For those not familiar with Jane Doe's litigation, she is a single mother of twin girls, conceived by Donor D237 of New England Cryogenic Center (NECC) in 2000. Her daughters were born with potentially fatal health concerns and have had expensive and intensive medical treatments since their birth. It's been assumed that the girls inherited the conditions from their biological father, D237.
Jane Doe is filing a lawsuit in the state of Massachusetts for donor D237's medical records and his identity for her young daughters. She argues that NECC had informed her that donor D237 was willing to contact her daughters if she wanted a relationship. Now NECC is claiming that such statements were never said and that the donor is assured full confidentiality, including his medical records.
After the Boston Herald reported her lawsuit she sent the Boston Herald her response about her desperate attempt to provide some comfort for her little girls.
Most of the responses are hostile towards Doe and are from the obviously ignorant and uninformed masses of America. One poster in particular (thank you Karen for enlightening me to this) is a former donor from an unspecified bank.
TO RECIPIENT PARENTS AND THOSE TRYING TO CONCEIVE....BEWARE!!!!
These donors do NOT care about your children, or their health and well-being. The idea of an altruistic donor is a load of bullshit --- a donor who donated to "help" infertile couples would be concerned about the health of the children he creates, even if he wants to remain anonymous. Any donor who refuses to provide updated medical information is NOT an altruistic donor, and is NOT the kind of donor you want to create your children with!!!
Here are a few snippets of the comments of this anonymous donor:
"I was a donor for several years and according to a certain website I have more than ten offspring. (I'm not saying how many more) A couple of years ago I found out that I have a slow onset incurable disease that half of my offspring will inherit. I did consider telling the sperm bank but my wife was unhappy babout me doing so since the disease is quite rare and she was worried that our identity might be disclosed from our involvement in support groups."
"Although I am not happy that I may have passed down this disease to my offspring, I don't feel any responsibility for it. Overall I believe that my privacy is more important than notifying families that conceived through me and the law recognizes that with my privacy being constitutionally protected."
"My wife and I are also going through the stress of considering what to do about starting our own family. We want to ensure that any children we have are not affected by the disease. Ironically enough our doctor suggested using donor sperm. You couldn't imagine our response to that. We both said NO simultaneously."
"I do not feel that my offspring are my children. They share some of my genetic code, and some also share the disease bit of my genetic code, but that does not make them my children. Their parents are the ones raising them and the only ones responsible for them both financially and medically."
"I want to ensure that any child of MINE is healthy and that is why my wife and I are going to do pre-implantation diagnosis which is a very expensive form of IVF and not covered by insurance to ensure OUR children can be born disease free."
I am completely and uttlerly outraged by this donors comments, and if anything I think this PROVES why anonymity needs to be abolished!! If these men can donor sperm and cause so much pain to their BIOLOGICAL CHILDREN and to the families that they wanted to HELP, then the system as it currently stands is doomed.
Also remember that most donors are college students who need extra money. Having been a college student myself I know the mindset of 18-22 year old males. It's irresponsible and self-serving. They will LIE, CHEAT, and STEAL their way to making a quick buck --- especially if it involves something they enjoy! And lets face it, I couldn't find a single college guy who wouldn't want to get paid to jack off.
There are supposed regulations on donors, but they don't care. So long as they pass through the minimal tests for things like HIV, Tay Sachs, and a handful of others, and have a high sperm count, they are scotch free. They could care less if all the women in their family had breast cancer, or that all the men died at age 40 of heart attacks. If they're smart and want the money they will not reveal that information.
If an anonymous donor feels the way the above-mentioned one feels, and he publicly announces his cruel intentions, there are hundreds and possibly even thousands of others out there that are keeping their traps shut.
It is the behavior of this donor that will inevitably bring the end of anonymity in the US. Recipient parents and those TTC will not have it any other way. Yes, the sperm banks could care less. They want as many donors as they can get so they can make more money. They don't care about the children they are creating either. But the donors should care, at least enough to provide their biological children they sold the opportunity to know in advance of incurable inherited diseases that may strike them or their own children later.
If you are a recipient parent or are trying to conceive, this could potentially be YOUR DONOR, and your children could potentially be carrying the genes for fatal disease, and you won't even know what hit you until they are DEAD. Please speak up against this happening to more children!!! Talk to your congressmen, go to the media....support Jane Doe's fight for access to her donor's medical records, and his identity for the sake of her ill children --- not just for her children, but for all donor conceived children across the United States and the world! Do it for your own children!!
14 comments:
unfortunately even if the donor was identified he could not be coerced to reveal his own medical information any more than any other deadbeat dad (or parent)
Kisarita,
Interesting thinking, however I think that it is misguided because there is a significant difference between donors and traditional parents. Donors are required to provide a detailed medical history before they begin donating, they are required to go through rigorous tests to determine if they are eligible. No dead-beat dad/parent had to go through those steps to become a parent.
The fact that the donor had to supply medical history prior to donating suggests that even the sperm banks understand the recipient parents and child's right to know of potential illnesses/diseases that could be inherited. A donor that had a grandmother with breast cancer does not automatically kicked out of the program, but the parents will know and that child, especially a female child, will know for the future about the possibility and to do her breast exams and get her mammograms when she's an adult.
So if the sperm bank has attested to the importance of this medical information to be available to the parents and child prior to donating, this same mentality should be continued throughout the donor's life. This does not mean that the donor must be identified. It means that the donor needs to be legally required to update his or her medical history every 5 years or so, and to immediately update the sperm bank if any illness/disease appears.
This also means that there needs to be a mandatory offspring registry so that if a child is diagnosed with a disease, all other offspring created from that donor as well as anyone who has vials of his sperm will also be notified, and that donor's sperm is removed from the shelves.
The donor, by agreeing to be a sperm/egg donor, should at the least be required to provide that essential medical information to their children they sold, just as the children they raise are able to have that information.
This is not about making medical information "public". This information would not be available to the rest of the world. Only to the parents and offspring of that donor, for their benefit, and for the best interests of the child.
If there was ever a case for accurate birth certificates, then for me this issue flags it right up. It's just a peice of paper anyway!
But cynic that I am I wonder how many other cases there are like this that do not appear on-line or in the press. Such non-disclosure to the public happens.
It's like, I hate to be morbid, but in the UK the notorious Baby P (infanticide) case was/is not isolated but there is one such fatality a week. The UK don't like to horrify the public. Child victims of war, if we saw them, would too be grim. I have knowlege of public relations and more and more am wondering just how isolted an incident Jane Doe's one is :(
Still, I think it is counter productive to focus on medical issues in the quest to remove donor anonymity, because the banks could always create some kind of medical-update procedure that would continue to protect donor anonymity at the expense of their offsprings wish to know.
ASRM claimed that donors have an obligation to provide medical updates in an ethics committee report earlier this year. I think/hope there is a chance that regulation will move in that direction one day.
While, conceptually, I think it would be ideal for all donors to provide medical updates to their recipients, there are a lot of practical difficulties involved. For example:
*Which medical events should be reportable and which are trivial?
*Who is responsible for connecting anonymous donors to recipients who do not wish to be contacted?
*Can you impose this responsibility on donors ex post or does it need to be contemplated ex ante and incorporated into the donor contract?
*Is it morally justifiable to subject donors to a lifelong heightened duty/obligation when, as kisarita points out, biological parents who are also social parents of their offspring don't have a legal obligation to provide their children will complete medical updates?
*Not least of these obstacles is the common intention of many recipients to never tell offspring that they are donor conceived.
As a practical matter, this is yet another reason that recipients and donors should choose open donation, in my opinion.
As a donor myself, I think this guy has a moral obligation to make reasonable efforts to provide information regarding his medical condition to the children that resulted from his donations.
But, also speaking as a donor, I take exception and offense to your comments regarding donors, specifically: "The idea of an altruistic donor is a load of bullshit." I am deeply offended. When I was giving myself injections, having my blood drawn, double checking my family medical history, and triple checking whether the clinic had correctly recorded all of my information I was thinking about the children that would result from this process. When I send my own medical updates, I am thinking about the children and their well being.
I'll give you that it is inevitably the case that SOME donors will be people who don't much care about the children they create. Who is ultimately responsible for screening out the gametes of these "bad" donors? Ultimately, I believe it is the responsibility of the recipients. Having seen the way that some clinics and agencies work (again, from my perspective as a donor), I would advise recipients against reliance on the information that the clinics and agencies provide. There is no substitute for a direct line of communication between donors and recipients.
Hi Paragon,
While the ASRM might "claim" such ideas, there is no follow-through or concern beyond what the ethics committee agreed on. Without any regulation there is no forcing them to comply with this.
I even argue that the medical histories of CURRENT donors should be accurate. In most sperm banks the boys simply write down their medical history. Nothing is double-checked by the clinic and what is said goes. The few genetic tests that ARE done are not catching the many different conditions these donors are passing on, whether it is consciously or not. Knowing how 18-23 year old boys think and behave, I can guarentee that if one of them felt that something in their medical history would cause them to NOT be able to donate and therefore NOT get their money, they would lie. Not saying all would, but I think a majority would lie about their medical history in order the stay in the program.
My idea is that every 5 years the donor is required to update his or her medical information. IF a serious illness appears in-between those "check-ups" it would be the donor's responsibility to contact the clinic with this information as soon as humanly possible. However, they would not be required until their next "check-up" date. Remember, it's not just HIS or HER medical information, but their parents, siblings, children, etc. They would have an obligation to state that their mother died of breast cancer at age 60 (even if it was 10 years after he donated). Because currently the only information that offspring are given is that his mother is 45 and healthy! Well, duh. That doesn't tell me anything, now does it?!
I think that this responsibility SHOULD be put in the donor contract. In the UK and many other countries in Europe donors are told they lose their anonymity when their first offspring turns 18. If they can contractually agree to something like that, why can they not simply agree to update their medical information?!
Biological parents that raise their own children I would hope and pray would be justifiably concerned with the welfare and health of their own children. Those children have accurate and up-to-date medical histories at their doctors offices. Biological parents raising their children do not have a legal obligation to provide medical updates because it's a ridiculous thing to imagine. They live with their children.
The fact that these donors CHOSE to do what they did, that should submit them to duties that are rightly justified for the acts which they have committed (created children on a contractual agreement). This is not a one-night stand. This involves monetary transactions, clear codes of anonymity, and an industry.
That fact that you went through all you did simply TO donate, it's water down the drain to say okay every 5 years I am obligated to these children I helped to create to provide them indirectly with information that will allow them to live healthy happy lives.
The reason I was so shocked by the donor I mentioned in this post was because he showed absolutely NO concern for his offspring. I think even donors who do not want to be known, I think there has to be a little something tucked away in the back of their head thinking about those children and hoping they have good lives. Unless anonymity were to be revealed, which it should not by simply provided updated medical information to the bank/clinic, there is absolutely nothing for that donor to fear. And it provides peace-of-mind and knowledge their their biological children deserve to know because they have been stripped of knowing him.
I think you're very right in that the clinics do not provide some of that information. Honestly, even such trivial things as occupation are completely sensationalized by the doctors (telling a patient the donor was a medical student, only to find out 23 years later he was a welder is what one mom learned last year). The doctors can and will tell patients anything to make them happy. If this is that their donor was a good jewish medical student then so be it, but the likelihood of him being an presbyterian or atheist janitor is just as realistic!!
I'm sorry for offending you, but I still hold firm on my belief that there are no truly altruistic donors. An altruistic donor would not actually be able to go through with it. Altruism: the belief or practice of selfless concern for the well-being of others.
Considering here in the USA, donors are paid huge sums of money. That immediately defies the idea of an altruistic donor. Some donors like the idea that others had to rely on them. Not altruistic. Some donors like the idea that their sperm was faster or better than someone else. Not altruistic.
I think that there can be some altruistic feelings, but not truly altruistic. And this donor had not a shred of altruistic sense both in his personal life, and what he felt was acceptable to be shared. If anything, he is the type of person who finds humor in others suffering and wants only the best for himself but no one else. He is a truly sick person and I think he gives a bad rapt to many other donors.
Not all donors are paid huge sums of money. Some aren't paid at all. Some egg donors are paid just enough to compensate for the time they will have to take off from work (unpaid) to participate.
Thinking more about the altruism thing... do you think it is possible for any action to be "truly altruistic?"
After reading "Some donors like the idea that others had to rely on them. Not altruistic," I was thinking about the fact that a lot of people do "selfless" things because they get a sense of satisfaction out of helping or knowing they did the "right thing." Does the sense of satisfaction from helping prohibit the act from being classified as altruistic? And if so, what would be an example of an altruistic act under that construction of "altruism?"
Also, when you say that no truly altruistic donor would be able to go through with it because altruism is contingent upon a selfless concern for the well-being of others, do you mean to imply that "donation" (even open/known donation) categorically results in a detriment to the well-being of the resulting child?
I think that is exactly the point I wanted to make, that altruism is not something that human beings are truly capable of, except for a select few individuals. Mother Theresa I believe is a person who lived her life altruistically.
I think that many things like charitable giving are not really selfless. First off, you typically get a tax write-off for charity money, secondly there is that sense that others will see it and think you are a better person. To me, this is not selfless.
To do something truly selflessly is something that many of us really are incapable of. Not because we are bad people, but because we want to be acknowledged and appreciated for our "good deeds". I don't see anything WRONG with this, in that its the whole idea that it gets the job done. But it's not selfless.
There's a difference between doing the right thing or doing a good deed and being selfless.
I do not know much about "open" donors --- as opposed to ID-release. To me, ID-release is a situation that is attempting to redress a grave injustice, but it is not the solution. Open donors, from what I have heard can have extreme variations in how they approach the relationship.
I think that "open" donors are the most altruistic of all the sperm and egg donors, because they are taking responsibility emotionally/physically (not legally or financially) to be a supportive figure in that child's life. I think as far as my definition goes, that's about as "altruistic" as donors could come.
I think when I wrote that I meant that no truly altruistic donor could ever donate anonymously. Does that make more sense??
I do understand that SOME donors are not paid that amount of money, but most are.
yup, makes sense! I wanted to get your take because the whole debate over whether the word "altruism" can ever be used to appropriately describe donors is something that a few academic researchers have contacted me about through my donor blog.
altruism is usually a motive when someone does something for someone that person knows, not for a total stranger.
especially in sperm-donation. you might be altruistic (though in my opinion still misplaced) if you donated sperm to your best friend. But, You have no idea who those people are, so how can you say you are so concerned about their welfare?
beyond that, you have no idea who they are, so how do you know they are appropriate people to raise a child- ANY child, let alone yours?
Regarding medical confidentiality:
Sorry, but legally no person can be compelled to disclose medical information to a family member, except for a legal guardian.
But perhaps a contractual obligation can be imposed- that the donor's obligation to disclose can be a part of his contract, and if he has been later discovered to be dishonest he can be sued for breach of contract.
Kisarita,
I really like that idea about altruism. I agree that it still is a somewhat misguided decision, but at least they understand who is raising their children. To me I can't imagine selling my own biological children and not know or care for their well-being -- children that could be being raised by pedophiles or something. That's not altruism.
I understand your point about legally disclosing medical information to a family member. However, in traditional circumstances if a parent or grandparent falls ill with a certain disease that child is being raised in that family so they know that "grandma and two aunts had breast cancer" so a young woman would know that she is at extreme risk.
Compare this to a donor-conceived young woman. She may not know because even if grandma and two aunts did have breast cancer, the chances of them having it when the donor/father is 18 years old (mom might be 43 and sisters teenagers) is slim. So if that donor never updates his medical history, any female offspring is at extreme risk for breast cancer but does not know it. And of course, unless you have a documented high risk for it, you cannot get a mammogram until 40 (seems like its now going to be 50 with the new guidelines!!).
I believe that by signing that contract and deciding to donate sperm/egg and selling your children you have abdicated any privacy rights on their medical history.
"You make me sick, and I hope that one day your biological children will trace you (sorry charlie, but anonymity ain't gonna be around much longer with advances in technology and science.....) and haunt you down and make you pay for your actions and non-actions."
...well that might be very painful for his kids... but one of these days the opposite will happen, some anonymous sperm donor will be told he has a terminal disease that can only be cured by a transplant from an immediate relative... watch him try to move heaven and earth to try to access the identities of his kids! What will the banks say then?
Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!
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