SHE Pod Season 2 Episode 13: Ainsley Newson and Gabriel Watts on Disclosing Variants in Prenatal Testing
12:34AM Nov 12, +0000
Speakers:
Kathryn MacKay
Ainsley Newson
Gabriel Watts
Keywords:
paper
people
model
argument
information
autonomy
principle
bioethics
request
gabe
reviewer
reasons
withhold
resist
reproductive
balance
uncertain
routinely
notion
ainsley
Hello, and welcome to the SHE Research Podcast. I'm your host, Kate Mackay. And today I'm joined by Gabriel Watts and Ainsley Newson to discuss their paper 'To Offer or Request: Disclosing Variants of Uncertain Significance in Prenatal Testing'. And this has been published in the Journal of Bioethics. Hi, Ainsley. Hi, Gabe.
Hello.
Hello.
Thanks for joining me today. This is a great and really interesting paper. I wonder if you could start us off by just sort of giving us the elevator pitch version of the paper, Gabe?
Yep. Um, I think in in a nutshell, the paper is about how you ought to provide information to people who are going through the process of having prenatal genetic testing. What we really wanted to do was test what are the principles that support either routinely offering information, especially about uncertain, uncertain information where you don't where you can't actually draw particular conclusions, in any in any form, or having a model where such information is only given upon request. And the key was to resist the notion that respect for reproductive autonomy was this trumping claim, even in a in a fairly robust sense, rather than a light sense of what respect for reproductive autonomy might be, to say, like, let's just resist the idea that it is the most important thing, what are the different principles in play? How do we balance them? And then on balance, we concluded that you should for a request model over a, a routinely offering model.
Cool, that sounds great. Is there anything you wanted to add to that Ainsley?
Well just the practical context in which the paper arose, I guess, and this, it will probably lead us into what you're going to ask us about next. So I'll save some of that. But I think one thing, just to point out is what the type of bioethics that I've always tried to do is something that's very practically oriented. And we, I've always tried to identify things that are either already occurring in practice, or maybe imminent on the horizon. And in this case, what we observed was that there is a wide practice a wide range of practices globally in this and there's significant contention amongst the clinical community as to what the right thing to do is, you know, whether this information should be routinely offered, or whether it should be reserved to be provided on request only or some other model. And so part of the paper is that we actually set up what different models would look like, albeit at a really high level. And then we use those within our analysis. But you know, there's professional guidelines in places like in countries in Europe and then in North America that are virtually diametrically opposed. And so part of what we do in the paper is just digest kind of what's actually going on currently globally as well to set up the debate.
Right, so was to preempt perhaps was part of the motivation for writing the paper to do this kind of untangling and clarifying work.
Yes, it was. And the broader context in which the paper came about was, I was an investigator in a research project funded by the National Health and Medical Research Council in Australia. And it was a collaboration that became known as Weiser health care. And the whole point of this collaboration is to try and reduce kind of waste, I guess, although that's quite a big word, but try to reduce unnecessary healthcare. And so this big collaborative project has lots of paradigms, everything from sort of back pain, to you know, cardiovascular health, and there's a whole it's a massive project for a really awesome people. And so there's sort of a sub part of that project that was a little bit to do with genetics. And then within that another bit to do with prenatal information. And I presented some information. At a conference, I was presenting some findings of a different project, actually about direct to consumer genetic testing. And a member of the team, who's Dr. Chris dettling, at University of Wollongong asked me a question at the end of my presentation, which was right, so is this information, something that we should offer or should it be on request? And I was like, That is such a great question. And I didn't, as you often don't have an immediate answer to give Chris and so I just kind of planted that seed, and then the opportunity came up to work with gay And I basically just gave gave this question and said, Go and think about it for a while. And then, you know, over the course of maybe 18 months or so, in the end, you know, Gabe, and I just went backwards and forwards the whole time, until we kind of had our arguments. So that was, that was really how the paper came about. And then, of course, you know, we delved into the literature, we examined lots of different aspects of the debate and worked out how we wanted to run the arguments. So it was one of those really nice things that can sometimes happen in academia, where you get asked something that you weren't expecting, and it really prompt some really interesting ideas. Yeah, that's
fantastic. Um, I wonder if maybe gave, you could give us the outline of the argument, especially perhaps some of the reasons why you argue against the two models that you don't prefer, and then why you do prefer the, the request model in the end.
I think the the broad, overarching frame, my guess is that people going through the process of prenatal testing, and just essentially being not essentially, but definitely being bombarded with information or feeling like they need to be keeping themselves as informed as possible, whether well at least be seeking information needs to happen within some frame of support, we just took that as a given. And so we figured that that would preclude mandatory mandatorily withholding any results from people because that just wouldn't be just made any bar for supporting them through a process. And also would preclude mandatorily disclosing information, because there just was no discussion going on. So I thought, okay, if we, if we set those aside, and then move within a model to which you are moving through the process of first line, and possibly further testing, there's going to be discussion going on, what are the different possible models that you would have. And the first model we came up with was what we called a withhold model, where the option to receive the option to receive information about like uncertain results, uncertain results arising from genetic testing is discussed. But there is some principal ground for not for not providing it, even if it's requested. The other model was that it's discussed. And it's only provided if it is requested, and we saw their requests could just be the request to know everything, it didn't have to be specific. Or to know everything that arose not necessarily wanted suggested, because we're dealing with information that doesn't, doesn't actually suggest anything. And then the third one was where it's routinely offered to disclose it. So they're the they're the three models, the withhold model, first one, and then the request model, the second one and the routine model, the third one. And then as for an an overview of the argument, the first argument, the first line was to reject the withhold model on the grounds that broadly on the grounds that you shouldn't really mandatory, you shouldn't have a blanket withhold policy, when you can't determine what will and what won't be relevant to people's decision making in the in the first place, there is the notion that providing people with uncertain information is can cause them distress, but we held that, you know, the, the process of pregnancy is inherently uncertain, and we can't we shouldn't be looking to just withhold information so as to reduce distress, because it could be material, it might not be material. And so the question becomes, do you want a model where these things are? Well, you are routinely offered to, to have to receive information all information as to the results of your tests, or whether you are only provided when you request them. And then within the literature, we found that one of the primary justifications for setting up some sort of model in which people are routinely offered information, either in terms of saying do you want targeted results or extended results? That's that's one model that that is around was justified on the grounds of respect for reproductive autonomy and sometimes also a right to have information like this. And so the idea was to test not to say look, okay, respect for reproductive autonomy. To me, justifies a routine model, but maybe there are abroad there are better there are kind of conflicting justifications that mean that we should downplay respect for reproductive autonomy. The question that we decided, well, the the, the where our thought thinking developed, was so Okay. Does the principle of respect for productive autonomy actually justify taking a routine approach where you retain the arts people over a quest for Poe approach?
And so that's what we tried. That's that's the point that we argued on we say, okay, it just both of the we argued that both models were justified by respect for reproductive autonomy and on balance, considering other principles in play, even considering respect for reproductive autonomy, we ought to prefer a request model over a routine model. And I can go I can go into the particular reasons, but that that's the broadly a high level overview.
I feel like that's, that's given us a good idea of why we would prefer that kind of approach. And I think it sounds like you had to take quite a sort of nuanced middle ground with this argument is kind of how it how it sounds, to me.
That was definitely the aim. Yeah. Resist trumping claim saying this principle beats this principle. You say? Well, it's actually a bit more subtle than that. This same principle can justify things both ways, and you might want to balance it, then there might be other principles in play that you have to balance against. And ultimately, we argued that. Okay, so both request model and routine model are justified by respect for reproductive autonomy. Is there anything that shifts the balance towards a request model? Is it that people have a right to this information? Are there reasons of equity as well? And we decided that even if there were those reasons, and definitely in the case of like equitable access to information, we think that there are good principle reasons to go to a routine model. We said, even if there are those, those principles don't again, don't justify routinized being providing information over offering on a request, for various reasons that we unpack in our argument, say, Okay, we're still at this style. Now, can we provide positive reasons for preferring a request model? And we said, yes. If you think about the principle of, well, it will, the notion at least have solidarity between healthcare providers and people moving through the healthcare system. There are arguably grounds that you should resist attempts to provide people information for information sake, or you, you should there is there is reasonable grounds to resist those imperatives. And so that's one. And then the other. The other point that we made was, there's so much there are so many principles in play in these decisions, and that that, and so it's quite difficult, especially with the time pressure involved, to know what like how we should even balance the principles. And that very uncertainty itself is a reason for resisting moving to a routine model and staying with a request model. And so then that's the court. That's the essence of our arguments, on balance, we should prefer request model. And the fact that we need to balance is itself another reason to just be cautious, that's fine. There's nothing you know.
Yep, I think and the overarching context here, which I think we haven't really explained yet is, since it first became possible to even work out anything about the health of a foetus or the person that the foetus will one day become, what we're seeing now is, you know, significant drivers towards the use of more technology and pregnancy towards providing more information at a finer grained granularity. And, you know, every time a new test comes on board, there is just this sort of specification creep, I guess, of where it just kind of gets added on to what is already there. Yet. A lot of the time, this information actually doesn't provide anything definitive. And there is a tendency within healthcare, to pass on that option to obtain that information to the person who's receiving it, as opposed to kind of making a more system wide or a top down decision. And we sort of don't frame it that way in the paper, but I think that was really a key driver of Well, why is it that this ends up in the hands of the people who have to make the decision, you know, is that a reasonable thing to expect? Is that a reasonable responsibility to put on them? And you know, the kind of over on overarching this is this sense of drivers towards more information. And you know, particularly in a hybrid healthcare system like Australia, there are commercial imperatives here as well. And there is also a broader concern around medico legal risk and you know, missing something. pregnant people seeking reassurance, you know, you often go through pregnancy, just wanting as much information as you can get your hands on. And it can be really hard to unpack the fact that not all of that information is necessarily going to be useful or, or helpful, or, you know, might even have a nefarious effect. So what I really like about this paper is the fact that we were able to get to this really nuanced position that tried to balance all of those things. And I should emphasise, we're not talking about, you know, withholding information that's diagnostic or something that, you know, would be about a serious genetic condition. We're talking about these kinds of information, where we don't really know what it means. And it's uncertain, a certain aspect of that could variants of uncertain or unknown significance. So it's a particular kind of finding. And even in Australia, there is variation in practice around whether these are routinely reported. So it's a really complex area of prenatal care. And it's one that needs a lot more attention than it's currently getting.
Yeah. So, in developing this paper, Did you face any particular challenges while you were writing it? Or publishing,
I think, I think the writing process was really fun. We wrote a lot of it over the course of the 2020 lockdowns and pandemics and so I just have this image of me basically in my basement kind of going backwards and forwards with Gabe and we met regularly and talked about it and because Gabe is trained in philosophy, Gabe is a philosopher. I'm a sort of bioethics academic that came into the field in a from a slightly different trajectory. And so it was a really great process for me to sort of start basically with a, an argument, we had a really technical document to start with, and then flesh it out into the paper. And, you know, and then contextualise it and sort of bioethics certify it, I guess, to make it suitable for bioethics journal. So the actual paper process, you know, I was super proud of the paper when we submitted it, I was really happy with it. And the reviews came back. And it was really interesting, we got two incredibly robust reviews, both had engaged with the paper really closely, which we really appreciated. Yet, they both really had problems with the paper, but for very different reasons. And I think this is part of the challenge of trying to form an argument that is quite nuanced and complex, and arguing sort of for a middle ground between two extremes. And so one reviewer was took, I mean, I'll say the word conservative, but I don't mean that in a pejorative way, in the sense that one reviewer, obviously kind of supported more of a withhold model, you know, routinely withholding this information, it can only be harmful, why are you even thinking about disclosing it. And then the other reviewer was much more on the sort of liberal individualism, it's up to individuals to decide information is awesome, you know, information can only further autonomy. And so we should absolutely be offering this routinely to everybody. And so we kind of looked at these two reviews, and we were like, Oh, my goodness, and the editors to their credit did give us a bit of a steer as to which reviewer we should probably target our response and our revisions to and and then we went ahead and did that and actually went through two rounds of review. And the second time around the first review, it was like, great, you've addressed all my concerns. Thank you for engaging so closely. The second reviewer was a bit more of a begrudging Oh, right, then, you know, like you could sort of see, they kind of they still didn't really like what we were saying that they were prepared to accept that we had, you know, addressed their concerns. And so they pushed us quite hard. And it was quite interesting that they both disagreed with us, but for different reasons. And so the revision process was quite complex, actually just having to work out how to do that. I think, like we often do, we kind of sat on it for a little while and thought about it. But then when we actually sat down when we still could, because we we did the edits for this when we could actually talk in person. It didn't take us long we sort of had a couple of meetings then I felt like it came together quite fast after that.
Nice. Yeah, that's that sounds like a really interesting experience with to do reviewers very clear about why they don't like your argument.
Yeah, that in the totally opposite direction.
Yeah. Well, we're coming towards the end of our time here. I wonder if you want to kind of just tell the listeners, what sort of one or two main messages you hope they might take away after reading your paper.
The thing that that I, as Ainslie said, I was coming from, I mean, I come from a philosophy background that isn't even bioethics so much from a history of philosophy background. And one thing that really did strike me was the not I wouldn't say I wouldn't say reliance, but just the notion that you can, you can roll out a principle like respect for reproductive autonomy, and then just and it was expected to do so much more work, then not that I think it can just still do a lot of work. But these I just, I was immediately struck by how complicated these situations were, and how just relying on a certain principle or seeing it as a trumping principle, it just doesn't work. And if the if the message could come across that there's all I mean, saying that things are complicated, is in pregnancy, especially regarding genetic information is nothing new. But I guess the main, the main takeaway would be to, really, that it's quite rewarding to analyse which principles are in play, which couldn't be in play, how can they be balanced? Are there any consequences of that, as well? Especially because, I mean, it's arguable that something like respect for reproductive autonomy and and a notion like solidarity, then they're not opposed at all. They're hand in hand and maybe feed into each other. So just the notion that we can push in those directions, I think would be a takeaway, because that was the most interesting thing for me to think about. That's yeah, I don't know if it's gonna be interesting for people. But that was for me.
I find that interesting, too. Especially the reflection about how much work reproductive autonomy is expected to do, because I completely agree with you. Ainslie, did you have any takeaway messages that you hope people will will get from the paper?
I'm not sure I can tell what gave just said, actually, that was pretty great. But I think for me, one thing that I really, really wanted people to take from the paper as well is the sense that it's okay to push back against technological imperatives in pregnancy. And it's it's not Daggy to be cautious about new technology. It's okay to say no to the use of these things, both as professionals and as people who are using these technologies. So, ultimately, you know, we push back against, I guess unreflective notions of reproductive autonomy, because one of the Spurs for this paper was we engage critically with some literature that's already out there where reproductive autonomy is used in this kind of slap it down gotcha kind of way. And, you know, by by people who we know and respect, we just didn't agree with their argument. And so we've just tried to unpack that in a slightly more nuanced way.
Brilliant. Well, thank you so much. This has been a really interesting conversation, and I'm sure that people will enjoy reading the paper. Thanks for joining me, Ainslie and Gabe. And thanks so much for listening to this episode of SHE Research Podcast. You can find Ainslie and Gabe's paper, linked in this episode's show notes along with the transcript. SHE pod is hosted by me, Kathryn Mackay and produced by Madeline Goldberger. This was our last episode for this season. So we'll be taking a couple of months off and we'll be back with you in 2022 with some new material. In the meantime, you can find our other episodes on Spotify, Radio Public, Anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye.