; 36 per cent agreed that ‘Donor conception can be hard for children, but telling children the truth early on makes it easier for the children’ (our emphasis), and 11 per cent agreed that ‘Donor conception is hard for children even if their parents tell them the truth’ (p. 100). These findings are distorted in the summary soundbite: ‘About half of donor offspring have concerns about or serious objections to donor conception itself, even when parents tell their children the truth’ (p. 57).

The report has highlighted issues that warrant further serious study. For example, we were surprised to read that 20 per cent of donor-conceived participants claimed to have acted as gamete/embryo donors or surrogates and that 52 per cent would consider being a donor or surrogate (pp. 35-36) - a finding that does not accord with our years of experience of working in this field. Nevertheless, it needs to be investigated in future studies. However, judged on its own merits, this report is seriously flawed and the authors’ analysis should be treated with extreme caution.

SOURCES & REFERENCES

1) E. Marquardt (2006) The Revolution in Parenthood: The Emerging Global Clash Between Adult Rights and Children’s Needs

New York: Institute for American Values |

2) E. Marquardt, N. D. Glen and K. Clark (2010) My Daddy’s Name Is Donor: A New Study of Young Adults Conceived Through Sperm Donation

New York: Institute for American Values |

3) Survey Sampling

|

4) SurveySpot

http://www.surveyspot.com/OW/index.aspx |

http://www.bionews.org.uk/page_65970.asp

As Father’s Day approaches this year, I thought I’d post our handout to prospective sperm donors. Unfortunately, none of the sperm banks have agreed to hand this flyer out to any prospective sperm donors. At the bottom, I have also added a note from a DSR parent, posted today.

ARE YOU THINKING OF DONATING SPERM?

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 donate 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, often to try to provide their children with full biological siblings.

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 and post the information (anonymously if you’d like) on the Donor Sibling Registry www.donorsiblingregistry.com, an online database and community that enables donors, recipients, and offspring to make mutual consent contact and share information. For many years after your original donation children who share your DNA may develop medical and health concerns that can only be answered with your updated information.

It is also important to note that the accuracy of the medical and health history you provide to the sperm 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.

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 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 (there are currently donors known to have more than 50 biological children as a result of their sperm donations). The children you have now or may have in the future may meet your biological children born from your donations. 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 genetic “roots”. As noted above, many donors have more than 20, 30 or even 100 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 n the traditional manner.

With this in mind, would you consider being an “open donor” now? This means that your biological offspring will be able to contact you when they turn eighteen (18) years of age.

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 donation. 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. No doubt many will wonder about who they may look like, where they get their talents and personality traits from, and their genetic family history. You are a “donor” to the parent(s), but to the child you are a biological fahther. Imagine your reaction if your genetic offspring needed a lifesaving bone marrow transplant and reached out to you.

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.

And finally, a note from a DSR mother that I received today, in regard to Father’s Day:

Father’s Day

As Father’s Day approaches, I want to once again express my profoundappreciation for all that Wendy has done to create, maintain, and promote DSR.Thanks to her, this will be the 3rd Father’s Day that my daughter has been ableto give to her father a Father’s Day card. Thanks to the DSR providing a forumfor the mutually desired exchange of information, my daughter’s father and hisfamily will be there tonight to watch her 8th grade promotion/graduationceremony. The DSR is helping stretch the boundaries of what it means to be’family’ and allowed my donor the option of shedding his anonymity andparticipating in the life of a child he helped me create.

The links to the surveys are now up on all the pages of the DSR.  All DSR members (paying or non-paying), donor offspring ages 7+, egg and sperm donors, and all parents (non bio and bio) are invited. If you are in touch with half siblings and/or donors who are not currently on the site, please invite them. They’ll just need to set up a DSR username in order to participate.

Thanks so much for participating!!!  Our letter of invitation/explanation:

Dear DSR Members:

I am writing to announce that we are moving forward with some novel research in collaboration with the University of California, San Francisco’s (UCSF) Institute for Human Genetics.  We are initiating a study that will investigate the hereditary and environmental factors that influence physical, behavioral and medical traits among relatives in the DSR.

We have posted a link to a survey (roughly 35 minutes long) on the DSR website that is open to all members.  I hope you and/or your donor-conceived children will consider taking this survey, which will study some interesting traits such as personality, memory and physical attributes among sibling groups, parents and donors.  I know many of us look at our donor children and often wonder how they acquired their personalities and traits.  For donor conceived people, not knowing one half of their genetic background can leave them with many such questions.  We have an opportunity at the DSR to examine donor-conceived people, their parents and their donors to inquire about the “nature vs. nurture” of it all.

This research is based on studying families.  It is open to all DSR members, including donor-conceived people (even those who have not yet matched with half-siblings and/or donors), their parents (both biological and non-biological) and the donors (if they are DSR members). For those donor-conceived people without a clinic or donor number, please feel free to complete the study with your biological and non-biological parents using your DSR username so we can identify you as a family.  By systematically recording patterns in the extended families found in the DSR, we can separate heredity and environment in a novel way.

In return for your participation, you will be entered into a lottery to win one of 50 $100 gift cards from Amazon.com, to be distributed randomly when the survey closes.  For more information please visit the study website at http://dsrstudy.ucsf.edu.  If you have any questions, please contact myself or any member of our study team listed below.  I hope that you all will be as enthusiastic about this project as I am.

Sincerely,

Wendy

It’s been a while since we updated everyone on the goings-on here at the DSR.  A quick update:

1.  We are currently putting together research papers on the 759 donor offspring, 154 sperm donors and 109 egg donor parents, that we surveyed earlier this year. This research will be peer reviewed and (hopefully!) published in academic journals.

2. We have submitted two abstracts to ASRM for presentation at their October meeting: “Anonymity, Disclosure and Contact with Donors: How Experiences of Donor Conceived Offspring Vary by Family Type” and  “Semen Donors who are Open to Contact with their Offspring”. We shoud know by early July if the abstracts have been accepted.

3. We are about to launch a very exciting new research project in collaboration with UCSF’s Institute for Human Genetics- on nature/nurture. This study will investigate the hereditary and environmental factors that influence physical, behavioral and medical traits among relatives in the DSR. We will be sending out invitations to participate in the study within the next few days. We hope that all donors, donor conceived people and all parents (both bio and non-bio) will participate.

4. The DSR will have booths at this weekend’s Capital Pride in Washington DC and the next weekend’s Denver Pride in Colorado We will be taking to prospective parents, parents, donor conceived people and anyone who is interested in hearing about the DSR and what we do.

5. We will be speaking at July’s Genetics and Society meeting in Tarrytown NY.

6. We will be making a presentation at November’s National Council on Family Relations meeting in Minneapolis. The meeting is entitled: “Families and Innovation”.

7. We passed the 7,300 mark for people matched on the DSR. We currently have more than 27,425 donors, donor conceived people and parents on the DSR.

It has recently been reported to the Donor Sibling Registry that a sperm donor who has donated at several clinics, (some of these clinics have then also sold the sperm on to other clinics), has some medical issues that require that any subsequent donor conceived children born from this donor be medically tested immediately. This sperm is still being sold at at least one of the clinics.

The clinics and donor numbers are as follows:

Pacific Reproductive Services #143

The Sperm Bank of California #832

Dr. Russell, Delaware Institute for Reproductive Medicine, donor #530

Please contact Wendy at the Donor Sibling Registry for more information and to be directed to the doctors who are currently investigating the case.

Please pass this along to any “donor-grandparents” that you know.

Hello Parents of Donors,

The Donor Sibling Registry now has a survey for the parents of sperm and egg donors.

Here is the link to the survey:
http://www.surveymonkey.com/s/KY5XQGY.

The survey contains 41 questions, and should take between 10-15 minutes to complete. We have spent the past few months collecting surveys from the donor conceived, the donors and the recipient parents, (and are busy working on these papers!) but it’s the parents of the donors that we have not heard from yet- and we think they have an important
voice in these new family connections. You can take the survey anonymously.

When the survey is closed, we will randomly select two winners for a $50 prize!

Thanks so much for your participation.

Wendy