Tuesday, August 31, 2010

Was your clinic lying to you??

Many clinics are keeping vital information from their clients, information that is crucial for the offspring to connect with genetic relatives.  One of the most common is clinics that fail to disclose to their patients that the sperm did not in fact come from one of the hospital's residents or interns, or the university's medical student.

Many patients, even well in to the 1990s were told their sperm was fresh from a local donor.  This is highly unlikely, as after 1988, sperm was required by the CDC to be frozen and quarantined for at least 2-6 months - due to the discovery and fear of HIV/AIDS.

Other clinics and doctor's offices buy sperm in large quantities from large sperm banks.  Some of these clinics tell their patients were the sperm came from.  Some do not.  Some offices tell their patients exactly what they know the patient wants to hear, and not what the truth is.  Hence why so many offspring and parents believe their donors were medical students....the doctors know that saying the donor was a medical student sounds much better than say he was a mechanic or whatever.

One of the world's largest sperm banks is Xytex.  While their headquarters are in Augusta, Georgia, they also have offices in Atlanta, Georgia, and throughout the years in various other cities/towns throughout Georgia.  They also have many affiliates.  That is, clinics that use their sperm for their patients.  

The following clinics are official Xytex affiliate clinics, meaning their sperm are Xytex donors.  Some of these clinics change the donor numbers to their own system.

Florida Institute for Reproductive Medicine (Jacksonville, FL)
LaVista Reproductive Services (Atlanta, GA)
North Carolina Center for Reproductive Medicine (Cary, NC)
Pacific Reproductive Services (San Francisco and Pasadena, CA)
Reproductive Health Associates (Clearwater, FL)
Southeastern Fertility Center (Mt. Pleasant, SC)
University of Connecticut Health Center (Farmington, CT)
Xytex Corporation at Syncor (Woburn, MA)

Genesis Fertility Centre (Vancouver, BC)
Outreach Health Services (Toronto, ON)
Regional Fertility Programme (Calgary, AB)

Queensland Fertility Group (various offices throughout QLD)

***As always, please let me know if you know of any other clinics or doctor's offices that were affiliated or used Xytex donors exclusively!!  I am in the process of compiling a list of private doctor's offices that used Xytex as well.


Here is a list of all USA Sperm Banks/Clinics, including their affiliates and alternate locations.  I have listed dates in service for as many as I could find.  Please feel free to email to make corrections or add facilities.

Sadly though, offspring and recipients are not the only ones being lied to by clinics!  As discussed on the DSR, two notable (or better yet, notorious) sperm banks: Fairfax Cryobank and Cryogenic Laboratories Inc (CLI) have been publicly denounced for their refusal to provide former retired donors with their donor numbers.  These two banks are attempting to interfere with willing and consensual contact between former donors and their offspring by deliberately denying donors their numbers.  Other clinics have been known to give donors and recipients different numbers so that future reunions are nearly impossible.  

All of these tactics by the infertility industry show how deeply fearful they are of the idea of reunion, and the lengths that they will go to stop it.  They are trying to stop it, not because they think it's unhealthy or against some mysterious and non-legally binding "contract of anonymity", but because they know that every successful reunion proves the exact opposite....that anonymity is wrong and that even many of the donors have had enough!!  

Saturday, August 28, 2010

Are the Kids Really Are Right?

Are the Kids Really All Right?
The interests and rights of people conceived by donor sperm

Psychology Today
Published on August 27, 2010
By: Vardit Ravitsky and Joanna E. Scheib

In the recently released film The Kids Are All Right, two siblings track down their sperm donor and introduce him to their lesbian mothers. What ensues is a plausible unfolding of events when genetically related strangers meet. The film's portrayal of the desire to meet the donor is empathetic. It shows in a positive way how donors and offspring might interact, take interest in and learn about each other, and form a new kind of relationship -- not that of a father-child, but clearly one that matters to both parties. The film also does a good job of helping those of us who have always known our origins to understand why some donor-conceived people want to find their donor.

Disappointingly, however, the film fails real donor-conceived people, and even damages their likelihood of being able to find their donors. The film's portrayal of the interactions between the donor and the two parents play on prospective parents' fears that supporting their child's interest in exploring their identity and donor origins will wreak havoc with their family. The message seems to be that the only way a donor-conceived family can survive is to exclude all contact with the donor. Donor-offspring contact can be good, but ultimately everyone's best interests are served by not encouraging such contact and, in fact, perhaps even selecting an anonymous, never-knowable donor with whom contact is unlikely.

Does Hollywood reflect -- in the case of this film -- the emotional and social reality of donor-conceived individuals? The experience of contact between donors and parents? No research to date provides evidence that donor-conceived families are at risk for disruption due to donor-offspring contact. Evidence is accumulating, however, to support the idea that offspring interest in their donor origins is a normal, and not a pathological, part of psychological development. Evidence also shows that problems can result from avoiding talking about the donor origins of one's family and denying individuals access to their donor's information.

Yet the system is not designed to provide access to such information. In the United States, disclosure of donor identity is regulated by neither state nor by federal law. Donor anonymity is legally permissible and still predominates. No central registry exists to record and safely retain information that would allow possible future linkage of donors and offspring or offspring related through the same donor (and raised in different families). As a result, many individuals with donor origins will never have access to information about their donors (either detailed nonidentifying information or identifying information subject to donor's consent to release).

Does this reality raise serious ethical concerns? Do donor-conceived individuals really want to have access to information about donors, as depicted in the film? To answer this question we need empirical data about their needs, interests, and life experiences. Unfortunately, the collection of such data is particularly challenging for a few reasons. For example, most parents do not tell their children that they were conceived using donor-sperm and confidentiality issues make it difficult to recruit this population.
Despite such challenges data have been accumulating over the past decade from small studies conducted in different countries indicating that indeed donor-conceived individuals have a strong interest in having access to information about their donors. For example, in 2005 Scheib and colleagues asked 29 donor offspring, ages 12 to 17 years old, from a program that allows adult offspring to identify their donors whether they were planning to ask for their donor's identity. The majority said they were moderately to very likely to request this information.

Three recent surveys with relatively large samples offer additional insight. A survey, published last spring in Reproductive BioMedicine Online, of 165 individuals who are members of an organization that connects donors and donor-conceived families is the first study to obtain systematic data from individuals conceived using anonymous sperm donation about their experiences searching for and contacting their donor and others who have the same donor. The findings indicate that the main reasons individuals searched were curiosity about the characteristics of the donor and the desire to gain a better understanding of their genetic identity. Wanting to meet the donor and medical reasons were also commonly cited. In the open-ended questions, many wrote about "the importance of knowing their genetic or ancestral history, and the sense of frustration they felt at not being able to access this information."

About a third said that the search was prompted by a change in their personal circumstance or by reaching a developmental milestone, such as becoming a teenager, an adult, getting married, or having children. For those who had their own children, searching was a way of providing them with an ancestral history.

The second recent survey is of 485 adults conceived through sperm donation that was designed to "probe the identity, kinship, well-being, and social justice experiences of donor conceived adults." It is the largest reported sample to date and its methodology of random sampling reduces sample bias. Data from this survey show that donor offspring indeed believe that being told the truth about their conception and having access to information about donors is important to their well-being.

Eighty percent felt that "donor conception is fine as long as parents tell children the truth about their conception from an early age" or that telling early on "makes it easier for the children." In addition, 68 percent felt that they had the right to nonidentifying information about their donor, 67 percent that they had the right to know his identity, and 63 percent that they should have the right to have the opportunity to form some kind of relationship with him (although only 34 percent actually wanted some relationship).

It is important that these findings be replicated, however, as the study had both ethical and methodological problems. And indeed another study of adult offspring published last spring (but without the problems) in the journal Fertility & Sterility also found that offspring benefit from and value both donor information and being told the truth, suggesting that at least this finding is grounded in reality.
What clearly emerges from these surveys is the urgent need to secure at least the possibility of future access to information about donors. The current situation in the U.S. therefore raises serious ethical concerns. The human need to know where we come from includes knowing our genetic origins.

Vardit Ravitsky is an assistant professor in the bioethics program, faculty of medicine at the University of Montreal. Joanna E. Scheib is an associate adjunct professor in the department of psychology at the University of California, Davis, and research director of The Sperm Bank of California in Berkeley. An earlier version of this essay appeared in The Hastings Center's Bioethics Forum.

Thursday, August 19, 2010

Why do I do it?

It's exciting that the summer of 2010 is turning into the summer of donor conception entering the mainstream.  Elizabeth's study was only the start.  With 3 (yes THREE) Hollywood films out this summer that deal with donor conception: "The Back-Up Plan", "The Kids Are Alright", and most recently, Jennifer Aniston's controversial "The Switch".......with all these movies and our plight hitting the news due to MDND, suddenly everyone wants to talk to us sperm donor kids!!

Not that I'm complaining necessarily....it's just being in the media is very emotionally draining.  The stress of talking to complete strangers about very personal things, only to know that what you say is going to be published/broadcast across the country --- well, lets just say it's very intimidating!!!  So having had so many media interviews in the past month, I feel like I've told and retold my story over and over again, only to have it usually "modified" for sensationalism by America's mass media market.  Unless you're on live television, there is no way to control what you're saying and what will be published/broadcast.  Of course, points that I make because I feel that they are paramount are ignored, whereas comments made rashly or when emotionally-charged are usually used.  The rational responses that provide arguments for why donor anonymity is unethical and why donor conception practices in America need to be changed.....these comments are sadly often lost in favor of the dramatic or emotional or controversial.

Since the release of the AP wire article last week my email inbox has been inundated with responses from new-found fans, from recipient parents, from many adoptees across the globe, former donors, and those who had a bone to pick with me about my POV.  Some emails even bordered on stalkerish!  Of the handful of emails from those who disagreed with my views there was one that sticks out in my mind.  Mainly because this gentleman gave me a rational reason to disagree and when I responded he attentively listened to what I had to say and wrote back further more rational arguments.  We carried on an interesting back-and-forth conversation and while we agreed to disagree for the most part, by the end I actually won over his respect, and his mine.  For me, to be able to voice my rational responses to those on the other side, without being disregarded and violently attacked was a great experience and I thank him for the conversation.

So why do I do all of this?

I do it because I want my story (and views) heard by more than just my regular readers here on Cryokid that are most often affiliated with the donor conception or adoption triads.  I do it because there are so few of us in the USA who are willing to go out there and talk.  I do it because I hope that one day changes will be made to the practice here in America that will make things better and easier for future donor conceived children, and so they do not have to go through the pain that many of us adult offspring feel.

I don't do it to make others feel sorry for me, or to make recipient parents feel badly about themselves and the decisions they made.  I try to educate anyone who will listen, but I don't judge.  It's not my place.    I also don't do it because I hate my life or my family.  I don't do it because I only focus my energies on negatives and dwell on them.  I agree, there are many others who have it much worse than I do (for whatever reason).  I am not here to start a contest about whose life is worse....as I admit in most cases I would lose.

However, I do feel that any unnecessary harm done to another human being is considered unethical.  Yes there are children who grow up in abusive and neglectful families and my hearts go out to these kids.  It's not fair the life they have been dealt and our justice system sadly has its problems.  Yes there are children conceived in maybe worse-off circumstances, and that is not right either.  However, these are not intentional government-supported practices.  Donor conception is.  And while not every donor conceived child is "harmed", if there is any evidence that any donor conceived children feel this way the practice needs to be re-evaluated.

I believe in destiny, and I also believe that maybe my destiny is just this.  That I was put here to live through this circumstance to be a voice of reason, a voice for change, a voice for the offspring.  Yes, some of my blog posts can be emotional - this is an emotional topic.  Yes, sometimes I say things here which are fueled from anger or emotion are not rational.  Sometimes there are things I post that I wish I hadn't because people like to take them out of context (and accuse me of wishing I had never been born, for example), but to say that I regret them I cannot.  They are my words and my feelings, however I am feeling at that place and time.  Like any normal person I have times in my life where I am more emotional and dwell more on the negatives.  I also have times where I'm very happy and donor conception are not on the fore-front of my mind.  I DO in fact have a life :o)  Before I started Cryokid I was known for disappearing from the DC community for months at a time (at one point an entire year!), especially as a college student.  Being active in the community lends itself to constant rumination on all things DC and it's not always healthy.  Since blogging here I feel compelled to write frequently, however there are times when it is much easier to simply repost something from someone else (newspaper article, commentary, blog post, etc).   This is my emotional downtime.  It's when I focus my life on other things - friends, family, work, and other pursuits.

So, that is why I do this....this being Cryokid, talking to the media, searching, and giving advice.  This is what I am about, this is what my blog is about, and this is why I do it.

Sunday, August 15, 2010

AP wire article and loads of other updates!

Wheee, I've been super busy the past few weeks.  Interviews left and right - David Crary's AP article "Sperm-donors' kids seek more rights, want end to anonymous sperm donation" was originally published on Thursday and hit the AP wire today - several other articles should be coming out in the next few weeks.

I swear, as the saying goes, when it rains it pours!!

I would like to clarify ONE thing that was mentioned in the article.  "If I had to choose between being conceived with half my identity and half my kinship deliberately denied from me for eternity - or never being born - I'd choose never being born".  This comment was taken very much out of context from a blog post for last year.  In the rest of the post I elaborated on the fact that if I had never been born there would be no loss as I would have never existed.  And there is a difference between never being born and never having existed - the former assumes that a loss would occur, whereas the latter assumes none of that.

Also, as I pointed out during my interview (which sadly was not mentioned) is that while blogging that I may have over-exaggerated.  To say that I am not grateful or happy with my current life is a terribly untrue.  My point is that the loss associated with being donor conceived is something that I will carry for the rest of my life, and that to deliberately create a human being with that loss is unethical.  It does not mean I'm suicidal or hate my parents or my life.


In other news....

The DNA database (future home will be at http://www.donorconceptiondna.org) that Damian Adams and I are creating is nearing completion!!  Thanks to the amazing talents of John Avitabile (a CS professor and donor conceived adult), who is creating the framework database that will store and analyze member's results and compare their DNA to all other members of the database - our dream is becoming a reality!  We couldn't have done this project without you John!!!

For more information about the DNA database please refer to: "Donor Offspring DNA Database - UPDATE!"


The Federal Inquiry into Donor Conception in Australia (attempting to get retrospective access to donor records for ALL offspring) is still accepting submissions - I believe the date has been extended until August 30th.  You do NOT have to be an Australian citizen or donor-conceived to submit!!  A plea for submissions by Christine Whipp was posted to PCVAI:

 I would just like to add that at first glance, Caroline Lorbach's request for members of the PCVAI to send a submission on donor conception to a Federal Inquiry in another country sounds like quite a tall order, especially for anyone who is unaccustomed to writing about their feelings and experiences of donor conception, or on the topic in general.
By the same token it is all too easy to dismiss what happens elsewhere, under the auspices of foreign governments, as irrelevant to our own lives but what is happening in Australia today could be happening in our own back yards in a few years time. With enough support, Australia might just be able to pass a law giving retrospective access to donor information to all Australian donor offspring, regardless of which State they were conceived or when they were born. This would set a hugely important legal precedent to give leverage to the voices of donor conceived people and their supporters in other countries.
Making a submission to the Federal Inquiry is no where near as onerous as it first sounds. In the time it takes to pop into Starbucks and drink a coffee, any PCVAI member could visit the Donor Conception Support Group Website (www.dcsg.org.au), follow the links and make a submission to the Federal Inquiry using a pro forma letter that can be altered to suit individual experiences. [You might want to change the word 'donor' to biological father, for example and add a personal sentence or two.] It can be as simple and painless as that, or you could start from scratch and write whatever you felt appropriate if you had the time and inclination. You can even submit your response to the Inquiry in complete anonymity.
Anyone here can make a short submission supporting retrospectivity. It will only take five minutes of your time, but in the long run it could prove to be five minutes very well spent.
If you've got time for a coffee this weekend, give it a go.
This is the first legislation in the WORLD that is dealing with records and anonymity of donor conceived persons ALREADY conceived!!!  Please help the Aussies to begin the daunting task of changing these laws so that the rest of the world may eventually follow!