Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation, by Daniel Groll, is a fascinating exploration of attitudes about whether donor offspring are entitled to knowledge of their donors, but the issues and questions it raises are pertinent to adoptees and NPEs/MPEs as well. Comprehensive and academic in approach, it may be challenging to readers not well-versed in philosophical discourse, but it’s key reading for anyone with a stake in the debate over access to genetic knowledge. And although Groll ultimately stands against anonymity in donor conception, some NPEs and MPEs may take exception to some of the arguments that led him there. Therefore, we asked him to address some of those arguments, and he readily agreed.
Severance was the target of a critical article last year in a publication called Real Life that accused it of numerous transgressions, including promoting bionormativity. It insisted that the magazine’s content poses genetic family as measured by DNA as “the norm against which all forms of family should be judged.” It further states that if we view the genetic family as something from which one can be severed, non-genetic family “will inevitably be understood as secondary, extraneous, and even pathological.” Additionally, it charges that those of us looking for genetic information are indicating that “biogenetic kinship is the most true, essential, and valid form of family” and that such a belief places queer families in “legally precarious positions but undermines the larger value of ‘love makes a family’ for all families.” The argument rejects the idea that there can be a desire to know one’s genetic history that is apolitical. Clearly, I don’t believe Severance makes any such assertions, and based on having heard hundreds of stories and experiences, it’s obvious that most of us grew up with non-genetic families. I, for example, was raised by a man who was not my father. He was my family. I didn’t wish to have another father, but I did wish to know who my biological father was. I didn’t imagine my biological family would be a better family, or a more real family. I simply wished, as I believe most people who lack this information do, to know from whom I got my genes. My question is, how does simply wanting that information valorize traditional families or diminish nontraditional families?
Before I answer this, I just want to explain my connection to the issue of donor conception since people inevitably wonder about it. I am a known donor to close friends who have two children. The children know both who and what I am in relation to them. Our families are in regular contact. From the get-go, everyone agreed there would be no secrets and that we all need to be open to how their children understand their experience and let that guide us. Maybe the fact that I’m a donor will cause some of your readers to stop reading, but I hope not.
On to your question! One thing I want to make clear is that I think people who create children with donated gametes should not use an anonymous donor. So I am totally with you: I don’t think that wanting genetic knowledge—as I call it—necessarily or always or even usually valorizes traditional families or diminishes nontraditional families. One thing I try to do in my book is to make exactly this case. There are really good reasons for taking people’s desire for genetic knowledge seriously without committing ourselves to the view (which I don’t subscribe to) that biological parents are normally the best parents or that the traditional family form—of a man and woman and children that are genetically related to both parents—is somehow the best kind of family.
Having said that, I think it’s worth taking seriously the idea that an interest in genetic knowledge is not apolitical, if that means that it floats free from, or exists independently of, the contingent cultural norms, practices. and institutions that shape our desires. I want to be really clear: this isn’t a point about the desire for genetic knowledge in particular. Rather, I don’t think we should see any desire as obviously apolitical. Even what we might think of as our most basic desires—for sustenance or for social connection—take the particular forms they do as a result of the culture they are embedded in. We might put it this way: all of our desires are filtered through, or suffused with, the culture (the norms, the values, the practices) they are located in.
As a result, I think it is always worthwhile to ask two questions about our wants, desires. and interests: 1. “In what ways have they been shaped by our cultural milieu?” and 2. “Is that shaping a good or a bad thing?” In the book, I talk about certain gendered desires – like, for example, a boy’s desire to not cry in front of his friends—as examples of desires that are a) clearly shaped by our cultural milieu and b) a bad thing.
Now, I don’t think the desire for genetic knowledge is like that. I’ve already said that I think we should take people’s desire for genetic knowledge seriously and that doing so leads to the conclusion that people shouldn’t use anonymous donors. But I think it’s undeniable that we live in a culture that highly valorizes genetic connectedness and often tells simplistic, reductive stories about family resemblance, genetic ties, the significance of “blood” etc. I think it’s worthwhile for everyone—not just donor conceived people or others who lack genetic knowledge—to interrogate their commitments about the significance of genetic ties in light of the culture we’re in. We should all ask, “Why do I, or do people in general, care about this so much?” and “Is it a good thing or a bad thing?” I try to give an account in the book about why many people care about genetic knowledge in a way that shows how it can be a source of meaning. But I also try to show that, oftentimes, people’s reasons for being attached to genetic knowledge are shaped by forces that do unjustifiably valorize the biogenetic conception of the family.
Why can’t I uphold the rights of people who wish to create nontraditional families and still want my genetic information? Why is it an either/or? Why is it not acceptable to honor and uphold nontraditional families and at the same time say that genetic knowledge also matters?
I think it is acceptable! Indeed, that’s the position I try to carve out in the book: we shouldn’t see the interest in genetic knowledge as ineluctably bound up with biogenetic normativity. One can do exactly what you say: honor and uphold nontraditional families and at the same time say that genetic knowledge matters.
A problem emerges, however, when people put an emphasis on the significance of genetic knowledge—and genetic ties— that automatically downgrades the status of non-traditional families to “second best.” I’ve seen this attitude on display in a number of contexts. Sometimes the idea is that someone who isn’t raised by their genetic parents is (usually, though not always) worse off for it. Sometimes the idea is that a life without genetic knowledge is necessarily and seriously deficient. Sometimes the idea is that contributing gametes for the purposes of procreation without the intention of raising the resulting child is, by itself, morally unacceptable (equivalent, perhaps, to abandoning one’s child). I take all of those ideas to downgrade—if not outright reject—non-traditional family forms. So to the extent people’s attachment to genetic knowledge goes through those ideas, then I think there is a tension between caring about genetic knowledge and honoring non-traditional family forms. But again, I have no objections whatsoever to your way of thinking about things.
It seems that the objection to wanting genetic knowledge asserted by some individuals creating nontraditional families has to do with the fear that their children will be somehow less connected or see their parents as somehow less than traditional parents when I believe there’s no research or even anecdotal experience to suggest that is true. Is that right?
I think you’re right. Certainly, parents who do not want their donor conceived children to know that they are donor conceived sometimes cite as the reason that they’re worried the child will be less connected to their non-genetic parent. One thing seems clear: when people find out later in life they are donor conceived, that very often does cause a rupture. But the issue there seems to be mostly about secrecy and deception, and not about the fact of genetic non-relatedness itself. As far as I know, there is no evidence that people who are donor conceived and have never been led to believe otherwise are generally less connected to their non-genetic parent. Part of the issue here, though, is that we would need a better of understanding of what “less connected” even means. One thing I would definitely want to reject is that “being connected” is a zero-sum game so that if a donor conceived person forms a connection to their donor they are thereby less connected to their social parents.
It’s important to note here that it’s only some families that can realistically keep their donor conceived child in the dark, namely heteronormative families that can “pass” as “traditional” families (i.e. families where children are genetically related to both parents). I think doing so is, generally speaking, deceptive and wrong. I think oftentimes a parent’s worry that their child will not connect to them in the same way if they (the child) know they are donor conceived reflects the parent’s own preconceptions about the significance of genetic ties as well as, sometimes, shame about not being able to conceive (particularly for men).
At some point in Conceiving People you say that people can be influenced or educated to believe that genetic history is not as significant as some would have us believe. There seems to be no evidence to assert that genetic information is unimportant. On what basis can that claim be made?
This is a great question. One thing to say up front: clearly genetic information can be super important for medical reasons. I do not want to deny that! Nor do I want to suggest that we should try to “educate” people to believe otherwise. But the medical reasons for wanting genetic knowledge are not—for many donor conceived people—the whole story: if it were possible to get the relevant medical information without knowing who your genetic parents are, many donor conceived people would still want to know who their genetic parents are. So, when I suggest that maybe we can move people toward caring less about genetic knowledge, I don’t mean that people should care less about the medical reasons for wanting genetic knowledge. I mean, rather, that perhaps people can be moved to care less about genetic knowledge for the reasons that go beyond the medical reasons.
What do I mean when I say that perhaps people can be “moved” in this way? To answer this question, let me lay out one key idea I argue for: while genetic knowledge can provide a rich source of meaning in answering the question “Who am I?”, I don’t think it is either the only source or a necessary source. I think there are ways of telling a rich and truly complete story about who you are as a person that doesn’t put a lot of emphasis on genetic lineage. Now combine that thought with one I discussed above, namely that we live in a society that puts a lot of emphasis (in my view, undue emphasis) on the significance of genetic ties. These two thoughts together suggest one way that we might move people—everyone!—to care less about genetic knowledge, namely by working to make society less bionormative overall, where that means we try to change our cultural schema so that lacking genetic knowledge isn’t necessarily seen as having this massive void in one’s life. That’s a tall order (as are all calls to effect change at a societal level). I don’t have anything particularly insightful to say about how to go about doing that.
At the individual level, one thing I say in the book is that people have a choice about how to construct their identities, about what parts of their life to treat as important and which to treat as comparatively unimportant. In retrospect, I would have not put things in terms of “choice” because I don’t think it’s really possible to just make up your mind to either care or not care about something. What I was trying to convey is that I don’t think there is a fact of the matter about who we, as individuals, are. There’s not a single answer to the question “Who am I?” out there, waiting to be discovered. Rather, there are many different rich, full answers to that question and not all of the answers require having genetic knowledge. So, it’s not about “educating” people, but rather creating a culture, a climate, where there is less pressure—from all avenues of life —to pursue what I call the “genetic route” to answering the question, “Who am I?”
Crucially, I think one of the ironies here is that insisting that genetic knowledge doesn’t matter at all or withholding information from people is not the way to create that climate. Quite the opposite: I think practices of secrecy and anonymity function to heighten the perceived significance of genetic ties. I think honesty and an openness to what the philosopher Alice MacLachlan calls the “abundant family”—a notion of family that extends beyond the typical notion parents and children—are more likely, over time, to put genetic knowledge in its proper place as a source of identity determination, but not an absolutely necessary source.
What about truth? How can wanting to know truth be dismissed as somehow unethical or immoral? How can truth be immoral? Couldn’t it reasonably be argued that trying to deprive someone of their birthright—of information most other humans have—is deceptive and unethical or immoral?
Let me tackle the second question first! I think it is indeed deceptive and, generally speaking, unethical to not tell a donor conceived person that they are donor conceived. What about not giving people access to genetic knowledge by, for example, using an anonymous donor? The central argument of the book is that that too is, in general, unethical (I wouldn’t call it deceptive, though, unless it’s paired with non-disclosure).
I’ve almost answered your second question, but not quite, because you put things in terms of people having a “birthright” to genetic knowledge and I didn’t use that term in my answer. I don’t use the language of “birthright” for two reasons. First, just as a philosophical matter, I’m not entirely sure what I think about natural rights in general, so my thinking just doesn’t tend to run in the direction of explanations that appeal to natural rights. But even if it did, I think it’s well worth asking what makes something a right in the first place. In other words, I’m not satisfied with saying, “Well, it is my right to have this information and there’s nothing more to be said.” I think rights call for explanations, so even if I did want to put things in terms of rights, I would still want to go on to do all the stuff I do to explain what gives rise to the right.
Your first question—about whether truth, or wanting the truth, can ever be immoral—is super interesting. I don’t think truth, as such, is either moral or immoral. It’s just the truth! Facts are neither moral nor immoral. But I think that wanting the truth can be immoral. Suppose I want to know some embarrassing fact about you so that I can blackmail you. My wanting the truth, in that case, would be immoral.
Now, wanting genetic knowledge is not at all like that. I’m just giving a case where it seems pretty clear that wanting the truth can be immoral. My point is just that if someone wants to defend the right to genetic knowledge, it’s probably not best to make that case by claiming that it is never wrong to want the truth. We need to know why people want the truth…and that returns us to some of what we discussed about interrogating the source of the desire for genetic knowledge.
Who benefits and how do they benefit by wanting to discourage the gaining of this information?
This is a great question, and it’s not one I take up in the book, at least not in detail. I think there are four broad communities that benefit from practices of anonymity. The first community is heteronormative parents who want to pass as a “traditional” family and don’t want anyone—least of all their child—to know that they have a donor conceived child. I think this interest is often born out of a sense of shame about being unable to conceive, combined with the kinds of worries you mentioned above (e.g. that a child who knows they are not genetically related to one of their parents will, as a result, love them less).
The second community is non-heteronormative families—gay and lesbian couples for example—whose status as parents has been, and to some extent still is, legally and socially tenuous. Living with the prospect that the donor might swoop in and claim parental rights—and that the law might side with the donor —is profoundly unsettling. A friend of mine describes it as living with a feeling of “terror,” and recent developments in the legal landscape in the United States—like the recently “Don’t Say Gay” law passed in Florida, the legal attacks across the country on reproductive rights, and the legal attacks in some states on trans people—show that that feeling is not remotely unfounded. I think those of us that have not lived with the prospect of having your family torn asunder—or your whole identity targeted—by the law can have trouble understanding the force of this concern. It’s understandable—to put it mildly—why, in that context, people might care that the donor is anonymous.
The third community, of course, is the fertility industry which has a massive interest in ensuring a supply of donors and avoiding limits on how many offspring can be conceived with the gametes of one donor.
The fourth are prospective donors who donate to make money and also to help people who cannot conceive, but do not want any involvement at all with their genetic offspring.
How much should we care about these interests? Let me start with the fertility industry. I am not an expert on the fertility industry (and, I’ll add, I have absolutely nothing to do with it), but I have little-to-no sympathy with their set of concerns. The same goes for prospective donors who want to be anonymous—I argue in the book if you’re going to donate, you shouldn’t be an anonymous donor. I can understand, of course, why a donor would want to be anonymous. But I argue that those interests really don’t count for much at all.
I am, however, sensitive to the interests and concerns of the first two groups I mentioned. Crucially, I don’t think such concerns win the day. In the book, I consider why prospective parents may prefer to use an anonymous donor and—while I understand where those preferences come from—I find them wanting when compared to a donor conceived person’s interest in having genetic knowledge.
I’ll also add that I think I think the best way to address the legitimate concerns of the first two communities is not by upholding practices of anonymity—which, as we all know, are increasingly impossible to uphold in the world of 23andMe etc.—but rather to transform the cultural norms and beliefs about the nature of families so that, for example, infertility is not a source of shame, the bionormative family is not seen as the “gold standard” (to borrow a phrase from Charlotte Witt) of family forms, and the law provides protections for non-traditional family forms.
You stop short in your book of weighing in on the right to know. Could you look at this and comment not as a philosopher but as a person with curiosity. Reverence for ancestors has been communicated since the beginning of time. Genealogy is the world’s leading hobby. People have always and will continue to want to know where they come from. If the vast majority of people in the world, now and apparently in all time and all cultures, were able to know who their parents are and that knowledge mattered to them, is it reasonable to think it isn’t a problem for those of us who are deprived of that information? Perhaps reduce it to an absurd point. Say, bread isn’t necessary for life, but if 95% of the people in the world want bread and are allowed to have it and you can’t have bread, wouldn’t you be upset, and might you not wonder why you are not entitled to have bread, even if it weren’t vital to your life? Why are all the philosophical arguments you construct necessary if, as the studies you cite suggest, the majority of donor conceived people feel that genetic information matters? Why is their lived experience not enough to demonstrate that, for whatever reason, they feel impoverished by not having the same genetic information others have?
I want to reject the dichotomy between looking at things as a philosopher and looking at them as a person with curiosity! For me, philosophy is all about being curious and trying to get to the heart of things. To be sure, I don’t think it is the only or the best way to be curious or to get at the heart of things: music, poetry, art, fiction, creative non-fiction, not to mention all the other academic fields of study, are also conduits for curiosity and thinking things through. Philosophy is just one way. But it’s a way that speaks to me. There’s not “Philosophy me” and “Here’s what I really think me.” It’s all just me!
So, when I consider your fantastic questions as a person with curiosity, I unavoidably take up a philosophical perspective. And when I do, it seems to me that it’s not enough to note that lots of people want something in order to conclude that they should have it or are entitled to it. Now: it’s definitely relevant. Indeed, my whole argument against anonymity is centered on the fact that the majority of donor conceived people want genetic knowledge. But—at the risk of sounding like a broken record—I think all desires, all wants, are candidates for critical scrutiny. We should scrutinize the forces that generate the wants, desires, interests, and aims that people have. Sometimes we’ll see that the forces are benign or even positive. Other times we’ll discover that they’re not positive. And still other times, we’ll discover that it’s a mix.
The point is just that we shouldn’t treat people’s desires, interests, or aims as beyond scrutiny and as the thing that settles the matter of what people should have or be entitled to. We need an account of what is behind the interests, desires, etc. I try to provide such an account when it comes to the desire for genetic knowledge—among the population at large, not just among donor conceived people. And I try to show that even if certain problematic cultural forces are in play, the desire for genetic knowledge is nonetheless worthwhile and should be respected. Anyway: that’s why I spill so much ink on this topic.
Daniel Groll is an associate professor in the philosophy Department at Carleton College in Northfield, MN and an affiliate faculty member at the Center for Bioethics at the University of Minnesota. He writes on a variety of issues in ethics and is currently spending time thinking about the nature and significance of family resemblance. When he’s not doing philosophy, he’s probably making music for kids with Louis & Dan and the Invisible Band. Get a 30% discount on Conceiving People with the code AAFLYG. Find him on Twitter @dang_pigeon.
