Hello and welcome to FAB Gab. this is the podcast for the International Journal of feminist approaches to bioethics brought to you by fab Network. My name is Kathryn MacKay, and today I'm joined by Serene Ong from the National University of Singapore to discuss her paper, 'who counts as family, a pluralistic account of family in the genetic context'. Hi, Serene. Hi, Catherine. How are you?
I'm good. Thank you. Thank you for having me.
Thank you for joining. Um, so just to kick us off, could you give the listeners the elevator pitch for your paper?
Okay. Okay, so one of the cornerstones of bioethics is the confidentiality of the patient's medical information. However, confidentiality is not absolute. In second certain circumstances, there might be grounds that the patient's information are to be shared. So genetic information raises very interesting ethical tensions because it can affect family members of the patient in ways other types of medical information do not. In particular, genetic risk information arising from genetic testing can provide biologically related family members with information about their own potential genetic risk for certain diseases for family members who are at risk of carrying the same diseases, the patient, early awareness of genetic risk can improve health outcomes for these family members. So this patient did his paper ask within the context of genetic information, who counts as family? So at first pass, the answer seems obvious, biologically related family members, right. However, from an ethical point of view, the answer becomes more nuanced. In this paper, I propose that we should take a pluralistic view of who counts as family.
And so what does that mean to take a pluralistic account,
I think we should have a more flexible and open approach into who counts as family. Because the academic literature on genetic testing and genetic technologies is overly focused on the clinical implications of the disease and therefore on biologically related family members. For instance, once patients are identified as carrying a heavy dietary condition, they are encouraged to inform their close family members about the condition and ask family members to go to a doctor for screening. So this is known as cascade screening. So it's targeted active process. But non biologically related family members may also have a substantial interest in the patient's genetic information. For example, parents of adoptive siblings may want to know so they can take better care to children adopted siblings, and they want to know so they can provide support to the patient. So I argue that non biologically related family members should also be considered family, even in a genetic context. Right. And by them considered, I mean, officially recognized, because sufficient recognition is important. So I think the definition of family is well studied in other fields, feminist studies, family studies. So in genetics, the assumption that family or those who are biologically related is known as the biomedical definition. But I think that definition is limited.
So I wonder if you could maybe say something about what some of those limitations are.
Okay, so you, of course, the biomedical definition is necessarily considered because of the genetic context, because of the etiology of the patient's disease. But it alone is not sufficient. The trouble is that it's very narrow, it narrows our understanding of family and kinship to only biological relations. And the focus on biological relations emphasizes particular norms that about family that may not reflect the reality of patients. So let's say you have two brothers, Billy and Joe, they share the same parents so by they are considered family by that definition. Even if Billy and Joe don't like each other very much, and they do not consider each other family at all. So the biomedical definition, therefore does not have the capacity to consider the social emotional aspects of illnesses. And it's I think that's important, because he only asked who it was very, he has a very specific criteria for who they can suspend me if you're biologically related your family so it doesn't differentiate between what the what work the family does, so if you have never been in contact with that, with that patient as a new your total You have to come in and do something about it. You're like why?
Right if you're sort of estranged. Yeah, yeah. Yeah. So were there any particular motivations that you had in writing this? Is this connected to a broader body of research that you're doing? Ah, yes,
actually. So I'm currently doing my PhD in my final year. And it looks my PhD research looks at ethical challenges in disclosing genetic risk information to relatives. So of course, somewhere very, very fundamentally is, well, who are these family members that we speak of? Because if we, so I'm arguing that they have some, perhaps some right, or perhaps the patient has a responsibility to those family members, by the first place, who are this family members?
And I think in your paper, you sort of you're not arguing that we need to get rid of the biomedical definition. Exactly. It seemed to me more like you want to layer other things on to it, but that'd be right.
Yes, yes. Because I think I mean, as I was saying earlier, it is necessarily considered because of the context of the issue. We're looking at a disease context in a clinical setting and therefore, like it or not, if you want biologically related, you can't argue it away, you have that risk as well. So it is necessarily considered I think, my point is, it is not the only links that we ought to consider and other other links, legal links, affective ties, caregiving, relationships, the outs are very important.
What is it that makes those other things so important, given that the context is one of genetic information genetic risk, which puts this heavy emphasis on biological relatedness clearly, so what is it about those other considerations that makes them important in considering who the family is in this context?
Okay. So, I started by asking, So, with definitions with other definitions of family are relevant in a genetic context. And after looking at a range, I argue that the legal and functional definition so important, now the legal are important, I think, because they can be enforced in ways that other definitions cannot. So I give an example it is not in my paper in Singapore, if an unwed mother gives birth to a to a baby, that child is not considered her lawful child. So that child is not entitled to benefits and subsidies allowed to illegitimate children, such as housing and inheritance. And of course, the parent can legally adopt the child which costs time and money. But more importantly, from an ethical viewpoint, why was the wanted biological child considered electrical money in the first place. So this so because legal definitions have heard can be enforced and can create a lot of harms when applied. So with legal definitions, we typically think of exclusion harms when individuals or family forms are not recognized and therefore denied rights and benefits. For example, if a parent of a child in the hospital is not legally recognized as the parent, that person might not be able to make decisions for the child. And one an unexpected thing that I came across when I was writing this paper was the idea of inclusion harms that could result and this is because when individuals are considered family to the patient, they then are regarded as having all as owing certain responsibilities towards the patient. So I realized that knowing who counts as family is also important because it delineates who should not be counted as family. So I get this example in my paper related to surrogacy. Cambodia regards commercial surrogacy as human trafficking and parents who are adopting the children legitimately are groups with human traffickers. So when Cambodia ban commercial surrogacy in 2016, pregnant surrogate mothers who were caught when the ban was in force, were told that they must raise the children they carried until the children's is 18 or face up to 20 years in jail. Now the the some of the stories as readings that the some of the surrogates had no genetic link to the fetuses that you were carrying at all, because the fertilized eggs came from the couples who paid for the surrogacy. However, Cambodian law defines the woman who was pregnant with the child as the mother and therefore responsible for the child. So in this case there both inclusion and exclusion harms the surrogate parents who want the child suffer exclusion harms, the child could be genetically diverse, but they are unable to contact the child, the surrogate mother who probably signed up for to be a surrogate for financial reasons who may or may not have a support structure must now take care of a child for at least 18 years, the child so it's likely to be harmed because the surrogate mother did not want the child, this could be detrimental to the parent child born. So of course, some cases might work. All right, and the surrogate parent develops affection for the child. However, this situation is complex, has the parties involved are linked to numerous are linked in diverse ways, and have my effectors that support their agency. So what if the surrogate didn't have a supportive partner or is single and without support. So applying only one definition of family, in this case, the legal definition is like taking a blunt instrument to a very delicate situation.
And the other set of definitions, which are considered very important to be included, other functional definitions, so they ask, they are based on the work that family do. And in many ways, this is most intuitive to us, right? Because we when you ask somebody who is family, and you think of the effective relationships, you think of the caregiving relationships, you don't think about, oh, it's because they're living with me in my household, this family. But you know, that place of residence is what the census uses to define your family. I mean, they call it a household in that case. But intuitively, that's how we regard family. And in England, even in a clinical setting, you can start from a clinical problem, you have this disease, but how it unfolds, who you tell by your disease, how these diseases manage, are then carried along by the functional definitions of family, who are the people that will support you? What are people that you will tell, even though you know, you know, intellectually, you should tell the people who are most at risk, but practically, who's the first person you will call, you know, when you get the discount news? So I think in my other research on disclosure, and find that the relational reasons play a very huge role in patients tissue decision making and to discard this affective ties, is, is very limited.
Yeah. I mean, maybe this is obvious. But one clear way in which that really makes sense is that the partners in a romantic couple are pretty much never related. Or we, we think they ought not to be related for some pretty good biological reasons. But that's the first person that a person would might call, right. They're not going to be impacted by the genetic information. But they're the super important support structure. Person who kind of like automatically would count as family for someone.
Yeah. Yeah. Yeah, it was very interesting. And this is part of my, so I interviewed patients for my research, and someone asked them a question like, So are they, under what circumstances would you think you should break confidentiality, right? And minimally, who ought to be informed? And the vast majority of the patients I interview will say, my spouse, right, because they have a right to know. So it's not my sibling, or my parents is my spouse. Some will say is because they could potentially have children together, and therefore, some another being is affected. But even for those who say, because the people I interviewed, they have cancer, so they might not be able to have children, even in the absence of potential offspring, they say my spouse.
I mean, that makes sense to me.
Yeah. Yeah.
Were there any challenges that you face when you were conducting this research?
Yeah, I mean, family is a well known issue, right? Everyone has an opinion on it. So it's like the bike shed effect, build a bike shed, and everyone has an opinion on it, build a nuclear power plant and everyone will defer to the experts. So how forego an engineer wants it? The amount of discussion is inversely proportional to the complexity of the topic. There has been around for a long time. So I was nervous and unsure about proposing a pluralistic account. I this notion that this question of who counts as family is well trodden? Who am I to say this is who you won't necessarily need to include as family and also because the topic is well discussed. It is also difficult to find a gap where I could come in, even though I did see a gap in the genetic content Next, it was a challenge to read up on the current literature on the topic is just huge. In that the reviewers for the paper were very helpful in pointing me to all the loads of the literature that I had not considered. So I think the other challenge was that this was my first time I'm writing a theoretical paper. So I'm very thankful to my supervisors, who very patiently read the numerous drafts and walked me through my naive thinking initially, that your
name is paper. Hmm. I wanted to ask you one question about the argument that you have part of the motivation, you present for exploring what the definition of family might be in the genetic context rests on the interests that people might have in knowing genetic information. And so it ranges as you said, like a spouse might have an interest in knowing but not because they're going to be impacted by the actual genetic findings. But rather for the carrying implications, or just purely for the effective implications they love, the person who has now found this out about themselves. Or a child might have an interest of a completely different kind, without any effective links, they could just have an interest because this will impact or potentially impact their own health or the health of their offspring or something like that. So you kind of unpack the reasons for figuring out what family means in terms of different people having different kinds of interests. But then you say that you hold back on saying anything about what kind of obligations there might be as a result. And so I wanted to maybe press you a little, and ask whether you'd given that any thought, since writing the paper about what kind of obligations to disclose might arise out of this pluralistic account of the family and this variety of interests that people might have?
Um, yes, it should be. Yeah, I know, I, towards the end, I was very careful in what this account can do and cannot do. And I think, because this account only considers who is to be included, it doesn't. It doesn't consider factors like, what is the disease? How is it passed down? how severe it is? I think it cannot answer questions like, well, therefore, is the patient responsible for anything? You know, because if the condition is severe, but not actionable, informing the deaf family member could cause more harm. If the condition is not severe. There was the point, I don't know the person is a stranger, for example, to me, but if the condition is severe and actionable, then we start to think about, alright, okay, maybe we have a responsibility. And then. So what is the responsibility based on is something else I'm working on? Now, separate from the paper. And I think that if, if the person is considered family to you, you have some sort of responsibility towards that the other person, I think, should be based on the idea of moral responsibility, because you are cognizant of the effects of the information, you hold some sort of obligation to, therefore, do something about the information in their mind through telling the other person. And this is a very strange thing, I think it should be based on moral responsibility, but not based on any sort of familiar responsibility. It is very strange, because here I conclude that, well, this person is related to you, somehow, it's family. But it should not be morally justified on familiar responsibility. In the end, I mean, it can be a very big reason for why people do certain things, because of effective reasons or something, or because they have they feel that they have a duty to their offspring or their family. Patients undertake a lot for their family. But I think that justifying it based on family responsibility, potentially makes people who are vulnerable, more vulnerable, saying that, you know, you don't like that person, but because you're now family, you have to do certain things. And maybe it's because I guess from a feminist point of view, from an Asian point of view, you know, I'm quite aware of the ways families can put a lot of pressure on vulnerable groups. So I think can be a very good reason, but it should not be a justifiable reason. Interesting,
interesting. Can I ask you one more question that probably come Straight out of left field. Yeah. So one of the examples that you provide in your paper is about a sperm donor who has 24 offspring? Yeah. And I was the I mean, that kind of blew my mind to the first place. And it made me wonder if on your account of, you know, this layer to count of who counts as family, at least in some circumstances, they would still be included. And maybe they would have some kind of responsibility even. Do you think that like, maybe there should be limits on how many times a certain sperm donor can be used for? Like, does it make sense that any one person could have 24? offspring? Do you think in the sperm donation world, should we be limiting this?
Okay, so I Okay, I will admit, I'm not very familiar with this sperm donor, donor. This is an unfair question, but I was looking at it, because I was looking for examples, because I, some doctors told me that no, this is not possible, this scenario that you painted, it's not possible because you know, donors are screen, all sorts of diseases and so on before they can even donate. Right. And I've came across cases, actual cases where this happened. And, and because sperm, sperm donors can theoretically, father, a lot of children. The few cases that will describe your literature were described, because they affected a lot of children and other cases, which the details of most parts, so I didn't quote it affected up to potentially 36 children, because there's how many times the sperm donor sperm was used. So and it was a commentary. And I think the writer concluded that in the end, something that would you say, like, okay, because of this issue, right? It has potential to blow up to be really big, because it's with the technology is all too easy to use the spot many, many times, you know, unlikely no real case where you know, father, child, and then after two years, you realize something's up. Or maybe he'll rethink my second and third kid. In this case, it's not so yeah, like, I think, perhaps we should have limits on the number of times the sperm can be used. Yeah. Yeah.
I mean, it struck me that we might consider it.
It's like, it's like, technology amplifies the benefits, but also the harms. I came across this funny story. When email was first introduced, the developers, I believe, as IBM was doing research, and they ask people, How many times do you write a note to your colleagues and so on, and they didn't estimate the amount of server space they need. And then they released email, and then they realized within two weeks, the amount of server capacity do we have is not enough because you forgot that with emails, you can see see people so suddenly, instead of writing a one note, a handwritten note one person cannot see the 10 other people, so the effects are amplified. Yeah,
exactly. Well, thank you so much for speaking to me stream. This has been really fun.
Great. Thank you, Catherine.
Thanks for listening to this episode of FAB gab. You can find serines paper linked in this episode's notes along with the transcript of our discussion. Fab gab is hosted and produced by me Kathryn MacKay. You can find our other episodes on Spotify, radio, public anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye bye
