By admin on June 17, 2009

 Former sperm donor Michael Galinsky gave us permission to re-post from his blog:

Are You My Father?

Stems cell research, in-vitro fertilization, egg and sperm donations, and the ethical implications that surround them have been all over the news recently. These are thorny issues and as a filmmaker I am compelled to throw myself and my story into the debate.

Before I made films I played bass guitar in a rock band. To support myself I worked as a messenger for a commercial production house, and a couple of times a week I donated sperm. While on my way uptown to deliver videotapes to the edit house I’d sometimes stop by the sperm bank to make a deposit. 50 bucks might not sound like a lot of money, but it was almost as much as I made for a full day of work as a messenger. My rent was only $150 a month, so between a few days of working as a messenger and 4-6 donations a month, I had enough money to live and enough time to focus on music, photography, and writing.

Despite the fact that I was a religious studies major in college I didn’t think too deeply about the ethical or long term implications of my second job. I also didn’t keep my work a secret. In fact when people asked me what I did for a living I’d say, “I’m a sperm donor”. They either laughed or recoiled in horror. Invariably I would get along well with those who laughed or were intrigued; it was kind of a litmus test.

All humor aside, when I started donating I had the sense that the sperm donor was a pretty unimportant part of the equation. I’d read or seen many sob stories about adopted children searching for their birth mother, but I had never seen anything written about the search for a birth father, let alone a donor father. I donated on and off for probably a couple of years when I wasn’t on tour with my band. When I started to date my future wife in a serious way I simply stopped going to the lab. I didn’t think about it too much after that.

We got married and after several years my wife and I had a red haired, wild eyed, explosively charismatic daughter. I spent a lot of time with her and was fascinated by the reality of watching her become who she is. There were things about my daughter that simply couldn’t have been formed or changed by my parenting style, skills, or lack of thereof. She was who she was when she was born, and she was a lot more me than her mom.

When my wife was 6 months pregnant with our second daughter my father was struck by a car and killed instantly. I was very close to my father which made it a gut-wrenchingly painful experience. While we had our conflicts we also had good communication and as such I didn’t feel like we had unfinished business to deal with despite the fact that he was snatched from us so violently. I was pleased that my older daughter had gotten to know him because both of my grandfathers had passed away before I was born and I had the sense that I had missed out on something by never meeting them. Even though she was just shy of 4 years old when he passed away I believe that knowing him had a powerful effect on her life. I have a picture of her on his lap being read to that is, for lack of a better word, precious.

My father handled almost everything in my family and I fell into his leadership role in arranging the funeral. Although hastily put together, it brought many of my relatives together from all over the country. Some of my cousins came that I hadn’t talked to in over a decade, yet I felt deeply connected to them. Over 100 people crowded into our house for an impromptu afternoon of remembrance. As I spoke to this group about my father I wore his shirt, which was too small and his watch that didn’t work, because I needed to feel connected to him. The room was filled with people who had felt connected to him, and I in turn felt connected to them.

Three months after my father passed away we had our new baby girl. Within weeks I could tell that she took after my wife, and not just in the way that she looked, but in her calm and observant presence. My older daughter shares a hyper energy with myself and my mother, while our younger daughter has a quiet reserved nature like my wife and her maternal grandfather.
It is one thing to understand that there are parts of us that are shaped by nature and parts that are shaped by nurture. It is another thing completely to have two small children and witness how powerfully nature wields it’s brush.

When our little one was a couple of months old I was showing her off at the hair salon on the corner. After cooing over her for a few minutes my friend Lois eyed me fiercely and harumphed, “Mike, now you gotta go for your boy.”

“Hell no. I’m finished. I can’t handle the two I have.” I shot back.
“Mike you gotta have a boy.” she drawled as she went back to washing her clients hair.

As I left the salon I was struck by the thought that I must have a boy somewhere, probably a lot of boys and a bunch more girls to boot. I stood holding my baby with one hand while trying to contain my older daughter’s manic energy with the other and I was dumbfounded by the reality of the situation. Some of them might be 18 years old I realized, and they probably want, even need, to know who I am.

At home, as I googled “sperm donor children father”, I noted the fact that when I was a donor the internet was not a part of our daily lives. Information moves so differently now than it did then. If I was a 20 year old now and considering donating sperm there’s no doubt that I would be doing this same web search before I signed up. Back then the only easily available source of information was the lab itself, and they weren’t particularly forthcoming. Immediately I found donorsiblingregistry.com. Wendy Kramer and her teen-aged son Ryan, who was donor conceived (DC), started the site in 2000 as a way to connect DC people with each other and possibly even their donors. It has now turned into the lifeline for a rapidly expanding community of DC children and their parents. Increasingly former donors are finding the site as well. At last count it had over 23,000 members and 6,000 recorded sibling and donor matches. As i paged through the site, as well as other articles on the net, I quickly realized that the ethical implications of sperm and egg donation were coming home to roost. The site makes it possible for donors and DC people to list their information allowing them to find each other. As I searched further on other sites I found that a lot of the stories that I came across were about donor conceived individuals desperate to find their hidden fathers. Some of these people are livid about being kept in the dark. Many of them direct a lot of anger at the thoughtless donors like myself who helped create them but aren’t there for them. Having just lost my father I could relate to their pain. It was clear to me that I had a responsibility to make myself available to those people conceived from my sperm. It was a bit overwhelming to imagine having 5, 10, or even 20 new additions to my family but frankly, also kind of exciting.

I immediately called the lab that I had donated at in order to find out my donor number so that I could list myself on the site. That is, I called the lab after talking with my wife about the possible implications of the Pandora’s box that might open. As I had never kept my “job'” a secret she wasn’t surprised to hear about the registry. However, she did pause to think about what the implications might be for her and our children. However, she too understood that some people might need to know about me so she gave me her blessing. 9 months and 15 to 20 calls later I was finally able to get the lab to give me my donor number. There was, and is no real standard for record keeping and it seemed that all my information was in a box in a storage facility that wasn’t easy to access. I also imagine that the facility kind of hoped I’d just go away. Secrecy, and anonymity make their job a lot less complex and the industry isn’t too happy about that growing cry for openness. They argue if that a national registry existed it would raise serious privacy concerns, and likely limit the number of donors who are willing to feed the growing industry. Recently the UK joined many other nations in banning anonymous donations and it has led to a shortage in available donors. However, the number of donors is beginning to climb back up. As we’ve learned from current financial mess sometimes caution and solid information trump convenience.

With my number in hand I logged onto the donor sibling registry and listed myself and waited. For the first few days I nervously checked my email to see if I had been contacted. That was a year ago. I still haven’t been contacted, but I have been tracking the issue very closely. As a filmmaker and a serial documenter of my own life I felt compelled to explore the issue through a film of my own. For the past year I have followed the discussion in both the media and on the list serve of the DSR. As the DSR community grows, it’s collective voice becomes louder and one of the most powerful messages emanating from that community is that anonymous sperm and egg donation has severe negative consequences. As an anonymous donor I completely agree. Would I have donated if it wasn’t anonymous? Frankly, it’s hard to say, but I imagine so. I might have thought about it a little harder but both the financial and moral reasons would have still existed. I needed a way to support myself as an artist and I believed that I was doing a mitzvah for those in need. My father, who was desperately anxious about my lack of defined career path, was pleased that I was paying the rent with the world’s oldest pastime. When he tried to end each of our weekly conversations with, “Write when you get work…” I could shout him down with the fact that I had a job even if it was somewhat unconventional. If the option existed at the time I think that I might have chosen to be a known donor. However, at the time that I donated there was no mention of anything except anonymous donation, so my thoughts didn’t go too far in that direction

After a screening the other night I was talking to a filmmaker I’d just met and he was telling me about a documentary he was going to work on about people who subject themselves to medical experiments as a way to make money. When I was a donor I had considered doing medical experiments as well for similar reasons; decent pay while doing something for the “public good”. I mentioned my project and he excitedly informed me that he too had been a donor in the late 80’s. We both remembered that our role was completely minimized by the sperm bank. I can’t say that I felt “ashamed” at the time, but we laughed about how awkward it was checking in with the nurse at the front desk to let her know that you were going to head to the back and masturbate into a little cup. When I mentioned that I had listed myself on the DSR he was a bit dumbfounded. I don’t think he’d ever thought too much about the kids that might be out there.

Recently the Boston Herald ran an article about a 10 year old girl who was looking for her father for both medical and emotional reasons. She had a cyst in her brain and everyone thought it was in the best interest of the child to find out information about her biological father’s medical history. When her mother called the lab that provided the donor sperm she couldn’t get anything beyond the basic information she was originally given, and they refused to make any effort to contact him. The article was in part an attempt to reach out to this individual to see if he might come forward. The girl was open in her feelings; she needed the medical information but she was also interested in knowing who this man was. There was a robust thread on the online comments section of the article. These comments were either empathetically informed and supportive of her search or combative and accusatory. The combative ones cried, “A deal’s a deal! How can this mother go back on her word… etc etc”. On the DSR listserve the girl’s mother expressed her daughter’s horror at the comments (she mentioned cradling her sobbing daughter). At this moment I moved from observer to advocate. I posted a comment which ended,

“I signed up as an anonymous donor- because really that was the only option at the time. Yes, I signed an agreement that kept my identity secret- but that was 20 years ago and I wasn’t given another option- things change- times change- people change-and as such, the idea that someone is at fault in the situation described in this article is ludicrous. I wouldn’t be surprised if this nervous 20 year old who said he wanted to be anonymous might not be a confident gregarious 35 year old who would love to meet his daughter.”

Basic common sense should allow us to extrapolate from the adoption rights movement that while openness may be more emotionally complex at the outset, if handled properly it can lead to healthier outcomes. In the dark days of adoption a young pregnant person would disappear from town, have a baby that was whisked away from her, and slip back into her own life as if nothing had happened. Secretness and stigma ruled the day. Times have changed. I have a good friend who gave birth to a child when she was in no position to care for it nearly a decade ago. She gave the child up for adoption but has remained in touch with the adoptive mother and her son and gets to see him every few months. I think that it was a bit awkward for all involved at first but in the end it has been wonderful. My friend now has a loving husband and a 2 and half year old that she is raising. Her son has met his half brother and my friend can’t imagine the pain she would feel if she had no connection to her son.

While there has been significant research concerning the emotional welfare of those involved with an adoption situation there has been much less involving donor conception. From my year of following this issue the “street chatter” is making it clear that children have a need to know about their biological background. It’s clear that the people most affected by these decisions are the ones with no voice whatsoever. In addition, as I have followed this issue the last year I have noticed that for the most part the donors are largely still in hiding, we’re simply not present enough in the discussion. I am sure that there are some donors who want to stay hidden. At the very least prospective donors need good information about the implications of their participation.

Recently several groups from around the world that are involved in issues surrounding donor conception formed an umbrella group (International Network of Donor Conception Organization) and put forth the following list of suggestions for a more reasonable and healthy approach to donor conception. for more information you can visit http://www.inodco.com/

1. End donor anonymity.

2. Track all recipients, donors and births and safeguard all records in a central, government data bank indefinitely. Information to be accessible by all involved families.

3. Mandate reporting of donor conceived live births from each donor.

4. Limit the number of births conceived with the sperm or eggs from any given donor

5. Require donors to regularly update their family medical history. Medical information to be included in donor data bank.

6. .Mandate genetic testing for donors and include genetic information in donor bank.

7. Push our respective governments to inquire into followup health histories of egg donors.

8. Require mandatory third party counseling for all prospective donors and parents.

9. Require legal and financial protection for anonymous donors so that they may feel safe to come forward.

Michael’s Blog: http://donor67.blogspot.com/


By admin on June 09, 2009

Severe confidentiality issues with Omnitrace.

Please be warned: If you plan on using a “people search” website to assist in locating biological family members, please talk to me first. Omnitrace has  given the Donor Sibling Registry good reason to question their privacy and confidentiality policies. We would strongly recommend using another organization to assist you in your search.


By admin on May 28, 2009

THE CASE FOR COMPREHENSIVE MEDICAL TESTING OF GAMETE DONORS
A commentary by Wendy Kramer, Director & co-founder, Donor Sibling Registry,
http://www.donorsiblingregistry.com
(May 26/09. BioNews) http://www.bionews.org.uk/commentary.lasso?storyid=4365

The Donor Sibling Registry (‘DSR’) is a non-profit, web-based, worldwide
organisation dedicated to educating, connecting and supporting those
affected by gamete donation, including donors, recipients and offspring. At
25,000 members, the DSR has connected 7,000 genetic first degree relatives;
hundreds of donors enjoy contact with offspring and thousands of
half-siblings interact together.

However, the DSR doesn’t just generate genetically-related joy — it also
shines light on serious genetic concerns about gamete donation. Frequently,
the DSR counsels recipients whose children have inherited undisclosed
genetic disorders, or who have discovered their donor was dishonest
regarding health, or that the sperm bank didn’t notify them about reported
illness or amended the medical profile.

The number and severity of these health matters is discomfiting. Since US
donors can father many offspring (one DSR donor has more than 120 known
offspring) donors can transmit disease to scores of children.

Ranking only second to seeking contact with genetic relatives, DSR members
cite interest in sharing or warning about health issues. The DSR is the only
facility whereby donors, recipients and offspring can unrestrictedly and
immediately share medical information. Thousands use it for this purpose.

Currently, many US sperm banks either refuse to update donor/offspring
medical information or, even if they accept updates, refuse to share the
information, or make the process of reporting so complex or expensive that
donors and recipients simply cannot comply or afford it.

Amazingly, in this era of genomic sequencing, some US sperm banks don’t
carry out basic genetic screening techniques such as karyotyping – a test to
look for chromosomal abnormalities which might cause genetic problems.
Recently, the DSR undertook to notify recipients that a New England
Cryogenic Center (‘NECC’) donor had a balanced translocation of chromosomes
manifesting in offspring as an imbalanced translocation with consequent
severe retardation, deafness, blindness and immobility. The DSR took on this
task because the NECC was intransigently refusing to notify recipients. The
DSR not only notified recipient members, it also trawled its database to
find discussion group visitors mentioning that particular donor.

Yet more frustrating than the time and cost expended doing such activity, is
the fact that were the NECC simply kartyotyping, this donor would have been
excluded for having pieces of his 10 and 22 chromosomes swapped around.
Tragically, the cost of karyotyping is less than the price the NECC charges
for a single vial of sperm: $400 v $530.

Despite providing a clearinghouse for medical updating, the DSR knows it
can’t reach all affected recipients. Unfortunately the sperm banks — who
could so easily notify recipients — rarely do. They ignore their moral and
obvious obligation to prevent sick children being procreated even when they
know a donor is transmitting hereditary illness.

In 2006, when 5 babies conceived by the same donor were diagnosed by a
leading medical expert as suffering from a rare disorder called severe
congenital neutropenia, the New York Times reported that when International
Cryogenics heard about the problem ‘it did not notify other recipients …
at first because the company’s own genetics consultant questioned Dr.
Boxer’s findings, and later because the company reasoned that even if other
children had developed the disease their families would already know it’.

But such reasoning is faulty. Recipients often store sperm for years and
reserve vials are frequently gifted if not needed. Also, embryos can be
frozen for years before using. Recipients clearly need to be warned about
hereditary disorders to prevent unnecessarily sick children being born.

The few genetic tests US sperm banks perform, they skimp on. Only Jewish and
French-Canadian donors are tested for Tay-Sachs, ignoring the reality that
although those ethnicities are more likely to carry the mutation, there is
still risk in other groups. Tragically, offspring have inherited Tay-Sachs
due to this policy.

Despite larger sperm banks grossing $1,000,000 – $2,000,000 per donor
through sale of vials, plus around the same amount again through selling
profiles, consultations and vial storage, US sperm banks generally shun
genetic testing. The less screening carried out, the fewer donors need be
disqualified and fewer tests also equals less cost.

The sacrificing of offspring’s health to profits goes on. In the case of
Johnson v California Cryobank (No. B137002, 2000 WL 638843), the doctors
deliberately rewrote a page within the donor’s medical profile deleting
information the donor provided indicating kidney disease in his family. This
led to the conception of a girl who by the unusually tender age of six had
kidney failure. Because Autosomal Dominant Polycystic Kidney Disease
normally strikes sufferers in their forties, doubtless the doctors thought
any prospect of litigation would be long tolled before the anticipated wave
of offspring sufferers would manifest. Since 1500 vials of the affected
donor were sold, based upon conservative estimates around 75 offspring will
ultimately be struck with kidney disease.

The DSR believes that just as self-regulation failed with monetary banks, it
has failed with sperm banks. Therefore, to protect donors, recipients and
offspring, the DSR is calling for the implementation of strict regulation,
mandatory genetic testing and the establishment of a central gamete donor
registry run by an independent authority.