SHE Pod Season 2 Episode 10: Lisa Dive and Ainsley Newson on Eugenics and Reproductive Carrier Screening
1:17AM Oct 4, 2021
Speakers:
Kathryn MacKay
Ainsley Newson
Lisa Dive
Both
Keywords:
programme
eugenics
paper
carrier screening
eugenic
ainsley
lisa
genetic condition
people
conditions
important
test
reproductive
screening
individual
newborn screening
decisions
screened
question
critique
Hello and welcome to the SHE Research Podcast. I'm your host, Kate MacKay. And today I'm joined by Professor Ainsley Newson and Dr. Lisa Dive to discuss their paper, 'Reproductive Carrier Screening: Responding to the Eugenics Critique', which is out now in the Journal of Medical Ethics. Hello, Ainsley. Hello, Lisa.
Hi.
Hi there.
Nice to see you
And you.
Thank you. So thanks so much for joining me today. This was a really fun paper to read. And, you know, it's about eugenics, which is one of those words that you can't help but get excited about when you hear it and think like, Whoa, what is this paper about? (laughs)
Even you saying that word then it's just made it all the blood leave my limbs. (laughs).
I was gonna say I can see Ainsley getting nervous, just as you say the word. (laughs).
It's a big word. Yeah, well, I'm looking forward to hearing about the paper. And I'm sure our listeners are too. So um, I guess the first question then is just to ask one of you or both of you to give our listeners a kind of overview of what this paper is actually about
Sure, just to step back a bit as well. So Lisa and I are investigators in a big research project that's happening in Australia at the moment called Mackenzie's Mission, or the Australian Reproductive Genetic Carrier Screening Project. And this project is offering about eight and a half thousand Australian couples a type of genetic tests that tells them whether they have a chance of having a child with a genetic condition or certain genetic conditions. And Lisa and I are doing lots of bioethics research within that project. And so of course, when you talk about genetics, and you talk about genetic testing in the context of reproductive decision making, immediately you think about the kinds of children that should be born or should not be born, or might exist in the future, and who and how we should make choices about that. And I remember when this project was announced, it's funded by the MRFF and was personally announced by Greg Hunt when it was starting, and Greg Hunt is the current Australian health minister. On Twitter, there was immediately a reaction from lots of individuals around this being a project to nationally implement eugenics in Australia. And so from the get go, we knew that engaging in a serious way with the critique of eugenics when it comes to carrier screening in the context of reproduction was something that we absolutely had to do. So we, in this paper, wanted to really carefully unpack, well, what is eugenics? What's wrong with eugenics? And how might eugenics apply in the context of reproductive carrier screening? Is it the same thing? Or is it slightly different? And so in our paper, we do all of those things. And then we say, it's really important to pay attention not just to the context of individual decision making with respect to eugenics, but to also pay attention to the societal context in which those decisions take place. Because that societal context can be really important for individual decision making too, and that what we need to do, if we do that well, then we can make population based reproductive carrier screening ethically acceptable.
Yeah. And I feel like you've spoken a little bit there to what the kind of motivations were behind the paper. Because it seems clear, like you, you kind of had a heads up at the very outset that this was going to be an important thing to address. So one of the things that I kind of liked reading about it is that you took this individual and this population view. So I wonder if you wanted to maybe just say one of the... some of the key points that you make in the paper, kind of give us a highlight of the of the sort of argument because I especially found that individual versus population kind of toggling back and forth to be quite interesting.
Yeah, so I can respond to that if you like. So I think in thinking through how to respond to this criticism of population wide carrier screening programmes... so the way that people would generally respond to the eugenics critique of carrier screening programmes, is to emphasise freedom of choice and individuals having the freedom to choose. So nobody's being made to undertake screening, nobody's being forced to take up screening. And also nobody is being forced to make any particular decisions based on their screening result. So typically, if a couple receive a result that they have an increased chance, which would typically be a 25% chance of having a child with a particular genetic condition, then if they're not pregnant yet, they might want to take some steps to try and conceive an embryo that does not have that genetic condition, or if they're pregnant already, they might want to do some prenatal testing. And there might be some further decisions to make if there's a prenatal diagnosis, and the idea is in ensuring that the programme isn't eugenic, nobody's being forced, either to have that information in the first place. But also, nobody's going to be forced to do any kind of testing or to terminate a pregnancy that they want to keep, and all that kind of thing. But what we really, as we sort of dug into the ethics of it, what really became clear is that the context in which individuals and families make their reproductive decisions, they're very strongly influenced by a whole range of societal norms. So this can be ideas about what it is to be a good parent, what a desirable family looks like, what it is to be a responsible parent, is a big deal, a big part of that as well. And it's also in the literature, there's a fair bit about routinisation, that when a test is offered, as part of what might be perceived as routine prenatal or preconception health care, then if someone refuses that test, or prefers not to have it, then they can be seen as not being a responsible parent. So those population wide, or really, societal norms really shaped the way that people's choices can be constrained. So when we say 'oh everyone is free to choose whether they participate in the programme or not', we have to really think how free are they actually, if there is a lot of societal pressure to do the right thing, and undertake the screening. So...
yeah, right, and that the right thing is talked about in terms of the test itself, and then maybe even also, the, what you choose after that.
Yeah, definitely.
Ainsley, did you want to add to that?
No, other than just to sort of on a very practical sense, say, there can be a variety of reasons for undertaking a test like this. And not all of them necessarily lead to embryo selection, or termination of pregnancy. There are a variety of conditions that you can screen for prior to pregnancy that can also inform treatment in the very early days of life. And or some people may just wish to have this information to prepare as well. Now, they're likely to be in a minority, but it can be very important information. And we do, of course, have newborn screening as well. And we have a really long established highly successful newborn screening programme in Australia. But newborn screening has a little bit of a time lag just because of when the sample is taken after birth. And it goes back to the lab. And there are a handful of conditions, very small number, but there's a handful of things where acting, you know, really quickly in those very early days of life can be very important and can have a really significant outcome for the well being of the person who's screened. So it's just to kind of emphasise that there are rationales for screening that don't necessarily involve selecting who and who won't be born.
Yeah, I think that one of the things in the paper that I really liked too, is how you were kind of thinking about, there's the kind of genetic or eugenic rather, intent. And then there's also the kind of unintended eugenic outcome, which might, which is the kind of population effect of a bunch of individuals just actually making choices, more or less autonomous, as you were saying, Lisa.
Mm.
Hmm. Working with our scientist, colleagues, it's actually quite interesting that there is a strong belief, you know, if you look at the kind of nuts and bolts of this, that actually collectively, all of these individual decisions are unlikely to have any dent at all in the rates of these conditions existing. And one of the reasons for that is, it's a drop in the ocean with respect to difference in society. But also, sometimes these conditions arise spontaneously as well. And no test in the world is going to be able to predict that. And so what... we had to draw this really fine distinction in the paper between, you know, these tests subjectively being eugenic in the sense that they have that, you know, measurable impact, versus the perception that they are eugenic or the eugenic intent, as you've already said. And so it was something we tried to tease apart, both to sort of be accurate in terms of of what we were hearing from our clinician, scientists, laboratory colleagues, but also we had to sort of engage with what the reviewers were saying as well. And so trying to bring those two things together, took a bit of crafting.
I do think that this would have been a challenging paper to write, partly just because of the word eugenics and the kind of, I mean, just even trying to wade into this. It feels like kind of dangerous territory, but was there anything specifically challenging about it that you would comment on?
I wouldn't say that there were sort of any, you know, deep in the weeds, challenges that you don't ordinarily have with the paper apart from the one that you've already mentioned, which is that it's really hard to talk about eugenics in a calm, considered academic way, just because of everything that comes along with that word. And we were, you know, obviously trying to be incredibly mindful of that. And to take that that word as seriously as we could. And we were a little bit worried about being roasted in the public domain. We have published this paper, open access, and we also wrote a blog post about it on the JME website, because we felt that it was really important to take that criticism seriously. And to do so in the most open and transparent way that we possibly could. We also wanted to be very precise and balanced. And so this is published in the Journal of Medical Ethics. And one type of paper that that journal takes is longer articles. So this is a slightly longer piece than, say, a regular article in a JME, because we felt that it needed that length in order to really do the topic justice. And also, it was quite hard, because what we set out to do was to try and sort of say, look, is reproductive genetic carrier screening eugenic or not? And, as one of our reviewers pointed out, we don't really directly come down with a yes, no question. But I also think it's slightly, you know, it's something that ethicists are often expected to do is to say yes or no in answer to your question, and it probably won't surprise you at all to know that it's sometimes not easy to answer, just in that exact way. So we we ended up making a more subtle argument in our paper, which is that, you know, reproductive genetic carrier screening has the potential to be eugenic. But there are differences between how eugenics happened in the past and how it's happening now, or how it might happen now. And what it is important to do is to build in lots of features into any screening programme involving carrier screening for reproduction in the future, that you need to do, you need to have those features in place in order to prevent that programme from being eugenic, whether that be measurable eugenic or eugenic in intent. And I think the latter is probably the more important one. And so you know, we've got a whole host of things that we go through in the paper, and we probably don't have time to go through all of them in detail. But most of them involve paying attention to those societal aspects as well as the individual ones. And, you know, making sure that the voices of people who live with the conditions that are being screened for are present in the debate as well, I think that epistemic question around, whose whose conception or whose vision of what a genetic condition is, like, actually gets to prospective parents when they're making their decisions. And I think that's really important, as is helping facilitate people to make decisions that are in line with their values. It... helping to improve the overall socio environmental context for people who live with genetic conditions. And, you know, trying to ensure that the programme is as equitable as possible in its in its design and its implementation. And, of course, obviously, not pressuring people to have this test, which is, you know, not what this programme is about, but the overt pressure and then the more subtle societal pressure, as Lisa has already mentioned.
Yeah, and Lisa was there anything you wanted to add to that?
No, I mean, I guess one thing, which I think we haven't mentioned, specifically, which I think is really was really fundamental to our thinking, as we were sort of setting out on this paper and how to address the eugenics critique, in a really serious and considered way is there is that very loaded nature of the term eugenics. But if you actually unpack what does eugenics actually mean, applying the science of heredity for the benefit of humanity, and then looking at the eugenics programmes of the 20th century, which were universally acknowledged to be very, very unethical. But then looking specifically, what were the features of those programmes that made them so horrific, and we really distil that down to two main features. So that was, as Ainsley mentioned here, the the definition of what makes a desirable person or what makes a person a better person, what kind of people are we trying to choose through this kind of programme. And if we so in the 20th century, many eugenics programmes had very narrow and specific ideals of what was a desirable kind of a person. But if we leave that very broad, and as Ainsley was mentioning, we incorporate a wide variety of perspectives on what it is to live with disability and difference in our society. And really build that into the programme, then that overcomes that ethical realm that was committed by past eugenics programmes. And then the other feature of the eugenics programmes of the past which were so unethical was the kinds of methods that they deemed to be acceptable in order to achieve the goals of the programme. And so that was all sorts of coercive practices and, you know, horrendous things like involuntary sterilisation and stuff like that. So if we do everything that we can, in terms of also paying attention to the wider societal impact of the programme, to ensure the genuinely voluntary nature of participation, and then what to do with that information afterwards, then, then that's kind of like a serious way of engaging with the eugenics critique and saying, Yes, carrier screening does have some elements in common with eugenics of the past. But we are not committing the ethical wrongs that were committed by those programmes. And... but then we do also, I think we have a paragraph in there that says, although it is to some extent, eugenic, it's just not a helpful term to use, because it is so, so very loaded due to the history.
I'm going to just add one more thing, which comes up a lot in our conversations with the clinicians and scientists in the project, which is, and it's something we do allude to in the paper as well, or we mentioned it explicitly, actually, which is that carrier screening in Australia has been requested for decades. So there's been a lot of advocacy from clinicians, but also a lot of advocacy from people. So... including from families who parent and care for children, and now adults who live with the conditions that are screened for. So of course, we can say that opinion alone does not mean that it's justifiable, because those opinions could have been formed under erroneous information or a skewed idea of what it's like to live with conditions. But the fact remains that a lot of the conditions that are screened for have significant morbidity in childhood. So they are what's called severe conditions or serious conditions, which is something that Lisa and I are working on at the moment. So I think I just thought it was important to mention that this is not something that's come out of science with no public engagement, with no public interest. This is something that there has been long advocacy for, and it's about getting that balance, right. It's about offering this programme in a way that is as ethically defensible as it can possibly be.
I feel like that's a really good kind of overall takeaway message. But I still want to ask the question. (laughs).
Of course.
Is there a final sort of, is there a kind of, yeah, one or two things that you really hope people will take away from this paper?
Mm hmm. I think I've got a point and Lisa's has got a point. So I'll say mine, which is, you know, this discussion about eugenics is not going to go away in reproductive genetics. So it's really important to tackle it explicitly to think about it carefully. And then we can build it into how we do these programmes well.
Yeah, I would agree with that. And also, I would add, that the standard responses saying that a carrier screening programme is voluntary, is insufficient. And it needs really, when we're designing these kinds of programmes, we really have to pay attention to not just the freedom of individuals to participate or not, but also to the way that the programme is described, designed and implemented, and ensure that there are not built in assumptions, normative assumptions in the way that the programme is delivered, that are going to influence people's capacity to make their choice and about whether to participate or not, you know, in a genuinely free way, that is - genuinely free is the wrong term - in a way that is authentically aligned with their values and their ideals about the kind of family that they want to have and the kind of life they want to live.
Great. Well, thank you so much. Such an interesting paper. It's a really wildly interesting and hairy topic and area. But I think that you have managed to strike that kind of take the critique seriously, try to address it in the kind of cool and calm way. So well done.
Thank you.
Thanks so much for joining me. And thanks, everyone for listening to this episode of The she research podcast. You can find Lisa and Ainsley's paper, linked in this episode's notes along with a full transcript of our conversation. SHE Pod is hosted by Kathryn MacKay and produced by Madeline Goldberger. You can find our other episodes on Spotify, Radio Public, Anchor, or wherever you get your podcasts of quality. Thanks again for listening. Bye.