Ethical Boundaries of Research with Human Embryos – Exploring Ethics

so this is these images are of a human embryo in the first stages of development starting from the fertilized egg and going through the blastocyst stage so here we're in the compacted marilla and then there's going to be a switch pretty soon you'll see here the blastocyst is expanding it's quite beautiful I think and it's due to a collaborator of mine and a former postdoc of mine who now work together they're embryologists and help women have babies who have trouble otherwise so this is a an embryo that was created for Reproductive purposes so we can see these things happen the embryos are obviously transparent so you can see every cell and yet there are a lot of things we don't know about these early stages of human development and I'm actually a high risk obstetrics cobster trician so I actually take care of people who are much later in development moms and their babies than this but we are more and more recognizing the complications of pregnancy and even postnatal complications and health risks stem from these very very early stages which led me on my research work to really want to focus this early that's typically so reproductive endocrinologists do this kind of work with embryos and since I'm not one of those but I appreciate that what they're doing is really important for what I see in the clinic so taking things a little bit more slowly and again it's from the same two people that we have these images these are snapshots so basically this is what a human embryo looks like at two days three days three and a half days four five about six and about about six here this is later this is a very unusual picture this actually comes from Mauna Prost who was going to be here but had a family emergency so she couldn't make it she's a perinatal pathologist and very rarely it's basically by accident someone has a hysterectomy gets your uterus out and they don't know they're pregnant and rarely the pathologist will see something like this and so these are the parts of the embryo a few days later after the beginning of implantation and this is early enough that even though we do give people pregnancy tests before doing any surgery on them this is so early that it doesn't come back as being positive so again so these various different stages of early development and we really still don't understand a lot of this process so you know what are our sort of rationales for wanting to decide to study this so one is we know that or we hope that we can optimize development of any given individual by giving them the right environment from the very earliest stages and there is more and more evidence that these even these very early stages are affected by a maternal health by things like maternal or paternal age and other sort of environmental factors but the mom for example is exposed to but we don't have definitive answers and without actually asking the question in a rigorous way we would never be able to come up with the answers and as I discussed a little bit before there are effects on pregnancy and prenatal health there's also effects we know on miscarriage and even on just basic fertility the ability to get to the point where you have a recognizable pregnancy so the other the next question is why is it so hard to study this we can see this in a dish and actually the reason I have that movie is that more and more the the most successful IVF clinics actually take images like this of every single embryo and then they sort of if a woman has many embryos developing they will score those embryos on their morphology and sort of how fast they get through different stages of development and then they'll pick the best ones and those lead to the best successes in pregnancy so but you know the problems are that to do research we have to think of a lot of important ethical questions so for example is collection of gametes and early embryos ethical is it legal where you live can donors be compensated in any way in terms of culturing embryos can they become cultured and if so how long can they be culturing again this legal and ethical and scientific barriers to that and then finally this is really becoming a big thing you might have heard of three parent babies and things like that you know is it again legal ethical doable on a practical scale to to do genetic manipulation of embryos and if so for what reasons can you justify that manipulation and then very practically early embers are very small the human embryos that I showed pictures of are less than about a hundred cells and so detection methods you know in the past were not sensitive enough to actually do any rigorous studies on them so now mammals all mammals kind of go through those stages of development and everybody sort of learns in elementary school that you look like a mouse or you look like a chick until a certain point in your development and is actually surprisingly late the problem is what you look like doesn't always reflect the underlying what we call regulatory networks that sort of drive that development and so a lot of aspects of human development are not very well represented in animals and mana and I work very closely together and we work on a lot of projects involving placental development which is that interface between mom and baby and in particular placental development in the human is very diversion from any other mammal or any other animal and so there are a lot of placenta specific diseases that only humans get makes it very hard to get any meaningful information from animals and we actually recently published a paper where you looked at human placental development compared to Mouse Poisson development on the gene by gene level and found wide divergences of what we call master regulatory genes even very early in development another organ that's really particularly different in human is brain development and then physiology and control of labor also is very divergent between humans and other animals so the two Biggie's in terms of pregnancy complications that affect the health of the baby and the mom are preeclampsia and preterm labor and they're pretty much human specific all right so now not all hope is lost because we actually have made some amazing advances not just our labs of course but in the wider community that have allowed us to look at small samples so here I'm just showing some images from Heidi cook Anderson's lab she's actually on the other side of our lab and we also work with her very closely these are just beautiful images of human embryos that are stained with some of these early master regulatory genes and you can see if you sort of imagine back to those bright field pictures of the blastocyst it looks like a little soccer ball with a little area at the side which is what's going to become the baby but you can see that different cells Express different genes it's it's not there each cell actually has its own little signature that's very specific so we can look at proteins so these are staining proteins these are micro RNAs Mon and I have a great interest in micro RNA research and we have found recently some micro rna's that are very specific to very early placenta and we've successfully gotten a pretty tricky method to work where you can look at individual micro RNA molecules in early placental tissues here and then also a big thing that's happened over all that's been really advancing cancer research as well as research and reproduction is single-cell sequencing so you can take a single cell and you app can ask which genes are active and inactive in that single cell and this is one way we look at this data if you look if you think about this as being like a graph the genes kind of go along this way so gene one gene to gene three etc and there's about a thousand genes here and then each little area here is a different cell so here this is actually data that we not and I generated together on an early human placenta and you can see there are different types of cells that basically have a different footprint okay so these are helping us discover new types of cells and also cells and how they relate to each other all right so so we have all these amazing things we can do but we can't really manipulate human embryos in an experimental way with any degree of precision obviously we have a lot of generous women who have donated their discarded embryos after they've completed their families but there's not much we can really do with them partly because of the limitation in time that we'll discuss further and hope to get your input on but also just because if we want to change the expression of genes you have to go through experimental procedures that take weeks to months and we don't have that timeline so what have people done so historically people have taken cells from the human embryo and grown them in a dish as cell line so if you've heard of human embryonic stem cells for example they come from the little nub of cells that that would otherwise become the baby and you can grow them for years and years in the dish those are human embryonic stem cells trophoblast stem cells are the cells that are kind of from the outside of that that soccer ball up until early this year it had not been possible to culture human trophoblast stem cells in the dish just hadn't happened there have been mouse ones for about ten years but there were some breakthroughs most notably from a lab in Japan and now everybody is very excited because now we have a better model in the dish to look at early placental development there are some other types of stem cells parthenogenetic stem cells are ones that come from embryos that were not fertilized you can actually trick an Bo site an egg to think that it's fertilized actually and it develops them it becomes that blastocyst like structure you can make stem cells using the same procedures human embryonic stem cells but we know from animal studies they would never develop into a viable viable fetus but they do have lots of properties similar to embryonic stem cells and are useful potentially for specific uses and then induced pluripotent stem cells these were first generated in about 2007 so it's been about 10 years now first in Mouse and a year later in human these are where you can take a somatic cell or cell from other places in the body the blood the skin and you can convince it to reprogram itself to look very similar to an embryonic stem cell and you do this by turning on specific genes very highly for a short period of time so when these were first identified there's a lot of excitement because then you can make essentially a pluripotent stem cell like an embryonic stem cell without using an embryo we and others have found since then that there are some differences important differences in both on the genetic level and epigenetic level with induced pluripotent stem cells but they are a useful tool alright so I'll talk about one other type of stem cell that may be of interest and that's called a cell that comes from somatic cell nuclear transfer and this is the basic technology behind the three parent baby it's basically where you can take an O a site that is not fertilized you can take out its own genetic material so you just basically have a very cool incubation container essentially you can take the nucleus from a skin cell for example I have here and you replace them the DNA that you took out with this nucleus and then you kind of poked it and then it actually starts developing into a blastocyst and you can then make essentially embryonic stem cells from another person here and that's called a somatic cell nuclear transfer stem cell and this comes from work that we did with chakra patella puffs in Oregon who made the first human somatic cell nuclear transfer ESL's we were the genomics collaborators and we found with Shukra that somatic cell nuclear transfer stem cells are more similar to the true embryonic stem cells than those induced pluripotent stem cells are so these are in essence a better model so those are all things you can do and you can generate in a dish cell lines that you can look at they're generally grown in what we call 2d culture on a flat dish there are some studies where we make them into what are called organoids little balls of cells that behave more like tissues but up until very recently we were not able to actually regenerate something that looks like an early embryo there were two papers that came out late last year one from Britain one from New York where they generated self-organizing early embryos they would take stem cells this is in Mouse mostly they would take truffle blast stem cells or similar cells like that in embryonic stem cells sort of just mash them together in a dish and then they would start through organizing themselves into something that looked like a blastocyst so there was a lot of interest in that however they didn't quite they didn't get very far and we think that it's because they don't have the right spatial cues they're not set up exactly in the right relationship to each other so mana and I and Heidi started working with one of the bioengineers at UC San Diego this is our first kind of attempts at just putting cells into the right relationship I'm just showing that week and make a spherical structure that kind of looks like a Blastoise you might say where is the little nubbin that has that pluripotent stem cells while we haven't gotten that far yet but we've gotten a little you know we've gotten partly there so yeah so what at least for us you know what is our next goal as a group and I think the field in general is moving in this direction as well so could we put all of these technologies I've been giving you snippets of together to build essentially a 3d model of the early embryo for research purposes the whole point is not to make a viable individual it is to make an early embryo where you can actually manipulate the cells before you put it together to study for example the function of a certain gene in a certain cell type on the development of that early embryo so what we would use is pluripotent stem cells like embryonic stem cells or induced pluripotent stem cells and placental stem cell like these trophoblast stem cells the ideas we can manipulate them and we can actually explore interactions between the cells by purposely changing their spatial relationships so this is actually where developmental biology initially learned a lot about early cell types if you look back there are studies in frog where they would take a certain cell type from one part of the embryo and move it to the other and learn whether it brought its own developmental potential with it or whether it got reprogrammed by its new environment so that's our idea we could do this in a very early human system and then also of course we could culture these in different conditions because they're not meant to become you know reproductively useful embryos they're completely synthetic we could test the effects of nutrients drugs other sorts of environmental condition conditions on early development and then those cells could also be analyzed using single-cell techniques like I mentioned earlier in the so so just I'd mentioned some of these people mana procced heidi cook Anderson Alan Goren who is a epigenetics expert and delete Ben Yoseph provided the image of the embryo along with Hodari mirror so now I thought I transitioned a little bit into one of the topics I think that that we'll be discussing as a group or small groups which is the 14-day rule so what is the 14-day rule well I think in 1971 I believe might can correct me if I'm wrong on the date this is shortly after IVF became a thing there was a report that was put out called the Warnock report and one very interesting thing about the Warnock report is that it specifically actually so the group of people came together and talked and Mary Warnock wrote the report afterwards to say this is what we discussed and this is what we concluded so one thing she wrote and sort of what came out of the the group discussion was that it in principle was okay to make a human embryo for the express purpose of doing research on it and since then I think people just dropped that idea because we don't do that I'm not aware of any research groups that do that so it's when people do work on an early embryo such as you know some of the things I showed you they're invariably discarded from a family that has done IVF frozen excess embryos completed their family and decided that rather than putting their you know just basically putting their their embryos in the discard bin that they want to donate them for research so that's a very interesting point about the Warnock report that I actually had not really appreciate until I it's very hard to find it actually until I dug it up and read it so but it spends a lot more time on what's called the 14-day rule and basically this has been the sort of the basis for a lot of legal and ethical guidelines as to the limit the time limit for culturing human embryos in the dish for research purposes or actually for any purposes research or clinical purposes and they made four major arguments so we'll go through kind of what the Warnock report talked about and then we can discuss as a group kind of whether that's still relevant today the first is called individuation and what that means is their argument was that if a given embryo could become twins then then basically it wasn't an individual yet and shouldn't have the rights of an individual so one thing that's kind of interesting though is that so twinning can happen at many stages and of course I can't read this very well but basically here's the scale of days so this is again this might look familiar by now you can get to the blastocyst stage and then the embryos can split into two and there's various different types of twins you can get so if you split early then you end up with two babies to bag of waters to placentas this is actually the lowest risk condition for for twins if you split a little later you have two bags of waters two babies but one placenta and that actually a little higher risk is they have to share you know how well kids share and then if you go later they actually have to share a bag of waters and then if you go really late then they're actually conjoined twins so these are very very rare and so you know you can talk about different cut-offs in time but personally one of the issues here is that these become increasingly rare so if this happens and I have to think I think it's one in five or 10,000 pregnancies or something does it really matter you know is it such a low number that this late doesn't really have any significance delay and then where do you draw the line in this timeline so what I'm showing you here is up to this is greater than 13 days is where you get conjoined twins okay so the neck part of the argument for the 14-day rule was organogenesis so when do important organs form and the argument was that neural cells started forming at around 14 days or so now you know it I think it's a little bit difficult and we could parse this through like really in a lot of detail but as we were more and more appreciating neural development starts very early and so do you call a neural progenitor cell a neural cell or does it have to have the signatures of a neuron before it's called that or do you have to wait till their neural neurons and glia so the more we learn about developmental biology becomes a little fuzzier I thought it might be useful for people to kind of see what embryos at different stages kind of look like so we already talked about this up to seven days so this is the blastocyst and I think it's about day six or so the next one here this is early implantation and so you start seeing the the the sort of embryonic disc is over here the amniotic sac is is over here is just starting to form then and so this is primitive streak because what we usually call this the next steps are gastrulation so you start forming the neural tube here and then week four here you start seeing kind of the form of the of the embryo start developing however there are a lot of things that and I have not really happened by now so if we look so in my sort of specialty we look by ultrasound and at week four we often don't see much we kind of kid around with with patients that we're showing them oh here's your baby sometimes we can see a little flutter of a heartbeat looks like a kidney bean if you looked really carefully it would look a little bit scary like the face doesn't really look like a face the intestine actually has gone out of the abdomen because it has to do this really fancy dance to get organized and has to twist and go back in and it's not back in yet so if you looked really carefully you'd see and test it out so so it's still pretty early development there is dramatic change though as you can see in the first four weeks in case people you know have had kid Ozzie somebody's had a kid this is actually called six weeks in pregnancy because we start our count at the last menstrual period which is two weeks before conception so this is actually six weeks of pregnancy is what the baby looks like okay the next argument was on the miscarriage rate and the argument was that the miscarriage rate was dramatically lower from 14 days on now they'd actually didn't have much data so I pulled this data from I think 1989 so 15 years or so after the report and it turns out in terms of success of a pregnancy the likelihood of success that here's 14 days on the curve so there is nothing magical about 14 days in terms of risk of miscarriage and then finally the fourth argument for 14 days is this phrase which I think would be super interesting to discuss because I don't really understand it it says that that at 14 days essentially the process of implantation is complete and so before then the embryo has no potential for further development right so that can be actually interpreted in many different ways and one sort of interesting sort of soil to that question is the question of what is viability and prenatal development and that is a very hard question why every time sort of I'm in the hospital taking care of pregnant women we have to think about this because what we consider viability is when can this baby successfully live outside of mom and that dictates a lot of how aggressive we're going to be and what we're going to offer the moms in terms of potentially life-saving procedures for the baby right but that line has has steadily marched earlier and earlier in development so it used to be if you think about JFK he had a child when he was a president and that child did not make it because of prematurity that child was about 32 weeks when that baby was born we actually don't worry about 32 weekers anymore they do super well in general they have a very high survival and a very high what we call intact survival which in sort of rough terms is when they get to kindergarten you can't tell them apart from their peers so that was what early 1960s right then the next sort of watershed was 28 weeks then it became 24 weeks and now we have really hard conversations with parents about 22 and 23 weeks because some of those babies survived and remembering pregnancies 40 weeks long of which the first two are free right because that's before you get conceived so at 22 23 weeks not many but some babies survive most of those have severe handicaps but not all of them so how do you counsel people about those limits so we're learning more and more that there are not hard and fast rules and also that one we are not perfect at dating a pregnancy like if we tell you you're 22 weeks unless we did IVF we can't be sure of the date of conception and also every individual develops at a slightly different rate so some 23 workers do great and other ones really have a hard time because of immaturity so I think the same question applies potentially to these decisions about what is ethical early on the other consideration is that as technology gets better this is not an area that I know a whole lot about because none of us kind of focus on it but there is the potential that we could build a good enough incubation environment that even for Reproductive purposes it's not completely crazy anymore are to imagine that you could develop a baby much longer in the dish for Reproductive purposes and so it begs the question is it okay for reproduction it's okay for research and again we start running into these these fuzzy areas so I think that's all I have in terms of slides but hopefully we'll have a good discussion about these issues so I'm gonna ask one person from each group to come up and summarize a couple of the key points that came out of your discussion relevant to either to any of the questions asked we don't have time for every group to cover everything but we'd like to hear what came out of your group and will will interact and respond to that and hopefully get through all of the groups and have a chance to talk to on a variety of issues so one group has volunteered to be the first group I can see so okay which group are you from which the middle okay so section C group – all right so you are first C – thanks I'll start because we came to no conclusion we had a great animated discussion and we talked about that there were the factors were both scientific relevance financial relevance emotional relevance in terms of some of it was semantics the criteria just was skirting around terms like potential life you know and I was mean and baited them with spilling your seed could be considered potential life you know so that's an issue that has no real beginning and end definitely the term human was significant because this is not an issue that is discussed as strongly with other animals seems to be a very human and one of our members talked about well our own decision and so we talked about well who owns these because you were very careful to delineate that the embryos were donated and that's true but that's not necessarily going to be true in the future or true and other political arenas and the criteria of what are we going to do for the better good you notice I'm not giving answers I'm just delineating these factors that we discussed the greater good for scientists might be that well we're going to cure a disease or condition whereas for someone with political or financial means might be the greater good would be that's my baby or that's my clone in the sense that you were talking about I I mentioned that you didn't use the word clone which is an emotional late and term but in one of your examples there we were introducing the somatic DNA we basically talking about a clone so this is a discussion that we did not come yet to the answer because Michael you didn't give us enough time obviously ten minutes later we would have had the answer it's it's a moot in some ways it's a little bit of a moot question now because we can't culture these embryos far enough along we still have to put them in an incubator called a womb we don't even have an artificial incubator that'll last long enough but as you said in the very end of your speech we've now been able to sustain premature babies much earlier than in the past so I can see scientifically someday after I'm gone we're gonna have the ability to scientifically culture and sustain an embryo all through 40 some-odd weeks or whatever in the laboratory and that's gonna be really important too for this discussion so okay so thanks and I thank you for the warning next time we'll give you twenty minutes so we can get the answers but I did just ask for factors to be considered which did a very nice job oh and I thought maybe this be a good point to me hand it to John Evans you might want to respond about factors we should be considering well let me just talk about in general your conclusion which is you didn't reach a conclusion and I want to point out that there is a reason why these debates are fraud in society which is both the extremes of the continuum and the middle all represent important values that many people hold dear so you could take one end of the continuum which is that no one should destroy any embryo at any time no matter what and that essentially takes a certain different perspective than it's commonly held typically there's a religious version of the secular version of the religious version of something like each embryo the moment of fertilization was you know insolvent from God that's a perspective but the argument that the people who argue for that they argue against the perspective of the Warnock report which is that humans are those that have certain capacities most notably a brain which has the ability to do all these things we think of as human and the concern is if we think of humans as having differential value by the capacities that they have we don't like that either yet we want to have health and we want to have science and we want to so the the reason that you're not come for the answer is that there is no one obvious answer and most societies have come up with a compromise and indeed the 14-day rule if you haven't noticed from what Louise was saying there's no bright shiny obvious 14 could be 13 could be 15 could be 20 these are compromises and different societies come up with them in different ways so it's not surprising you come to a definitive answer so compromise means everybody loses yes okay just to be clear please do you want to comment on the first groups perspectives on factors David I actually had a question about for your group in terms of what you discussed in terms of financial considerations like what those specifically might be and whether they had any differential importance compared to the other factors that you discussed these are all some really good points but I do want to get on to the other and see if they're groups as well and on our way to the next group coming to the microphone John I think will admit that he's not a card-carrying philosopher but he's told me he caucuses with flock philosophers so do you want to talk a little about his versus hot in the discussion we just had and I'm actually a sociologist and so I study all these things that I can play any one of the characters you want I'm not a I'm not an evangelical theologian but I can play one on TV I brought different hats I just want to talk about slightly different really what you said about these laws for example that's just one of the many compromises that society is made to make it's a common one actually we do all the time which is there's a certain percentage of the population that believes that you shouldn't destroy embryos and so one of the compromises has been that they won't pay for it the Hyde Amendment about abortion in the early 1980s the same deal which is the federal government doesn't pay for abortion either but it's legal and so you know I'm not endorsing one view of the other I'm just saying that this sort of compromised in that is a very common way these sorts of things are work society thanks we'll come back to is versus thought later which group are you from I'm from the group that's right up front so you're a one okay all right all right I first of all I will say that our group came to no conclusions either I think that certainly not in the time allotted and probably not in days and days could we come to conclusions however you know the thing that we focused on I think with both of the questions was that difference between reproduction and research and one of the factors for consideration of reproduction is perhaps that couple who is desperately trying to achieve having a child that if culturing an embryo for a longer period of time would lead to a more successful pregnancy that you know would that be ethically justified you know and what that time would be you know we didn't come to any conclusion about that but could it be longer than say the 14-day rule and you know and then for research purposes perhaps you know the times would be different and again no no specific conclusions and like this group when we talked about the genetic modifications looking at the clinical implications of reproduction and the outcome you know then the the genetic modifications for health outcomes we were I think more in agreement about you know not for having the designer baby that has just a certain you know eye color or hair color or something like that but the issue of costs came up you know who then pays for this you know will there be insurances for covering genetic modification or will this be the wealthy individual who can really afford to have all of the treatments will they be those who can have them and what are the ethical implications of that so those are I think some of the main points we discussed thanks then again I didn't expect any groups to come up with answers the question is what should the factors be so that was a very nice list any comments on yeah I think disparities are actually an important topic and I didn't really appreciate until I actually started working with Delhi and in Hodari that we handle the right to IVF very very differently in different countries so in the US for most states most places including California you have to pay for it out of your own pocket right you don't it's not been deemed that you have a right to have your own biological child whereas in an Israel where Dulli and Hadar practice everybody has a right to three children you can try three times each time so in theory if you're if you're ultimately successful but not super fertile you can have three tries for your first child three tries your second trial child and three tries for your thirst you can have nine cycles of IVF and it's actually very encouraged in Israel it's actually very similar in France my husband's from France it turns out and through family we've learned that in France I don't think they have quite as many times at bat but it has been deemed that everyone no matter what their socioeconomic status has a right to try to have their own biological child so we're going further to genetic modifications and things like that it becomes actually it's going to be more expensive we know that and then bigger disparities may come up in our particular system you'll regret talking about human gene modification because that's the exact specialty I've been writing about for the past 25 years so I'll try to be brief [Laughter] so there's been a lot of talk about human gene editing and whether or not we be able to modify not only our children but if you modify one child you in a very small way modify the human species if you modify enough children you've changed a human species is that a good idea it looks like the most best way you could actually pull that off is to change the spermatogonia low stem cells in a man that produce a sperm and then have people have sex the old-fashioned way and produce a baby footnote that is the believe it or not a catholic Magisterium approved way of human gene editing every other way is totally illicit but that actually might be for those interested in that but one thing that people i think need to realize is that the only purpose for using human gene editing for your children would be to create a designer baby what i mean by that is that if you were a carrier of genetic disease and your spouse knew that they're a carrier of the genetic disease for most of these recessive medallion things you have a 1 in 4 chance of having a child with that disease there are certain very unusual people with whatever reason can't use PGD pre-implantation genetic diagnosis because they only reproduce embryos that have this disease so if you both have sickle-cell anemia you're going to produce embryos that have sickle-cell anemia okay so you can use it to treat such people but what you're really treating is not disease you're treating the desire of that couple to have genetically related children okay the people could just as easily take embryo from someone else and just state that have the experience of pregnancy and have a family so what you're treating there is the desire of people that genetically related children which is a value that many people find important but I think it's important to keep that morally distinct you could use it to make your children healthier if you knew of some unusual gene variant that protected you against disease and the like but that's what most people mean by designer so I think the idea of using – you know avoid genetic diseases you know sickle-cell and all these well known diseases it is so much easier to do it with pre-implantation genetic diagnosis there's no need with the exception of these very few people who cannot produce healthy embryos that way and then what we are treating is the desire for genetically related children not the disease that the children would have good so there's a lot more definitely going to that but we could to hear from other groups does group you guys are section BB one two or three anybody want to volunteer – it's so B – one of the things that we had talked about was having somewhat different considerations of research versus embryos intended for reproduction and so for example for research purposes making sure you know the focus is maybe more on humane treatment of those of that embryo so you know at what point is there you know the ability to feel pain and things like that making sure that you you don't get to that point though you know part of the struggle is always knowing what exactly is that point some of it has to be based on the science that we know now you may be using as a as an indication what we consider for abortion the time limits there to be okay is an example of something you could consider but from the reproductive standpoint those guidelines being more focused on the the person that comes out of that at the end making sure that they you know have the same advantages as as embryo that doesn't go through those processes so I think we talked about you know at what point in culture does the the spatial configuration start to have an effect there you know different developmental factors things like that that you can't have in there have an effect that would be different from someone you didn't go through that so and we also had talked about kind of the the same thing that she was saying about you know the parents whether or not they have a say on some of those things like I think was it you that was saying you know maybe they want to be able to let it go out further to you know see if they can make that baby happen or whatever some things like that but also there's repercussions there as far as how much do these parents really know you know how much power do we really give them because they don't you know know enough about a lot of those factors Thanks so any thoughts especially on the this general distinction reproduction versus research and making those choices yeah you brought a lot of really interesting points so one of the points that I thought this interesting is how much research should one do before one launches something into clinical practice so IVF came about long enough ago so we were talk about timeline so Mike looked it up so we're 70s early 70s for IVF and actually Warnock report was 81 but we are still learning things about the effect of IVF on the health of the child so there are now some early results of the word of some funded studies about five ten years ago some of them are coming out about epigenetic differences between babies from IVF and not IVF this came about partly because we observed in the in the clinical setting that more IVF babies have beckwith Wiedemann which is an epigenetic disease we also know and we don't understand the mechanism really at all yet that there's a higher rate of preterm birth and preeclampsia and IVF pregnancies so we know that there's something that's not entirely benign but the research had not been done up until now in terms of you know what the effect was in the embryo so same thing if we're talking about genetic manipulation you might have heard a lot of the considerations do you have what's called off-target effects right so you fix the gene you want to fix but in that process you've changed something else about the genome somewhere else and unless you actually kind of do the process and then test embryos at which point they're not viable anymore you won't know what that effect is like how bad that off-target effect is you might want to know that before you start actually trying to treat a baby let's say you agree that people have a right to a genetically related child and you want to fix you know at least one allele of the sickle cell gene but you don't want to do that if you're going to induce some other change that's going to cause them to have a worse health consequences right so you know there's all these sort of linked considerations in reproduction versus research now so very good point if you haven't worked out in the research first where some of those risks might be you won't find out perhaps for years as we're finding out for IVF some things that perhaps if people had known at the beginning they would not have been so quick to adopt IVF it's hard to tell grupe one Jeff we had a real difficulty with this start with that I think probably everybody has one of the questions that came up is what is the advantage of cutting for a longer time in terms of what we can learn and what we do with what we've learned because it's whether the risk of eventually going beyond what you can reinsert back into normal so one of the considerations is many of us believe that implantation is something that is if so if you looked at that little graph of the rate of miscarriage it does go down with gestation like if you successfully get to a certain point you're most likely going to make it but early on one of these things is is implantation failure right and so if we don't understand how normal implantation works we can't really help women who have repeated implantation failure because we don't know what's going wrong with them for example you know or other people who have repeated miscarriages there are some associations with maternal health like people who have hypercoagulable 'ti but we don't really know what's happening kind of right there is it really that there's clotting going on or there something else entirely that's going on so we don't have good ways to really treat those people and help them have more successful pregnancies so it's not necessarily that we do want to culture a baby from beginning to end but if we don't understand kind of where these pitfalls are in development we can't really do anything rationally to help people overcome them so I guess the answer is that the questions you have their further out would require culturing further out in order to find out what the mechanisms might be so yeah imagine you know why not the 20-day rule or the 21-day rule and I just want to point out for everyone when they think about this debate on the way home then many of these debates the life sciences they're almost all set up on what's called a slippery slope here essentially right which is there's the most meritorious action everyone agrees with is fabulous and at the bottom is dystopian you know it used to be brave new world now it's Gattaca agricultural reference changes but you get the idea Hunger Games I don't even know if that is so with things like human genetic modification there is a beautiful wall on the slippery slope which has an incredibly sharp distinct moral distinction which is changing the genes and a person who currently exists that will not be transferred on to any offspring versus someone's children it's nice and crisp people can think through it it's like a wall some debates have no walls they won't lady Warnock in England tried to create a wall at 14 days and it's a pretty weak wall because the moral justification for it is you know like a primitive streak you know et cetera et cetera these are not huge moral distinctions and so the question is 14 day why not 15 day why not 16 day why not 20 days there's no obvious place to stop here and so I think one of the reasons why the people in the room are coming up with the sort of definitive answer is there are not crisp mark I mean though the one of the few ones left is not up for debate which is you know burse okay well so that's you know clear but you know short of that you know there the this debate is lacking those we induce babies all the time so we only have actually a few minutes left and unless my count is correct we have five groups left so to any of the five groups that haven't spoken yet have perhaps a Martin a clear black and white line that we should hear about or well no that's okay or or something to add that we haven't already heard so this group c3 I think so we don't have a line but I thought it was kind of an important thing to consider before the discussion gets too heated that I think was an interesting thing that we kind of talked about was what brought us to this discussion and I think it's always an interesting consideration to think about what values do people hold what preconceptions do they have what what relation do they have this field so in our group we have a high school student a Navy OBGYN a retired nurse and a Spanish biologist as well as like some random assorted other people but so those are like some interesting lines to consider and I think it's important for all of us to consider what brought us here what do we bring to the conversation that might make our perception of this issue a little bit different but additionally we also talked mostly about reproduction and that there are kind of some interesting things to consider like should it be we be encouraging IVF over adoption for example because there are so many kids that are not adopted and are living in very difficult situations age for in vitro fertilization whether you for thought about this situation and then also like at what point do we cut parents out of the equation we talked a little bit about the lambs that they're bringing fully to term in a lab so at what point do we do that with humans should we do that with human yeah and then most of other other things I noticed were just things everyone else was saying good so there were a few other points we hadn't yet raised so in the last few seconds that's the Boca Natsuki process I'm the brave new world born in the bottles but I'll stop so cultural reference anything else yeah I mean people are willing to do a lot of different things to have their own children I think we have to acknowledge that that is sort of an innate drive to do and both and there's the issue of carrying a child and there's the genetic issue they're both very important to many people and just to leave you with a point that's not sort of related exactly to the technology side about today but there are now several babies have been born to women who have had transplanted uterus which are not trivial things to accomplish and they have to be they have to be immunosuppressed and you know some of the considerations is that some of these women will be immunosuppressed until they have a child and then they may have those uterus is taken out because they don't be repressed for the rest of their life so they're having that very significant surgery and the actual pregnancies are no joke either they are high-risk and things like that so they're undergoing this very major procedure that is very costly to have to carry their own to carry a child whether it's their own genetically or not so you know we have to acknowledge that this is a very strong human Drive it needs to be acknowledged and respected good so I usually try and summarize at the end there's a lot of points here but I'm going to hit two points I think might be helpful and I hope would help inform discussions you'll have after you leave here this evening one I think is extraordinarily important that I mentioned earlier is is versus hot or is are things the way things are versus the way things should be we're trying tonight from an ethics perspective to answer the question what should we do or to figure out how we should answer that question and clearly we did not answer the question what should but that leaves us with a question this is the second part of though who should decide that and the questions that were raised tonight most of them are things where you can find a large number of people on either side of the issue so is the ultimate answer it going to be compromises as described before that means that in a way nobody actually gets what they want but everybody loses something but you can look at us everybody gains something or is there some other mechanism whether it's some other way forward but if anybody thinks these questions are easy and everybody should just think it's your way I hope tonight helped you see that there's a lot of different perspectives to add to the mix having said that I want to thank our speaker and our panelists Louise Loretta and John Evans I certainly want to thank the audience you were really engaged and some really thoughtful comments much appreciated hope you'll join us here again and at the very least talk about these issues with others as well so thank you you

4 thoughts on “Ethical Boundaries of Research with Human Embryos – Exploring Ethics

  1. I'm not understanding what the issue is. If it's ok to suck out a fetus with a vacuum and discard it, why couldn't you use it for science? I mean either it's trash or a person, people need to make up their mind and be consistent about it.

  2. I would Question the word ethical . Because any thing that Would Keep us alive longer Can hardly be unethical .
    We must evolve.Or Die !To many Obstacles .

  3. & yet we all stay silent on Fibroblast grown off Harvested Live Infant Genital Skin. I want my $100-300K plus interest for the profits stolen off my infant body. The Tissue Act is Corrupted.

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