This podcast episode delves into the complexities of informed consent in healthcare, particularly in the context of hematology. The discussion with host Dr Charles de Bock features insights from Dr Stephen Hibbs and Dr Louise Caldwell, authors of the HemaTopics "Informed consent is almost impossible” and guest Mark Dawson, a patient family member, exploring the emotional, legal, and ethical dimensions of consent. Key themes include the variability of consent across jurisdictions, the impact of time pressures on communication, and the importance of trust in the clinician-patient relationship. The conversation also addresses the challenges posed by genetic testing and the need for ongoing discussions about consent throughout a patient's treatment journey.

“Informed consent is almost impossible”, is on our website and all major podcast platforms (Spotify, Apple Podcast, and more) and our YouTube channel. Listen and enjoy casual, insightful discussions about #hematology research. Hear the stories behind the papers.

You can find the referenced article, in full and open access, on the HemaSphere website.

Publications mentioned in this podcast:

• The Immortal Life of Henrietta Lacks, by Rebecca Skloot
• The Logic of Care: Health and the Problem of Patient Choice, by Annemarie Mol

Hello and welcome to the HemaSphere podcast. My name is Charles de Bock and I'm your host. And today we're gonna do a little bit, something a bit different and we're gonna deviate ever so slightly from the usual podcast which focuses on papers because today we're gonna discuss a recent HemaTopic that's focused on informed consent and that is for clinicians, I guess, whether informed consent is ever really possible. And so to help us discuss this topic, I'm joined by the two co-authors of this recent HemaTopic.

Thank you.

but then relapsed in December last year and so she had a bone marrow transplant in May this year. And so he's been on a long journey and has a good knowledge of consent and so he's joining us today as well to give his perspective as a patient and a family member who went through that journey. And I'm very privileged to have Mark join us here. So welcome Mark as well. So.

Thanks, Charlie.

First thing is I'd like to acknowledge, of course, that HemaSphere has a broad audience of listeners and that's across many different jurisdictions and countries. And so, you know, what does consent actually mean? Because consent here in Australia might mean something very different for consent in the UK. And so I'd like to invite Louise and Stephen to perhaps give me some background or the audience some background about patient consent and what really stimulated this HemaTopic about the whole process.

Thanks, Charles. Maybe I'll start and then pass over to Louise after. So yeah, I'm a hematologist. do clinical work and have been working since 2017 as a trainee in hematology. And I still remember the first time in 2017 where I was invited, not invited, told, go and consent this patient who's got...

lymphoma of some type for our job. That was on the jobs list alongside a few other things that I'd need to do that day. And I remember just having this kind of sense of the gravity of the situation of thinking, okay, well, I'm about to go and have a conversation with someone about treatment that's potentially life changing for them. And

I remember speaking to the sort of more senior trainee who was coming to the end of her training at the time, and I've not done this before, I'm not taking consent for chemotherapy. I just said, you know, how do I do it? Like, the, what's the, you what does one person do? And she said, okay, well, you you look up here to find the, what side effects are on it? And then you just go, you know, you fill in the form and you go and do it and then they sign it and it's done. And there was something that felt kind of transactional about the whole thing to me, as though was kind of another, another job on the list. And

It was just something you did. And it was something that wasn't really taught. And years later, I remember speaking to someone who was involved in the training of registrars saying, I think we need to do some training on this, but we really struggled to even find much about how, you know, what does good practice in consent taking look like? What does it mean to be, to be proficient and good at taking consent? So some very like legally stuff around it, fairly obvious stuff, but actually how do you do it well in a way where...

where informed consent is achieved. so that was where the idea for this came from, mostly, I guess, thinking about clinical, but also in research settings of when you're consenting someone to be involved in research too. And it was then that I approached Louise, who's just starting her hematology training to say, would you like to work on something like this together? So Louise, do you want to say anything about that?

Yeah, so I haven't started my registrar training yet. So haven't yet consented someone for chemotherapy, but consent is something we come across in broader medicine a lot, very familiar with taking it in other disciplines. And I've been thinking more broadly and sort of work I've done outside of medicine about what it is to be ill and what you're going through when you're ill and therefore what sort of situation you're in when you're faced with having an acute

disease you're faced with death and having to approach consent, agreeing and discussing and consenting to treatment while in the midst of having all of that chaos going on and really what that process looked like and what the impact that it, you know, what the impact on your ability to take in, retain and really properly consent to those sorts of treatments.

I guess that's maybe a good chance to segue to Mark who was actually receiving the forms for consent and at the same time having this life changing diagnosis being given or this information about your daughter. I'm guessing there was a whole series of consent processes through that journey. So perhaps Mark, what was your journey like and how was it overwhelming and...

Did you understand it or was it just a matter of like, I know this is a time thing. If I sign here, then I will sign because it's, I guess maybe after you discuss that, it's about trust, I guess. You're putting trust in the system and in the clinicians who are asking you back informed consent. what was your journey like along those lines?

Exactly. think the latter, you mentioned, Charlie. So, you know, my memory of, of Carys being first diagnosed was, you know, from one day where she's perfectly healthy to the next day when you're in hospital talking about chemotherapy and many months worth of treatment. you know, from memory, the forms we had to sign were everything from hospital admission, insurance, Medicare, chemotherapy, consent forms around, you know, being able to use her tissue samples or blood samples for future research should anything be useful there.

And at that time you're sort of thinking, yes, exactly that. Look, just trust the system, sign the forms. Let's not delay this. Let's not say, actually want to go home and think about this and read the forms and ask around. You're really under time pressure. But I think I also remember thinking, what can go wrong? Like what's really going to go wrong if I don't consent or don't agree with some of these forms? I guess A, do I have the power to

disagree and change things and that just causes headaches for everyone in terms of progressing the treatment. But then secondly, is there any benefit to, why would I not consent kind of thing? And in that moment, you're not thinking of anything that can go wrong and touch wood, nothing did go wrong. And credit to the hospital staff, there was certainly no pressure to sign. Everyone said, look, you want to talk through these things in more detail? Absolutely. We have time to do that we can talk you through. But I think in that moment, I was of the attitude of let's just sign these forms.

Get on with the treatment.

Is that something you've seen a lot? Yeah, no, that's a good point because I mean, you said there's so much forms and the irony being is that it's mixed in with hospital admissions and informed consent. One is actually just a bureaucratic, one is quite legal. And I was mentioning this before about the legality of consent. And I just think this might be a time to bring it out because when you get it wrong,

Rightly or wrongly, yeah.

It's not great. So for our listeners who don't know, there's a great book called The Immortal Life of Henrietta Lacks, which is the background for HeLa cells and in 1951, her cells were taken without consent and have been, you know, great for research. And it's only 70 years later where some of that's been, you know, rectified with the family. So I guess it's important to recognize that and about why consent is so important and builds trust. And maybe I'll...

I'll flick back to you, Stephen and Louise, about that aspect of his trust and getting it right. What can go wrong and what can we get right when we ask for consent?

Louise do you want to go first?

Yeah, I think I was thinking particularly when the topic first came up about the idea that if it's done right, it becomes less of this didactic, you know, contract like form that you're signing whereby a doctor prescribes a treatment. Side note, these things might happen, but really this is what we advise and this is what you sort of fundamentally have to do to have a chance at survival. So actually...

taking more time and modalities and just taking greater insight and thinking about how that can involving the patient and their family might not even change how they understand it in that moment because of everything that's going on. But going on with their treatment and their disease and their life may feel like they have more of a stake in their own disease and make them feel more invested. And if

you know, those complications did occur. I don't think it's all to do with the legality. I think it's also to do with, them being involved in those discussions, you know, it's their life and the complications are going to happen to them. So I think it's all about autonomy.

I think actually one of the, even though the written consent form does sort of put it more in that bureaucratic space and tone and can, think, sometimes slightly have too much influence on the way in which conversations happen because they become a little bit like...

just your pointing at things and you're reading things out. What they do do is make you stop and do it because one thing that is quite striking is some of the work that's been done, for example, on transfusion consent, this isn't in now in a blood cancer context, it's just in a general clinical context. Many times patients are given blood transfusions without any sort of consent discussion taking place. And that's also true for lots of other other kind of non-cancer.

drugs, thinking about things like anti-coagulation, other things that really are quite significant, but don't seemingly have the same legal status to require this kind of sitting down and having a conversation. And so I think whilst the forms aren't enough, they do at least for some sort of conversation to happen, that's a start.

But was interesting, you mentioned in Charlie about the Henrietta Lacks case, and I guess in a research context, something I've been struck by, I'm currently doing an ethnography, social science research, is the difference between your formal ethics application to a university, and then the daily practices you do to do ethical research, and the two overlap, but they're not the same. as in, I did my best to write out as much as I could see coming up ethically.

on that form that then an ethics committee looked at. But actually, every day, new things come up that I've got to think, okay, what is the ethical way to respond to this person in this moment in this situation? And I can't go back to the ethics committee each time, but that wouldn't work. That's not how these things work. And I think there's something maybe similar in a clinical context where you're able to sort of broad brushstrokes, say, here are some of the things we need to consider, but then that sort of consent.

becomes this ongoing process and place of trust and saying, we still have consent to continue? Is it still the right thing? Rather than all being boiled down to this form that's really just a relic of part of that discussion.

So in terms of the consent journey, does the consent only occur often at the beginning and then it's never revisited and then that's it? just kind of, or like Mark, for you in particular, do they ever come back to you afterwards and say, okay, now we're going to go into consolidation therapy, there's another form, or when you went for the genomic sequencing, here's another form, or was everything, or you just, or was it a blur? Because if it's a blur, that's also important to know because then really...

Yeah, partly blur, partly yes, there were multiple series of consent forms. I think when Carys did genetic testing, there was a series of consent forms around that. There was, I'm sure, consent forms around the bone marrow transplant itself. two come to mind. But yes, in another sense, there is an element of it all, a bit of a blur, almost like when you upgrade your iPhone, you quickly scroll through and accept the terms and conditions and you move on. It felt a bit like that. I think as you're talking,

And so thinking, what are the consequences if you don't consent? Or can you consent to certain drugs and not to others or, and these are all questions I in a moment had never thought about. We just consented to everything because again, we had that faith in the system that the doctors knew what they're doing. And we trusted that they knew better than us, which is true. We didn't know one drug from another at the outset. Yeah.

I mean, there's two parts to that as well. I can see in terms of, okay, Mark, educated university. And then on the other side, Louise, you mentioned time. And I'm seeing there's a disconnect in some parts there where one, how much time does the clinician really have to spend a lot of time with their patient? And two, on the flip side of that, if the person is from...

English as a second language or a disability, or even like those type of barriers, like how do we reconcile those things in a busy environment where your clinician's under a time pressure, you know, so maybe can we address that perhaps? Louise, what's your thoughts on the time and the time pressure? You're about to enter your training, right? So you're going to be under the lot of pressure to get the consent in a timely fashion because the next person's waiting.

Exactly. think both of those things that you mentioned are things that are potentially things that can be improved and practically built upon. I think that one of the things I felt really compelling writing the article is the reason we named it is almost impossible is I think there's this third aspect whereby potentially it could just be theoretically impossible to truly comprehend.

what's about to happen to you, when either you rely on optimism to make you think that those complications would never happen to you because you have to have hope to be in that position, or that you're unable to imagine a future. And I just, found it quite interesting to not be trying to sort of think of, that's not fixable really, that's a human condition.

And actually, I just think maybe the only practical thing would be as doctors is if we were just aware that that family, that patient was sort of sitting in that. I think that could be something that we could think about more.

Okay.

Yeah, I'm just gonna say jumping off from that point about what we as clinicians can do, I think just even for those of us who've been on the other side, like that's quite a powerful thing to know what it feels like to be on the other side of the room where you're scared and you're, and I've experienced this with close family members. There's a sort of imaginative thing there that sometimes a gap and what do we actually picture someone's

what do we actually picture this consent means? Because is it consent like how you go in, you sign a deal to buy a car or buy a house, and you instruct lawyers to look really carefully through things? Is it consent in like a romantic relationship where it's a lot more fluid than that, but there are still, you know, that there are still things that kind of need to be taken into account? Is it consent? There's so many different ways that we could kind of, there's so many different ways we can model this on.

And think one work that really spoke to me is there's an anthropologist in the Netherlands who's worked on this, her name's Annemarie Mol, and she wrote a book called The Logic of Care. And she's comparing the logic of care with the logic of choice. And she describes the logic of choice is like the idea that patients are consumers, like who can shop around, that can look, can say, there's this treatment option, there's this treatment option. And now I'm going to, in my very autonomous self,

weigh up the pros and cons of each and I'm going to I'm going to choose this, like someone who's shopping for a car or for a computer would do. But the logic of care is a lot more. It says that the locus of power of decision making of where decision made doesn't rely doesn't actually get placed in the patient because it's that's not actually a nice position to be put in to be to be made the consumer of your own care in that situation. It doesn't really reflect I think what's going on for the majority of people. And it's held a lot more between

In the Logic of Care, as she describes, it's held a lot more in between the physician or the clinician, whoever it is, and the patient and sometimes the family members. And it's a lot more of a wider thing. And when we think about whenever we've had to make really difficult decisions or embark on something that's difficult, that demands courage, we haven't really been thinking in that sort of consumer-y way. We've been looking for courage for the sort of moral clarity and the way to continue from all sorts of different people rather than just being this autonomous individual.

who's fully able to decide everything for themselves. So yeah, that came to mind too.

As you're talking, thinking...

Louise mentioned sort of more the human condition element of uncertainty and sort of time pressures. there very much is that case of, Carys's case, everything went according to plan. But you can imagine scenarios where things don't go according to plan and potentially people may come back and say, well, actually, no, I didn't consent to that. I didn't know I was consenting to this risk. And obviously as doctors, you can't say this has got a 73 % chance of working.

things can go wrong and things go right. guess how do you, for example, Stephen, there's no certainty when you're buying a car, there's certainty. If you buy a car that doesn't work, you can take it back and you get your money back. It doesn't work like that with treatment. But then I was also thinking more and more you sort of hear lots of stories about people researching alternative treatments to cancer and potentially them coming to the doctor saying, I want to do A, B and C and I don't believe chemotherapy is the path for me.

Again, if things go wrong, what have they consented to and not consented to? And I guess that feels like it may get more and more complicated in future where potentially 30, 40 years ago, pre-internet patients just consented to whatever the doctor said because there was that much more trust in the system and the doctors, maybe with, I don't want to say misinformation, but with people reading more and more and more, I guess,

not conspiracy theories, but that kind of thinking, how do you almost convey the feeling that what the patient is consenting to is the best approach for them, if that makes sense? How do doctors and medical clinicians maintain that sense of authority and reliability that what they're recommending and what they're asking you to consent to is the right thing, if that makes sense?

Well, I'd like to think that sort of long term, having a more open, honest discussion and repeated discussion about the potential risks, so that if those complications do occur, they don't come as a surprise that was concealed, might long term improve trust, rather than, you know, work against that sort of patient doctor relationship. You'd hope that's...

You know, there's always never gonna be 100%, but you'd hope that in involving those people and being honest and saying, you know, there is a chance that this unexpected thing could happen. If that did happen, it doesn't make it better, but I think it could, you know, build that relationship and certainly not be detrimental to it.

I think as well, maybe just following on from that of picturing, we've used the phrase kind of trust in the system a few times. And I think one thing that highlights is that, I'm guessing, I don't know if everyone's stories here, but we have lots of reasons to trust the system or the multiple systems we exist in such as the education system, the health system, the police system, the housing system, the way that...

wealth is distributed, all these different things. And actually, there's a lot of people who are going to meet, they have lots of reasons not to trust those systems. And health is one of those systems that you face. And I think, even just for me, I think sometimes when I meet someone, and I think, okay, you are coming in not with the not with an attitude of immediate trust towards me or towards what I have to offer us or towards the kind of body of medical literature at large. And Charlie, you mentioned earlier about the Henrietta Lacks case. And if you think about

say people who belong to black community more generally, the amount of anti-black racism that's been doled out across medical and medical research history is, it's substantial and there's often deep histories that lead to people being able to have more or less trust in the system. Obviously that doesn't go for every black person but it's one example. And so I think for me, one thing I've seen sometimes is that you might have a conversation to start with where

you're just completely on different pages. And if it's an emergency, that's really hard. That's really, really hard then and that that's maybe kind of its own conversation. But a lot of time, there is actually the space to at least for some hours or days for someone to kind of go away and talk to some others and say, I need to go and I need to go and think about this. And I need to go and get some get as you know, second opinion and speak to people or speak to you know, I met a Jewish patient.

Orthodox Jewish community who said we've got a doctor within our community who I need to speak to first before I come back to you and I said that's fine you know please like go ahead go and do that and I think actually maybe sometimes in our our desire to bring people around to our way of thinking like we're the good with a good intention to be like we really think this is the best thing for you sometimes we have to kind of give a bit of latitude to that and say even if even if we are losing a bit of time and even if that does have its own

repercussions, sometimes that's necessary for someone to really be able to build something of the courage and the trust and the mindset to be able to go ahead with this. I think that's maybe part of this too.

It reminds me of a saying that, you know, the problem with predicting the future is that it hasn't happened yet. And in a way, that's what consent is, really. And so if we recognize that consent is a challenge and getting it right is a challenge. Stephen and Louise, you know, what can we do? What are some of the steps that you think we should take now moving forward to really

do what you consider as the impossible, like improve from where we were going and some ideas that you might have.

Louise, do you want to go first?

You know, I think we do, we obviously recognise there are some practical things that can improve the consent process considerably. I think that's involving family, as we've mentioned, and really championing the people that support the community, you know, that person's ecosystem and community. I think we've talked a little bit in the paper about, about

people whose English isn't their first language and making sure that we really, really make use of good translation services, not relying on family members, making sure that there's the time that's afforded to translation that's required. And also for people who have neurodivergence using other forms of media other than sort of written or verbal information giving.

making use of videos. And also people just more broadly, I think it's very hard to take in the information in that moment. And so giving links to websites or videos, I think go a long way, definitely.

And think as well, our hope is that by writing this and actually this podcast, I hope will be part of this as well to just make this a area of training, of conversation, of consideration, but rather than just a boring taking for granted, well, it's informed consent, like actually to explore what does that mean? And I think maybe even just to recognise that how difficult it is for this to go as we...

pretend that it does, like if you've got a fully informed patient who's fully informed and giving their full free consent just as, know, that sort of, by maybe trying to slightly dismantle and challenge that notion of what consent is, it maybe frees us to talk a bit more honestly about what's difficult and to recognise that we as clinicians, we're human too, sometimes it's scary, it's, you feel the gravity, you're not really sure how to do this. And I think maybe in our training and in ongoing

sort of continue in professional development to have this as a topic of conversation. We've actually got a training day that we're planning for hematology registrars across London next year. And one of that's going to be a panel of four experienced hematologists sharing how they have got about consent and what they've learned through the years and how that their approach has changed. That's sort of come off the back of some of these conversations. So I hope as well, by making this a topic of interest rather than something that's just taken for granted, that might help along the way too.

I think it's a great point. It's not just business as usual in a way, like it's not another part of your tool, but actually, Louise, I think you mentioned it, adding humanism to it, that humanity to the process rather than seeing it as just a form. Maybe I can ask you, Mark, as a parent who had to do consent on behalf of your child, what do you see as a future for the next parent to estimate that decision on consent?

what would you like to see in terms of the journey ongoing and from the start?

It's a good question. think from my experience in Carys's treatment, there are no moments I look back and think that could be done better. And that's guess the credit to the hospital staff and doctors we work with it. There hasn't been a moment where things have been done better. But along the way, I've realized that I've been making, my wife's been making as well, decisions on behalf of Carys that affect her future. That in 10 years time, she may come back to us and say, I didn't.

give approval for this surgery or this treatment. And that does play on our minds a little bit. But at the same time, there was no choice. The treatment was what it was and the alternative was she wouldn't survive. So I do envision a future where we'll have those conversations with Carys. But I think for future parents, it's a tricky one. Everyone will bring their own history, beliefs,

religious beliefs, cultural ideological beliefs to those conversations. And to Stephen and Louise's point along the way, have met families where English was their second language. And some of the concepts that you're all giving consent to, the medications are quite complex, even in English. And so I do feel it would be challenging for them to have to kind of translate those terms back into their native language or think about them and understand exactly what they mean.

Many times we woke up at three in the morning and Googled something where you think, hang on, I didn't think about that when I was giving consent, but what if this happened or what does this really mean? So yes, I guess my short answer there is, I don't have a good answer for you. It's a challenging question, but I think it's good that it's being discussed and thought about because I guess for potentially doctors and hospital staff, is day-to-day business as usual. There may be 10 consent forms and conversations to have each day.

But for the patient, this might be the first time they've ever had this kind of conversation and even thought about these things. And that's a good, I guess, frame of reference to keep in mind.

And I think consent is only going to become more complicated. You mentioned whole genome sequencing that Carys went under, but as a researcher myself, know, there's big data is always going to be there and it's there forever as well. So when you consent to genetic testing, it's not as if it's not, it's then out in the public domain for a very long time. And although it's all patient de-identified as much as you possibly can, know, research is...

we require that knowledge and that's going to be there. And we just go to a database and we download it. And I think that's only going to increase as the sequencing technology increases, et cetera, et cetera, and the costs go down. And so there's another level of consent as well, which I think will only probably complicate the system. Louise and Stephen's job is they have a consent form for, okay, this is for your treatment and another consent form for now here's for research purposes. and now for your data.

which is about your genetic sequence and what that means. So I don't want to end on a complicated matter, but maybe, you know, Louise and Stephen, as we, I guess, start to wrap up a little bit, like, how do you see that complicated part of the, you know, again, the next phase of consent outside of just the treatment? And how do we...

educate the clinicians about the long-term effects of that because they'll just see, yeah, it's just a genetic sequence, there's a whole lot there.

Yeah, if I can speak to that on some direct experience, I find it extremely difficult because you've got, and we talk about this in the paper, the NHS said, let's roll out whole genome sequencing for leukemia patients.

great, you know, there's lots of kind of potential benefits to future patients from that, think very, very, very few benefits to patients now who are are that's one thing. But when you actually, you know, I remember thinking through and a sort of brief session where we were being told, okay, you know, from now on, please start doing this, please start consenting every patient where you're best to do a bone marrow or take their blood for whole genome sequencing.

And I remember thinking through the repercussions and just asking about how we do this because actually what was going to happen in practice was you'd be asking someone for permission to do whole genome sequencing. We were being told that the results probably wouldn't be available for at least a year, something like that, by which time a decent proportion of the patients we're consented for sadly would have died because particularly in adult practice that is a common outcome. But...

then some of the results we were finding wouldn't just be relevant to the patient, but might show a susceptibility gene to a completely unrelated condition, but that had familial penetrance. might then be that, so what you're actually doing is saying to someone, this is unlikely to affect your treatment. We might find out something that after you've died means that we have to tell one of your children that they're at increased risk or your grandchildren's increased risk of having leukemia at some point in their life.

And I think we were bound to do that. can't remember what the, I think, I think part of the rule was that the, we weren't, that information couldn't be held back. So that would have to be shared. And so, this is in the context of someone who's literally in the last few days being told you've got this life changer diagnosis that you may die from. You're going to be in hospital for a month. You're going to need this chemotherapy that's going to be kind of life changing. Maybe you're trying to sort out your, your will or your home or like everything else. And now you're being told that you've now got to think about

news that might affect your family's, like, conception of who they are. I mean, it's just a mess. Like, it's a complete, it's a complete nightmare. And my thought is that I don't, I cannot imagine that those conversations are actually happening in that sort of detail. Like, I think a lot of time, we probably just use terms like euphemisms really of like, there may be unexpected results, and we will take action when they're found. You know, something like that. But like, within that euphemism is

something really, really heavy. yeah, I am sorry. I don't have any answer to that at all, but other than to say that it is, I wonder if sometimes when these big programs are being like drawn up and like rolled out, how many people are actually picturing what conversation would need to take place for anything like informed consent to take place in that sort of instance. So yeah, no answers. Just share those fears.

Louise, your thoughts?

No, no, just echoing those fears.

Well, it's, it's, yeah, I mean, we have here what what Carys was on the Zero Childhood Cancer clinical trial, which is where every child with cancer in Australia now gets sequenced, but they get whole methylome, whole transcriptome and whole genome. And these very questions were raised about if we find a gene, what would happen? How do we inform and so what they realized that the Zero program had to expand and get

genetic counselors on board. have a germline team that goes through that sequencing data as part of that whole consent process because when the parents consent to the clinical trial and we do find something that's there again, it was not thought of at the beginning, like you said, Stephen, but it was an organic process that happened when, whoa, okay, we've just opened up a whole can of worms and we need to address this because these are real issues. sorry, Mark, yeah.

Mm.

On that, on that note, actually, so actually, it was found that Carys does carry a rare gene. So exactly that point. She does carry a rare gene that in future if she met a male and had a child with that male, and that male also carried that gene, there is a high risk that the child will be impacted. And again, that's many years in the future thinking about what that means. But it was a

outcome of the genetic testing that other things were found. Not that anything we can do about it now, but it's interesting. Is there an obligation to tell us that we found something extra that has nothing related to her cancer, but will maybe impact her in her future? And I guess as a consequence now, if and when that day comes and she decides to have children, there'll be some genetic testing we'll have to do just to make sure. But that's also, that's life.

So having started this topic and discussion basically on whether a piece of paper is the right way to go, we've managed to cover informed consent, the complexities about what that actually means and gone the whole gamut to genetic testing and the unintended consequence of finding things which weren't even thought of to begin with when it was all about treatment. and Stephen, do you have any final

comments or words about the paper. I mean, I encourage all our readers to read it. It's a fantastic HemaTopic. I agree that it's about starting that conversation, maintaining that conversation between parents and clinicians within the community. But maybe over to both of you, Louise and Stephen, for some final comments on whether we can get it right for informed consent.

I think we can get it better. And I think in not getting it right, I think we can make our jobs more interesting actually. you know, our, us just more engaged and yeah, it just, it just makes the job better. I think if you're questioning yourself and considering what a mind-bending experience the person in front of you is going through instead of seeing it as

a set of complications to rattle through and a signature at the end. I think everybody benefits from a bit more consideration.

Maybe my final thought on this is just the awareness that right now I'm writing from the, and speaking from the ivory tower of a university position where I've got the time to step back and to think about these things. And I did think about them when I was in clinical practice and I had a long list of things to do and to rush through, but I just want to pay respect to every person on the front line who is involved in navigating these difficult conversations, sometimes multiple of them in one clinic.

with multiple challenges of learning disabilities and people who don't speak English as a first language and people who have definite reasons not to trust the system and extremely complicated interventions and treatments. And as much as we've opened things up, I think that I also respect those who actually would just read this and think, I can't think about this right now and I need to keep it a bit more simple and we need to just keep to...

We do something here and it's a start, but it's hard to go much beyond that. And I just want to pay kind of respect to anyone who's in that situation because yeah, there are times when you have space to expand things and blow them open. And there's times where you've just got to do your best on extremely constrained resources and time. yeah, respect to the real jobbing clinicians out there who are navigating this today.

Fantastic. I think we've covered everything. And so it just saves me to thank Louise and Stephen for writing a wonderful article for HemaSphere on this topic and Mark for really just joining us and sharing your experience and what was, I know, a difficult time over the last four years and will continue to be a, you know, a long shadow when you're thinking about all these things in the future. But

I'd like to thank everybody for their time and their thoughts on this really important discussion. And with that, I we close out the HemaSphere podcast. Thank you everybody.