Hello, everyone and welcome to the SHE Research Podcast. I'm your host, Kate MacKay. And today I'm joined by Ainsley Newson. Hi Ainslie.
Hello.
How are you?
I'm well, thank you.
Good. We're here together today to talk about Ainsley's forthcoming paper, which is called 'The Promise of Public Health Ethics for Precision Medicine: The Case of Newborn Preventive Genomic Sequencing'. And that's coming out in the Journal of Human Genetics.
Yes.
Excellent.
It's coming out in a special issue that's dedicated to ethical, legal and social issues in genomics.
Oh, cool. That's awesome. Is it coming out soon?
Do you know I don't actually know. I think it might, hopefully come out online before the whole issue is put together as an issue. I did the proof just over a week ago, but I haven't heard anything. So it might be that they're holding it back to wait for some of the other papers for the issue, which this space as soon as I know, you will know.
Fingers crossed, it comes out soon (laughs). So Ainsley, I found this a really interesting paper to read. And I wonder if you could give our readers a kind of overview of what the paper is about?
Sure. So I guess I'll start with my motivation for the paper, which is I've worked in this field for a long time, I've always been interested in ethical issues in genetics. And now genomics. And because I've now worked in a school of public health for over eight years, I guess, my thinking has been augmented by looking at populations as well as individuals and families. And I noticed a trend in the literature, which is when a population application of genetics starts getting discussed... while there is some really great scholarship about, kind of, population health and public health, and the ethical issues therein, a lot of the scholarship is also tackling these issues from a much narrower, clinically informed lens. And so what I wanted to do in this paper was to take an application of genomic sequencing, which is getting quite a lot of attention, that is sequencing newborns, it's it's something that is quite prevalent in the media and the academic literature. And I wanted to look at public health ethics as a way of approaching problems and say, 'Well, how might it help in this area?' And I think it will, and I think it will enrich debate, I think it will nuanced the debate. And so I kind of tried to untangle all of that in less than 5000 words. And as we might get on to, that took me a while to work out how to do and a lot of stuff went in and then came out. But ultimately, it's about why taking a look at public health ethics and certain forms of public health ethics can actually really help us to assess some of the implications of these new uses of genomics.
Yeah, that's really interesting. Maybe, I think it would be really helpful if you could maybe just explain, I guess, as briefly as possible, cause I'm sure it's very complicated... what is really involved in newborn preventive genomic screening or genetic screening? I'm never sure if I'm using the right word...
I think it's kind of genomic, if you're looking at the genome as a whole generic tends to get, although I'm sure anyone trained in genetics will be jumping up and down and shouting right now. But I think it's, you know, genetics tends to be more of an approach looking at single genes or small collection of genes, whereas genomics is using a particular form of sequencing a particular technology that allows you to look at a lot of genetic material at any one time. And then there's a whole bioinformatics pipeline, like a way of interpreting what you find out.
Right.
But newborn preventive genomic sequencing is - or screening - is still not really in a public health system anywhere yet globally. But it is getting political attention in a few different places. And I think Australia, that would be the case as well, there's definitely discussions about it happening. The only place I know of where there is a specific trial happening is in the United States. And that's happening in one particular healthcare system there. And it's being done under a research protocol. And in the United Kingdom, the Health Minister there towards the end of 2019, started making noises about it. But then obviously, the covid 19 pandemic happened and they had much greater things to think about. So I think the reason why it's been talked about for newborns is that they are a very handy population in which to implement a public health intervention because most newborns globally are born in some kind of healthcare setting, they tend to stay there for a little while. And even if they don't go home, if they go home quite soon after being born, they have fairly regular contact with healthcare services for the first period of their life. And at the moment, we already have a really effective, highly trusted public health programme to screen newborns for a range of inborn diseases, of various kinds. And that has been a programme that's been around, perhaps even since the 60s, it started with one condition and has got bigger. But actually some really interesting things are happening there as well. I should add, though, that this is mainly biochemical screening. So while there are one or two things where there might be genetic follow up, at the moment as a, what we call a first line test, it's highly irregular to do a genetic test in a newborn as a population implemented test. So so this is a really proven programme, it's very effective, there's high uptake. And so some people are now starting to say, "well, shouldn't we be using the powers of genomics?" And I use that in quotation marks to, you know, make this way better than it is ah but, then obviously, the kind of counterpoint to that is well, will it make it better? And so I have a section in my paper about where genomics is at basically, like what's good about the technology, but also a lot of the limitations, and there's no getting around the fact that it's a really hyped technology. And a lot of the time it gets to get tends to get talked about in slightly, you know, breathy sentences without actually really digging into a lot of the limitations, not least, it's really poor, ethnic representation in databases. It's a really significant and slightly intractable issue at this point in time, although there's lots of really clever people trying to do something about that, including here in Australia. So I think ultimately, this is about bringing in a different way of testing into an already really proven public health programme. But the question is, do we actually need it? I think that's one, although that's not really a question I address in my paper, because that's more it's kind of got scientific and epidemiological elements to it, as well as ethical ones. And if we are going to do that, then what might it add? And what might not add? Like, what might it take away? Or what harms might it cause and they are things that are relevant to any ethical analysis. And it is something that I think, looking at it from a public health ethics perspective, recognising, of course, that there isn't a single public health ethics perspective. But using lenses like those that people who do public health ethics use... I just use the word lenses and they're going to kill me.
(laughs)
But I think ultimately, you know, using approaches that are informed by that way of thinking will provide us with some extra extra things that might not have come up otherwise.
Yeah. And in your paper, you mentioned, in particular, how paying attention to solidarity might in particular, provide something new, at least, a way of evaluating some of the questions that you just mentioned, sort of, I guess, not the... what utility will this provide? So you do touch on that a little bit, which was good. But just sort of what does it... what does it mean? What does it look like to be doing this? And why would we do this? And under what circumstances would it be ethically acceptable to do this?
Yeah, absolutely. So in the paper, I adopt a form of solidarity that's been espoused by Angus Dawson and Bruce Jennings. And, you know, there are a few different ways of looking at solidarity. But I really liked what that one had to say, because it takes an approach to solidarity that doesn't necessarily involve being individualistic, it's a very... you know, a collective notion. And so this is the notion of standing up beside others of various kinds. And so it's sign of standing up with, standing up for, standing up as, and it allows us to shed some light on stakeholders whose interests and needs might otherwise be overlooked. So there is a tendency in a lot of techno-science, you know, fancy new science to think about ideal people, or to think about people who are highly resourced and highly health-literate from privileged populations. Yet, not everybody is going to have those resources available to them. And so in my paper, I have a whole section on solidarity, which actually, I think when I first wrote the paper, it was way over deadline, like these things always are. And I kind of got to that end, and I kind of espoused a notion of solidarity. And then I was like, yep, this, this is good. That was basically what I said...
(laughs)
And so unsurprisingly, the very nice reviewers who gave me very helpful and constructive comments came back and said, 'nup, you got to push it a bit further than that'. And so when I re-drafted to resubmit, I really kind of went into it in a lot more detail. So I took that the notion of solidarity as dorsen and Jennings have kind of synthesised it or developed it and applied it to a whole heap of different stakeholders, including newborns themselves, including parents, and you know, just thinking about society more generally, but also contrasting that with a part earlier in the paper where I talk about autonomy, which is a way that we quite often talk about this type of screening and specifically with new borns, we would be talking about two things. We talked about parental autonomy. And we would talk about the future autonomy of the newborns themselves. And so solidarity actually provided a really nice way to, to push back a little bit against certain ways that we think about autonomy, which is: 'more information is better. It's our own liberal individual right to choose this'. But actually, there's kind of an agenda going on behind all of that, which is, we should only be thinking about these things in liberal individualistic ways. And so that's what I push back against.
And you've touched a couple of times now on the sort of process of writing the paper. So I guess it makes me wonder if there were any particular challenges that you faced while you were writing it or...
Oh, so many!
Yeah (laughs).
It'd be your whole podcast (laughs). Yes, I think the first one was, this is something... this is a version of a paper that I've wanted to write for a really long time. So a few things have happened to me since I've worked at the University of Sydney, one of which is working with a whole heap of people in a collaboration called wiser healthcare. And that is about reducing harm and waste in the healthcare system. And so it just opened my eyes to a whole different way of thinking. And it's been a really great experience. But also, I guess, I've been giving various versions of this, this paper at conferences since about 2016/2017 (laughs). Let's just not think about that too much. And then I received an invitation to contribute to this special issue. And I was like, right, this is the time I've got to do it. And then I put, as you always do, I put it off, I put it off I put it off. I'm also now you know, somehow a relatively senior academic, and I'm involved in lots of different things. And I spend a lot of my working life actually helping other people to write really great papers too and the time for me to do something as a sole author is really restricted. And I used to kind of have this thing of, I can't possibly write a paper unless I have, you know, a whole stretch of like five days in 10 days in a row to luxuriate in the literature and really, you know, be scholarly about it. And then, you know, that's just apart from maybe the first week in January, which I absolutely protect every year for this, it's never going to happen for me, not not in the current way that my working life is structured anyway, so I actually had to kind of teach myself how to productively write in small snatches of time. So this paper was kind of a baptism of fire in that regard. But also at our, in our group in Sydney Health Ethics, we have a 'Shut Up and Write' session each week. And that was, it's a way that I can really protect that time. So I had a kind of logistical and time challenge. I was also out of practice at writing single author papers, like I'm very adept now at having really in depth conversations and pulling out bits of the literature and really helping shape papers up with two or more authors.
Yeah
But I was totally out of practice and doing something for myself. And I've... the first few drafts of this paper were absolutely horrendous. I'm gonna lie. And then my other challenge was because I'd talked about this and thought about it for so long, actually, just working out what went in and what didn't, was really hard. And the first version of... the first few versions of this paper were total, kind of what we call kitchen sink. You know, literally, I had, you know, so many different things that I wanted to say. And I just, it was actually really hard for me to work out what stayed and what didn't. And in the end, I gave it to Kate, and my boss, Angus Dawson, who was incredibly lovely, an patient, and didn't say to anything too snarky. And I mean, we kind of just had a chat about it. He didn't scribble all over it and give it back to me. We just, we talked about what was in and what was out. And that was so valuable, because him with his fresh eyes, was able to just sort of say, 'I didn't really understand why that was there. I couldn't see what that added to your argument'. And I think I'm maybe kept one thing in that he couldn't understand. But I thought it was necessary. And I made it work I think. So yeah, it was I mean, I was extremely grateful for his kind of calm guidance in that regard. But it was very hard to because all of there was so many interesting things to say. And for example, I absolutely love the work of Bjørn Hofmann, who's a scholar from Scandinavia, who writes a lot about the 'too much medicine' problem. And he's got a really great paper that was all about kind of the imperative to use new technologies. And he it's in the Journal of Medical Ethics. I'll give you the citation. So you can put in the show notes if you like.
Sure.
And I wrote a really nice kind of adaptation of his argument for this field.
Yeah.
But it just, it's a different paper. It didn't belong here. And so and I also think it needs me to go and maybe be a bit more formal about assessing the literature. So it kind of, yeah, I really liked it and it was very hard to press delete. In fact, I didn't press delete, I pressed Ctrl-x and put it in a new pasted it into a new document. Just to kind of sit there in my blue sky kind of pile. You know, there was sort of big sections like that, that I felt really had to go because they they just didn't work anymore. So that was hard. But...
Yeah.
... allowed me to get it over the line.
Yeah. It's fascinating to me to hear people talk about the writing process, because I find it very difficult to produce really good papers. And my first drafts are horrendous as well, like, just always so bad. Yeah. But you get them there.
And that's okay. Yeah, I think, you know, I've been in this world for a long time now. And I feel so much more comfortable with things being bad than I used to. I used to think if something was bad, I could never show it to anyone. Or it would never get finished, I would just put it away and leave it. I mean, I have to still say this paper took a long time to write. And there were months where I didn't pick it up. But a lot of it was happening during the Covid-19 pandemic as well. And I think we were all just so frazzled.
Yeah, absolutely.
Even here in Australia, where comparatively we've had a really easy time. I don't think it took away the anxiety that we all experienced and our concern for our friends and relatives in other parts of the world. So I think, yeah, there was times when I just put it down, but actually giving it that space was an extremely valuable thing to do. Because when I came back to it, I was like, 'oh that's so bad' (sic).
(laughs).
So yeah, there was a lot of stuff that it was quite easy to edit. And you know, when I was doing the proof, I was reading, reading it for the most part, and going 'Yeah, yes, I agree. with myself'. There's still too...
A good sign.
Yeah, I still missed a typo, which I'm really furious about, you know, see if you can find it, when you read it...
I didn't find it.
Oh good. So yeah, we always miss things as well. So I think actually recognising that you are imperfect, as a writer, and sometimes getting something over the line is a good thing. And it's, if you keep tinkering with it forever, then no one else is going to have the opportunity to engage with it.
That's excellent. That's true. And I think, yeah, it makes me think about how even when you're writing a single authored paper, which I do a lot, you really need engagement with other people. You know, I think that even that kind of sole authorship idea of bioethics, or philosophy is not quite true. You have a lot of help along the way. It's just that there's not a particular other person who's working with you in the authorship stage of it, but it takes a village.
It sure does. And, you know, at our centre, at our group, we have a group where we can take papers to that work in progress meeting. I never did with this. I was too scared.
Really?
Which is so ridiculous. I think I just I actually just couldn't, I thought I've had enough input on this now it just has to go.
Oh that's fair too.
So it's interesting, isn't it? But at the same time, that format has worked extremely well for lots of other people now in our collective.
So it's true that there's sometimes a point where you actually don't need any more input. Yeah.
Yeah, I took some targeted input. But also it happened that my colleague, Lisa Dive, and I were writing another paper that actually isn't the same as this one, of course, but it has a lot of synergies. And so we were talking about a lot of the same things and reading a lot of similar literature. And it was just because I, you know, I'm quite focused, I guess, in my research, so there is a lot of concentric circles in what I do. And I find that the same types of literature often tend to be relevant for more than one thing that I'm doing. So in some ways, yeah, take the help that you need. And that is the right kind of thing for you.
So I guess we're coming towards the end of the podcast here. So I'm very curious to hear what you hope people will take away from this and also kind of what the next step is, because you've alluded to a couple of different ways that you know, another, a next paper might come out then develops these ideas further. So ...
Yeah absolutely. So I hope what people take from this is that... when it comes to scaling up genomics for populations, as opposed to kind of clinically unwell individuals or groups, the way we think about the ethics of this is not just scaling up how we might think about an individual problem. There are other things we can use that add complexity, that pay attention to the relationships that we have with others in a social context. So it pays attention to, to the resources that we have available as a society you know... pays attention to the attributes of groups like parents, for example, and acknowledging that not everybody is going to have the ability to think through and reason all of these things. So it's a way of paying attention to, I guess, issues of social justice or paying attention to sort of hype in technology and the sort of empowerment rhetoric that keeps coming along. So it's... it's trying to find a bit more nuance in our breathy enthusiasm for adoption. And hopefully, it will give us pause before we roll this stuff out, you know, we actually think about some of the major whole of health system issues that are going to be need to be considered rather than the technical aspects of the test or how it might fit into existing newborn screening programmes. That said, I showed the accepted version of the paper to a clinical friend and colleague who was quite enthusiastic about newborn genomic screening and/or sequencing. And this person said, 'Oh, you were nowhere near as hard on it as I thought you'd be.' And then when I was reading the proof, I was kind of like 'have I accidentally said this is awesome?' Because that was not my intention. So you know, I, I've always described myself as a critical friend of genomic technology in that I think, when used in the right way. This is an incredibly powerful thing to do. And particularly all the new sequencing technologies that we have now, you can get lots more information faster, cheap, more cheaply than ever before. But we have to, you know, be led by the the end use, let's be led by how this information can be useful how this information can solve really difficult public health problems, on top of obviously, the very powerful way that it can help people in a clinical context. And we need to be, sometimes we need to separate those two things out. Obviously, there is a grey area where clinical testing and public health might overlap, not least the fact that the technology is the same and the way the test happens is quite similar. But rolling it out in a public health context is going to have a whole heap of considerations, that clinical ethics kind of approaches are very ill equipped to solve.
So interesting. Well, thanks so much for talking to me about this paper Ainsley.
You're very welcome.
Looking forward to seeing it in its special issue. Thank you everyone for listening to this episode of the SHE Research Podcast. You can find the paper that we've discussed linked in the episodes notes along with the transcript. 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 else you get your podcasts of quality. Thanks again for listening. Bye.
