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Digital consent models, language barriers, and cultural differences are just a few factors that can exclude people from participating in genomic research. In this episode, our guests discuss these issues, and explore alternative methods such as in-person discussions and the use of trusted community figures to engage with their communities to increase awareness of genomic research. They also highlight the importance of communicating consent in ways that respect cultural dynamics, such as family involvement in decision-making. Our host, Naimah Callachand is joined by Maili Raven-Adams, researcher in bioethics and policy at Nuffield Council on Bioethics, Niharika Batra, Community Projects Manager at Southall Community Alliance and Trupti Patel, Policy Manager at Genomics England.   "I think it is about finding language to involve people, and figure out how the benefits of them donating data can relate to them and their community"   You can read the transcript below or download it here: https://www.genomicsengland.co.uk/assets/documents/Podcast-transcripts/How-can-we-ensure-equitable-access-to-genomic-medicine.docx   Niharika: People are usually comfortable giving their data when they feel that there is transparency from the data collector, they're being completely transparent, they come with you with clear benefits, how it's going to benefit the community.  And you are equally sort of agent of your own data and you feel involved in the research and you feel that you have power to give out your data and have control over the journey of that research. Naimah: My name is Naimah Callachand, and I'm the Head of Product Engagement and Growth at Genomics England. On today's episode, I'm joined by Maili Raven-Adams, researcher in bioethics and policy at Nuffield Council on Bioethics, Niharika Batra, Community Projects Manager for Southall Community Alliance, and Trupti Patel, Policy Manager at Genomics England.  Today, we're going to be discussing some of the ethical, legal and social implications of genomics research for diverse communities, and how we might overcome them to address the challenge of diverse communities health needs.  If you enjoy today's episode, we'd love your support, please like, share and rate us on wherever you listen to your podcasts.  First of all, I'm going to ask each of our guests to briefly introduce themselves. Maili: I'm Maili Raven-Adams, I lead on work at the Nuffield Council on Bioethics to do with genomics.  This has predominantly been looking at how to develop a best practice approach for genomics, and looking at the ethical implications of AI and genomics when they're used together in healthcare.  Before here, I worked at the Global Alliance for Genomics and Health, where I developed policies related to diversity in datasets and genomic discrimination, so I have a particular interest in this area. Naimah: Niharika, can we come to you? Niharika: Hello, everyone, I'm Niharika Batra, I'm the Community Projects Manager at Southall Community Alliance.  We are a charity based in Southall.  Prior to joining the charity, I was working as a Youth Community Engagement Assistant in United Nations Development Programme in India, and I have a background in gender and development.  I also bring with me lived experience of being a South Asian immigrant woman, and I'm really passionate about working with the immigrant communities in the UK. Naimah: It's lovely to have you.  And Trupti, can we come to you? Trupti: Hi, I'm Trupti Patel, I'm a Policy Manager at Genomics England.  I work primarily within the diverse data initiative and I lead the equity in health research workstream.  My background is in responsible research and innovation, as well as co-production, and more ethical ways in which members of the public can shape the direction of scientific advancements. Naimah: So, first of all, Trupti, can we talk about the challenges around equity in data, and what this means for diverse groups in the context of genomics? Trupti: Yes, as I mentioned, I lead the equity in health research workstream.  Now we talk very specifically about equity in health data.  As Genomics England, we are a biobank, and we hold health data on individuals who have consented to be a part of genomic research. When we talk about equity, primarily we're talking about those of non-European ancestry, and there are very specific reasons as to why that is.  So firstly, there's a wider issue about representativeness within health datasets more widely.  We know that across all health data sets that are located within Global North countries, the data held within them tends to not be representative of their populations. And what I mean by that is that they tend to overrepresent those of European ancestry, and underrepresent anyone who is not of European ancestry.  The consequences of this is that healthcare innovation might stand to leave these population groups behind. One of the other reasons that we talk about equity specifically, as opposed to things like equality, is that we're also aware that if we look at research on a global level, the majority of research funding is given out through grant bodies located in Global North countries.  So we already know that research portfolios can actually be quite skewed towards population groups who live in those countries themselves.  We know that there's a lack of financial investment as well within developing economies.  So it's natural to assume that health innovation projects which address the needs of these communities are more likely to be conducted by researchers who are based in developing economies.  However, their access to funding is very limited, and on top of that they tend to have much smaller life sciences sectors, so their access for private funding, as well as opportunities to collaborate with industry can actually be quite limited in itself as well. Another reason that we care about equity is that we actually know that there are some sub-populations that are very diverse within themselves.  So a good example is the genetic diversity of Africa as a whole is much larger than those who live outside of Africa itself.  And for that reason there tends to be a focus on actually oversampling from people who are of these ancestries.  And another example being South East Asians as well.  The final challenge when it comes to equity is that we also know that there has to be a need for medical innovation for these population groups, and a desire for people to actually buy this type of innovation.  So there's a need for demand for these therapies and medications.  Now if we already know that developing economies might be less likely to be able to afford these medications, then the demand will always be lower for these population groups.  And therefore the demand for innovation might also be lower population groups.  But as a country, because we would want to make sure that we're able to provide medication to everyone equally, we need to take an equitable approach. So one thing about the lack of diversity within datasets actually means that we can't always accurately predict whether or not someone does or doesn't have a condition.  So we're still at the stage where accuracy is not as good for these population groups as it is for others, and it leads to things that we call false positives and false negatives.  So where we think that someone does or doesn't have a condition, and in fact, they might or they might now.  The incidence rates of that happening for anyone of non-European ancestry are higher.  That's one of the tensions that we're playing with at the moment, especially when it comes to providing genomic healthcare via a healthcare service.  Understanding people's cultural background and nuances I think is really important.  For example, a lot of those cultural practices can actually play into whether or not someone decides to receive or not receive a form of healthcare.  And it's also important to understand things like timing, so the decision around whether or not someone decides whether or not they're going to take a preventative medication might be based upon cultural timings around things like giving birth or something. Naimah: How can we ensure equitable access to genomic medicine for all of these communities? Maili: So I think we need to understand that there are several understandable reasons that people might not have been involved in genomic research to date.  Efforts have been made to engage with different communities, but this has sort of been piecemeal and we need to see how that engagement can feed into research practices. So that people feel as if their information that they've given has been taken on board, and that those research practices have been co-developed, and they feel more willing to engage so that that representation can increase.  There's also been examples where research has been actively untrustworthy in the past.  You know, there's well known stories of Henrietta Lacks, whose cancer cells were taken without her consent, and then used to develop research.  And there's different examples across the globe that kind of mirror that sort of exploitation.  So we kind of need to take note of these, and understand why people aren't there, and then allow that to inform engagement practices.  So that research practice can change over time and be more inclusive and encourage people to get involved and give good reason for them to get involved in that. Niharika: Also, to add on to what Trupti and Maili mentioned.  First of all, why this data gap exists, why is there inequity in genomic data?  It's because historically South Asian communities or the marginalised communities have been used to extract a lot of data, be it social research or medicine research.  So when a researcher approached them or a data collector approaches them, they feel that they're just going to collect the data and there will be no feedback process, or it might not benefit the community.  The communities do not understand what the clear benefits of these researches are.  And in terms of genomics, when we talk about medicine research, historically these communities have been exploited.  There has been information asymmetry, and we have observed a case in 1960s where in Coventry Punjabi women, or South Asian women, were given radioactive rotis, and they weren't even aware what they were consuming.  And it was in the name of research.  So there's always this hesitancy when it comes to medicine research. One way to tackle the problem of the data gap in genomic research is by co-production . So when you're approaching the communities, it sort of helps who is collecting the data, there is no skewed power dynamic involved.  People are usually comfortable giving their data when they feel that there is transparency from the data collector, they are being completely transparent, they come with you with clear benefits, how it's going to benefit the community.  And you are equally sort of agent of your own data, and you feel involved in the research, and you feel that you have power to give out your data and have control over the journey of that research. So it is also important how you frame the message when you're collecting the data.  In our communities, the idea of sevā or Kismet is very embedded in the communities, which mean either giving out your services or your time for the benefit of the communities.  So it's not just donation, but it's just spending more time or just working with the communities for a common or a collective benefit.  So when the message is framed in such a manner that you are doing a sevā or you are helping your communities bridge the health inequalities and there might be a collective benefit for the communities, people are more motivated to give their data.  But when the word donating data is used, then it puts a sort of emotional burden on the participant.  So it all depends on the messaging, how you frame your messages when you're collecting the data, and it's important to be cognisant of the cultural sort of ideas.  And this is something that can be used with South Asian communities, sevā and giving back to the communities. Maili: I was just going to say, I completely agree with that, like 100%, it's really important as well that the global majority don't feel pressurised into giving that data because of the language that's being used.  You know, the global majority are not represented in these datasets, so it could be that the language used might put pressure on people to donate that data to fill that gap, but that's not the right language.  I think it is about finding language to involve people, and figure out how the benefits of them donating data can relate to them and their community, so it just wanted to say that.  And also, it's important when we're using language like genetic ancestry that those aren't conflated with things like race or ethnicity, which are social uses of that language.  So I think this is just another area where it is really important to think about language and work with communities, to figure out what the right language to use it, and understand the benefits of using certain types of language. Naimah: And it just kind of highlights how many different nuances there is, and areas that need to be considered. Maili: Yes, I was just going to say, within that, we need to think about barriers to participation as well that might affect certain communities.  You know, there might be some language barriers, to making sure that we've got translators, or there's investment in making sure that the resources are there to make the engagement and also the research accessible to people.  There's things like people have lives, they have childcare, they have jobs, so making sure that they can donate data if they want to, at times that work for them and environments that work for them.  And things like transport costs and that sort of thing might be covered by a research organisation, so that people are empowered to get involved, and there's not too many barriers to become involved if they want to be.  I think that's really important to address as well. Naimah: Trupti, did you have something to add? Trupti: Yes, I was just going to say, I think it was really interesting that Niharika actually framed the benefit around community benefit.  Because within the policy sphere, and actually even within wider conversations on data and health, people use frame benefit in terms of patient benefit specifically.  And what we find is that when we engage with diverse communities, most of their concerns around harms are actually not harms necessarily to themselves specifically, but harms around their whole community.  And I do wonder whether there needs to be a slight reframing in how we talk about benefit when it comes to genomics in particular.  Because most people when they donate their data they know that it has consequences for those who are related to them. Naimah: So I wanted to talk about research governance as well.  And in the context of history of medical racism, with medical innovation now heading towards personalised healthcare, what are they key considerations we should have when it comes to rules around access to data? Trupti: So, I mean, one of the rules that we have within our biobank, when it comes to access to data, is that we don't want it to lead to any discrimination, and we won't allow access for things, for research projects, that do lead to discrimination.  However, we already know that there are lots of unintended consequences when it comes to research in general.  And when it comes to medical research in particular, and thinking about genomics in particular, lots of communities are aware that because in the past there has been a lot of research outputs have been used in ways that actually don't benefit these communities, and actually have negative consequences for these community groups, it means that the barrier to encourage people to take part is actually quite high.  When it comes to genomics in particular, obviously there's been a history of eugenics, and at the moment, that's quite a big area that lots of universities, especially in the UK, are going through eugenics inquiries.  It has effects upon people's perceptions of genomics as an area, and whether or not people can be confident that those types of research won't be repeated, and the types of research that will happen will actually benefit them. I mean, there's a good example that one of the community members gave, not directly to do with genomics, but actually they knew that if you're first name is Mohammed, your car insurance is actually much higher, your premiums are much higher.  And so they were concerned that if you were grouping people within genomic ancestries, or genetic ancestries, what consequences that has for them can be quite nuanced in the first instance.  But in the long-term it would actually mean that people might be grouped within these ancestries and policies and things that are created as a consequence were quite concerning for them. Naimah: And Maili, I wonder if you could tell me how people might feel more comfortable in the ways in which their data is being used? Maili: I guess if there's transparent governance mechanisms in place and they can understand how their data is being protected, you know, that goes right through data access committees.  There's one at Genomics England that as Trupti said reviews data.  So if they can understand what sorts of considerations that committee are thinking about in respect to genetic discrimination, and they can understand that certain considerations have been taken into account when their data is being used, that's one thing.  Another could be through consent processes.  So there's different sorts of consent models that could be explored with communities to figure out which one they'd be more comfortable with.  So broad consent I think is the one that's used at Genomics England at the moment.  So that means that people give their consent once, and then that data can kind of be used for a broad range of purposes.  But it's not always clear to people what those purposes are, or where that might be used over time. So there's different sorts of mechanisms that could be explored, like dynamic consent, where people are updated over time about what their data is being used for, and they can either opt out or opt in to those research practices.  Or forms like things like granular consent, where when people give their consent there's different options of people that they'd be happy for their data to be shared with.  So we know that people are less trusting of private companies, for example, so people might be able to say, “Yes, my data can be shared with nonprofit organisations or research organisations affiliated with universities or the government, but I don't want my data to be shared with private companies.”  And that might make people feel more comfortable in donating their data, because they might feel like they have some more control over where that is ending up.  And I think transparency there is really important, so people can understand when they give their data or they donate their data, they can understand what benefit might be coming from that.  And that might encourage people to get involved as well. Trupti: I was just going to add to that comment about dynamic consent.  So actually an interesting thing that Niharika mentioned earlier was this feeling that the people that we engage with actually really wanted a sense of control over their own data still.  Obviously when you give broad consent, your giving your consent, as Maili said, to a wide range of research that will happen or can happen in the future.  But interestingly, dynamic consent, I think culturally it is really valuable for some population groups, partly because it fits in very nicely with the idea that your biological data is actually a part of who you are. And that cultural philosophy can still exist within a lot of these communities that we're engaging with and a lot of these communities that we're trying to encourage to actually provide us with data.  Do you ever think that there could be like a medium position, where it was actually dynamic withdrawal? Maili: Yes, I guess that is something that could be explored, and I think that's one of the models that sometimes is talked about in academia or in these sorts of forums.  I think if people were dynamically kind of withdrawing, it might be interesting to understand why they're withdrawing and their reasons for that, so that research practice can change and take account of why people maybe no longer want to get involved in a certain type of research.  And I know that's something that you've spoken about in your community engagement groups. Naimah: Niharika, do you have something you want to add? Niharika: Yes, so when we were engaging with our communities, we primarily engaged with Hindi speaking people from Indian origin, Punjabi speaking people from Indian origin, and Urdu speaking people from Indian origin, and we spoke to them about genomic research.  We also spoke to them about the branches of genomic research and how their data could be used.  So while their data could be used for innovation in pharmacogenomics, which seemed to be more palatable for the people as this is an extension for treatments they've already been using.  For example, treatment for a chronic condition like hypertension or diabetes.  Whereas they were quite reluctant when it came to their data being used for gene editing.  So in Hindu religion, humans are considered the creation of Brahma, who is one of our main Gods.  And similarly in Islam, humans are called (Islamic term), which means God's greatest creation.  So when it comes to gene editing, some people believe that it means you are playing God, it means that you're tampering with the DNA, you're tampering with God's creation.  So they were really reluctant in providing their data for an innovation that entails gene editing or genetic screening or gene therapy. And when it comes to consent, I know Genomics England takes a broad consent, and there's scope of dynamic consent.  Where people are constantly engaged on where their data is being used, how their data is being used, which innovation their data is being used for, which research their data is being used for.  And they have an opportunity to withdraw their data if they're uncomfortable with any aspect of research. Maili: I was just going to say something else about consent models.  When we're thinking about different forms of consent, like dynamic consent, it's also important to consider the accessibility of those, lots of those models would rely on the internet and people having access to laptops or phones.  And so when we're exploring those models, we need to make sure that people have access, and if they don't have access that there's other ways that that sort of consent model might be able to be replicated, or there is an alternative way, so that people aren't excluded through that. Naimah: Is there a question around language barriers as well with the consent models? Maili: Yes, when verbal consent is taking place, the same problems of language barriers are there within the online version.  You know, how do you make sure that things that are translated, and translated well as well?  Because genomics is a complicated area with lots of jargon and complex language.  So how can we make sure that we translate that language in a way that's done, where the meaning is kind of translated as well. Trupti: The language thing was something that came up within some of our community workshops.  And I think one of the things that really came out was that genomics research itself has so much technical language that often you simply cannot translate the word into other languages.  And different ways in which you can convey information, so that you're still making sure that you're getting informed consent from participants I think is really important for these groups, beyond simply translating written material.  Whether that's through analogies or visuals that convey information, I think that's quite an underexplored area actually, within research more generally, but as a starting point genomics. Naimah: And did any of those community groups identify any preferences for what way they wanted to be communicated with, for consent and things like that? Trupti: I mean, certainly having online consent was a huge barrier.  So the idea that you log into a platform online in order to provide your consent to something wasn't something that people were that comfortable with.  Especially since these participants are often very reluctant to take part in the first place, so you're almost creating a barrier to them as well, it's an extra thing that they have to do.  They did feel that consent should really be in person.  They also preferred the idea of being able to discuss genomics widely within less formal settings, so outside of healthcare settings, or outside of research settings.  Because it meant that they felt that they were primed for the questions that they might have. One of the things that I was going to add is actually for genomics in particular, I mean, I mentioned before about when people decide whether or not they would like to consent to take part in genomic research..  They feel like they're not just consenting for themselves, they're also consenting for people within their network.  And so these are people that they would consult probably as to whether or not they should or shouldn't take part.  And so when you are making that decision and you're having those consenting conversations, whether that be within a research setting or a healthcare setting, it's important I think for people to understand that those decisions have been taken not just by an individual, they are actually reaching out to a much wider range of people within their own communities. Naimah: And is there something around that these decisions are often made with family members as well? Trupti: Yes.  So in situations where there are people from some cultures who are much more likely to take part in cousin marriages, these particular populations have scientifically been shown to have much higher likelihood to develop genetic conditions.  Now if that is the case, that can lead to a lot of stigmatisation, and it can proliferate a lot of discrimination that these population groups might be facing already.  So I think that's something to be considerate of.  And it might influence their decision making as to whether or not they or their family members should or shouldn't take part. Niharika: Yes, just to add onto what Trupti and Maili actually said, while language plays a very important role in terms of consent, how consent is being taken, it also depends on the setting.  In our areas where we engage with communities, usually the consent, or consent regarding medical research or genomic research is taken via the GPs.  And the GP services here in our areas are so overwhelmed at the moment, there are long waiting lists, like three months.  And when people actually get through the waiting list and go to their GP, they're so done with the process of waiting that when their GPs ask them for consent, they just either feel that they need to succumb to the pressure of, okay, giving the consent.  Because there's this skewed power dynamic over them as their white man or white doctor asking for the consent.  But also, they don't know what exactly to do in that moment, they're very frustrating from the long waiting line.  And they feel they're okay, they might need a little time to sort of cool down, go back home, look at the consent form, what is it about?      And in South Asian settings usually the decision making is done in family setting, where you consult your families.  And when we spoke to older South Asian women and asked them how would they give their data and why would they give data, they mentioned that they would give data because their children or husbands have advised them to do so.  So yes, it's important to see the setting of where the consent is being taken, who is taking the consent, and if they have enough time to think about it and go back and give their consent.  Also, it came up during the workshops that it helps if the consent is being taken by someone the communities already trust.  So having accredited community champions seek the consent.  So once they're trained, once they have enough knowledge about genomic research and how it can benefit their communities, they're able to better bridge the gap between the researchers or the research organisations and the communities.    Maili: Yes, I completely agree.  And I was just going to add that it's important that healthcare professionals are properly informed and open and aware of those different cultural or contextual dynamics within those consenting conversations.  So that they can properly listen and understand where people are coming from and give that time.  And I get that that's difficult in pressurised situations, where healthcare professionals are under a lot of time pressure.  But that needs to really be built into that healthcare professional training over time so that carries on and people can talk about genomics in a really accessible way.  And that carries through as well to genetic counsellors who give results to families, they need to be able to do that in the right sort of way.  And they need to ask the right questions and understand the patient that they're talking with so that that information can be translated or got across in the best possible way.      And that's even more important I think where there is a lack of diverse data that's informing research and informing healthcare outcomes.  I think healthcare professionals should be transparent with patients about some of the accuracy of certain things or how different results might mean different things for different people.  And it's really important that those conversations are had very openly and for that to happen, healthcare professionals also need to get the training to be able to do that.    Naimah: Okay.  So we're going to move on to talk a bit about developing countries.  Niharika, I wanted to come to you for this question.  Why would diverse communities benefit from research being more collaborative with developing countries?    Niharika: So in recent times, we have witnessed growing diaspora in the UK.  And when it comes to collaboration with developing countries, there's increased collaboration with these developing countries.  It can be a win-win situation for both the countries, for example, there can be increased innovation for these developing countries in exchange of information.  And at the same time, people in the developing countries, if they provide their data, they have the sense that they are helping their own communities who are living abroad.    Naimah: You've touched on a few points already, but, Trupti, I wonder if you could talk about the considerations we should have when considering international partnerships?    Trupti: Yes.  So one of the things that Genomics England has tried to do in the past and is still trying to do is increase the number of international academics that can have access to our biobank.  Now we already know that internationally, especially in developing economies, there's often a lack of data purely because the resource to do things like whole genome sequencing is so expensive.  The resource to even have or host a biobank itself is so costly that the barrier to even developing the infrastructure is so high.  So one way that we're looking to encourage innovation within those settings is actually to allow access through particular partnership agreements to academics who are based abroad.  Now obviously that means that there's a benefit for them in terms of being able to do the research in the first place.  But one of the things is that as a biobank we're also known for being a very highly secure biobank, compared to others.  So that's something that as a data store people actually highly respect, and in particular, a lot of the data regulation within the UK is highly respected by other countries.      One of the things that we have seen happening recently is that essentially some of our data security laws and data protection regulations are being reproduced in other countries as a way to ease working with research datasets across geographic political boundaries.  When it came to engaging members of local primary communities they have three primary asks when it came to the international partnerships that we might be developing in the future.  One of them was that at the very least there would be tiered pricing.  If we ever came to a situation where we were charging for access to our data, that pricing should be tiered to address the fact that if you are someone based in a developing economy, your access to financial resource to do research is much lower.      The second ask was that there'd be some way for us to foster collaborations.  Now, whether that be led by an academic who is based abroad or an academic based in the UK was up for debate.  It was more that those collaborations have to continue and have to be enabled in some capacity.  And then the third thing that was a big ask was actually around IP sharing.  So what happens to the financial benefits of doing this type of research?  And also, more equitable basically knowledge sharing across these regions was what was asked.  So what we're looking at in the near future is whether or not these principles could be used in order to guide some of our international partnerships' work.    Naimah: And I think just on that point you raised about fostering collaborations, Maili, I wonder if you could comment on how we could foster collaborations between the researchers and the communities that they serve?    Maili: Yes.  I think here is when engagement is really important, and we need to get researchers and communities speaking to each other, to have some sort of meaningful dialogue that doesn't just happen once but is embedded into whole research practices.  So there's many different opportunities to feed in and that practice is shaped based on the feedback the researchers receive.  I think engagement is a really amazing thing, but it does need to be done well, and there needs to be clear outcomes from that engagement.  So people need to feel that the information that they're giving and the time that they're giving is respected, and that those practices do change as a result of that.  So I think we really need to make sure that engagement and practices are done well.  And I was just going to say something on collaboration between different researchers.  When researches are happening across borders, it's really important that that's done in a really equitable way, and that those conversations are had between different researchers to figure out what's going to work well.      We need to avoid instances of things like helicopter science, and sometimes it's called other things.  Where researchers for example from the UK would go into a developing country and undertake research and then leave, taking all the benefits with them and not sharing them.  And that's something that we really need to avoid, especially in the UK, we don't want to exacerbate colonial pasts.  And I think it's really important in this context that those benefits are shared with communities.  And again, we can do that through engagement and understanding that relationship and making sure that collaboration really is collaboration, and that we can provide things that maybe others need or want in the right sort of way.    Niharika: Just to reiterate our communities are still haunted by the colonial pasts.  There's always this constant fear that our data might be misused, there might be data breaches and we won't be protected.  And your DNA data contains a lot of personal information, so there's constant anxiety around your DNA or genetic data.  So it's important that the researchers maintain utmost transparency.  There's a constant focus on flattening the hierarchies, where you sort of bridge the power gap between the researchers and the communities.  And it can be done through, again, as I mentioned before, having community champions on board who understand the communities better, who are constantly in touch with the communities.  And they provide that sort of semi-formal settings, where they know that where they're in constant touch with the authorities or the GPs or NHS, but also at the same time have very good relationship with the communities.  So this is something that should be taken into consideration.  And then just be cognisant of the cultural values, and not have very imperial ideas when you sort of approach communities.    Maili: I think this becomes even more important as genomics continues to evolve and new genomic techniques are developing.  For example, with things like polygenic scores, where we can look at people's genomic data and predict how susceptible someone might be to developing a certain disease or trait or outcome, in relation to the rest of the population.  Those are developing, and people are interested in them, but the data that they're based off again is that European genetic ancestry data, and therefore is not accurate or applicable to lots of communities.  And it's not just genes that we need to be aware of, it's people's environments, and that data is really important to integrate with things like polygenic scores.  I think we need to really address these issues now and make sure that as genomics develops that these things aren't perpetuated and existing health inequalities aren't continued to be exacerbated.    Naimah: Okay, we'll wrap up there.  Thank you to our guests, Maili Raven-Adams, Niharika Batra and Trupti Patel, for joining me today as we discussed the ethical, legal and social implications of genomics research for diverse communities.  If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app.  Thank you for listening.  I've been your host and producer, Naimah Callachand, and this podcast was edited by Bill Griffin at Ventoux Digital.

“I think one of the reasons dignity matters to animals is that they are objectified. They are stripped of their agency very often, and they're also caught up in power relations with human beings that do not go in their favor in, in the overwhelming number of cases. But it's also grounds why they have a right to be subjects of justice, doesn't it? So, it is the fact that they are subjects, that they are agents, that they their voices matter in a political sense.” – Melanie Challenger     Melanie Challenger wears a lot of hats— she's an artist, philosopher, poet and writer, deputy co-chair of the Nuffield Council on Bioethics and a Vice President of the RSPCA UK. She is the author of On Extinction: How we became estranged from nature (2011), How to Be Animal: What it means to be human (2021), and anthology editor of Animal Dignity: Philosophical Reflections on Non-human Existence (2023).   Melanie is bringing her decades of experience in both science and the arts to come up with a solution to a big question: how can non-human animals be represented in the process of making crucial decisions that affect their lives? This project is called Animals in the Room. It began during the pandemic and is an international collaboration of philosophers, scientists and animal welfare specialists who are working together to devise and test models for representing non-human.    Links: Melanie Challenger: https://www.melaniechallenger.com/about/ Animals in the Room: https://animalsintheroom.org/

The historian Michael Taylor looks back at the past tug of war between religion and science, and how the discovery of ancient bones challenged religious orthodoxy. Impossible Monsters: Dinosaurs, Darwin and the War Between Science and Religion is the story of a group of people whose insights tested beliefs about creation and cosmology, and ushered in the secular age.But Nick Spencer from the thinktank Theos dismisses the idea that science has rightly relegated religion to the margins. In his new book Playing God: Science, Religion and the Future of Humanity (co-authored with Hannah Waite) he argues that religious belief is uniquely placed to help people navigate a world dominated by scientific breakthroughs – from AI to aliens, gene editing to the treatment of mental health.Professor Frances Flinter has been at the forefront of innovations in the treatment of genetic conditions for decades in her role at Guy's & St Thomas' NHS Foundation Trust. She is also a member of the Nuffield Council on Bioethics and says that medical decisions are rarely based purely on science, but involve thinking about what it means to be human. Producer: Katy Hickman

Increasing numbers of women are choosing to freeze their eggs in the hope that years down the line they can use these younger, healthier eggs to have children once their relationship, personal, financial or work circumstances are right. And fertility clinics and employers are increasingly pushing women to consider this option as a ‘normal' part of life, while a culture war backlash from the political and social right is also well underway. But how on earth should we as Christians think about the practice of so-called social egg freezing, which has shot up eightfold in the last decade alone? Is it prudent and necessary to ensure women can play a full part in the workplace? Or a denial of our created reality, and a dangerous use of technology to selfishly pursue our own desires? Can we retain the huge benefits of the feminist revolution of the last century while also ordering our lives and fertility how God intended, without invasive technological ‘fixes'? • A helpful Nuffield Council on Bioethics briefing paper https://www.nuffieldbioethics.org/publications/egg-freezing-in-the-uk/introduction • The New York Times's research into differing maternal age at first birth across the United States https://www.nytimes.com/interactive/2018/08/04/upshot/up-birth-age-gap.html • Subscribe to the Matters of Life and Death podcast: https://pod.link/1509923173 • If you want to go deeper into some of the topics we discuss, visit John's website: http://www.johnwyatt.com • For more resources to help you explore faith and the big questions, visit: http://www.premierunbelievable.com

On this episode we discussed how science and faith have interacted in the lives of our speakers, whether complementing each other or, at times, encountering situations where there might have been some apparent friction between the two. Our panel of speakers included Julian Hughes and Monika Kondratowicz, as well as two students from the chaplaincy: Sam Wilson and Thomas Doyle. Biographies Julian Hughes was a NHS consultant for over 20 years in North Tyneside and Newcastle. He was honorary professor of philosophy of ageing at Newcastle University and subsequently professor in old age psychiatry at the University of Bristol. He qualified in Medicine from Bristol, but studied Philosophy as an undergraduate at Oxford and for his PhD at Warwick. Elected Fellow of both the Royal College of Psychiatrists and the Royal College of Physicians of Edinburgh, he advised various national and international bodies and was the deputy chair of the Nuffield Council on Bioethics. He remains an honorary professor at Bristol and visiting professor at Newcastle and continues to write philosophically. Monika obtained her medical degree from the University of Cambridge in 2019 before working as an NHS hospital doctor in Exeter and Birmingham. While an undergraduate she was introduced to the emerging, expanding, and exciting area of molecular genomics and genetic medicine, and was able to contribute to research papers in the field of epigenetics. She would later complete a Master's degree in Genetics at The University of Exeter and at Cité Université, Paris, France. She has recently returned to England to complete her medical speciality training in histopathology whilst maintaining a research interest in molecular pathology and genomics. Monika is an unpolished amateur autodidact of philosophy, with her readings largely selected from the Classical Canon, Continental Philosophy, and Catholic apologetics. Sam Wilson is in the 4th year of an MSci in Zoology and Thomas Doyle is a 3rd Year Civil Engineering student. https://radiomariaengland.uk/chaplaincy-chats…ith-season-4-ep5/ If you would like to get in touch, email: scienceandfaith@radiomariaengland.uk Facebook/Instagram: @radiomariaengland #RMESCIENCEANDFAITH We thank ECLAS for their generosity to make our tour to universities possible.

As sure as night follows day, we will face another pandemic, so how can we learn from the mistakes made during Covid-19, to ensure our response next time is not only more effective, but also more ethical? Today Mark and his guests Ilina Singh, James Wilson and John Prideaux dissect the British Government's approach during the Covid-19 pandemic and explore the failure to engage seriously with the ethical challenges the pandemic raised, comparing the British approach with those in the USA and China. And they debate how ethicists and ethical thinking could play a more central role in deciding how to respond to the next pandemic. With Catherine Joynson of the Nuffield Council on Bioethics. Produced in collaboration with the UK Pandemic Ethics Accelerator. Presented by Mark Honigsbaum @honigsbaum With: Catherine Joynson Associate Director, Nuffield Council on Bioethics www.nuffieldbioethics.org | @CathJoynson | @Nuffbioethics John Prideaux The political correspondent at the Economist. www.mediadirectory.economist.com/people/john-prideaux/  |   https://www.economist.com/  | @JohnPrideaux | @TheEconomist Ilina Singh Professor of Neuroscience & Society at the University of Oxford and co-director at the Wellcome Trust Centre for Ethics and the Humanities. Principal Investigator on The UK Pandemic Ethics Accelerator, a collaborative project that brought UK ethics research expertise to bear on the multiple, ongoing ethical challenges present by Covid-19. https://www.psych.ox.ac.uk/team/ilina-singh  | @OxPsychiatry James Wilson Professor of Philosophy and Co-Director of the Health Humanities Centre at UCL and co-investigator on the UK Pandemic Ethics Accelerator. www.ucl.ac.uk/philosophy/people/permanent-academic-staff/james-wilson  |  @jamesgswilson | @ucl Series Producer: Melissa FitzGerald @Melissafitzg Co-producer: Kate Jopling @katejopling Cover art by Patrick Blower  www.blowercartoons.com Follow us on Twitter: @GoingViral_pod     Follow us on Instagram: goingviral_thepodcast  Blog: markhonigsbaum.substack.com  This episode of Going Viral on trust in the pandemic, has been produced in collaboration with the UK Pandemic Ethics Accelerator. The Ethics Accelerator was funded by the UKRI Covid-19 research and innovation fund.  https://ukpandemicethics.org/   |   @PandemicEthics_ If you enjoy our podcast - please leave us a rating or review.  Thank you!

Professor Sir Michael Marmot has been researching health inequalities and their relationship to social injustice for more than 50 years. He has long been a vocal critic of how health inequalities undermine social cohesion and the ability of health systems to respond effectively to pandemics and other health emergencies. Despite being an outspoken critic of austerity and the policies of successive Coalition and Conservative British governments, he was named a Companion of Honour in the 2023 New Year Honour's List. Today Prof Sir Michael Marmot speaks to Mark about Covid-19 and health inequalities as well as his decades-long research into this field.  This interview is featured in our companion episode: ‘All In It Together: Were Unequal Outcomes Inevitable during Covid-19?' Presented by Mark Honigsbaum @honigsbaum With: Professor Sir Michael Marmot Professor of Epidemiology at University College London, Director of the UCL Institute of Health Equity, and Past President of the World Medical Association. https://www.instituteofhealthequity.org/  @MichaelMarmot @marmotihe Series Producer: Melissa FitzGerald @Melissafitzg Co-producer: Kate Jopling  @katejopling Cover art by Patrick Blower. www.blowercartoons.com Follow us on Twitter: @GoingViral_pod     Follow us on Instagram: goingviral_thepodcast  This episode of Going Viral on trust in the pandemic, has been produced in collaboration with the UK Pandemic Ethics Accelerator. A partnership between the Universities of Oxford, Bristol and Edinburgh, University College London, and the Nuffield Council on Bioethics (the Principal Investigator was Professor Ilina Singh, University of Oxford). The Ethics Accelerator was funded by the UKRI Covid-19 research and innovation fund.  https://ukpandemicethics.org/   /  @PandemicEthics_ If you enjoy our podcast - please leave us a rating or review.  Thank you!

When Covid-19 first struck the UK, the disease was described as “a great leveller”. But it soon became clear that Covid's impacts were not evenly distributed - we may have been in the same storm, but we were in different boats.  Today Mark and his guests Charlotte Augst, Halima Begum and Beth Kamunge-Kpodo discuss unequal outcomes during the Covid-19. With Professor Sir Michael Marmot and Pastor Mick Fleming. Produced in collaboration with the UK Pandemic Ethics Accelerator. Presented by Mark Honigsbaum @honigsbaum With: Dr. Charlotte Augst Former Chief Executive of National Voices, a coalition of charities working on health issues and which was extremely active highlighting issues of inequality during the pandemic. www.nationalvoices.org.uk  / @CharlotteAugst Dr. Halima Begum Chief Executive of the Runnymede Trust, the UK's leading race equality think tank. https://www.runnymedetrust.org  / @Halima_Begum Pastor Mick Fleming Founder of Church on the Street Ministries, Burnley. @PastorFleming Dr. Beth Kamunge-Kpodo Beth is a Lecturer in Law at the University of Reading. She has a longstanding interest in exploring and addressing various forms of inequality. www.reading.ac.uk/law/our-staff/beth-kamunge-kpodo Professor Sir Michael Marmot Professor of Epidemiology at University College London, Director of the UCL Institute of Health Equity, and Past President of the World Medical Association. Professor Marmot has led research groups on health inequalities for over 50 years. @MichaelMarmot https://www.instituteofhealthequity.org Series Producer: Melissa FitzGerald @Melissafitzg Co-producer: Kate Jopling  @katejopling Cover art by Patrick Blower. www.blowercartoons.com Follow us on Twitter: @GoingViral_pod     Follow us on Instagram: goingviral_thepodcast  This episode of Going Viral on trust in the pandemic, has been produced in collaboration with the UK Pandemic Ethics Accelerator. It is a partnership between the Universities of Oxford, Bristol and Edinburgh, University College London, and the Nuffield Council on Bioethics (the Principal Investigator was Professor Ilina Singh, University of Oxford). The Ethics Accelerator was funded by the UKRI Covid-19 research and innovation fund.  https://ukpandemicethics.org/ @PandemicEthics_ If you enjoy our podcast - please leave us a rating or review.  Thank you!

As the Genetic Technology (Precision Breeding) Bill goes through parliament, scientists are engaging in a public dialogue. The Biotechnology and Biological Sciences Research Council (BBSRC) and the Nuffield Council on Bioethics say people want more clarity on the government's overarching plan for the future of food and farming, in order to understand how genome editing would fit into it. MPs are launching an inquiry into the cost-of-living crisis in rural areas. The All Party Parliamentary Group on Rural Business will be collecting evidence. Just last month a report by the Rural Services Network showed rural households on a low income now spend about 5% more than low-income households in urban areas. It also found because of a greater reliance on cars, rural households spend on average about £114 a week on transport, compared to £80 for urban households. We speak to the Country Land and Business Association which is supporting the cross-party inquiry. All week we've been talking about International Trade - mostly looking at food - but the inputs needed to grow that food account for a huge part of international trade, and the war in Ukraine has disrupted the usual flow of that business. We speak to a commodities analyst who specialises in fertilisers. She paints a picture of fertiliser production across the globe and how that has changed in the past year.

"Every body is wrong; no body feels right". So says philosopher Clare Chambers, who defends the idea of the unmodified body, both as a political and an ethical concept. It's not that bodies don't change of course - they do all the time, and should, by what we do and eat and so on. But we dig into the three reasons we modify our body: appearance, health and hygiene, or identity (using my decision to brush my teeth as an example). Clare explains why the idea of being "trapped in the wrong body", a popular description among many trans people, has some problems as well as potential, in part because to some extent we are all not in the right body, or our "own" true body. That's why new mothers are urged to "get their body back". We talk about how far gender differences are the result of nature or culture; why there is no clear distinction between cosmetic surgery and cultural surgery; how shaming doesn't really work as a public health approach; the changed nature of bodybuilding (and not for the better). We discuss the striking differences in rates of male circumcision between the U.S. (80% of boys) and the UK (6%), where it is described as a procedure of last resort, what this tells about the role of culture and especially how what counts as a "medical procedure". In her new book Intact, Clare has produced an excellent and thoughtful treatment of some very important and sensitive subjects right now, and it was a real pleasure to have this dialogue with her.  Read Intact: A Defence of the Unmodified Body (Penguin, 2022) Clare Chambers Professor of Political Philosophy and a Fellow of Jesus College, University of Cambridge. She is the author of Against Marriage: An Egalitarian Defence of the Marriage-Free State (Oxford University Press, 2017); Sex, Culture, and Justice: The Limits of Choice (Penn State University Press, 2008); Teach Yourself Political Philosophy: A Complete Introduction (with Phil Parvin, Hodder, 2012); and numerous articles and chapters on feminist and liberal political philosophy. She is also a member of the Nuffield Council on Bioethics,  Website: http://www.clarechambers.com/ Twitter: @DrClareChambers The Dialogues Team  Creator: Richard Reeves Artwork: George Vaughan Thomas Tech Support: Cameron Hauver-Reeves Music: "Remember" by Bencoolen (thanks for the permission, guys!)

“Although there is this sense where you don't really find as many women in science, and when we get missed out of science, I think we have been really lucky and fortunate to work with incredible women in large numbers. We're quite lucky to find the experiences that we have.” […] “Life is so precious, we really shouldn't be spending any time doing things we don't enjoy.” In this week's episode of The G Word, Dr Ellen Thomas, Clinical Director and Director of Quality at Genomics England, is joined by Arzoo Ahmed, Ethics Lead of the Newborn Genomes Programme, and Cassandra Smith, Senior Bioinformatician, both at Genomics England. Ellen worked on the delivery of the 100,000 Genomes Project and Cassie did her PhD using bioinformatics to study parts of mitochondria before joining the operations team at Genomics England. Arzoo completed her MPhil in Mediaeval Arabic Thought before moving onto the Nuffield Council on Bioethics and then joining the Ethics Team here at Genomics England. In this discussion, these three brilliant women talk through their roles and what inspired them to pursue a career at Genomics England. In celebration of the International Day of Women and Girls in Science, they also discuss the challenges they have faced along the way and how being a woman has impacted their career.

A paper from the Nuffield Council on Bioethics calls for a new international agreement to be reached around welfare in any future gene-edited farm animals - to ensure it doesn't cause them harm, or lead to farming methods with lower welfare standards. Later this week the Government will announce details about the new support payments for farmers, the Sustainable Farming Incentive. At an online conference yesterday for tenant farmers, run by the National Farmers' Union, the Farming Minister Victoria Prentis surprised delegates by saying that the details of subsidies in England "will change from year to year". And a Northern Ireland charity says that a lack of farm workers is causing a spike in calls to its helpline, with farmers there leaving the dairy industry because a lack of staff is making the job impossible. Presented by Anna Hill and produced by Beatrice Fenton.

Speakers: Prof David Archard - Chair Nuffield Council on Bioethics, UK; Dr Joe Brierley - Chair, Clinical Ethics Service and Intensivist, Great Ormond Street Hospital for Children, London; Dr Sarah Aylett - Clinical Ethics Service and Neurologist Great Ormond Street Hospital for Children, London. In this session we discuss how innovative therapies should be considered for use in the COVID-19 pandemic. The ethics team from GOSH London and the Nuffield Council on Bioethics take into account the clinical needs of sick children and the imperative to 'do something', against the scarcity of solid scientific evidence about proposed treatments. The session is moderated by Prof Lynn Gillam, Children's Bioethics Centre, RCH.

Speakers: Prof David Archard - Chair Nuffield Council on Bioethics, UK; Dr Joe Brierley - Chair, Clinical Ethics Service and Intensivist, Great Ormond Street Hospital for Children, London; Dr Sarah Aylett - Clinical Ethics Service and Neurologist Great Ormond Street Hospital for Children, London.In this session we discuss how innovative therapies should be considered for use in the COVID-19 pandemic. The ethics team from GOSH London and the Nuffield Council on Bioethics take into account the clinical needs of sick children and the imperative to 'do something', against the scarcity of solid scientific evidence about proposed treatments. The session is moderated by Prof Lynn Gillam, Children's Bioethics Centre, RCH.

Niepłodność i bezpłodność to pogłębiający się problem nowoczesności. Dlatego macierzyństwo staje się niespełnionym marzeniem coraz większej liczby kobiet. Postęp w biotechnologii stworzył nowe możliwości, a także nieznane wcześniej dylematy. Surogacja, czyli macierzyństwo zastępcze, daje nadzieję bezdzietnym parom na posiadanie potomstwa. Kulisy ukraińskiego biznesu surogacyjnego, które odsłonimy w tym odcinku, wywołują jednak kontrowersje i wątpliwości natury etycznej. Innowacja unieważniła rzymską zasadę „mater semper certa est”, czyli „matka zawsze jest pewna”. Dziś matek jest wiele – jest matka genetyczna, matka biologiczna, matka prawna oraz matka społeczna. Każda z nich może być inna kobieta. Może być też tak, że dziecko ma dwie matki genetyczne jednocześnie i jednego ojca. Najnowsza technologia IVG umożliwia wyprodukowanie komórek jajowych z komórek somatycznych, np. komórek skóry. Czy to oznacza że matką genetyczną będzie mógł być mężczyzna? Kim będzie matka przyszłości? Czy biorąc pod uwagę pogłębiający się problem niepłodności, macierzyństwo będzie przywilejem bogatych? Czy prawo nadąży za galopującym postępem technologicznym? Czy przyszłość macierzyństwa będzie zależeć tylko i wyłącznie od technologii? Czy definiować ją będą także matki – te dzisiejsze i te przyszłe? W odcinku występują: Tosia Woźniak - 17-latka z Warszawy Monika Łukasiewicz – ginekolożka, która pracuje z in vitro Lorna Gibb – brytyjska pisarka, autorka książki „Childless Voices” Natalia Hatalska – założycielka i prezeska instytutu badań nad przyszłością infuture.institute, autorka książki „Wiek paradoksów. Czy technologia nas ocali” Jakub Korus - dziennikarz, autor książki reporterskiej „Surogatki. Historie kobiet, które rodzą po cichu” Sarah Walker Robson - członkini brytyjskiej organizacji zajmującej się etyką medyczną Nuffield Council on Bioethics David King - biolog molekularny, założył Human Genetics Alert Helen Watt - członkini chrześcijańskiego centrum bioetyki na Oxfordzie Basia Staniszewska – samotna matka z wyboru, zdecydowała się na zajście w ciążę metodą in vitro ze swoim przyjacielem Anna Bucher - matka 5 dzieci Weronika Czokajło – 17-latka z Sejn Autorka: Agata Kasprolewicz Współpraca: Krystyna Romanowska Realizacja: Kris Wawrzak, studio „Efektura” Partner Raportu z przyszłości: https://incredibleinspirations.com

Der Gast: In dieser Woche habe ich mit der Professorin Alena Buyx gesprochen, der Vorsitzenden des Deutschen Ethikrats. Ihre Schwerpunkte im Ethikrat sind Medizinethik, Forschungsethik und Public Health Ethik. Alena Buyx hat in München, York und London Medizin, Philosophie und Soziologie studiert. Sie war Academic Scholar an der Harvard Medical School. Von 2009 bis 2012 arbeitete sie als stellv. Direktorin des Nuffield Council on Bioethics in London, von 2012 bis 2014 leitete sie die DFG Emmy Noether Gruppe Bioethik und Politische Philosophie an der Westfälischen Wilhelms-Universität Münster. Ab 2014 war sie Professorin für Medizinethik in Kiel, seit 2018 ist Alena Buyx Direktorin des Instituts für Geschichte und Ethik der Medizin und Professorin für Ethik der Medizin und Gesundheitstechnologien an der TU München. Sie ist Mitglied des WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing und hat schon zahlreiche Ehrungen erhalten, u.a. 2021 den Deutschen Nationalpreis der Deutschen Nationalstiftung, seit 2011 ist sie Fellow of the Royal Society of Arts. Das Thema: Streiten sich die Mitglieder des Deutschen Ethikrats auch mal wie die "Kesselflicker"? Immerhin gibt es aktuell viele streitige Fragen: Wie umgehen mit Geimpften, Genesenen, Getesteten und wie mit Impfverweigerern? Wie sollen die nächsten Schritte in der Pandemie aussehen, können wir vulnerable Gruppen besser schützen, welche ethische Verpflichtung haben wir gegenüber den Kindern? Viele Themen, die man aus unterschiedlichen Perspektiven beleuchten muss und sollte. In diesem Podcast haben wir schon mit Vertretern der verschiedensten Disziplinen gesprochen – in dieser Woche mit der Vorsitzenden des Deutschen Ethikrats. Das Team: Danke an Lea Eichhorn und Klaus Wehmeyer. Hinweis: Aufgrund eines technischen Problems konnten wir leider nur eine Telefonverbindung herstellen. Bewertet uns gern auf allen Plattformen und empfehlt uns weiter, wenn Euch die Folge gefällt. Zeitmarken: 00:03:30 Wie gehen wir mit den Geimpften und den Nicht-Geimpften um? 00:06:20 Muss es noch intensivere Aufklärungsmaßnahmen zur Impfung geben? 00:11:21 Welche Kennzahlen sind sinnvoll, wenn man nicht mehr allein auf die Inzidenzen schaut? 00:16:25 Sollte eine Impfpflicht für Pflegekräfte eingeführt werden? 00:20:00 Kann man die vulnerablen Gruppen schützen? 00:24:05 Welche Einschränkungen für Nicht-Geimpfte sind ethisch angemessen? 00:29:15 Ist es ethisch vertretbar, wenn Nicht-Geimpfte mit geringem Einkommen ihren Test selbst bezahlen müssen? 00:37:50 Haben Sie den Eindruck, dass die Politik bereit ist, alles dafür zu tun, die Schulen geöffnet zu halten? 00:44:30 Wie divers ist der Ethikrat aufgestellt?

In the first episode of the Counterintuitive Series on the Governance Podcast, Professor Clare Chambers (University of Cambridge) defends the ideal of the marriage free state. She argues that for reasons of justice and equality, the state should not legally recognise - and therefore, privilege - any particular form of marriage. And until it ceases to do so, we must consider its actions unjust. Subscribe on iTunes and Spotify Subscribe to the Governance Podcast on iTunes and Spotify today and get all our latest episodes directly in your pocket. Follow Us For more information about our upcoming podcasts and events, follow us on facebook, twitter or instagram (@csgskcl). The Guest Clare Chambers is Professor of Political Philosophy and a Fellow of Jesus College. She came to Jesus College and to the Faculty of Philosophy in the University of Cambridge in 2006. Previously she held academic positions at the University of Oxford and the London School of Economics, and has twice been a visiting scholar at UC Berkeley. Prof Chambers is on leave from College duties from October 2018 until October 2021. During that time she has a Major Research Fellowship from the Leverhulme Trust to work on a project titled Intact: The Political Philosophy of the Unmodified Body. Prof Chambers is a Council member of the Nuffield Council on Bioethics, the UK's leading independent body informing policy and public debate about the ethical questions surrounding medical and biological innovations and research. She is also Editor-in-Chief of Res Publica, a journal of moral, legal, and political philosophy; a member of the Executive Committee of The Aristotelian Society; and the Secretary of the Britain and Ireland Association for Political Thought.

After two of Boris Johnson's most influential advisers left Downing Street last week, can the PM reset his relationship with the Tory party and find his way again? (00:58) Lara is joined by the Spectator's deputy political editor, Katy Balls, and former director of communications for David Cameron, Craig Oliver.A coronavirus vaccine seems to be the only way out of continued lockdowns, so should everyone be forced to have the jab? (13:49) The Spectator's literary editor, Sam Leith, joins the podcast with Professor Mona Siddiqui, who sits on the Nuffield Council on Bioethics.And finally, should we start referring to people by their surnames again? (25:30) Historian Guy Walters thinks so, and he's joined by the Spectator's etiquette expert, Mary Killen.Presented by Lara Prendergast. Produced by Cindy Yu and Matt Taylor.

After two of Boris Johnson's most influential advisers left Downing Street last week, can the PM reset his relationship with the Tory party and find his way again? (00:58) Lara is joined by the Spectator's deputy political editor, Katy Balls, and former director of communications for David Cameron, Craig Oliver. A coronavirus vaccine seems to be the only way out of continued lockdowns, so should everyone be forced to have the jab? (13:49) The Spectator's literary editor, Sam Leith, joins the podcast with Professor Mona Siddiqui, who sits on the Nuffield Council on Bioethics. And finally, should we start referring to people by their surnames again? (25:30) Historian Guy Walters thinks so, and he's joined by the Spectator's etiquette expert, Mary Killen. Presented by Lara Prendergast.  Produced by Cindy Yu and Matt Taylor.

With measles infections on the rise in the UK, should vaccinations be made compulsory?Measles is an ‘entirely preventable' disease, says the UN – and for a while the UK and other developed countries had prevented it. But during the first three months of this year, the World Health Organisation reported 112,000 cases of measles. Over the same time last year it was 28,000In the UK we once again have outbreaks of measles and a falling vaccination rate. David Aaronovitch asks how much this matters and whether, as the Health Secretary has said recently, we should rule nothing out, even including compulsory vaccination.CONTRIBUTORSGareth Williams, Emeritus Professor of Medicine at the University of Bristol and author of Angel of Death: The Story of SmallpoxProfessor Heidi Larson, director of The Vaccine Confidence Project at the London School of Hygiene and Tropical MedicineHugh Whittall, director of The Nuffield Council on Bioethics Dr Stephen John, Hatton Lecturer in the Philosophy of Public Health at the University of CambridgeProducers: Richard Fenton-Smith & Serena Tarling Researcher: Kirsteen Knight Editor: Jasper Corbett

As the first talk for the 2018-19 Proceedings of the Aristotelian Society, this year's Presidential Address marks the official inauguration of Professor Jonathan Wolff (University of Oxford) as the 111th President of the Aristotelian Society. Jonathan Wolff is the Blavatnik Chair in Public Policy at the Blavatnik School of Government, University of Oxford. He was formerly Professor of Philosophy and Dean of Arts and Humanities at UCL. His recent work has largely concerned equality, disadvantage, social justice and poverty, as well as applied topics such as public safety, disability, gambling, and the regulation of recreational drugs, which he has discussed in his books Ethics and Public Policy: A Philosophical Inquiry (Routledge 2011) and The Human Right to Health (Norton 2012). His most recent book is An Introduction to Moral Philosophy (Norton 2018). Earlier works include Disadvantage (OUP 2007), with Avner de-Shalit; An Introduction to Political Philosophy (OUP, 1996, third edition 2016); Why Read Marx Today? (OUP 2002); and Robert Nozick (Polity 1991). He has had a long-standing interest in health and health promotion, including questions of justice in health care resource allocation, the social determinants of health, and incentives and health behaviour. He has been a member of the Nuffield Council of Bioethics, the Academy of Medical Science working party on Drug Futures, the Gambling Review Body, the Homicide Review Group, an external member of the Board of Science of the British Medical Association, and a Trustee of GambleAware. He writes a column on higher education for the Guardian. This podcast is an audio recording of Professor Wolff's address - 'Equality and Hierarchy' - at the Aristotelian Society on 1 October 2018. The recording was produced by the Backdoor Broadcasting Company.

Culture of Scientific Research with Catherine Joynson — Programme Manager at the Nuffield Council on Bioethics.

Tom Shakespeare, is an English sociologist and broadcaster. He is Professor of Disability Research in the medical faculty at the University of East Anglia (UEA)and a member of the Nuffield Council on Bioethics. He is also known for his work and activism around disability rights in the UK. In this episode, he talks about the role of religion in his upbringing, agnosticism and finding solace in Quakerism. He also talks about his work as an activist, and the challenges that people with disabilities face in the age of austerity. This episode also features a conversation with Theos' Natan Mladin about the idea of 'thinking about thinking'. Follow us on @sacred_podcast and on Twitter, follow Elizabeth at @Theoselizabeth. You can also follow Theos at @theosthinktank to keep up to date with news, events and the latest research.

Professor Eve-Marie Engels (Philosophy, University of Tübingen) Professor Martin Richards (Psychology, University of Cambridge) Chaired by Dr Vasanti Jadva (Psychology, University of Cambridge) Abstracts Prof Eve-Marie Engels: In Vitro Fertilization and its Long-Term Challenges For many people the primary purpose of the introduction of IVF was to alleviate infertility by assisted conception and to help couples to become parents. However, after its successful introduction IVF provided a range of further options, like preimplantation genetic diagnosis, embryonic stem cell research, and “social freezing”, the freezing of young women’s eggs with the option of thawing them for fertilisation in later life under more appropriate circumstances. All these techniques are bound up with a variety of ethical and social problems which have to be addressed. Prof Martin Richards: Ethical challenges in the use of reproductive donation The prime ethical issues in collaborative reproduction involving the use of donor insemination concern the relationships of the child with the intending parents and the donor. The historical development of arguments about the status of sperm donor offspring will be outlined and I will discuss contemporary ethical challenges in the use of donor sperm. About the Speakers Professor Eve-Marie Engels studied philosophy and biology in Bochum, Germany, where she also received her PhD. The topic of her doctoral dissertation was the problem of teleology in the philosophy of science, and she specialised in evolutionary epistemology. She held positions in Germany and the USA before taking on the first German chair for bioethics in Tübingen in 1996. She has published numerous articles and books on topics ranging from philosophy of science to applied ethics to Charles Darwin. She is a member of the International Centre for Ethics in the Sciences and Humanities which investigates the question of responsibility and applied ethics from an interdisciplinary perspective. From 2001 to 2011, she was spokeswoman of said centre. From 2004 to 2013, she was also spokeswoman of the graduate school "Bioethics" which was funded by the DFG (German Research Foundation). Prof Engels has also held various advisory positions for policy-makers such as memberships of the German Ethics Council (2001-2007) and the scientific advisory board of the Federal Office for Agriculture and Food (since 2014). Professor Martin Richards gained his PhD in Zoology at Cambridge, on maternal behaviour in the golden hamster. During his postdoctoral work at Harvard and Princeton, Prof Richards’ interests shifted towards maternal behaviour in our own species, and he returned to Cambridge to found what was to become the Centre for Family Research. Since his retirement from the Directorship of the Centre in 2005, he has continued a prolific and diverse research programme focussing on family life, on the meaning of ‘genetic connection’ in the context of alternative reproductive technologies, and most recently on the ethical issues surrounding research participation. In 2013 Prof Richards was invited to chair a Working Party at the Nuffield Council on Bioethics on 'Collecting, linking, use and exploitation of biological and health data: ethical issues'. He is Vice Chair of the UK Biobank Ethics and Governance Council and has previously served six years as a member of the Ethics and Law Committee of the Human Fertilization and Embryology Authority. Currently, Prof Richards is preparing the third in a three-part series of edited volumes on alternative reproductive technologies, entitled 'Regulating Reproductive Donation'.

Everyday people die in hospitals because there aren't enough organs available for transplant. In most countries of the world - though not all - it is illegal to sell organs. Governments insist that the motive for donating organs has to be altruistic, it can't be financial reward. The idea of being able to sell body parts makes many people uneasy. But is it time for a policy change: should we be permitted to flog one of our kidneys on ebay, say, for $10,000. If not, why not? Tim Lewens is a Cambridge philosopher and a member of the Nuffield Council on Bioethics.

Professor Joyce Tait, Chair of the Nuffield Council on Bioethics Working Party on Biofuels, and Scientific Adviser to the Innogen Centre at Edinburgh University, discusses the Council’s proposed development of a comprehensive ethical standard for biofuels. Professor Tait is interviewed by Jody Endres, a senior attorney at the Energy Biosciences Institute at the University of Illinois.

This year's Reith Lecturer is Onora O'Neill. She became Principal of Newnham College, Cambridge, in l992 and has chaired the Nuffield Council on Bioethics and the Human Genetics Advisory Commission. She is currently chair of the Nuffield Foundation and she has been President of the Aristotelian Society, and a member of the Animal Procedures (Scientific) Committee. In 1999 she was made a life peer as Baroness O'Neill of Bengarve, and sits as a crossbencher. She has written widely on political philosophy and ethics, international justice, bioethics and the philosophy of Immanuel Kant. In her final Reith Lecture Onora O'Neill asks, how do we decide who to trust when we search for inform about the wider world? Information technologies are ideal for spreading reliable information, but they dislocate us from our ordinary ways of judging one another's claims and deciding where to place our trust. We may reasonably worry not only about the written word, but also about broadcast speech, film and television. These technologies are designed for one-way communication with minimal interaction. Those who control and use them may or may not be trustworthy. How are we to check what they tell us?

This year's Reith Lecturer is Onora O'Neill. She became Principal of Newnham College, Cambridge, in l992 and has chaired the Nuffield Council on Bioethics and the Human Genetics Advisory Commission. She is currently chair of the Nuffield Foundation and she has been President of the Aristotelian Society, and a member of the Animal Procedures (Scientific) Committee. In 1999 she was made a life peer as Baroness O'Neill of Bengarve, and sits as a crossbencher. She has written widely on political philosophy and ethics, international justice, bioethics and the philosophy of Immanuel Kant. In her fourth Reith Lecture Onora O'Neill discusses the issue of transparency. As well as improving trust, she argues, it can also add to the ways in which the public can be deceived. She asks, "how can we tell which claims and counterclaims, reports and supposed facts are trustworthy when so much information swirls around us?" She argues a crisis of trust cannot be overcome by a blind rush to place more trust. Transparency certainly destroys secrecy: but it may not limit the deception and deliberate misinformation that undermine relations of trust. If we want to restore trust we need to reduce deception and lies rather than secrecy.

This year's Reith Lecturer is Onora O'Neill. She became Principal of Newnham College, Cambridge, in l992 and has chaired the Nuffield Council on Bioethics and the Human Genetics Advisory Commission. She is currently chair of the Nuffield Foundation and she has been President of the Aristotelian Society, and a member of the Animal Procedures (Scientific) Committee. In 1999 she was made a life peer as Baroness O'Neill of Bengarve, and sits as a crossbencher. She has written widely on political philosophy and ethics, international justice, bioethics and the philosophy of Immanuel Kant. In her third Reith Lecture Onora O'Neill looks at the quest for greater accountability in government, institutions and professionals and explores whether the instruments for control, regulation, monitoring and enforcement have worked.

This year's Reith Lecturer is Onora O'Neill. She became Principal of Newnham College, Cambridge, in l992 and has chaired the Nuffield Council on Bioethics and the Human Genetics Advisory Commission. She is currently chair of the Nuffield Foundation and she has been President of the Aristotelian Society, and a member of the Animal Procedures (Scientific) Committee. In 1999 she was made a life peer as Baroness O'Neill of Bengarve, and sits as a crossbencher. She has written widely on political philosophy and ethics, international justice, bioethics and the philosophy of Immanuel Kant. Onora O'Neill examines the search for justice in conditions where the basis for trust, is threatened by violence and intimidation. Trust often is reciprocal and when it is, we have virtuous spirals. However, trust can also open the door to betrayal, and betrayal leads to mistrust which in turn creates vicious spirals. In the most extreme situations where danger and terror undermine trust, it starts spiralling downwards and we might lose it all together.

This year's Reith Lecturer is Onora O'Neill. She became Principal of Newnham College, Cambridge, in l992 and has chaired the Nuffield Council on Bioethics and the Human Genetics Advisory Commission. She is currently chair of the Nuffield Foundation and she has been President of the Aristotelian Society, and a member of the Animal Procedures (Scientific) Committee. In 1999 she was made a life peer as Baroness O'Neill of Bengarve, and sits as a crossbencher. She has written widely on political philosophy and ethics, international justice, bioethics and the philosophy of Immanuel Kant. In the first of her Reith Lectures, philosopher Onora O'Neill examines the nature of trust, its role in society, and asks if there is real evidence of a crisis of trust. Confucius told his disciple Tsze-kung that three things are needed for government: weapons, food and trust. If a ruler can't hold on to all three, he should give up the weapons first and the food next and trust should be guarded to the end. Confucius' philosophy, Baroness O'Neill argues, is still convincing and she argues why.