Friday, March 7, 2008

Fertility clinic fires and other strange but [un]true answers

A recent discussion that started on PCVAI a few weeks back was on the astounding number of office fires in which donor conceived persons records were destroyed across the globe.  I am not joking – really I’m not.  Apparently insurance costs must be through the roof for fertility clinics these days, as they seem to be at an abnormally high risk of office fires!  Okay…so you’re laughing now, right?  But I’m being brutally serious when I say that the number of DC adults who have confronted the fertility clinics their moms used only to be told that the information they are requesting was destroyed [insert random # of years here] ago and there is no records left from that long ago.  I have heard just about every excuse in the book, from office fires, to floods, to the doctor sold his practice and the records were lost, to [insert random bullshit here].

Now myself on the other hand, was not told that there was an office fire at Xytex, I was simply informed that records of orders placed were destroyed after 10 years…in my head I am picturing a long conveyer belt with records chugging along and as soon as they’ve been around for 10 years they drop off the edge into the infinite abyss of biological disconnectedness!  Since at the time I had no donor number I was back to square one.  I still am unsure if I believe this explanation or not.  Luckily however, being a large international sperm bank they still had records of their donors.  By finding the donor number in my mother’s medical records I was able to phone Xytex and the secretary sent me non-identifying information and his (at the time of donation) medical history.  It’s only been a month since I’ve had this information and even now I still feel that it’s surreal and I’m going to wake up and be back to having no information.  I do have his birthday, yet I have no clue where he was born or much else to go from there.

I guess my confusion is how they can turn such a blind eye towards our questions!  They claim that the donors WANT anonymity, however most donors weren’t even given an option of being open-ID before about the late 1980s!  It does not surprise me though, as the infertility industry seems stuck on voicing others opinions for them, only to continue their delusion that affirms their entire business practice.  It is as if they follow the old saying “children should be seen and not heard”, however they seem to deny that donor conceived children ever actually grow up!!  To them I am a mere child who cannot make a reasoned decision on my own, and therefore they are required to make that decision for me, which according to them is in my ‘best interests’.

At the end of this month there is a conference being held in Chicago to discuss the means of a voluntary national registry: 



March 28, 2008. 9:00am - 5:00pm

University Club, Michigan Room, 76 East Monroe St, Chicago, Illinois

Open to academic, clinical, and public participants.

Concerns regarding secrecy in the use of donor gametes have led to recent regulatory responses in a number of European nations and Australia. The United States, however, greatly concerned with potential infringement on reproductive rights and autonomy of participants, continues to lag behind in formulating a uniform national response. Instead, piecemeal solutions have been implemented by individual sperm banks, consumer groups and for-profit entities that seek to keep gamete recipients updated on significant health conditions of the donor or to match donor offspring with other genetically related donor offspring. These lay registries have emerged without public discourse, public accountability, multidisciplinary expertise, uniformity or oversight. As legislative proposals begin to emerge in the United States, the time is ripe for professionals most directly impacted by the creation of such registries to take the lead in the discussion and develop a feasible, acceptable and effective solution to benefit the full range of stakeholders.

Developing a single effective registry requires balancing the interests of the child, donor, intended parents, health care professionals and society.

In addition, conducting a risk/benefit analysis is necessary to protect, promote and enhance this important reproductive option and ensure the physical and emotional safety and privacy of all participants, including the resultant offspring. 

Proposed benefits of creating a voluntary gamete donor registry centralized within the reproductive medicine community include:

* Collecting and maintaining pertinent medical, health and genetic information

* Helping avoid identity issues or familial disconnect experienced by some children

* Preventing inadvertent consanguinity and enabling offspring to make informed reproductive decisions

* Enabling Assisted Reproductive Technology programs to share donor information with one another

* Ensuring that donors do not participate in multiple programs or more times than is medically and/or psychologically recommended

* Facilitating outcomes/epidemiological research that is currently lacking despite the thousands of births annually utilizing donated gametes in the United States

Tracking Change will explore the feasibility of creating a uniform voluntary gamete donor registry in the United States. Using a multidisciplinary approach, expert panelists will discuss the practical, theoretical, and ethical benefits and barriers of developing and implementing a registry with a particular focus on legal and policy considerations. The issues will be discussed from the perspectives of a range of stakeholders, including physicians, fertility centers, sperm banks, donor gamete recipients, donors, donor gamete offspring and society.


At first glance this conference sounds like an uplifting change to the current system in America, however after careful reading of the list of speakers (see conference website) you realize that once again the children are the last priority, and again the infertility industry is speaking on our behalf.  There is not a single offspring or donor asked to be in attendance – that is unethical in regards to holding a meaningful symposium on a possible national registry!!  When a donor offspring asked the conference planners if a donor offspring could attend and sit on a panel she was firmly rejected and told they did not have the finances to have another panelist and a professional in the field was speaking on our behalf.  That is absolutely ridiculous as we are no doubt the most important stakeholders in this endeavor!!  Again the offspring have been ousted and a “professional” is speaking about OUR feelings!  I can be sure that the professionals who are speaking for our interests are most definitely just martinets of the infertility industry and giving the impressions they wish to extend (ie, offspring who are well-adjusted and happy have no issues with missing links in their identity!!).

Considering donor insemination has been a “cure” for infertility since the 1880’s, the excuse that the offspring are only children and haven’t the ability to speak for ourselves is a ridiculous and a downright wrong assertion.  We are grown adults and our points of view should matter, as we are the ones who have to deal with the consequences of these unchecked assisted reproduction practices!

1 comment:

damianhadams said...

Hi Lindsay,
I have heard countless differing stories here down under as to why clinics do not have the records to give to the offspring or to match their records to.
I have become increasingly cynical about this with age.
Funny thing is that I have spoken to numerous other medical professionals who just do not buy it as well. Ones who have been around well before DC started and they were always trained to keep meticulous records and that they were always kept.