HDBI Podcast

Podcast transcript: Made the Same Way

Episode 7: Where’s the line, where’s the limit?

Oneda

You're listening to Made the Same Way, the podcast for those who were curious about how we humans are made. My name is Oneda. I'm a rapper, producer and songwriter from Manchester, and in this series we're discovering how we get from a fertilised egg to a fully functioning human being. To answer this, I've teamed up with HDBI. That's the Human Developmental Biology Initiative to explore science in a brand new way. Each episode will bring together one emerging artist and one knowledgeable researcher to discuss science, life and music. And at the end of each episode, the pair will have a limited amount of time to collaborate on an original piece inspired by their conversation.

Meduulla

What things can we consider to be right or wrong and who makes that decision? Who's in the conversation?

Oneda

In this epistle Marieke, a writer and sociologist, meets Medulla, a Mancunian DJ, poet and rapper.

Marieke

Hi, I'm Marieke, nice to meet you!

Meduulla

Hi Marieke. I'm Medulla. Nice to meet you too!

Oneda

They're chatting about the ethics of research done with very early human embryos donated to science by people who have had fertility treatment. Who decides what research is allowed? Where do we draw the line with science? And who should we involve in conversations about it?

Now, this episode may include some discussions of infertility, so be cautious and decide if it's something that you'd like to listen to. We've also included some support resources in episode description.

Marieke

How are you today?

Medulla

I'm good, thank you. How are you?

Marieke

Yeah, good. How are you feeling about this project?

Meduulla

I'm excited. This is the first time I've ever done anything like this, so I'm intrigued to see like what I'm gonna learn and just like the conversation, we're gonna have, really. How about yourself? How you feeling?

Marieke

Yeah. Yeah, I'm curious too. I have no idea what to expect. So what are you expecting from today? Or what’re you hoping?

Medulla

I'm just hoping it'll be like… just a window into your field - just to get to know what kind of research that you specialise in and for you to also get to know like what I do and how we can just create something like very unique and hopefully impactful as well. So yeah…

Marieke

Yeah, I'm really curious. Yeah, I'm curious to learn about what you do as well.

Medulla

Nice! Well, I can give you a little summary. So I I'm a poet and a rapper and I mainly make like conscious hip hop and I've been doing that for about 3 years now. Like I said before, I double in like a few different parts, but mainly yeah I'm doing music as a rapper and a poet. So Marika, can you tell me about what you do?

Marieke

So I did my PhD a few years ago now - I finished it. It was in the sociology of medicine, or more specifically, reproductive science. So, I was taking a sociological perspective, but looking at science and specifically IVF, so in vitro fertilisation... I don't know - have you have you heard of that before?

Meduulla

Or yeah, yeah, I have. If I'm not mistaken, it's to assist women that might have problems having children to help them to have children…

Marieke

Yeah, exactly. Yeah. So it was, yeah, it's this kind of technology that's, you know, more widely used now. But the first IVF baby was only born in 1978, so not that long ago. So I was really looking at that moment in history where just after the first IVF baby was born, scientists, society, the world, kind of realised we're doing this really new thing here. It's this novel technique and we're creating for the first time – we’re sort of creating the beginnings of a human being outside of the human body - we need to establish how we're going to kind of treat this, this new thing, and what the limitations will be when scientists in the lab are working with this kind of early human material. So I was looking at these debates that followed the birth of the first IVF baby. And how they arrived at a consensus around how – yeah- how they should legislate around all of that. I also focused on the role of this one scientist who was really cool. Her name was Anne McLaren. She's not sort of well known. She's a bit underappreciated, I think. But she was the key scientist on the committee that was trying to kind of come up with these new kind of rules to govern research. And she was really good at talking to the public and kind of translating science for the public, but she was also just a really interesting character. She did all sorts of stuff, so she worked in IVF, but then also in public policy. But she was also - she grew up in these social circles of like, writers and socialists doing really interesting things. So she was in, do you know, HG Wells, for example? He's a he's a writer, but she was like in one of his films and she was a she was a Marxist. So she - during the Cold War she'd be smuggling things across the border to Russia even though most, you know, scientists in Britain weren't working with Russian scientists at all. So yeah, she was just a really colourful character, so it was really a, yeah, just fun learning about her life.

Meduulla

Yeah, sounds like a very interesting woman.

Marieke

She was. Yeah. I kind of feel like I really got to know her through the research, even though she's not not alive.

Meduulla

So do you think you could break down what sociology and ethics is for me?

Marieke

Sure. Yeah. So yeah, sociology is really the study of groups of people. So I was, yeah, I was looking at kind of British society, I guess at the end of the 70s and beginning of the 80s. When, when this IVF baby was born and I was trying to explain how we arrived at the legislation we did. So it's also about explaining causality. So, how certain processes in society happened, so how society takes the shape that it does? Trying to kind of identify the kind of levers and the things that shape groups of human being. And ethics, I mean, ethics is sort of the study of moral principles. So yeah, right and wrong. I have to say, when talking about the things that we'll be talking about, you know, embryo research and IVF, I find ethics - it's definitely part of the discussion - but I think framing these kinds of conversations in terms of right and wrong is actually a little bit of a tricky thing because I don't know if it's always - especially when it comes to, you know, IVF or how we research on embryos - I don't think it's just about what's right and wrong. I think it's also it’s a bit more of a continuum, a bit more of a spectrum, and it depends, right and wrong depends on a lot of other things. I guess is what I'm trying to say, you know it depends on all of these different considerations like how are things being used, to what end, who does it benefit, this kind of stuff. So, I think we need to be careful with ethics, not to think of it, as you know, there's a hard solid line: this is right, this is wrong. It's something that is kind of negotiated, yeah, by groups of people.

Meduulla

Yeah, OK. Yeah, it sounds like it's like a very blurry field, like blurry line, kind of? Like you don't - like you said, it is a spectrum. And what things can we consider to be right or wrong and who makes that decision? Who's in the conversation?

Marieke

Yeah, completely. Yeah. No, exactly it’s - who is making those decisions is a really important – yeah – question. So what do you already know about this area, about IVF, about ethics? Like, what does it bring to mind for you?

Meduulla

I guess maybe with the ethics side of things, people might not agree with conducting research on cells, they might disagree due to maybe religious reasons or they might also disagree due to consent reasons.

Marieke

How do you feel personally? This idea of experimenting on, yeah, on this early life stage?

Meduulla

I'm not against it, but I also - and this is not helpful because it's an on the fence answer –

Marieke

Yeah, those are good

Meduulla

But then I feel like, yeah, like, just because we can as human beings, I don't know if it necessarily means we should. And I don't think we're supposed to be all-knowing human beings. You know what I mean? Like, there's certain things we will just never know. I think with everything, there is definitely always going to be a negative. So, if the positive can outweigh the negative substantially, then I think, yeah, let's go with it, let's just do it. But if not, and if all of like the kind of negative outcomes can't be identified, then I don't know if it's worth it. But if - the thing is if it can change lives, then I think it is worth it.

Marieke

What are the potential negative outcomes that you kind of see?

Meduulla

Maybe the idea of being able to literally decide what your baby looks like, for example?

Marieke

Mmmmm ok.

Meduulla

So like if you could prevent your child from having health defects, you probably are definitely going to want to do that. But where do - where do we draw the line? Where does it become a case of this is just superficial or this is now like robotic? Stuff like that - I think it can become very blurry because how do you, how do you say what is right or wrong? What do you, how do you if somebody doesn't want a specific thing for their child, how is that different from like someone else not wanting something that I guess is more detrimental to that child's health, if that makes sense?

Marieke

Yeah. No, I think basically what you've just said kind of covers all of the different kind of considerations that these scientists and politicians at the time of these debates also, you know talked about. So yeah, they also - there was a lot of public concern at the time about scientists going too far. And that's something that comes up time and time again - this idea of where do we draw the line? And I think that's just always going to be something we need to be thinking about when it comes to science. We're always deciding at any point in, you know, in history - with the kind of constantly evolving set of possibilities - we're always deciding where we, yeah, where we draw the line or at least we're deciding what we think is important enough to warrant research, like you said. I agree with you - I think that's the way to look at it - not categorically is this right or wrong, but what good could we do with this research? And does that that good outweigh whatever negative kind of consequences we foresee? So at the time when they first started talking about this, after that IVF baby was born, people were also saying, OK, we don't want, we don't want, you know, genetic engineering, we don't want scientists playing God and creating, you know, perfect humans. But we do want to prevent genetic disease. And that became a really important kind of aim, shared goal, to do what they could using these new possibilities of growing embryos in dishes, yeah, to identify genes that carry disease. And that's actually - that was a really big part of the case they made and how they got public support for this kind of research because they all decided together that that was something worth, you know, investing in.

Meduulla

Whilst you're doing your research, is there ever times you feel ethically compromised? Or is there times where you're like, yeah, this is definitely what I should be doing? And stuff like that?

Marieke

I think what I found the most eye opening while doing this research was just always kind of being reminded that scientists are people, that they're human beings. And for better or for worse, you know? I just think we have this image of science as this kind of objective really kind of removed kind of cold but also really kind of well-planned and kind of watertight operation… and it's actually you know - they're human beings trying things out and yeah. Sometimes the unexpected sort of mistakes are what leads to the next discovery. And I guess the tension I often felt and saw was the tension between, you know, the need for scientists to explore and experiment quite freely and to make mistakes because you need to - it's almost like art, you know - you need to just try things and fail sometimes. But also the really important - what we were just talking about - the importance of everyone agreeing that, you know, we're moving towards a shared kind of goal and that we will agree that we're doing this research towards a certain end and that there are limits. I think that's the kind of tension I felt. And then, yeah, talking to scientists, you know, some of them were really, you know, just wanted more freedom. And some of them really understood the importance of kind of social consensus. But there was such a range of opinions and approaches and attitudes among scientists because they're people. So I think sometimes I was like, yeah, we're on the same page and I, you know, I really I find this -yeah, I I like the research you're doing and I like the person you are - those are often things that are quite intertwined. And other times I thought, oh no, you have a bit of an old fashioned, kind of backward attitude and you think you're above society or like you shouldn't answer to society…. And yeah, I guess it's just, just like with people and in life, there's some scientists you like and some you don't and some you agree with and some you don’t.

Meduulla

Yeah. So you've explained a little bit about the research, but I wanted to know like what kind of research you'd be doing on the tissue and how you would get it?

Marieke

Yeah. So, I mean, the kind of research I'm talking about is just research on embryos. So really the yeah, up to kind of - it's the first 14 days really after fertilisation takes place. So after egg and sperm meet in the dish. And scientists can make an embryo by, yeah, through IVF, so by inseminating an egg sort of in a dish in the lab and then allowing it to kind of develop. They can also take sometimes now - embryos are taken from, or leftover from infertility treatment. So if someone's had a course of IVF and has had one embryo implanted, but there are a few spare, then those can be donated to research. There's lots of different questions that scientists can investigate with these embryos. You have this tiny little ball of cells that becomes a full grown human being - so how do these cells specialise into specific types? You know, understanding the genetics of that, but also how environmental conditions play a role in that. So just understanding the process is one area of research. Also like we were talking about, to understand genetic disease, what causes that and how can we prevent it?

Yeah. I mean, nowadays there's a lot of other research happening where, you know, they try to also create sperm and egg. And I mean gene editing like we were talking about this editing the human genome is another area that's also - that they can also look into using embryos and that can be used to then potentially prevent inherited disease or diseases that are really passed on between generations. Yeah. Genetic disease, infertility treatment, this kind of stuff. Those are the main areas, I guess, yeah.

Meduulla

OK. And like, how does it work when like let's say someone has had IVF treatment and they've got spare embryos? Do they have to, like, say, yeah, they can go to scientific research or?

Marieke

Yeah. Yeah. So you have to, yeah - you have to give consent, I guess. Yeah. So but that that's a decision you can make when you have treatment at a clinic.

Meduulla

So is the type of research that you do regulated? And if it is, who by? And yeah I wana hear more about that.

Marieke

Yeah. So like I was saying, in my research I really looked at how in Britain they came up with legislation to regulate this kind of research. And the legislation we have today is still based on, although it's been developed on the legislation they came up with in the 1980s. And I think maybe the most kind of the key rule really is the 14 day rule, it's called. So this is a rule that limits the research that is done on embryos up to 14 days after conception. So scientists are not allowed to experiment on an embryo that is older than 14 days. So I think that's an example of a really kind of firm line currently governing research that ensures that, yeah, scientists, you know, don't experiment on anything close to resembling a human baby, for example. So yeah, there's a regulation body called the HFEA and they regulate all of this kind of research. So any scientist who wants to experiment on human embryos will need to get approval through this body.

Meduulla

OK. And do you think these conversations about like regulations and ethics should be something that the public has a say about or should discuss as well?

Marieke

Yeah, I I'm a firm believer in in these – yeah - really broad and inclusive discussions. And it's always a tricky - you know, trying to have these discussions and in an inclusive way, it's difficult because people are speaking different languages basically. You know, scientists have their language, they have this really kind of specific and detailed insight into what they do in the lab and how this biology works. And then non-scientists have equally legitimate feelings and concerns and you know maybe aims - health aspirations for medicine that also need to be taken into account. But they express that in a very different way and their concerns maybe lie elsewhere or are just expressed differently. So it's really hard getting scientists and non-scientists kind of talking about this together. But I think scientists are part of society - they are people who live in society and their work, you know, contributes to society, so they have a responsibility to have those discussions. And everyone is entitled to a say in where science goes. But of course, everyone also needs to have enough scientific understanding to be able to see what the important research areas are, and yeah, what it really means when we when we talk about this kind of research. So yeah, it's an it's an ongoing kind of discussion and process trying to get people talking in a way that's really meaningful.

Meduulla

Yeah, yeah. And with that as well, I think it would be, like you said, difficult to actually get scientists and non-scientists to have this conversation like where does that happen? And you who attends this meeting, where and when we decide where it is, do you know what I mean? I think in, like high school what I really liked was because we're in a school, we're in an institution, like we're all there, and we have to have the conversations, it actually did get you involved in conversations that actually you should be aware - at least aware that they're taking place. But I think after you leave like an institution, it's difficult because where do you have this conversation? Apart from like Twitter, where it's like completely the worst place to have a debate about anything?

Marieke

Yeah, that's very true. So the initial discussions that I'm I was talking about that happened, you know when they were coming up with this legislation - that was a kind of a small committee that they created, but they wanted it to kind of be representative of society. So they had scientists, but or like very few, I mean that Anne McLaren, the woman I was talking about was the main scientist on the committee. And then they had a philosopher leading the committee, and then they had some, you know, sort of yeah non-scientists. But Anne McLaren, again, I thought she was so interesting because she really made a point of going and talking to members of the public about their feelings, about research. And she tried to, you know, listen and address their concerns or figure out, OK, what is it that you find important? What are the priorities see? What do you think we should prioritise in science? And then she kind of tried to kind of translate that into the scientific language. So, tried to express that as scientific research goals. So I think that kind of thing is really important. You know, kind of that scientists listen and that they hear people and their concerns and that they then try to show how - what that would mean scientifically - what kinds of questions they would need to focus on to address that kind of stuff. So I think those are the kinds of interactions that are really helpful and you know, there are organisations that that kind of host those kinds of discussions and bring together scientists and non-scientists and also patient advocates, people with you know, who have had a certain kind of disease, for example, who want more research in that kind of area. So yeah, there's places where this happens. But yeah, it's an ongoing challenge.

Meduulla

So what are the three things that you would like people to take away from this conversation?

Marieke

Yeah. So I think the first thing is: we've been talking a lot about these discussions between the public and scientists and I really want to emphasise that the direction that science takes is a public issue - it's something that should be decided by society as a whole, and not just by scientists. And I also want to stress that this is actually the case. This is how science is regulated today, so it's not just scientists in labs, just, you know trying things out. It's yeah, it's carefully regulated. There are rules restricting what they can and can't do. And yeah and I really want people to know just that this science is revealing all these unexpected possibilities all the time, that it's really exciting and what it might be able to do for human health in the future. So yeah, just how exciting this area of research is.

Meduulla

OK, so what's the main thing you've taken away from this?

Marieke

Yeah, I mean, it's just it's really good to also to get your thoughts on it. And it's just it's interesting, like you sit there and you think about it for a few minutes and you come up with pretty much the same arguments and points that you know people in the 80s and 70s and people who spent a lot of time thinking about this stuff made. So I think it's just that's my main takeaway - it's just that I think people agree more than they realise. And you know, yeah, people are quite sensible and open to this kind of research, but understandably, want to be reassured as well. So I think that's, yeah, it's just good to see that, yeah, reaffirmed really. What about you? What's your main takeway?

Meduulla

It was something that you said you said, like scientists are not like completely like objective people that just like are perfect and like can - do you know what I mean? Like they're not the way that we think about them. And that is a way that I would think about scientists. So it is important to remember like that scientists are also like, participating members in society, they think about the things that we would think about. They're not just like robotic. So yeah, it's not something that I thought I thought, but I did. So yeah, that's…

Marieke

That's interesting, yeah. Yeah, I think I had the same when I started my research. I think I, yeah, I also didn't really understand how science happened and that, yeah, it was just people doing the science.

Meduulla

Yeah. And like also, it was interesting that you said, like as a scientist, you don't all have like, a homogenous idea about how something should be. You guys are having debates within your field as well because you all have different opinions, which I think is important. I don't think it, I don't think people should always have like the same view about something.

Marieke

I'm really interested to hear what this makes you think musically. So are you getting any inspiration from any of this?

Meduulla

Yeah, I am, you know! As we've been talking, I feel like we've been throwing a lot of questions into the air. Like, what is moral about this or what is immoral about this? You know, how does this affect society? What shapes society and those questions? So I would want to kind of implement that into the musical piece, to have it as like maybe many questions being asked to the listener that maybe create comparison.

Marieke

Yeah, I love that. That sounds really great. Yeah, this idea of yeah, really creating that sense that it's this – yeah - this open kind of opening, ongoing questioning. Yeah. So what's your usual process for making music? How does it usually start?

Meduulla

So it's it starts from an idea that I have. So this whole conversation we had today has given me an idea of where I want to take the feeds… And then after that I find like a beat that kind of matches the idea and then after that I just write whatever comes to my mind, and I say out loud to see like, if the rhythm kind of fits the beat. And then once I've got like a couple of lines, I start to like maybe find a hook or maybe start to get rid of lines that I think I throw away lines or like highlight lines, I think are strong lines and then run with that

Marieke

OK. Yeah, that's clear. Yeah. OK.

Meduulla

So I've picked like three beats that I thought maybe we could have a listen to and pick which one we think we can use for the piece. So I'll just play them for you. This one is called ‘Impatient’… just a snippet of that one.

Marieke

Nice, yeah.

Meduulla

This one is called ‘Last day of the week.’ Yeah, I like this one. I like it. It's got like a groove to it. And the other one definitely felt more serious…

Marieke

Yeah, I like that.

Meduulla

There’s this one as well, this one's called ‘Flow downstream,’… Yeah, that's the three beats.

Marieke

Yeah, no, really nice selection. My favourite was the second one, definitely.

Meduulla

Yeah, yeah. And that's the one like I'm swaying towards as well, I think. Could I hear the beat again? So, thank you. So I’m thinking… Time ticking, time ticking and I'm thinking. Na, na, na, na, na... But I don't know what I'm thinking about and who am I? I don't know. I might be an embryo. I'm not sure.

Marieke

Yeah, I think that could be quite fun to do it from the like embryo’s perspective.

Meduulla

So I wanted a bit in the song where I like asked like what’s a something to something? You know, to create a comparison?

Marieke

OK.

Meduulla

So I was like thinking like what’s a doctor to a patient, what to something, you know? To make them think about are you a doctor and a patient? Or are you a human with informed knowledge helping a human in need? Are you both at different times? Just like different questions like that.. That's the only one I can think of right now, yeah.

Marieke

I love that. Yeah. So it's sort of, yeah, to get create this sense as well that we're all part of society and we're all like this is… but you could also do something with cells or something like…That were all made of cells. And that we're studying cells?

Meduulla

And then I was trying to think of a hook like a nice hook, so I was thinking like: I'm trying to find the logic, meanwhile I'll roll with it like I'm Sonic.

Marieke

I like that.

Medulla

Being something something since I was embryonic.

Marieke

That's cool, yeah. I really like the Sonic being in there.

Meduulla

Yeah, yeah. And then just to like incorporate like more like serious stuff or stuff that the listener should think about. Like who says, whose gaze, who's directing the scene? If life is a movie, if life is a film? So, I don't know, something like that.

Marieke

Yeah. No, that's great!

Meduulla

Yeah, that's all I've got so far. I have no idea. Like I literally have no idea what this is gonna be, but it's exciting.

Marieke

Yeah, and I love, yeah, I love these components so far. I really like how, yeah, this idea of, like the gaze and, like, the kind of, yeah, it being a performance. I think that makes so much sense. And like drawing these parallels, I think it's, yeah, a really smart way to do it... so, it’s exciting!

Meduulla

Yeah at the moment, it feels like I've got, like, body parts. but, I've not got – I’ve not put them together yet, so I need to like…

Marieke

Do some experimenting?

Meduulla

Yeah, yeah, yeah.

Marieke

Thanks so much for today!

Meduulla

Today, good to speak to you and I can't wait to show you the end product!

Marieke

Yeah, I'm looking forward to it. Thanks guys!

Meduulla

Bye!

Musical Piece (Meduulla)

What's a doctor to a patient? And what’s a cell to division?

What's a life and who makes it?

Where's the line, where's the limit?

Time ticking, time ticking and I'm thinking, how can I lose if I choose? It's my decision.

Old enough to matter but too young to see the bigger vision.

Where will it lead if I leave behind my inhibitions?

Wait, I might be weary of change. I might be trying to fix a new issue but I’m staying the same.

Between a rock and a hard place, I’m carving my name.

Can I really complain if humanity gains?

Well, what metric are we judging by? How does it differ if we dig up bodies that are mummified?

And who am I to tell you wrong or right?

I’m just part of causin tissues trying to make a life.

So, as long as you can find logic, then I might roll with it like my first name’s Sonic.

This is kinda new to me, I’m embryonic.

Cutting through the fine detail, microscopic.

So, what's a doctor to a patient? And what’s a cell to division?

What's a life and who makes it? Where’s the line, where’s the limit?

What's a doctor to a patient? And what’s a cell to division?

What's a life and who makes it? Where’s the line, where’s the limit?

Oneda

Thanks for listening to Made the Same Way! This episode was focussed on the ethical and social implications of one part of HDBI’s research. Now, of course, there are more areas within HDBI and more ethical and social implications to discuss. But we only have so much time for this episode!

Now if you want to know more about HDBI’s research, check out our website: hdbi.org.

Next time, in our final episode, we'll look back at what we’ve learnt over the series. One final artist and scientists collaborate to summarise what human developmental science is and why we should bother studying it in the first place.

Made the Same Way is a Reform Radio production for HDBI, which is funded by Wellcome. It was produced by Olivia Swift, with help from Jamie Green.

Download the transcript here