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Genetics, Parents and Children: How Novel Technologies Challenge Ideas about Parental Responsibility


This first seminar is a series
of three different events on assisted human reproduction,
as many of you may know. We do have an evening
debate at 7 p.m., so for, particularly for those who are
sitting at home, in the back, at 7 p.m. there will be a lot of space because the event will be
in the Moot Court room. And the Moot Court room
is also pretty accessible. Tomorrow during the day, we
have a full day conference for which you do have to register. You can still register online, so I would warmly encourage you if you’re interested in issues around gene editing. So our two speakers here
will be presenting tomorrow at the conference as well. There will be a section
on commercialization, there will be a section on anonymity, and assisted human reproduction,
anonymity of donors. There will be sections on funding
for in vitro fertilization and issue, simply, also, an update on the administrative initiatives
where the representatives from Health Canada will be speaking about the new draft regulations
that have been issued a couple of days ago, so that’s
all tomorrow during the day. But today, for the Health
Law seminar, we’re very happy to have Josephine
Johnston and Chris Kaposy, to focus on the issue of gene editing in a more lengthy discussion, focusing on the issue of
parental responsibility. So I’ll briefly introduce
the two speakers. Josephine Johnston will
then give the presentation. Chris Kaposy will then
provide a commentary. And after that we’ll
open it up for questions with, as those who attend regularly know, the priority with some
questions from the students who take this seminar as a course. So very brief, Josephine
Johnston is Director of Research and Research Scholar at
the The Hastings Center, which many of you may know
is an independent research institute in Garrison, New York, which is the leading center on bioethics. She works on the ethics
of emerging biotechnology, particularly in human reproduction, psychiatry, and genetics. Her scholarly work has
appeared in leading medical, science, policy, law,
and bioethics journals. She’s co-editor of a book
that is directly on topic, “Human Flourishing in
an Age of Gene Editing”, which is forthcoming with
Oxford University Press in 2019. And also, “Trust and Integrity
in Biomedical Research: “The Case of Financial Conflicts Interest” with John Hopkins University Press. She’s written extensively
for the media, New Republic, Stat News, Time, Washington Post, and The Scientist, and
frequently interviewed on these issues in the media as well. And she is on Twitter,
and I also noticed she exemplarily brings her own food container, which I often think is something we should start introducing here. Chris Kaposy is an associate
professor of bioethics in Faculty of Medicine
at Memorial University. He has an interest in the ethics of disability and reproduction. And he is the author of a book that was featured in an op-ed piece also in the New York Times, that
some of you may have seen, which I sent around. “Choosing Down Syndrome: Ethics “and New Prenatal Testing
Technologies”, MIT Press, 2018. Chris teaches in the Masters
of Health Ethics program, he’s also a clinical ethicist with the Provincial Health Ethics Network of Newfoundland and Labrador. So without further ado, Josephine. Hello people, I’m gonna stand up because people are far away, which is amazingly nice for me. So, first thing’s first,
as you maybe can tell, I’m not from here. I’m not even from Western Ontario. I am actually from New Zealand. So this a picture of my, where I grew up, on the Otago Peninsula,
near the city of Dunedin, in New Zealand, Taiaroa. But I find myself in, here, I find myself for the last almost 20 years,
working in North America. So mainly in the United States, and mainly at The Hastings Center, which is in this beautiful
location, in Garrison, New York. We actually did have a snowfall recently. This is a middle of winter picture. Which is a very beautiful location, just about an hour north of New York City. I actually first work in the United States in Minneapolis, Minnesota and I worked for a year and a half in Halifax. So I always have to say North
America ’cause I’ve worked for a year and a half
in Canada, 15 years ago. The Hastings Center is
a kind of unusual place, so I’m just gonna quickly
tell you what it is. It’s an independent research institute, that was founded in 1969,
so that is 50 years ago. When a bunch of things
that might sound familiar were kind of coming up, like first sets of organ transplantations, issues about the definition of death, psychosurgery, a bunch of issues about reproductive effects,
which we still haven’t solved. And it’s located in
this big, old building. And we do research, so we
have researchers primarily. We don’t really teach, oh well some people teach on the
side, in two big areas. Just and Compassionate Healthcare and Wise Use of Emerging Technologies. And we’re interested in
ethical issues, policy issues, some legal issues, and questions of social
norms and practice. We do a whole lot of different projects funded by different other people on lots of different topics, so if you’re interested in
this whole area of bioethics like this, it’s a good
place to go, check it out. Here’s one we have, oh sorry, on creating systems of
safety for immigrant health, because as you may know
in the United States, immigrants, so-called illegal aliens, don’t get healthcare rights mainly, or are served in merely indirect ways. And right now there are
serious questions about how to deal with immigrants who are in detention facilities remain healthy. So that’s an ever-present issue. And, you know, a wholly
different kind of thing about public deliberation on the release of genetically modified
organisms in the wild. So just to says it spans a
huge range of different issues. (Josephine mumbles) We also publish two journals. The first one here is The
Hastings Center Report, which is a pretty broad journal, and it does have issues in
it that are legal issues and it’s a law column,
so if you’re law people, there’s stuff in there for you, but it’s also looking more
broadly at ethics and policy. And we also have those
special reports inside of it that are formatted, so on a big issue, and this is one that we just published on the ethics of sequencing newborns, so the use of sequencing
technology on newborn babies. And so it’s a big topic, and there’s a, it’s a long treatment of those questions. Here’s another one on what makes
a good life and end of life So looking beyond, looking at all different issues around the end of life. And then we have this journal, which was then called IRB:
Ethics of Human Research and is being relaunched in January as Ethics and Human
Research and it’s about any issue related to
human subject research. And we also have a blog. So we look at a bunch of different things. One of the things that we
have a project on right now is this one here, which is about, I forgot the code for it, I’m sorry, which is on human
flourishing and gene editing. And as Trudo said that’s where this book, which is going to have a
way better cover than that. “Human Flourishing in
an Age of Gene Editing” will be coming out next year. And so the work that I’m gonna talk about is one, is a chapter I wrote for the book that I’m co-editing, on this. So under this broad umbrella
of what human flourishing has to do with technologies
like gene editing. And the reason we framed in
terms of human flourishing is that there’s a lot of
facility in our culture, and in our society, and in legal system to deal with questions of safety and efficacy with new technologies. So there are mechanisms to
assess safety and efficacy. How well does this thing work? How safe is it? There are many interesting ways in which those mechanisms function
or don’t function properly. But there’s a very, very
sort of fluent language and concepts for thinking
about safety and efficacy. This book is base, is
addressing this question of whether or not we have or it’s based on the premise that we
don’t have that same kind of fluency for thinking about things outside of safety and efficacy,
that address human wellbeing or human flourishing, so that’s why we wanted to focus in that area. So if I said to you, look gene
editing is safe and effective like it’s really good, it’s fine do you still have any qualms and what language do you even
have to address those. So some of the ways people
address that is like they say well I feel like I’m playing God, or it feels like it’s
unnatural, against nature. And so we talked out some
of those kind of concerns and asked ourselves whether
there were other ways of talking about, where there’s
a secular, modern language for talking about those kind of concerns that don’t usually have a lot of purchase in policy and practice
that are often felt deeply by ordinary people when
you stop them on the street and ask them about these
kinds of technologies. So that’s what book’s premise is. It’s focused on gene editing. These are the two of
the inventors of gene, the new gene editing tool, CRISPR/Cas9. Who’s not heard of that? I feel like it’s gotten
so much press, yeah. Okay, so this is Jennifer
Doudna on the right and Feng Zhang on the left. There are a total of four people who are really credited
with discovering CRISPR/Cas9 and its potential use, in mammalian cells. And this a, kind of a dream,
in a way, of genetics. Some genetic research has been, not just to be able to understand the genetic basis of differences between humans and coding disease not just to be able to see it or sequence it, see the letters but to actually be able to go in and make changes. And CRISPR/Cas9 is not
the first technology to make changes to genes but it is the one that has
been receiving a huge amount of attention right now
because it is in many ways more effective and much, much easier to use than anything that preceded it. I don’t wanna give you a really fat description of how it works. There are better people to do that. There are videos online explaining how CRISPR/Cas9 works and
how gene editing happens but the basic thing here, is that you get the ability to cut DNA, which means you can delete some DNA, or you can replace it with new DNA. So you obtain the ability to edit as the right (mumbles) for it. And the interesting thing and
I think really powerful thing that this is, is thought you
can make multiple changes at multiple sites, which
was not really possible with the previous technologies and you can do it with any kind of cell. So it really is able to
be used across cells. This was a mechanism
that existed in bacteria and how bacteria can protect themselves from viruses by doing this, but it turns out you can actually use it in any kind of cell. So human cells, or animals, non-human animals or even bacteria. What I’m interested in
is the use in humans. There are a whole bunch of people including colleagues
of mine who are looking at non-human animals including
things like mosquitoes. So in humans the use is a huge one. So you could use them to make changes to germ cells, sperm and eggs. You could use them to make changes to embryos, fetuses,
babies, children or adults. So massive potential uses. Sometimes those uses are
discussed as being germline uses. So uses that would actually
make the change that was in all the cells or in all the germ cells, and therefore, be heritable, be passed on. And then many changes
that could have happened in born humans would not be heritable, they would be somatic changes, they would change in that person but not necessarily
changes what they pass on. So that’s sometimes a
division that’s made. When CRISPR/Cas9 was first announced, it received gigantic
amounts of press coverage. I asked a colleague, a scientist I know, who uses this in his work with mosquitoes, what is was like when
CRISPR/Cas9 was announced and he said that there was a conference and he was going to a couple months later and they just scrubbed the entire program to talk only about CRISPR/Cas9. And so I said is that because it completely changed how you
think about everything? He was like no, it’s
the same way of thinking it’s just a way better way of doing it, so we all get to just learn how to do it. So it was not a paradigm
shift in terms of that idea, like the idea being the same,
you can make changes to genes, but a massive change
in terms of efficiency and ease with respect to
(crackling drowns out speech) So in the scientific community, and public facing science journals, but in the scientific community, it was like wow this is huge. This is gonna be able to be
used across different platforms and there was a little
bit of something there that would make a lot of
things better, right? (mumbles) But there was also of course, immediately also, people thinking about potential uses in humans and especially reproductive uses. And these are much more also fearful, and concern images that
come at the thought of using this kind of
things to make changes to children, or to future persons. And even to the point where
people were asking already way before it’s actually being used, it’s actually been used in human embryos a few times now, in China and in the US, but some are, in advance
of this, wondering “Will Editing Your Baby’s
Genes Be Mandatory?”. So if it’s possible to do, will you have a really
strong obligation to do it. And that’s a big part of what motivates what I’m going to speak about today. So I’ve kind of gotten
now up to my chapter, and so how many people were given this to read in advance (mumbles). So some people were given it to read, and some people have read it
and asked me their questions. So I’m gonna refer to this chapter, but I’m assuming, might be assuming that not everybody has read it. So what motivated my chapter, the thing I want to talk
about today is this idea. That editing your baby’s genome will be in some sense mandatory. And in order to address that, I’m coming at it in a very particular way. So it gets at this idea
parental obligations and what it might be like to
be the kind of future parent. Some of you maybe in this can agree, who feel as that this
is something have to do, or they could have some sort of enforced obligation
to use the technology. So, let me just see. In particular, what I’m interested in, is not so much the question
of what it might be like for future children or future persons whose genes have been edited, and that’s a really important question, what would it mean to be
someone whose genes were edited by someone else in advance of being born. And a lot of people are
asking that question, but I’m also really interested in the impact on prospective parents of this particular kind of technology. So even though prospective parents, their own genes may not be
involved in this technology, they probably would have to
have their genes sequenced, but they might not, so they are not really the direct subjects
of the technology, I still think there are
really important ways, in which their own experiences, their lives and interest are at stake. And that they affect even
if they’re not the ones on whom the technology is
used can nevertheless be directly impacted and
possibly even changed by the very existence of this kind of technology in
a reproductive space. So, what I wanna say about this stuff is also connected to other technology. So gene editing is not something
that’s currently offered to parents, or prospective parents, but there are other
technologies that are offered, that are very, very related
in ways and raised many of the same questions from
the perspective of parents. So this is a picture of
newborn screening card, as we call it, that probably
every baby in Canada certainly almost every
baby in the United States, has a blood spot taken. And there have been lots of questions now about whether or not we
should sequence those genes, using genome sequencing tech,
sequence those blood spots using genome sequencing technology and really discover far more
about the genetic make-up of the child than these current newborn screening technologies look at. Similarly, this a screenshot from a non-invasive prenatal testing company,
Sequenom, which offers maternit21. That was the first
non-invasive prenatal test to be offered in the United States. It’s a blood test of the
pregnant person that is analyzed and fragments of fetal DNA are found in the blood and analyzed. And that’s a new way of
doing prenatal screening. It’s not just available in Canada, I mean, in America, here is a New Zealand company, “Prenatal Peace”, non-invasive
prenatal screening tests. Canadian, in Canada you
can get a Harmony Test, or the Panorama Test, so I
did some Googling for you to see what your options are for accessing non-invasive prenatal tests. These test, the new kinds
of prenatal screening, there are also carrier test, they’ve all raise this question I think, what are the obligations
of prospective parents to use or not use these technologies. Most of these technologies, and I’ll say something about
gene editing in a second, but these prenatal testing technologies, carrier screening technologies,
newborn sequencing, they’re all optional,
right, you can say no. So if it’s really up to parents
to decide whether or not to use these technologies,
I’m interested in knowing more about what will shape
their decision-making. And in particular, I’m
interested in the idea that notions of good parenting, what it means to be a good parent, would drive their decision-making, and I’m kind of curious to know what that really might mean and I’m seeking to sort to
enrich our understanding of what good parents do in the face of these different kinds of technologies. (mumbles) So I’m gonna back up a second here, because in the context of gene editing, I need to say why I think
the prospective parents might actually have the option of altering the genes of their children. Now, any law student who’s looked at this, assisted human reproduction
in Canada, knows that you actually can’t do that
today in Canada, it’s illegal. And it’s not just in
Canada, there are a number of countries around the
world, Brazil, Australia, and many European nations,
that have legal protections on altering the genes of a future person, or other embryo or a fetus,
or even to themselves in a way that will make
a heritable change. There’s not quite the same law in the US so people, I’m from New Zealand, we have a legal system
kind of like you have here. When I first got to the US and I found out how they regulate this kind of stuff it sort of blew my mind. But this is a quintessential example, if you can’t read this, but this is the Dickey-Wicker Amendment. So one of the ways that
the US regulates stuff in this area is by having prohibitions on what you can do with federal money. Which doesn’t say anything about what you can do with non-federal money but there is this standing prohibition against using federal money to do anything that harms or alters a human embryo. So that would, that’s a huge impediment to researchers in the United States developing gene editing technologies, especially germline editing technologies because they can’t use federal money. But some of them have
done it anyway, right? So just like they did embryo
and stem cell research without using federal money,
there is a way around this. But one of the ways that
regulative pacts are more important right
now, is that since 2015, there has been a prohibition
on the FDA considering any clinical application
to use gene editing, to change the genes of a embryo or fetus. So that has far-reaching implications. It’s not just something that impacts people who have federal funding, it’s anybody who wants to go to the FDA for permission
to offer a clinical service of gene editing in the
reproductive sphere. So right now in the US, it’s also not something that you can offer. Totally different right,
they’re not regulated through the criminal law,
right, like yours is. Really different (mumbles) Still, even with all
these barriers in place, we know that determined
and well-resourced parents will work around these
controls and find jurisdictions where this is not prohibited. You even saw that in the
US, where a researcher went to Mexico, in 2016, to do
mitochondrial replacement which is a different kind of technology but is similar, right? One where you change the
mitochondrial DNA of the embryo. So even American physicians
find ways around this, and certainly will other
determined parents find ways around and well-resourced parents find ways around these kinds of prohibitions. Today, you can see that in
assisted reproductive technology and the tourism around of such use. so there will be parents,
(mumbles), but if this is proven to be a safe enough and
effective enough technology, then there will be parents
who are asking themselves, “Is this something I want to do?”, “Is this something I should do?”, and if so “How can I do
it?”, “Where can I go?”. I also think that if it’s
shown to be safe and effective there will be significant
pressure on those prohibitions to relax them at least somewhat. So in the United Kingdom,
in the last few years, they changed their law to accommodate mitochondrial replacement technologies. They had a law prohibiting
germline changes, or genetics changes, I can’t
remember the language exactly, but it certainly caught
mitochondrial replacement technology and prevented the use of that technology and they had a huge debate in Parliament they had debates, they had consultations, by the Human Fertilisation
and Embryology Authority, around the United Kingdom
and they ultimately took the vote in Parliament and changed the law to allow the mitochondrial
replacement technology which is allowing for any kind of germline or heritable gene modifications. Part of the way that that happened was that they had multiple families, women who stood up and told Parliament of the children they’d lost,
the pregnancies they had lost and of the suffering that they’d endured on account of mitochondrial disease, and that proved to be
very, very persuasive to Members of Parliament,
but also the general public. So from the beginning of the
process, to when they took the parliamentary vote,
lots of people changed their position on this issue because of the really compelling stories. And I’m not trying to
suggest that that’s wrong, I’m actually, I think
it was actually a bit of a success story for
public deliberation, but it definitely demonstrates the power of strong stories of suffering
to change this kind of law. So if gene editing is
effective, I do think that many jurisdictions will relax
if not completely do away with the standing prohibitions
on germline modifications. If that happens, I think that
the decision will likely rest with parents and prospective parents. They will be the ones to decide, they will have the authority to decide, whether or not to alter the genes of their prospective children, and if they do, do it, in what ways, which genes, in what
ways, for what things. How will they decide? Well, we’ve had huge
discussions about that question. I think lots of things
will influence people’s decision-making and no two
decisions will be the same. Yet, if you look at
patterns of decision-making about the use of other
genetic technologies in similar context, so these reproductive, prenatal testing, use of
sequencing in newborns, you see that among other considerations, the idea of good parenting, of
what a good parent would do, a sort of virtue question
of “What ought one do?”, “What would be good to do?”, will definitely play a role, I predict. And there’s a bunch of
research that I could draw on, but I’m actually gonna
highlight work completed by James Anderson, who’s
standing up in there. One of them is James. Hi James, that was done here in Toronto. So, in this study which was published, in 2016, in the Journal or Medical Ethics, and James can correct
us in the question time, but I see in this study,
this idea of good parenting, at work in people’s decision-making. So let me just say a
little bit about the study. So this is a study at the
Hospital for SickKids, right here, in which genome sequencing
was offered to parents whose children had been referred to the hospital’s genome clinic for conventional genetic testing. So they’d been referred for some reason, something was going on,
and it seemed like it would be a good idea for them to do a genetic consult and get tested. And they were offered this
much bigger kind of test, than the kind of standard genetic testing where you just look at
particular genes of interest, or things that you think
might be going wrong, genome sequencing, much, much, much casting the net much, much wider. All the parents who agreed to have their children’s genome
sequenced were informed that researchers would return to them any news, news of any variant that’s known to predict a childhood-onset disorder. So if they would have a sort of x problem, if we found this y thing, which is another childhood condition, that would be returned, whether or not they had even
found anything really to use. So on childhood-onset conditions. So then the parents were
given the option of electing to learn whether their
child carried gene variants associated with a number of medically-actionable
adult-onset disorders. And they could also learn whether they, themselves, carried
these same gene variants. So in this study most
of the parents elected to learn these additional results about their children
even if they opted not to learn the same thing about themselves. So just think about that for a second. So adult-onset conditions,
that are medically-actionable, parents opting not learn about themselves, which is a phenomenon
that’s well documented outside of this study,
right, people do not want to know certain things
about their own genes, but they do opt to find
that out about their child. So why? Well researchers who
interviewed the parents to ask them about these decisions, reported that many of the parents expressed actually quite
a bit of ambivalence, about getting this additional information, which they realize might be difficult to deal with in a number of ways. Yet, they agreed to receive
the additional results about their children because of, and this is a quote from the study, “A perceived moral obligation
to learn to the extent “possible, the full range
of current and future risks “for their children, no
matter how unpleasant”. And the researchers called
this an “inflicted ought”. The sense that people inflict
on themselves that they really ought to do this thing that they know is gonna be hard and unpleasant. And it was so powerfully felt
by the parents in this study, that the researchers concluded,
faced with this opportunity this opportunity to receive
this expanded set of results, parents felt they had no choice. So really strong sense in this
study and in other studies, and prenatal testing context,
we see the same thing, a really strong sense that what one ought to do is maximize one’s
use of these technologies and find out as much as possible. Well, of course, you won’t
be surprised the learn that that idea is very much
in concert with companies like 23andMe and what they think about genetic testing, and
genomics, and what they can offer so here’s Anne Wojcicki talking about, who’s one of the founder
and CEO of 23andMe, talking about genetic testing generally, and she says “I tested my
son as soon as he was born, “and I test my daughter’s amniotic fluid”, so she did, I guess, amniocentesis, “Genetic testing is a responsibility “if you are having children”. So very strong language around the idea that you need to use these technologies if you are contemplating reproducing. Hang on, I’ll just get to him in a second. If you look at non-invasive
prenatal tests, the websites for those companies, you’ll also see a lot of language in there that gets at the idea this
is what good parents do, this is mothering or images of sort of idealized mothers and children are in a lot of these websites. A study of this internet advertising for non-invasive prenatal tests was very critical of the language used on the, like there’s so many things one could say about the way
these thing are advertised, but it’s misleading in a bunch of ways. But one of the things that the researchers who looked at this analysis see is that they thought it should be
mandatory for companies to clarify that no
prenatal test can guarantee the health and wellbeing of a baby. So if you think about what these test are, it becomes pretty obvious, pretty quickly, that nothing about the
test is gonna guarantee the health and wellbeing
of your baby, right, it just tells you stuff about their genes. But people felt that, they felt that the websites were so misleading
that people actually think that they have to use this technology because it will actually
help their child’s health. That’s how sort of, that’s
the kind of language and ideas that are
swirling around that area. Well, it turns out that
the person in charge of the National Institutes
of Health and who researches, the biggest funder of biomedical
research in the world, Francis Collins, is also super keen on genomics and the use of
genomics in all sorts of contexts including, he doesn’t talk
about reproduction, right, so I can’t talk about that for reasons that you can probably imagine, but he loves the idea of using
genome sequencing in newborns and if you would sequence your newborn, why wouldn’t you sequence prenatal either, it’s only a matter of
months difference, right? So he says, in 2010, he’s
certain that whole genome sequencing will become a
part of newborn screening, we’ll look back and be like why did we screen for so few things. Still really keen, this is from 2014, he thinks that the availability of cheap, efficient DNA
sequencing technology will lead to a landscape in which every
baby’s genome is sequenced and that information is used,
very optimistically here, to shape a lifetime of
personalized strategies for disease prevention,
detection, and treatment. And there are even people who go further and think we could use it to shape kids’ educational experiences and aspects of their whole life. So this idea, he’s not
gonna say that he’s, he’s probably not gonna
force this on people, he hasn’t said this but I
don’t think he’s in favor of mandatory genome sequencing
of every newborn baby. Not quite the Gattaca scenario. But presumably, he thinks that everyone would choose it right? He’s so convinced of the benefit of it that he thinks that people would choose, parents would choose this. Like I said there’s no
reason apart from politics why he wouldn’t say the same
in the prenatal context. This idea that good parents choose to use genetic technologies
to the maximum extent, I think lies on this, rests on a bunch of dubious notions but one of them is, the one
that I wanna talk about, one that I think is
actually the most obvious, is that such use of the
technology will benefit the child or the future child. And better that all of
these people’s enthusiasm, is the sense that this will
be good for their child. And there’s a clever way to show why prenatal testing
doesn’t benefit the child. There isn’t really anything
you can do, mainly, right now, in terms of
benefiting the fetus, in most cases, but the
case that gene editing could benefit the child
or the future child could actually be very strong. So showing that if we knew something, and we could intervene with
the embryo, or germ cells, or even in utero, that could
benefit the future child by giving, editing genes
associated with disease or disability, or even just things that are socially
desirable and undesirable, genes that affect height,
educational attainment. There are many genes that are
starting to be put together showing association with
educational attainment. Editing those genes on a
particular way of thinking, could indeed be very beneficial
to the child or future child So if the technology works well and I know that’s a bigger thing, we could talk about it, but I don’t think it’s the most interesting thing actually, and if scientists and
companies support the notion that using the technology will
promote the child’s welfare, that’s it’s not consistent
with good parenting, it’s actually constitutive
of good parenting, then you would very quickly,
potentially, reach a point where utilizing the technology
is not simply a choice or even an opportunity for
parents and prospective parents, not merely something
that good parents can do for their children, but
a new responsibility of parenting, something that
good parents ought to do. And what I wanna argue is
doing, creating that situation actually placing really
significant burdens on parents, that are almost never
mentioned in these discussions, and that are really, really, significant and belong in the debate. So where am I? (mumbles) Okay. Potential burdens on parents. In my paper, in the chapter, I go through these in some detail, but I’m not gonna spend very much time on any one of them, except the last. You can ask me about
them with your questions. So, potential burdens
on prospective parents. Who I think are quite invisible, honestly, in this conversation, hugely. Physical, right? So a lot of this would actually
be, right now, done by IVF. That is not insignificant in
terms of the physical burdens on the person who’s producing the eggs and going through the transfer. So, really significant
potentially physical burdens. Time burdens. Time burdens for doing IVF,
time burdens for sitting down with your physician and
talking about the sequencing, about the testing of
embryos, understanding all of the different things that are
being communicated to you, trying to decide what you gonna do. Huge time burdens, not actually
how people reproduce today. Most pregnancies are sort of
unplanned, whatever that means. This isn’t how people reproduce right now and it’s much, much more time consuming. Cognitive burdens. There’s actually some evidence of this like the sort of burnout
that you get when you receive huge amounts of information
about genes and gene variants. So varying levels of
penetrance and uncertainty, like how do even make sense of that. If you look at the choice
literature, in psychology, you see that more choices
often actually are really, really difficult
for people to even process, and I’m not being mean about us, but I think we’ve good
reasons that we don’t deal well with gigantic amounts of really uncertain variables mentioned. Emotionally, very, very
difficult potentially, in the prenatal context. There’s data showing
that when people consider some use of sequencing technology in prenatal testing in
a research context now, in the course of doing this
people receive information often about themselves
or about their partners, and that can be very
disruptive to relationships. It can be taxing and distressing. It can also really useful but
there’s an emotional content to this and it’s really quite arduous. Oh and financial right? Is this gonna be part of
what people feel they have to provide for their children if it’s not provided for by the state. So I live in the US, and
when I first got there, people were like “Oh yeah
we put aside like $60, 000 for our daughter’s
wedding and we put like, aside $150, 000 so our kids
could go to college, each”, and I was like where do
you get the money from? So the idea that, could
be that parents are supposed to come up with the funds, the tens of thousands of dollars that might be necessary to use (mumbles). So big financial issues
really won’t affect, if it comes out of pocket
or obviously also not, or something, that people
can equally access. But the one I wanna talk
about a little bit more, is identity and values. So, some uses of gene editing technology in reproductive context,
I think might conflict with prospective parents’
identities or their values such that using the
technology could require them to act against their values
or their deeply held beliefs. There are a couple of
examples I wanna give of this. One of them is that the
use of the technology could actually conflict with your views and your feelings and your commitments about the nature of disability. So a prospective parent
who sees disability, or at least some disabilities, as thoroughly consistent with flourishing, could be faced with a decision where they’re asked to,
given the opportunity, to, for instance, edit genes associated with deafness, or with some
kind of physical disability, perhaps albinism, something
to do with blindness, and suddenly you’re actually
implicated in acting against what might be your value which is that it shouldn’t matter. And these are significant, I
think, conflicts for people in the course of their life story. Another one might be your understanding of the nature of parenting. What you think parenting is about. For this prospective parent,
perhaps the parenting role privileges acceptance over control, makes them reluctant to use
gene editing technologies because being a parent
who knows this much about and exercises this much control
over their child’s genes conflicts with how they
think about themselves and what they think they’re doing, right. So some people don’t
see you having children as kind of making, or fixing, this person, but actually accepting,
without being surprised about receiving or being the recipient of this kind of this unknown. So gene editing in a
reproductive context would, give us the option that prenatal testing, and pre-implantation genetic diagnosis somewhat give us, but
to much greater extent. This idea that we can actually control aspects of our future child. That we can fix them, if
they’re broken in some way. And this way of thinking
about what parenting is, is really in conflict
with how a lot of people actually think about parenting. So you can look at various
studies of what people think about designer babies and stuff like that. And people will raise these questions about “I don’t know if I
wanna play God” or like, “That doesn’t seem like the right kind of thing for me to be doing.” In one of the studies referenced in the book that we are
gonna be publishing, someone who had focus
groups, I think in the UK, reported that some people said that too much control risks compromising a fundamental feature of parenthood, one that benefits parents as much as it does the future child, and this is this idea of just not being in control of everything. These burdens on parents, all of them, but including this one at the bottom here about your values and your identity, are seldom acknowledged and they might be experienced
by all parents equally, right? Not all prospective parents will be similarly impacted by those. Some of them will be fine about it. If you are kind of person
who fully subscribes to what Chris, in his book, I think, calls sort of a neoliberal
kind of capitalist mentality, about maximizing that sort of productiveness of your future child, this stuff may not at all conflict with your identity and your values. But I want to suggest that it’s not how everybody currently thinks about this. Now, does this potential clash between the best interest
of future children and the flourishing of
prospective parents matter? If you’re the kind of person
who thinks that parents’, a good parent’s sole
obligation is to further the best interest of your
child, then no, right? If what we think good parenting is, is just about the best
interest of children, then why do we even
care about this at all. It doesn’t matter. And that is actually how I often talk about what parenting is about. But if we think, and this
is what I think obviously, that good parents also need
to take their own interests as person into account in these decisions, then yes, the burden
on parents is relevant to understanding what good parenting might mean in an age of gene editing. And I’m gonna just super
fast go through this. But I wanna tell you that it’s not just the CEO of 23andMe,
or the head of the NIH, who thinks that genetics
is an unbridled good and something that should be used. There are people in philosophy and ethics who’ve been arguing for a long time that the best interests of
children require parents to use these technology in ways that sort of make sure that they come right. So this is Ron Green saying
“We should strive to give “our children lives unimpaired
by serious genetic disorders” and that we should reasonable
care not to, to avoid, not to avoid doing so by
inadvertence or neglect, so essentially saying if you don’t do this it’s a kind of neglect, right? You’re a neglect, it’s
an neglectful parent. People will know this
guy, Julian Savulescu. He’s really famous for this
idea of procreative beneficence. The idea that you actually have,
you should select the child who’s gonna have the best possible life, and he has a very specific way of thinking about what the best possible life is. It’s the most success, the most… happiness, a very utilitarian perspective. It’s not just people who are in favor of this kind of selective mentality who use the best interest of children as their sort of grounding idea. But it’s also actually some of the critics of reproductive genetics, also are really grounded in the
best interest of children. So this is not Jurgen Habermas.
This is Adrienne Asch. But Jurgen Habermas who’s
critiqued genetic technologies, has said that he thinks it would damage the child’s relationship to the parent. So again, it’s a child-focused criticism. Adrienne Asch and Michael
Sandel, so here’s Adrienne Asch, who are opposed to excessive
use of genetic technology, if not all uses, think it’s not part of the norms of parenting. It’s not what good parenting is, because good parenting includes fostering and supporting
the, in her words, “the uniqueness of individual children”. Again, still actually about what good parents do acquire children how they are to their children, so essentially, I think, the
best interest of children. So, and here’s Sandel, saying that we should appreciate children as gifts. He’s actually a little more
giving in the direction where I’m headed about how it is for us, but it’s not exclusively focused on parents’ wellbeing or flourishing. I think its gonna be hard
to actually do this work, of helping parents think,
or prospective parents, think about their own interest as persons inside of this context. So to help prospective parents, I think we need to provide
them with real choice, and by real choice it’s my short hand for actually supporting people
to not use technologies, and not just in the moment in
the clinics supporting them, but having social policies in place that make it possible for
them to choose otherwise. Which means routinization and social pressure are real problems. As are, you know this is
Canada, right, so now I’m like you probably got all this all figured out, but I live in the United States, we have significant problems for people who have children with various different kinds of genetic conditions
or genetic differences. I think people are gonna
need help to reflect on their own interest as part
of what parenting involves. And this can happen in
the clinical context, but it can also happen in churches, it can happen in friendship circles, it can happen on Facebook, it can happen in universities, it can happen through the arts, so actually I think the
arts is really good at this. If you look Gattaca or Westworld, or any of these dystopian films, they’re reflecting on some of this stuff, really pretty well. There are many people who
take some of this seriously. And of course I think
you need supportive laws, policies and practices surrounding this, so that people really do have the option of choosing a different way of thinking about what this is all about. Oh look, I put myself, oops, I put myself up here ’cause I was like well if other people’s photos
get in my show, why not me? Both prospective parents
have responsibilities to future children and themselves. I don’t think this
should be controversial, but I actually think it’s
almost a matter of sense. The burdens that gene
editing could place on them, i.e on prospective parents,
are relevant considerations to their decisions about whether and how to use these technologies. It’s not selfish to think
about your own interests and your own life story, and how you are as a
person in this context. It’s actually incumbent on the rest of us to recognize those burdens that come with this technology and to be open to supporting parents who act to protect their own flourishing, in that context. Here I am with my own
little bundle of joy. Thank you very much. (audience applauds) Very good. Chris. Okay. Thank you, Trudo, for the invitation to comment on this excellent paper and thank you Josephine
for the opportunity. I’m gonna be a little bit of a wet blanket and maybe second-guess some of the claims that your making in your argument. But I think that’s in the interest of furthering the discussion. So, Josephine imagines a
future in which gene editing becomes possible as a way of repairing and improving your children’ genes. She makes a very central claim based on a prediction that
editing your child’s genes in the future will become
a norm of good parenting. So not necessarily a legal requirement but strong social pressure
to edit their genes. And she outlines pretty
clearly how and why this would be particularly
burdensome to parents. She outlines physical
burdens, cognitive burdens of understanding genetic
information provided by sequencing. It would be burdensome
financially, and it also might conflict with values. So she draws the conclusion, consequently, that we need to also include
the wellbeing if parents with thinking about what it
means to be a good parent. And with, particularly
with the availability of new reproductive
technology like gene editing. So the central claim
that I wanna focus on, is this prediction that it will, editing your children’s genes would become sort of quasi-mandatory, and become considered to be
a norm of good parenting. I’m gonna propose that maybe the prediction won’t come true. And what really is at stake here is, I think, it matters how
gene editing is delivered. How it’s operationalized in the clinic. If it’s delivered in a way
that’s particularly burdensome then I think those
burdens actually suggest that undergoing gene editing, or having one’s child’s genes edited will not become somehow mandatory. So she does such a good job
of outlining the burdens and this suggests to me,
if it’s so burdensome then there are reasons why gene editing won’t be
considered to be mandatory. And if you look at the
physical burdens alone, I think this suggests this possibility. I was a little edge of my seat
when Josephine was talking, because I was, the comments
that I kinda developed here, were based on her written text, and she kind of didn’t
read the whole thing. And she kinda skipped
over some of the parts that I’m commenting on particularly. But I think, so I’ll kinda
fill in the blanks here. So as I said, it matters how
gene editing is delivered, in figuring out whether this
prediction is gonna come true. In the text she describes how gene editing would become
part of the IVF process. And so my kind of suspicion here is that, if it is part of the IVF process, then it’s unlikely that gene editing would become a mandatory norm of good parenting. And that’s because when you
know about what IVF involves, it’s really detailed
and really burdensome, so there’s egg harvesting,
followed by in-vitro fertilization, so fertilizing the egg in a Petri dish. Then genetic sequencing
of the resulting embryo, this is part of the gene
editing, then editing the genes based on the information
provided by the sequencing. Then implantation of the edited embryos, followed by pregnancy and childbirth. So physically, this involves a lot. So egg harvesting involves multiple hormone injections, with associated side effects. The risk of ovarian
hyperstimulation syndrome, you would take on when
you’re harvesting eggs, and from what I understand,
this is really unpleasant. It can actually kill you. Egg harvesting and embryo
implantation involve multiple transvaginal ultrasounds. I don’t have a vagina but it’s sounds like something I would want to avoid. That’s my only joke sorry. (audience laughs) But with more drugs on top of it all, you have to think of all
the additional appointments to the doctor that would be involved in getting pregnant, just to get pregnant, when for many people getting
pregnant is otherwise easy. And fun. And fun, yes. (laughs) So recognizing all of
these burdens in detail suggests to me that it’s unlikely that a social norm would develop, in which doing all of
this would seem mandatory. And what’s telling to me is, so some of the quotes and the evidence that she cites to suggest
that some people think that this sort of thing
would be mandatory, were actually talking
about different things, other than this kind of IVF process that involves sequencing,
and gene editing, and then reimplantation, and so on. So the SickKids study, James’ study, that she cited is actually all about postnatal genetic testing, comparatively easier,
quote unquote “easier”, certainly less burdensome,
on pregnant individuals. So the other examples, the 23andMe one, the Francis Collins example,
they’re people talking about either prenatal genetic testing or whole genome sequencing of newborns. And when it comes to the noninvasive prenatal testing
discussion, the whole idea that prenatal testing,
the worry that it’s gonna become mandatory has emerged
as a result of the fact that prenatal testing has
become so much easier. So there’s sort of a coincidence
of the easiness of it and the worry that it’s
gonna become mandatory. So all of these things, so
postnatal genetic testing, or postnatal whole genome sequencing, or prenatal genetic testing, they seem a lot different from prenatal sequencing and editing as part of an IVF pregnancy. So postnatal genetic testing,
whole genome sequencing, and prenatal testing, don’t
have the same physical burdens associated with the whole IVF process, that seems to be the process
that she’s saying would be used for gene editing, at least the
way it’s envisioned right now So perhaps a closer
analogy to the process, this IVF process is preimplantation genetic diagnosis, which is already available as part of, sort of a standard part of IVF these days. So with preimplantation genetic diagnosis, you undergo IVF, so that whole process of egg harvesting and then
fertilization outside the body, and then before implantation,
you test the resulting embryos for a suite of genetic conditions, and you stipulate the
ones you wanna avoid, and then you only implant the embryos without these genetic conditions
that you want to avoid. So PGD, preimplantation genetic diagnosis, would actually be these
days a better option than sequencing and
gene editing during IVF for parents who wanna avoid giving birth to a child with a heritable
serious genetic illness. So for instance, of you know you’re a carrier of a serious genetic illness, you want your children to avoid it, there’s already this available to you, you can go through IVF and have PGD and then implant only the
embryos that don’t have, or don’t carry the condition
that you want to avoid. It involves fewer steps and probably less cognitive burden. So for that kind of
scenario, where you know you have a condition, that there’s a risk that you could be passing
it on to your children, PGD is an option that
seems to be a better option than actually editing genes as
a way of avoid that condition So what’s interesting about PGD and IVF, even though it’s a pretty kind
of, similar kind of thing, that Josephine’s talking about, at least gene editing as part of IVF, what’s interesting about PGD
is that there doesn’t seem to be a really large demand
for IVF and PGD right now, except amongst people
with fertility issues, or single people, or gay, lesbian, trans individuals, or couples. And to me since there
isn’t a really high demand for this, outside of those groups, it suggests to me that there
is no norm of good parenting that pushes people to undertake
this kind of gene testing as a part of a really
burdensome process like IVF. So if that’s the case, then maybe there won’t be a similar norm for
the more demanding process of IVF sequencing and then gene editing, if that’s the way gene
editing is delivered. So all that said, if gene editing
is developed in a way that so it’s delivered in an easier fashion, either so you can imagine maybe scenarios where gene editing could
be done, I don’t know how, maybe done in utero, somehow,
postnatally, somehow, I don’t know, then these
would be a lot easier, at least regarding the physical
burdens that are associated with IVF, you’d avoid
all of those burdens. If this sort of method of delivery for gene editing is developed
then the bets are all off. So I mean the critique
that I’m advancing here wouldn’t obtain, it’d be different. So in that case, I could see
editing the genes of one’s children might become viewed
as part of good parenting. And to me that’s personally
a frightening prospect. So developing these comments was a way of kind of reassuring myself that, okay, maybe this won’t happen, that gene editing, maybe, won’t become sort of a mandatory
norm of good parenting. All that said, Josephine’s
presentation is a welcome meditation on what it means to be a good parent now and in the future. Thanks. (audience applauds) Before I open it up for
questions, maybe a quick moment. It makes me think of.. a issue I have been told to me by two parents who were.. wanting to have prenatal genetic testing on an embryo
created by both of them. One with a… late onset genetic disorder which was non-lethal related to the sensory capacities of people. And the other retinoblastoma, which they wanted to avoid. And they were actually told
by the genetic specialist, or by the prenatal testers, that they refuse to test only
for one of the conditions. They said look we’re happy to help you but it has to be the two (mumbles) They didn’t pursue it further but anyway, so these things happen. These are not legally
prescribed situations, but there are situations where there are kind of indeed prenatal pressure to exclude certain conditions that is already present. Anyway, I thought that it is interesting to kind of hear both of your
comments on that connection. I will open it up for
questions, I’ll keep the list but I’ll start with… student. First one who sent in a question yesterday was Nargus Fargel. NARGUS: Here. Okay there. NARGUS: I’m just gonna do my own question. I was hoping you could breakdown
of why the genetic testing (paper rustling drowns out speech) it doesn’t seem that there is as much
social pressure to do that, it is personal preference (coughing drowns out speech) based off that what inspired that fear that the pressure will come about, if right now we have things in place and they’re still not being taken up? I don’t, this is tricky in
so far as I kinda want you to be right, but I fear
that your not, similarly. So… I think more of these
technologies are taken up than these questions suggest actually and I think the mentality
that there is a future in which they will be
more readily taken up is already quite present and
in light of the discourse around genetics and the research politics. So… There is this thing called
reproductive benefit, or reproductive planning benefit, that is kind of an emerging benefit of
having your genome sequenced. Is even if we can’t tell you anything that you can do anything
about in your own health it might be helpful for your
reproductive planning. And there are children and
adolescents whose genomes are sequenced in research
context because they, usually they’re kids who have
had something going on anyway and they’re in the genetic
clinic and then they’re enrolled in these studies and sometime they don’t find out anything from the genome sequencing
about their actual condition because we don’t know that
much yet, among other reasons. But they’ll find something else because there’s always something. There’s something in your genome for sure. And they’ll return that to
the adolescent or the child on the basis that it will be helpful for their reproductive planning. And so baked into that
idea, unspoken, is the idea that you will actually
now use this information to avoid having a child with that gene or genetic
variant, whatever it is. And really the only ways to do that now are through these quieter interventions. And it turns out, probably, that most of the people they’re telling this will A not be able to afford that or B will just get
pregnant some other way. But that means that they “didn’t” do what they were told they
could do or they should do. So on the other hand I think,
yes, there’s really expensive, invasive, horrible things right now, but I also think that the future in which they’re used
more is fully at work. In the discourse of all of
Silicon Valley around genetics, most of the US genome program, which is gigantically well-financed, huge amounts of research in China, looking at the use of editing, and other technologies in embryos, so I think that there will be, there is already sort of
a significant investment, even just financially, in this future. There’s a book called “The
End of Sex” by Hank Greely that talks about
something called easy IVF, which is where they would just use somatic cells, skin cells, to create embryos, and then you could pay hundreds
of thousands per person, and look it them for everything and then tweak them and stuff. So I don’t know how, realistic, when I leave the US, this happens to me every time I go to New Zealand, and I start to reminisce on this stuff, I feel like I’m like spouting crazy talk, what are you talking about? But honestly, there’s this is hugely invested in, in the US
context, and other countries, that we will in fact, not
you, but my kid, who’s nine, that she will have far more genetic
information about her genome and that she will use that information to, at least, select
against certain traits in her and my, I’m so in a fantasy land
here of my grandchildren, that she will at least
use it to select against. Whether it’s because she can do easy IVF, or whether she does “hard IVF”, and I will note that it’s awesome that you say that about IVF, but the idea that IVF is burdensome on mainly women is just not talked about. It should be talked about a lot more, but no one seems to care,
much about that, so far. So it’s nice that people will start caring about how burdensome IVF is on the people who have to go through the egg retrieval. But it hasn’t been the
discourse thus far, right? In 40 years of IVF, there
hasn’t been a whole lot of attention paid to the fact that it’s arduous for the people involved. So I don’t feel super
optimistic about that, and I think parents who a
history of inherited disease do in fact feel significant obligation to go through IVF and PGD, and as more and more of us come to see that we have things that
we could pass on now “bad” there will be a larger audience, larger customer base for that same thing. I’d love to be wrong, right. I’d love to be like no we just don’t that we just keep doing that the old way, but that’s not the future
I see being invested in. Maybe Chris briefly as well. So to– On that question, yeah Wasn’t really prepared
to provide an answer to that, Josephine’s was
fairly good. (laughs). Do you wanna repeat the question? NARGUS: It has to do with
the fact that as of right now it does seem like a choice to anybody to get prenatal testing and that pressure, that norm isn’t there as much (mumbles). You have countries where
90% of people who have the Down Syndrome diagnosis prenatally terminate the pregnancy. You can say that’s just
because that for choice or you could say that that
is social pressure at work, there’s a lot, you’ve
got a book on this stuff. Things are changing right, so the technology’s getting better, it’s getting easier, and
you do see more and more the discussion around the
idea that it’s gonna become sort of mandatory, quasi-mandatory, not required but quasi-mandatory. So that the fear, yeah. The other thing is, it’s
not just ease of use but it’s accuracy along with ease of use, so one of the things that
sort of prevented it, prevented some the screening
processing prenatally from becoming sort of taken up in widespread fashion was the fact that the screenings
were really inaccurate for a long time and
they’re getting better. To the point that there’s even suggestion that pretty soon you won’t need things like an amniocentesis which
has a risk of miscarriage which is a real deterrent for some people. It’s a very small risk
but it’s a deterrent. If you illuminate that risk and you have pretty clear diagnostic information using just a blood test, then a
lot of people are gonna say “well why wouldn’t you just
do it, its just a blood test” And it’s already, it’s nice that, prenatal screening is
scrutinized in the US. In the US context and in may countries, people don’t even remember
that there was a choice that they made, amnio use, because that a big deal, and they have to go to a different place for it, it’s like thing
that, it’s a decision point, but other kinds of testing that happen in prenatal care are
routinized to the extent and in a way that is
completely inconsistent with freedom, with any kind of choice, it’s just part of what you do and I tried to say no
to one prenatal tests and God, everybody gets
their frickin’ knickers in a twist, when you do that, so no it’s, yeah it’s
pretty, you have to do it. Amelia? AMELIA: You kind of
touched on this already but do you think a shift
toward using genetic technology for gene editing would
actually put in conflict with advances with disability rights? So the disability rights
discourse is one of the wonderful ways in which we have become better humans over the last few decades. I don’t take any credit for it, it’s not something (mumbles but I’m a total beneficiary
of that whole literature. That’s more progress,
I think it’s an example of moral progress, the way in which people now discuss disability and the idea that everybody’s kind of got some sort of disability which is
moralistically true. Everyone will become
disabled in certain ways that the way in which that’s a richer and more questioning, skeptical discourse, the way we
understand the extent to which so many things recognize today’s disabilities are socially constructed, the neurotypical movement. All of those things are
super helpful for creating a kind of support for the
idea that this is not how you have to think
about these technologies. That’s the counter-narrative, it’s part of the counter-narrative for this stuff totally. And its really good, it’s a helpful thing. One of the things that’s just coming out in the last few months, is
a huge bunch of research on whether poor polygenic risk scores, which is, it’s a big data
kind of approach to genetics, it’s not looking at cause or mechanisms but just seeing are there
many, many, many gene variants that when you add them together, seem to give an increased
“risk”, and that was the word, for certain things and one of the things that’s being measured is
educational attainment. So you can get a polygenic risk score for your chance of completion
different levels of education and it’s actually in this populations in which the research was done, so it’s not universal as well, across different countries,
and ethnic groups, heritages, it’s really predictive and so they’ll be selling
polygenic risk score testing for sure, for people and you’d have a bunch of embryos and some of them will have a
higher polygenic risk score than others and that’s really, that’s something someone has fought for or really figuring out they’re gonna sell and so, I think, yeah, disability might be becoming more nuanced but we’re not more nuanced
about things like IQ or educational attainment, some other things, other traits that aren’t called disability but are highly socially
valued or disvalued. We may get a genetic
entry exam to law school. I mean I think by the time (laughs). I don’t know, see I think that we make quite the same mistakes
we made in the past right? Like we won’t do that,
but we will do it with the prenatal test, we’ll sort prenatally, or preimplantationally Gregory. Gregory (mumbles) GREGORY: Sure (mumbles) So my question today is
more to the consequences about the way that you’ve characterized the pressures that
parents would be facing. So in your chapter, you
contend that asking parents to adhere to that particular conception of a good parent was akin to asking them to cease to understand
themselves as persons. So I’m just wondering if there’s anything that we can add to that to talk about the consequences
or take the analysis a bit further with data to show that would have an adverse
psychological impact, And this might be a pretty obvious answer, or is it merely wrong in principle. I think it’s wrong in principle for people to be asked, you
know “asked” not directly, but to essentially give up
on themselves as persons inside of a role that they take on, a role like parenting,
let’s just say that role. So I think it’s in principle. Whether or not it has
negative consequences to sort of cease to exist
inside of a parenting role as a person or an individual with a life story and your own values, I don’t know that I can
point to a study on that. Sometimes, when I find
myself making this argument, like saying we got to
allow for a construction of good parenting that makes
room for the interests, and lives, and wellbeing, and flourishing of parents themselves,
it seems so obvious, why would you construct
good parenting in a way that sort of obviated the parent. And then I’m like well, I don’t know, if you just change the
word parent to mother it doesn’t seem so weird, right? Construct the role of
good mother in such a way that the mother ceases
to exist as a person, well that sounds familiar.
(audience laughs) So I think we’ve done it for a long time and, now this is not data, this is just my own life experience but as someone who became a
parent in the Unites States, I felt like I really resisted
the narrative around me which was “your life is over,
you’re a different person now, “your needs don’t matter,
it’s all about the baby”. (sighs) Don’t get me
wrong, I think I’m a really good parent, and you can ask other people about that if you have
doubts, and I put her in, and I don’t think, part of what’s wrong with my paper, if I was
critiquing my paper, is that I sort of construct this dichotomy of parent versus kids,
in terms of interest, and I don’t really think
that’s how families work well maybe it’s a bit related to it, but for the purposes of this paper, I felt like I needed that construct to flush out that issue that
I was really interested in which is what does it matter? What does it matter if it’s
horrible for women to go through IVF if that’s how they can maintain genetic link to their,
that’s how their husbands can maintain genetic link to their child, then let’s just go for it. That’s never mentioned when
you go in and they diagnose you with male infertility right? No one’s like “this gonna
be really awful for you”, they’re like “we have great
news. It’s male infertility “and we have a high
success rate with that” that’s how they treat it. So, anyways, sorry, I’m
getting distracted, but… there is, I’ve experienced
the very strong narrative of it’s not about you,
it’s about the child, in a parenting role and there’s not room in there, currently it feels to me. So that’s an experience that I’ve had but I don’t a bunch of
study on that, sorry. You might be able to look for them. A question from the audience, yep. [Woman From The Audience] I
just have a question about the commercial market driving this quest and
the role that it plays in creating the kind of information and where’s the discourse
about the technologies because I’m part of the research team studying on invasive prenatal tests. It’s a very commercially driven market, there are lots of companies, the test are not regulated and so they’re
producing information that is saying, this is reassuring, not giving all the information about the actual test and how it works. And it is an easier test,
so I’m just wondering how that the market plays
with this particularly. I think the market and the
commercial interest are gigantic and they’re
unprecedented in this space. So noninvasive prenatal testing,
and I’m sure you know this, sort of took obstetrics and
gynecology by surprise right? It’s like whoa, every other
test that we want to introduce into clinical practice came through ACOG, which is American College of
Obstetricians and Gynecology, we did the research, and
then we decided to adopt it, and then novice prenatal
testing just came on, there are all these tests and people in obstetrics felt blindsided, this was happening
without their cooperation, without their sort of authority. And that’s how it is,
that the new now, right, that’s for sure how it is and
so we have to catch up to that because I don’t, and you certainly see it because that’s been the whole story of directed consumer genetics, outside of reproductive stuff, though directed consumer
genetics definitely has reproductive benefits,
claiming, baked into it as well. So I think the commercial
interest are great and they are… they’re really hard to control. So and they have a really
strong narrative, a logic, and so what I’m interested and doing, not just in this chapter, but in this book that I’m working on, is developing the counter-narrative which includes some of
the disability stuff but also this idea of how one’s own engagement with this, changes oneself in ways that
may or may not be fulfilling. Hartley? HARTLEY: Yeah, you started hit on this actually in your presentation
but I was just wondering if practically your predictions come true, if you want to go ahead
making a shift in the culture of how we think about good parenting, in the context of genetic editing, do we do it and how the
products are marketed, if we do actually market it,
and then could you mention laws, what would those laws look like. Yeah. Okay. So… some of what I’m gonna say tomorrow, at the end of the
conference, is about this. It is the case that, so there might laws directly
related to the technology that could be helpful for… modulating the pressure to use it and making sure
people really understand and felt hey have a choice right. So there can be laws around that, there can be very direct practices, and sort of policies of medical ethics, like how do you do good clinical medicine that can address the technology, that sort of technology-based
and under that realm. But I also know that other laws and policies and practices also have a gigantic impact. So if you live in a
culture where there isn’t really any good support in your schools, or your medical system or even in your criminal justice system for people who are, have particular genetic
conditions or differences. So let’s take autism. When they get polygenic
risk score for autism going which is just right, happening, and you live in a culture where people with autism are more
likely to be molested, people with autism are less
likely to receive services, if you live in that kind of place, where are not those kinds of laws and policies in place to support that kind of genetic difference, then you can go through a
lovely informed consent process where you fully understand
what you’re being offered and blah, blah, blah, but
the other laws and policies that are missing would be so overwhelming in shaking your decision that you may feel you don’t have a choice right. So we do a great job, I think, in reproductive stuff sometimes, of classifying people’s choices, calling things choices that
are actually super, super constrained by various
financial and social and policy questions that haven’t
been adequately addressed. And those are the kinds
of laws and policies where I think you could
make a big difference. And there are things we
wanna do anyway right? You probably do a great
job in Canada, again. It’s so easy to idealize Canada when you live in America,
you have no idea. (laughs) People are like you’re going
to Canada for Thanksgiving and they’re like “Oh,
will you come back?”. (audience laughs) People are just desperate
down there, right now. But it’s not the case everywhere,
we can always do better. I think those are where a lot
of the action can take place so that you create a
more welcoming society for people with different
kinds of ways of (mumbles). Okay. I have five more
questions on the list. What I will suggest is that people just formulate their questions
as briefly as possible and then you can see where
you’re able to respond. So I would suggest Annette and Lauren and then I have Patrick, you, and Ian. Okay, so start with Annette. ANNETTE: Hi. (mumbles) I
was just curious about how if and why you think this
specific moral obligation of the parents to use the technology (background noise drowns out speech) Okay. Do you wanna just go
through the questions and– Yes, so take the questions down– [Woman In Audience] I actually have the same question as Hartley so– Yeah, yeah. [Woman In Audience] I have
the same question as her. Okay. And then Patrick. PATRICK: Hi. So in the relationship
between law and technology like in a case like
this, oftentimes we have this narrative where laws are
lagging behind technology, lagging behind science,
I’m curious to know if among proponents of gene
editing, gene sequencing and all this stuff, if
that kind of narrative, how’s the law sort of framed. Is it this vestigial, slow burden on everything that we should just, if only legal people would get their act together or anyway,
just to hear your thoughts. Mm-hmm. [Woman In Audience] I have quite a question for clarification and
it’s in regards to criticism. So you said, were you saying
that CRISPR/Cas9 could be a potential, have potential therapeutic use with respect to in utero
and postnatal complications, and are you fine with
that, if that’s the case, where you can use it as an
intervention at that point? Okay. Then… Continue, you’re finished? [Woman In Audience] Yeah. And Ian. IAN: You talked about gene
editing in association with IVF, which we all know
is difficult and expensive. Are you concerned about
when there’s an opportunity to select for things like
height and intelligence that there may be a
sort of exacerbating the difference between
classes and sort of helps define classes for future generations. Okay. Is that it? Alright. So I’m gonna go backwards, which means I might need to
first question repeated to me. So it be use to exacerbate
class differences? Yeah it could be used to do that. It might also be the
case that it would be, as you could argue about IVF actually, rich people would get access
to something horrible. But if it can actually confer
social advantage then sure it would definitely be something
you can use to further, differentiate yourself from
other people, make better kids, you’re gonna make better
kids whatever that means. So yeah possibly,
alright, I do think that. Are laws lagging behind science
and is that the narrative? So yeah, I don’t necessarily
think the laws are lagging behind the science, but
that is the narrative. So certainly you see
that around the germline, the prohibition on germline modification. The narrative is like “oh,
that was a line in the sand “that we drew as a compromise decades ago “when we couldn’t do
it but now look how we “could use it really helpfully,
we need to update the laws”. For sure, that’s the narrative, and it’s also kind of
coincidentally but not peripherally, peripherally, but not coincidentally, the narrative outside of human uses. So, New Zealand has laws on genetically modified organisms and is actually officially GMO-free. And so totally people are “Oh my God, “we could change the
laws”, that’s obviously not something we, you
know, that’s definitely the narrative outside there as well. We can debate whether
that’s right or wrong but that’s the sort of story. And the social consequences of
changing laws to accommodate science, once science catches
up with where the line in the sand was are
almost never discussed, but they’re huge. And then I’ll leave you the (mumbles). The genetic counseling
question, were you asking how genetic counseling features into this discussion on this issue or? ANNETTE: It just seems
strange to me that given your entire field is dedicated to helping the average person
understand the consequences of some of this and all this
is stuff we don’t know still that parents would still hold
on to that moral obligation or at the very least that
somebody could insist that somebody was being a bad parent given all that information
that science is telling you how unreliable the science is. Yeah. So I forget the
number of genetic counselors in the United States, but it is so tiny compared to the number of people taking genetic tests, that the idea that everybody offered
a genetic test can get counseling from a genetic counselor, is totally impossible right now. It doesn’t mean that
there couldn’t one day be this gigantic workforce that does that, and that workforce could
help people understand what it is they’re up to. One of the things I would
like to see that workforce do, is include some of the
stuff about the burdens on parents who are going down these routes and not just be explaining the tech, I mean I don’t mean to be
mean about genetic counselors, ’cause they do an amazing job, but, and maybe some people do
talk about this other stuff, in medical ethics, we’ve understood informed consent in the genetics context to involve a lot of explanation of how the technology works,
and what the conditions are it can look for and how accurate it is for those different
conditions, and that is what informed consent amounts
to, it’s the informed part. There’s much less attention to things like what’s the experience like, what do we know about
how this is for people?. We now know that going through, that if you get expanded prenatal testing, diagnostic testing,
that uncertain findings, in that context are very,
very, very difficult for people to deal with and
cause gigantic distress. I don’t know if it’s in
normal genetic counseling to tell people that as well. Here’s what we know about the experience and what it’s like for people,
and what we’ve been learning about how to do this right. So I don’t know, I don’t believe that it’s a fully, that what
counts as informed consent is in the kind of
counseling that includes, it could include some other things, it could be expanded
somewhat to enclose some of the stuff about parental wellbeing. But yeah, if you’re
gonna get a genetic test, you’re really lucky if you get to talk to a genetic counselor
before or after or both because that’s the
best-case scenario, really. So the CRISPR/Cas9. So here how I think it’s being used now. I think it’s kind of up in the air how it could be used in the future so there have been some studies where CRISPR/Cas9 has been
used to alter embryos, which would have germline changes, so they’d been inheritable changes, that would pass on to the next generation. So tell me what you think–
Yeah. I know that it’s being used to to engineer T cells that can
be used for immune therapy and treatment of cancer for leukemia. So you have donated cells that are changed using CRIPSR and then implanted into the patient someone who’s (chair drags across floor
drowning out speech) which they’ve engineered
to make them compatible with the person, and used
to combat the leukemia. There is animal research
on in utero gene editing for something like, so
some candidates in humans would be cystic fibrosis, or hemophilia, that cystic fibrosis, in particular, that’s identified during the
pregnancy, especially early on and then if you could do gene editing in the early development of the fetus, there’s every chance that would
impact germ cells as well. So the germline, somatic distinction has got a bit of a
fuzzy line in the middle where there could be partial impact on germ cells or full impact on germ cells of interventions done in utero or even maybe in children depending. So that distinction’s a little problematic because the line isn’t as
clean as with (mumbles). Last two words about
Patrick’s question or, Well I did, I think. Okay, good–
Yep he’s right. And can I just say one thing, which is that this is my first time that I’ve ever had a
commentator on a paper I wrote and it’s a real privilege to have a colleague comment
on your work like this and for all of you who engaged. So I just wanna say how grateful I am for you to give me that time. Thank you so much, this was a
really stimulating dialogue. Thank you. (audience applauds)

Stephen Childs

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