Facing the End of Anonymity

As you all know I’m a law professor and that means many of the folks I talk to are also law professors.  Over the years I’ve had countless exchanges, some casual and some more in the nature of debates, about the value of anonymity for those who provide sperm and eggs to people doing ART.   This remains a lively issue among academics.

It’s an important topic, both in terms of the big picture and for the individuals most directly affected.    It’s also one where my own views have changed dramatically over the years and are, I imagine, still evolving.   This probably makes it especially interesting to me.

Yet it seems to me that questions about the value of anonymity and the ways in which the law should/should not protect/promote it are being outflanked by reality.   Which brings me to this blog post.   It’s by Wendy Kramer, a co-founder of Donor Sibling Registry (DSR).  ( I think she’ll be writing regularly there, so you might want to keep an eye on that page.)

Anyway, what Kramer’s post makes clear is that no one can promise gamete providers anonymity anymore.   No matter what records are/are not kept, it is simply impossible to remove identifying information from the gametes.   Indeed, the gametes are the essence of identifying information and when the gametes are used for ART, the identifying information is necessarily passed along to the resulting child.   No one and nothing can prevent the child from accessing this information if she/he wants to.

It has always been true that gametes contain identifying information, of course.  What has changed is our ability to extract the identifying information and then use it to locate the gamete provider.   Again, as Kramer’s post makes clear, it’s often not even that difficult to do these days.

Now this doesn’t mean that all gamete providers will be identified.  There are at least two reasons why a gamete provider might not be identified:   First (and surely most important) the child and her/his parents may not care to do so.   Not all donor-conceived children do.   And if the child and her/his parents doesn’t care, it’s not clear to me that anyone else will make the effort.   Second, I’m pretty sure there will be individual cases where it will be difficult to impossible to locate the provider for particular reasons–say the provider lives in some isolated area that is really off the grid for one reason or another.

But this doesn’t change what I see as Kramer’s key point in her post–No one can promise a gamete provider anonymity anymore.    It’s irresponsible and perhaps even dishonest to do so.    It doesn’t really matter whether this is a good thing or a bad thing.  It’s just a thing we have to accept as part of the nature of our world.   People who are thinking about providing gametes for ART need to understand that their anonymity cannot be guaranteed even if that means that some people will decide not to proceed.

I think this also means that in many ways the law professor’s conversation about whether anonymity is good/not good is increasingly irrelevant.    But there are still many important conversations to be had.  It’s just that they are different conversations.

For instance, in a world without anonymity, the law still defines the rights and responsibilities of a gamete provider, as well as the rights and responsibilities of the people who use the gametes.   I also think that the law can (and probably should) define the rights of a child conceived using third-party gametes.   (I’m much less sure that the law can impose any responsibilities of the to-be-conceived child.)    The content of these various sets of rights and responsibilities is surely up for debate and discussion.    And sooner would be better than later, I think.  (There’s also the problem that different jurisdictions have taken quite different approaches to these questions, which creates a complicated patchwork and doesn’t make anyone’s life easier, really.)

Beyond that, legal structures surely influence our choices all the time.  And maybe this means that the good/bad question about anonymity does still have some importance.  The law in this area can be structured to encourage whatever choices we think people ought to be making.   For instance, if you think people should be choosing gamete providers who will be readily identifiable to a child (as opposed to donor’s whose identities can be dug out with some effort) then you might consider how legal structures can encourage that choice.  I’ve said before that I think making it clear that the provider has no parental rights and obligations vis-à-vis the child is one thing that might help, but I know this is open for debate.  Given that none of the questions here are really easy, it seems like it would be most useful to actually focus on the ones that still matter.

 

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23 responses to “Facing the End of Anonymity

  1. Humm… Although being european and not at all a specialist of legal stuff, I am afraid this text is more assertive than facts are permitting :
    1°) Gametes are identifying at 100% for….. the gametes !! Every gamete is a particular sub-ensemble of each parents DNA. Paternity tests are keeping an uncertainty, small but real.
    2°) “the nature of our world” : a strange foundation for a democracy…. I thought it was anyone’s ability to know what is good or bad for him/herself.
    3°) “the responsibility of donors,… the users….” Well, but there are some similarities between infertile and fertile conception : in both cases, conception is controlled children are no longer accidents. A natural conception is only the case where the donor and the user is the same person. What if tomorrow a child is suing his/her parents because he/she feels too small or fat, due to a gene that parents could have detect through tests. Introduce responsibility for infertile parents and donor,will lead to the similar responsibilities for other parents
    4°) think of the mothers : introducing DNA in family life could reveal some parts of mother’s secret sexual life. Don’t give tools to natural angriness, revenge, or parnoid trends.

    • Perhaps I overstated things, but I would basically stand by my assertions. There’s a possibility of error, probably for any number of reasons. But I don’t think anyone can count on those errors occurring in any specific case. Thus, I don’t think anyone can count on anonymity really.

      I was not specifically thinking of the sorts of responsibilities your third point seems to raise–which are interesting. I was thinking of a provider’s obligation, perhaps, to have provide identifying information that will in time be passed to the child. And I’m not saying (right here, right now) what exactly those responsibilities are–just that there might be some. Perhaps it is true that as we decide what those are we should consider that they may spill over to all parents/children. But this does not seem to me a definitive argument that there should be no responsibilities at all.

      On your last point, I think it is true that DNA testing can reveal things about what a woman/mother might have been up to. And that can be problematic. But this is just the way it is, isn’t it? There’s nothing to be done about it except to observe it?

      • Ok, let’s go to the limits of a paradigm where children have a “right to know” and “there is nothing to be done about it except to observe it” (because it is “the nature of our world”). (I don’t know why, but a red khmer image is crossing my thoughts ;-))
        1°) Anonymity is a clear concept, but Non-Anonymity is totally fuzzy, what would be the limits ?
        2°) the gametes being a long (ancestors) and broad (children, siblings, cousins,..) story, would this relatives have a co-responsibility and no right ?
        3°) what about others people pushing the donor conceived person to make researchs but only for their own curiosity (mother, wife, children). Couldn’t be parents, demanding first support to conceive, and years later acting for breaking the contract, seen as ungrateful people, logically being exposed to claims from donors ?

        Globally, I’m affraid this is not a matter of donor anonymity, but short or later a complete change of paradigm in the family and children/parents relationship due to DNA technology.

        I imagine that the result will be by far worst than the today situation. But it could also be that after a momentum, and a crisis, these DNA stuff would be rejected by the society, and finally produce more balanced paradigms

        • Just as a starting point, I am not sure I’d contend that children have a “right to know.” All I’m saying here is that the reality is that they will typically be able to know if they want to. So a statement of fact rather than a statement about the law.

          But the points you raise are quite correct. Once there isn’t anonymity there are any number of other questions to answer–like those raised in your numbered points. The legal system would need to answer them. And what I’m contending here is that, whether I like it or not, I think we’d better be focused on answering those questions because we are (for various technological rather than legal reasons) heading that way.

  2. “Indeed, the gametes are the essence of identifying information” Which is all I have been saying all along. We need to record the identity of individuals as the parents of their own offspring in order to accurately identify their offspring. You said gametes are the essence of identifying information but you don’t really need the gamete to identify someone as a parent; you can determine if someone is their offspring by analyzing the dna in any of their tissue. In fact, you don’t even need the tissue of the parent to determine that someone is their offspring you could use the tissue of one of their close relatives to extrapolate the relationship to the child. It’s done all the time.

    • All I mean to say here is that if you provide gametes you are necessarily providing information that can be tracked back to you, just as retina images and fingerprints can be. I don’t mean to extend this statement to the more complicated questions around formation of personal/psychological/social identity.

      • Oh I did not think you meant anything like formation of personal psychological social identity, quite the opposite which is often assigned and contrived. I thought you meant the hard facts of true identity the essence of which is who they are in relationship to other people in the world which is established by identifying who their biological parents are.

  3. “No one and nothing can prevent the child from accessing this information if she/he wants to.” You also said it’s ‘often not difficult’ to find parents this way and I’ll give a nod to the ‘often not’ part and say ‘not always difficult’ but it is typically terribly difficult. It’s a long painstaking process for most.

    • Fair enough. Does it also depend on passage of time? I’m thinking it’s much harder to find someone who provided gametes fifty years ago than to find someone who provided gametes ten years ago? I cannot say exactly why, except that it seems to me that more and more records are being kept.

    • And herein lies the inequity of it all. In support cases, the state often hunts down and tests potential fathers to ensure that the father identified for support purposes is the biological father and yet someone whose father or mother was a gamete donor gets no such help from the state all because of money. As long as someone is paying for the kid the state does not care if identity is accurate; when they are looking for someone to pin financial accountability on of course the only person they can say is truly accountable for supporting the kid is the biological father. It turns minors into objects it sucks.

      • It’s certainly true that the law is different for those cases where there are too few parents (and the state wants to find some more for support) vs. those occasions when there are either the “right” number or too many. Genetic connection is indeed employed to hook the parent when the state needs the support. On other occasions (for instance, in a number of states where a married couple uses someone else’s gametes) it isn’t used.

        I suppose the question is whether one can justify using different tests depending on whether you think there are too few or too many parents (or just the right number.) As you know, I’m rather a fan of consistency and so this bothers me, just as it bothers you.

  4. I am not clear how a donor conceived person could have any legal obligations since he/she was never a consenting party to the ART contract, which is not particularly binding in the first place. All the obligations we have to genetic fathers is a matter of common decency and a respect for their feelings, not necessarily for their right of privacy from us, their children. We ought to realize that our mutual relationship is not anyone else’s business and should remain private between us. Family Law is irrelevant and so is the extensive outdated guidelines of the ASRM.

    “Now this doesn’t mean that all gamete providers will be identified. There are at least two reasons why a gamete provider might not be identified: First (and surely most important) the child and her/his parents may not care to do so. Not all donor-conceived children do. And if the child and her/his parents doesn’t care, it’s not clear to me that anyone else will make the effort. Second, I’m pretty sure there will be individual cases where it will be difficult to impossible to locate the provider for particular reasons–say the provider lives in some isolated area that is really off the grid for one reason or another.”

    I am working on a reply to the earlier post about epigenetics, since I want to respond to Elizabeth Samuels’ excellent question about degrees of genetic influence upon a sense of identity. Like her, I don’t think that a lesser degree of genetic influence lessens the importance of genetics.

    To the point of this post:
    You say that two reasons will determine whether a gamete provider might not be identified. One, is that some children will not care to identify him (especially if their parents did not disclose the fact) and two, it will be difficult to impossible to locate some provider who lives in a remote area. In my search, these two reasons are weak arguments.
    My genetic father (my mother’s GYN) used his sperm for my conception during World War 2. It was widely believed at that time that genetics were unimportant, that children were blank slates. My bio-father must have felt that no one would ever find out since he left no paper record and he was not aware about the future technology I would use 69 years later to identify him. He did give me a record much more certain and totally accessible unlike clinic records: ½ of his DNA and all of his Y-DNA. The source for my determination of his identity came from a very remote source, both geographically and genetically. The wife of my sixth cousin lives in a small village in the mountains between Bergen and Oslo. My great-grandfather was born there in 1829, emigrated with his parents at age 8 from Norway and later moved to Utah in 1850. My sixth cousin’s wife noticed my connection to him on FTDNA as well as to a second cousin in Idaho. He is certainly my great-grandfather even though his DNA was never tested, After she notified me about this connection, she provided me with an extensive family tree showing how I was connected to her husband as well as to my second cousin, and another sixth cousin in San Francisco, through this man.. My second cousin provided me with an extensive family history which clearly shows that my Norwegian great-grandfather had a grandson whose anglicized surname matched my mother’s GYN. You said if the parents did not care to make an effort to search, that “it’s not clear to me that anyone else will make the effort.” The wife of my remote sixth cousin certainly did, from thousands of miles away.
    Or course, it’s obvious that not all gamete providers will be found but primarily if none of his children are searching. If just one of them does search, however, the probability of success is higher than you suggest and even makes one who isn’t searching more likely to benefit from a windfall of discovery of the one who is.
    Some donor-conceived people will not search of course, particularly if they do not know about their conception, but will use genetic genealogy sites to fill out their genealogies, to search for health indicators in their genes, or for any other reason. Then, they would find out that they are donor conceived from any half-sibling who does care to search and matches with this first person and contacts him. In fact, even if the donor conceived person and the gamete provider never go to one of these sites, their children, grandchildren of the DC person and any close relative of the gamete provider (parents, siblings, cousins, and their descendants) are likely to search on these increasingly popular sites and find an anomaly of an unknown close relative not recorded on their genealogy. Then it is simply a matter of that relative telling the story at Thanksgiving or asking either the gamete provider or the DC adult how this might be possible.
    In my case, a son of man who did not know about his conception and that man’s infertile father tested together on 23andme (the grandfather was dying at the time and we don’t know why he agreed to do the testing with his grandson). After getting the results, he matched with my half-sister (my first sibling connection), a stranger to him, as a first cousin or nephew but had no genetic connection to his now deceased grandfather. This seemed impossible to him, as he explained to my half-sister in a 23andme onsite e-mail. She suggested that the son ask his father to test since that may clear up the reason for the genealogical anomaly. His father tested and found out he was our half-brother and urged his three siblings to test as well. None of them had any prior suspicions. One brother was from a different gamete provider but the other two are also our siblings. Later, another woman who did not know about her conception did a search purely for genealogical reasons and she became our half-sibling. We have another pending half-sister on ancestry.com who has posted an extensive family tree which includes her father’s ancestors. Since she matches with four of my half-siblings and me (our other four siblings haven’t tested there) and our three first cousins and a niece from the GYN’s family, she must be utterly confused that none of us are on her official family tree. Perhaps she is in denial about these many unknown close connections or is too upset to respond to our emails to her.
    Even if I had not had the incredible good luck that the wife of my sixth cousin gave me, it was inevitable that I would have discovered my genetic father since his granddaughter, niece, three first cousins, and several second cousins have matched with me as close relatives or cousins on three different DNA web sites. Even if my nine DC half-siblings had not matched with me, I would have discovered my father through these several family members who weren’t searching for anything related to donor conception, which is one significant point that Wendy Kramer has made.
    So, like Wendy, I have also made the claim a few times before on this blog that anonymity is unnecessary, unworkable, and inevitably doomed. ASRM clings to this policy as a last straw. Several DC adults have also pointed out that the reliance on anonymity by professionals and gamete providers and even non-disclosure by parents is futile in the long run. Many DC adults have successfully demolished the seemingly impenetrable barriers against our individual searches.

    • There are basically two different ways one generally imposes obligations on people. One is by contract–quid pro quo. As you say, the child is not a party to the contract and the contract is not particularly enforceable. So that doesn’t go anywhere.

      But we also impose obligations on people as a matter of law. For instance, legal parents do have obligations to their children. That’s not because of contract. It’s because the law imposes those obligations on them. Similarly, if you drive a car you have an obligation to be careful. Not contractual. In this manner you could impose obligations on a child.

      But keep in mind I’m not saying I would.

  5. I understand that if I exposed the identity of my genetic father in a newspaper or online, or in conversation, that would be a tort violating his privacy. I suspect that my state legislature could pass a law forbidding contact between a minor child and his genetic father, without parental approval. I also realize that my genetic father could put a restraining order against contact if I have been already harrassing him continually for a relationship but could that happen before first contact? Could the state assert that I, as an adult, would harm him by seeking contact, without proving that assumption?

    • In general, laws have to be rational and so some evidence supporting the assumption of harm would be required. It could be general evidence. Or it could be anecdotal. In truth, it probably wouldn’t have to be a lot. You’d see it at a committee hearing in a state legislature or something like that, I would guess.

      Court’s will review laws to make sure they aren’t totally arbitrary, but unless you can point to some special circumstance the review is usually cursory. (Special circumstances are things like that the laws draw distinctions based on race.)

      I suspect this isn’t very comforting. But the real defense against a law like the one you describe (which I think would be a very bad idea) is that it wouldn’t be enacted in the first place. (At least I hope it wouldn’t.)

  6. Not only anonymity can’t be guaranteed anymore, also the idea that parents could keep it secret is shattered by DNA technology. They may do a DNA test out of curiosity, or for instance their children might do that or grandchildren. Problem is, technology will not tell the whole story. In some cases it may be clear ART was used, in some cases cheating could be incorrectly assumed. Time to tell the truth.

  7. With how available information is today with the Internet and Smartphones that it’s impossible to live off the grid. In the case of anonymous donors I think recent donors (Donating within the last 10 years) if a DC person wants to find the person who makes up half of their DNA they can be found at some point. I think eventually anonymous donation will be eliminated partly because anonymity will be impossible to be protected.

    • a sperm-recipient contract that I viewed (forget which bank) had as one of its clauses that the recipient (mother) will not seek out the donor’s identity. of course the kid is not party to the agreement, but its assumed that most kids won’t be able to undertake such a search on their own until they’re at least approaching adulthood.
      Then again, often parents are held liable for damages or caused by their minor offspring.
      The other question is, of course, whether such an agreement is enforceable.

      • I don’t think an agreement like that can be enforced. Of course, some people will feel bound by their commitment. But faced with a child who really wanted information, I’d also guess some people would change their minds. (This is assuming people actually read it and thought about it in the first place.)

        As you say, the child cannot be bound by it at all.

      • Some clinics and GYNs in the past even had recipients sign an agreement not to tell their children about their conception, also unenforceable like those requiring recipients not to search. The thousands of DC parents and many donors on Wendy’s site have violated those contracts and Wendy has said that some clincs have threatened lawsuits against her site for providing the means to make connections. Pure bluster and intimidation that they have never pursued. Most of the members of her group are parents of minor children, since they are the ones who have donor numbers, unlike those of us who were conceived prior to the advent of frozen sperm. Many of these parents have had their minor children tested through genetic genealogy genetic web sites, successfully finding gamete providers’ identities. The contacts are governed by general privacy laws, of course, and you can’t demand a relationship with these men, although many of them are more than willing to make contact. Personally, I have had more pleasure from finding siblings than from identifying my deceased genetic father or meeting his own marital children. I did have the good fortune to speak with him before he died but did not strongly suspect he was my father. At that time, I was still clinging to the false story he gave my mother that the man who helped create me was one of his medical students. Unforunately, he was very elderly at the time I met him and had diminished mentality due to a TBI he had suffered. He was 37 years older than I and so I doubt that we could have had much of a sense of connection. I did find him to be a wonderful man.

        Because of the hostility of those clinics and doctors who still continue to require anonymity and the unlikelihood of laws creating any kind of effective recourse against the unethical policies of the ASRM, DNA testing sites will be our best hope that anonymity will be eliminated. After more than thirty years of my own criticism of this practice and the efforts of many other DC adults as well as enlightened parents and donors. I believe I will live to see the end of it. That is something I never imagined would happen when my mother disclosed to me in 1983.

  8. Bill wrote: “I understand that if I exposed the identity of my genetic father in a newspaper or online, or in conversation, that would be a tort violating his privacy.” Can someone explain to me how this works? How is this so? Does this apply to anyone, regardless of how they are conceived, who shares the identity of their genetic father (or mother) in a conversation, newspaper or online or does it just apply to a ‘special’ class of people?

    • I’d actually be surprised if it did amount to a tort, but I don’t really know. Perhaps Bill can elaborate.

      • I asked this question to a lawyer I know and another person with knowledge in this area, they responded: “There is a tort action of invasion of privacy but I don’t’ sense it’s used much anymore and disclosing one’s parentage hardly seems like a situation that would support a claim like that. There’s always a defense that the disclosure was justified by some countervailing interest and I would think that a child would be able to argue that identifying their biological heritage is that kind of interest. Hard to know for sure without some legal research. It may have come up in a closed adoption context before.”

        And another person responded: “For a tort to exist there would have to be a legal duty of silence. Who promised confidentiallity?
        Certainly the child did not. I have never heard of such a legal case incidentally. It is of course also the case that on adoption, promises of confidentiality have been broken by thestate in order to allow children to identify their birth parentage.”

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