Family Structure in the Wake of Genetic and Reproductive Technologies Conference – Day 2, AM Session

– [Inmaculada] Yeah,
I don’t know what else to say other than (laughs),
you know, the kinds of things that I was saying yesterday about and a little bit today
about trying to evaluate technologies in general and
reproductive technologies in particular in a context. Thinking about the ways in
which norms, values shape how we use technologies,
how we implement the use of technologies, and the
ways in which technologies can bring force or challenge
particular kinds of values, sometimes bring forth values
that we find problematic like sexism for example sometimes
challenge values that we think shouldn’t be change
like our notion of parenthood for example. I think one of the things
that these technologies are doing the PGD in
particular is challenging a particular normative
notion of parenthood, which is accepting any child
that comes along, which is normally think of good parents. Good parents are those
who love their children no matter who their children happen to be. But PGD is actually
challenging this notion by making parents be those who actually think about who the child is going to be, the future child in this
case, what characteristics the child is going to
have, and that can have significant affects on, you
know, actually what we think about good parents are so much so that in so far as this notion
of choosing a particular child is imposed, we might think
of parents who don’t choose who just let things to nature,
are acting irresponsibly. And, so, how can we try to
prevent this, again, if this is a notion that we want to maintain, this values from being challenge, so I think that, again,
one of the problems with evaluating technologies
in this value-neutral way is that we ignore the ways in which they are actually value-laden. But also we tend to focus then
only on risks and benefits, and the risks tend to be
considering, you know, relatively narrow ways, so that we think about risks to health, you know,
social risks in broad ways, but we don’t think about the ways in which we can change norms, you know. We can shape values with the
use of these technologies, again, technologies in
general, these technologies in particular given that
they affect particular kinds of values that are essential
to forming families, what we think is an important aspect of a good life, parenting. And, so, in relation to some of the things that we have discuss, I
mean, there’s little doubt that these technologies
have actually influence how we think about infertility,
you know, as a disease, as a disease that needs a
technological solution, you know, a medical technology
in order to be solved, and that while before
women who were infertile couldn’t do much once you were infertile, now there is this pressure to
use the technologies in ways that allow them to fulfill
the role, the motherhood role. In relation to sex selection,
you were mentioning, Soraya, that there is in some contexts
there is a choice for girls, and again, this is still in this context of how values actually influence, and that has been an argument, people who defend the use of
sex selection for example, like (mumbles) who have pushed very much for these technologies their argument is that at least in Europe the use of these technologies
is to select girls, again, under the family balancing argument, and that therefore the
technologies are unproblematic because of this use. But, I think that’s wrong. Again, the fact that we select girls doesn’t make the technology
any less problematic. It might be less problematic in the sense that we are challenging
an aspect of the use of the technology in contrast
to the selection of boys, but it’s not any less
problematic in that sense that it still expresses a
particular notion of gender, that is problematic. It still expresses a confusion
between what the technology can do, which is select a
chromosome that presumably has an influence on determining
sex, biological sex, and gender which is, you
know, something that is, as we well know, not determined by chromosomal sex. So, in both makes science
complacent in these idea that gender somehow is
determine by the selection of a chromosome and reinforces this idea that gender is rigid norm
that actually has, you know, we can determine by looking at an embryo. So, even if we select for girls, we are still, you know,
there are problematic aspects of that selection. And, again, this is in
this context of thinking about technologies not as
tools, as simple tools, that can be used for good or evil, but as part of the social contexting, which we both develop
and implement the use of this technology.
– I think it’s great that you wrote a paper
that’s really reinforcing this notion of the
biogenetic relatedness issue that these technologies
have really exacerbated sort of around the world, and
I thought a couple of things, you know, there are wonderful
anthropological discussions of this. The sort of best one I
remember is an early article by Helena Ragoné called
“Chasing the Blood Tie”– – [Inmaculada] Mhm.
– sort of an excellent just reference about just the importance of the notion of blood. Other anthropologists, Jeannette Edwards, and there’s a wealth of anthropological sort of substantiation
for that how from early on people really wanted to
use these technologies to get their biological,
blood-related kids. So that’s one thing. I also thought if you wanted to make this a sort of culturally, to tie it to sort of the Muslim world,
it’s profound here. This notion of biogenetic relatedness. I mean, all of the sort of Sunni emphasis on no third parties is a
sort of an instantiation culturally of the need to perpetuate your own biogenetic lineage, so I don’t know if you
wanted to talk about that, but I thought were kind of staying– – [Inmaculada] Right. – in a kind of Euro-American context. – [Inmaculada] Right, yeah. – But it could be broadened to say that in the Muslim world
that is really the basis of the ban, if you will, the
ethical ban on third parties. – [Inmaculada] Third parties (mumble) – So, you know, just an expansion. I thought it was, tie
in so well regionally talk about a cultural context
where it’s more important than (mumbles). – There is one paragraph your paper just before the (speaks
away from microphone) – Sorry, you are absolutely
clear what this paragraph means when you are sort of saying
that this biogenetics increase control over women’s bodies
and the process of (mumbles) as well as reinforce the
belief that women are fundamentally responsible
for reproduction. – [Inmaculada] Right. – Can you elaborate a little bit on that? Because just reproductive
thing is a joint– – [Inmaculada] Right, right.
– (laughs) – [Inmaculada] So, one of the latest books that I have written is
“Rethinking Reproduction” where actually one of
the chapters is dedicated to this aspect about the
gender blindness of many of the evaluations of
reprogenetic technologies, so reprogenetic technologies both, I mean, not just reproductive
but PGD cannot be accomplished without IVF. So, often we talk about PGD
as if it was just something that can be done in a vacuum
but cannot be done without IVF. IVF can only be done with
womens and all women’s bodies. Infertility, can happen,
you know, as we know, whether it might be a woman or a man that wants who are infertile but it’s always through the woman’s body that infertility is presumably solved and, again, solved here
we’re doing quotations because I’m not persuaded
that infertility is a disease. Infertility in the sense of
not having genetically-related children. So, in that sense, these
technologies bring forth this control over
women’s bodies that comes from the use of these technologies. That doesn’t mean that
women are agentless. That they go to use these technologies because they don’t know
what they are doing. Clearly, that’s not the case. But, that doesn’t tell me much. We are obviously shaped by the norms of the societies where we live, and it’s sometimes very
hard to fight those norms whether we like them or not. Sometimes we embrace
them, and that’s fine. But, sometimes even if
we don’t embrace them it’s very hard to fight them, and we have lots of empirical evidence about women, for example,
who would rather not do a fourth trial of IVF, a fourth cycle, but that they feel
pressure because, you know, my mom is waiting for a grandchild, and my whomever is telling
me I don’t have kids, and it’s not like, you know,
nobody’s forcing me to do it, but it’s hard to fight
against that kind of pressure, and once we have the
possibility of doing things, we have this idea, and, you
know, as someone was mentioning if it is possible, why not do it. So, it’s harder to say no in this context, in the context in which
things are available, so in that sense of they
reinforce these control over women’s bodies. The aspect about womens are
responsible for reproduction, again, this is done with women’s
bodies, all women’s bodies, and one of the things
that these technologies, PGD in particular,
again the reprogenetics, are doing is this control over
the quality of the embryos. So, it’s not sex that is
the most relevant thing in this context. Sex is really an afterthought. Is all of the characteristics
that we can choose and that we will be able
to choose in the future once we have more information about what genetic
variants do or don’t do. So, in that context, this is a context where women already,
women who don’t use PGD, someone was mentioning
yesterday in the talk, I think it was you, Susie, you know, womens when they get pregnant
there is this pressure about don’t drink this, don’t
eat the other, exercise, don’t exercise too much, so
there is this fantastic book by Rebecca Kukla, “Mass Hysteria”, about, you know, all the
pressure on pregnancy, and this book “What to Expect
When You’re Expecting”, you know, everybody has
to follow this book, and what happens if you just
are a little off of that. So, that pressure on
controlling what women’s bodies get into themselves, you know, much before they are
going to become pregnant, is now reinforced by
this ability to actually control the quality of the future baby by checking their genomic makeup. So, in that sense, the
ones who are going to be thought to be responsible,
as they are now, again, when a woman has a baby who has any malformation, for example, there’s lots of empirical evidence that women feel responsible for that more than men tend to feel responsible, so it’s quite likely, in this context, the use of these technologies, are going to increase the
sense of responsibility that women have for reproduction. – I like how you
investigate the implications for the biogenetic family on values, including those of parenthood, so when you said that it’s good parenting to accept any child or what is good actually is to be so called be responsible and select for the fit. I know that you don’t address directly the relation with religion, but I think there is an interesting link with Islam and the Koranic
provision, if you will, of God’s creation is perfection, right, so this is beyond parenthood
and parents’ responsibility, and attempting to correct
can be seen as shirk. It can be seen as sinful, right, that there is here an
endorsement of the role of God. So, to go back to the point
of whether any reproductive issue, right, any problem, is
a disability then the answer from that sense would be no, right, that there shouldn’t be any
genetic modification whatsover because that’s, again,
messing with perfection. – The work that I do doesn’t explicitly assess religious content, but this normative notion of parenting, and there is some empirical
evidence that people, there are some studies that have been done in England, for example,
about what people think is a good parent, and it
seems a very extended believe that accepting children,
you know, as they come is a thing that means to be a good parent. Now, interestingly enough,
there is this thing about how about diseases, you know, diseases that are particularly
terrible, you know, again, people always use the case
of Tay-Sachs, for example, as something that would be
legitimate to select against, but it is when you get into, you know, all of these characteristics
that we can now select against, and eventually we might
be able to select for, that one wonders, you know,
how is this going to change our notion of parenting. – Have brief question. Are we forced to choose
one of these choices, changing concepts and values of society or controlling these GPT
researchers to maintain bioethics to control or to
maintain the creativity? Which choice we have to follow? – I’m not sure I understand you. – Now the title of this forum is (speaking away from
micropohone) slash baby change pass the question
we change these concepts we go on changing the concepts or values of some societies or just
controlling the medicine, the researcher to maintain the creativity. – Oh, well, I don’t have
any problems changing the notion of family structure. I think that the notion of nuclear family is completely problematic. I think that the notion of
genetically related children as the only children one can
have is terribly problematic. So, I don’t have any problem with changing family structures. I think that these technologies actually don’t change it enough. It only appears that they do, but actually, again, one of the aspects is that some of the values
of the nuclear family are maintained by these technologies, one is the genetic
relationship, for example. So, I don’t think that
there is any contracts or that it’s not possible
to both try to change. I do not believe in genetic determinism, I mean, obviously not genetic determinism, but in technological determinism, so I don’t think that
technologies determine a particular, you know,
either values or outcomes, but is very hard to change certain norms that are dominant like the
value of genetic connectedness, and it is, again,
problematic it seems to me to think of technologies
as neutral when they are implementing in a particular context, so there’s no reason to choose. I think that technologies can be used to challenge particular values. The problem is that
because we don’t reflect on those values, you know,
normally don’t challenge them. – (speaks off microphone) – Yes, okay family structures
there’s a normative notion of family, and the
normative notion of family, which is not the majority of families, again normative notions have nothing to do with whether the majority
of people do or don’t do. They are normative. So, the normative notion
of family is still a biogenetic family, where
there is genetic connection between at least one of
the members of the couple, in general, both of them, and
heterosexual in most cases. Now, it is the case that
the majority of families at least in the Western countries, do not resemble that family. But, that’s the idea, and this
is what we compare families. That’s the reason why we say
single parenting is a bad thing because children don’t
get, you know, the input from two people, Kami, so we
compare these other families to the nuclear family,
to this idealized notion of the family, and we– – [Man With Glasses] Okay, I
think we can come back to that if we have time after that, but I wanted to ask if
there are other questions. – [Marcia] I was just looking at papers and really thinking about if
this is a sort of regional or something. One of the reviews that you could, this argument is so (speaking
away from microphone) – Right, right, to do it.– – I think that if you
can just tie it into this part of the world and say
it’s shown so clearly here it would kind of tie more instead of just a normative argument that you’re making into something that’ll fit
into this particular (mumbles). There’s plenty of literature, I mean, we’re happy to send it along–
– Right, sure. – from the Sunni-Muslim world. I don’t know if–
– [Man With Glasses] Exactly. I think this was one of
the points we discussed when we met, I think last year, about the possibility of
basically contextualizing these philosophical discourses on new reproductive technologies and their relevance to the Muslim context or Muslim majority, either in the Muslim
majority kind of context or Muslim populations elsewhere (mumbles) also in minority kind of situations. – It’s this thing that
when you are not expert in an area you feel like talking about, I really know very little
about the Muslim world and the variety. So, I get intimidated by
having to talk at all about it because I feel like someone
is going to immediately say, “Well, but, actually,
this and this and this,” and I’m not gonna be able to respond. – But you wouldn’t have, I mean, it would be very easy to write– – Right, okay.
– about it, I mean, just with a few references. The only part of the
world, the Muslim world, where it’s not really being
followed is really in Iran, and to some degree, Lebanon, but every place else it’s just
about biogenetic relatedness and so it would be very easy
not to change it that much but just have a section
about this cultural norm plays, not in just in
Euro-America, but especially in the Sunni majority. – I would love if you send me something. – Yeah, it would be easy to
send you some references. – [Man With Gray Hair] What
do we do with the notion that there’s no such thing as an ethically neutral technology? So, once we know that,
what are we supposed to do with that insight? One might say given that, we
should adopt a laissez-faire approach, right. That’s one possible response, and that seems to be defacto
what’s going on in the world. Another approach might
be, no, given the fact that there is no such thing
as a value-free technology we need to have social policy over it. So, I’m just curious
whether you want to address that here–
– [Inmaculada] Yes. – or in the paper. – [Inmaculada] Yes, so,
I have addressed that and many other people. What do we do even that
we know that technologies are value-neutral. Well, the first thing is
that when we evaluate them we need to be aware of
that because the evaluation of technologies looks very
different if we evaluate them as neutral instruments
than if we evaluate them as value-laden. So, that’s the first implication, and because we know that
they are value-laden, we can reflect on what the values are that might be, you know,
shape, transform, bring forth, whatever it might be by
developing and implementing particular technologies,
so that’s another thing that we can do. And then, depending on
where those values here, might be either social policies or changes to the structure
of the technologies whatever it might be. They might be different
solutions depending on the kinds of technologies
that we might develop. But, there are many things to do, and, again, one of them
is obviously to reflect on what those values are. – [Man With Glasses] I have a question. When we talk about, you
know, moral valuation of technology in general or science, I think there is a history
to this kind of question. As natural science kind
of emerged in particularly within a Western context, it
was this kind of emphasis, that okay science is not
interested in the issue of value, the issue of even ethics, and now I think there
is a push back on that in the sense that, no, science,
per se, or even technology, is not completely value-free. So, I think when we get
into that discussion, I think it is important to
point out that history also and the developments of this
discussion over the years. – Right, no–
– [Man With Glasses] What I have in mind when I say that are people like Max Weber, for example, when he talks about the
professionalization of disciplines and also science as a profession, and many other kind of
philosophical kind of discourses on whether science
should be involved in morality or whether scientists
should have something to say about morality or not. – Right, so, that’s a different issue. So, there is the issue
about whether scientists should be involved in
policy making or advising or something like that. That’s a different
issue of whether science and technology are value-neutral. I think science and technology
are not value-neutral, and I can have different opinions about whether scientists
should be involved and what are the consequences
of scientists being involved in policy making or advising. Of course this is a
historic aspect, you know, the attention to values in
science or in technology, but the notion of science and
technology as value-neutral is a positivist notion that separates this context of justification
from the context of discovery, and that, yes, of course
there are all the values here about science how we think
about it and what questions and how we fund it, but
when you really need to do the justification of
our scientific theories that’s just value-neutral. And, there’s a history for why
people though these things, and there’s lots of literature
that shows, well, you know– – [Man With Glasses]
But, what I guess what I am trying to say is to bring
this kind of discussion– – Right. – [Man With Glasses] to give some sort of an overview, a brief overview– – [Inmaculada] Right,
you mean for the paper. – for the benefit of, yeah, the paper– – [Inmaculada] Right, right, yeah, no, the reason was there was a
limit to the word counting, and there is lots of literature on discussions about the value-ladenness of both science and
technology, yeah, yeah. – The position of Iran as a Shia country with 90% of the population
is a 12 Shia is very unique. Iran is different from all
the rest of the Muslim world in the application of ARTs
in that Iran has allowed all form of donation IVF,
third-party donation, surrogacy, a sperm donation,
egg donation, embryo donation, and embryo donation is
the only one which has got a low-pass on it. All the other one these
technologies have been legitimized through
fatwas, religious edicts. Therefore, there are no laws, and the religious edicts
vary between themselves, as I explained yesterday, therefore there are
different views in society, and each social emulation, each ayatollah, each Islam, senior Islamist jurist, has got his own followers, and some have allowed the
application of these technologies and some have forbidden them. Therefore, there’s a variety
of practices in society which has led to, not just confusion, but also has allowed room for manipulation and maneuvering by all parties involved, the practitioners and the
users of these technologies because they find gaps in
between these contradictions and they make use of these
technologies as it befits their own agenda of what reproduction and having your family means, which then justifies my conclusion, which I’m going to come to. So, Iran differs in that respect from the rest of the Muslim world but it also differs from the
rest of the non-Muslim world in that it agrees with the Muslim world that ARTs can only be applied within the marital union
and heterosexual couples. So in that respect,
many of other countries in the world which will allow
gay couple or unmarried couple to make use of this. So, that makes Iran a
very special position. Otherwise, these technologies
have been going on in Iran, oh, since the late 1980s, early 1990s, and as the new technologies
have come being offered in the market, Iranians
have been very quick to make use of them. So, now, every technology which has come to the use is practice in Iran, and I was talking to
some of the physicians about mitochondria and
doctors said, “Oh, we have several students who are
doing their PhDs on that, and soon it will also be applied
to Iran”, which also some of the instances have started talking about the implications
of having three parents and what that means and the
role of mother is becoming more and more prevalent in that
kind of considerations. But, I also in my presentations
try to link the importance of infertility becoming obviously in Iran and paying attention to
where it links to population and the state policy
towards the population because Iranian state had
not paid any attention to infertility because they
were so engaged in trying to reduce the population,
which was growing from the 1960s onwards, and before the revolution,
the Shah’s policies were also to reduce the population growth, although they never called it
controlling the population, they called it the
regulation of the family because that would have
gone against all the norms, existing norms of trying
to reduce the family. When the Islamic state took power and we have, effectively,
a theocracy in Iran, they saw the population
explosion as a threat to the policy of the state, and they engaged in, very
seriously, with the policy makers, religious Islam jurists, and rulers to reduce the population, and the population policies of
Iran were highly successful, and they won the United Nation’s
Population Council’s prize for succeeding within ten years of bringing the population
growth from 3.9 down to 2.1. Currently, their total fertility
rate has fallen to 1.2, which is below their replacement level, and that has caused somewhat alarm among the authorities and the state that they have reversed their policies and have become a pro-natalist policy. They have dismantled all of
the policies of the previous, 1980s to 1996, but what has happened, and I’m just linking
that with Marcia’s paper, which is talking about this
drop in population policy, is that whatever the state
is doing to convince people to have more children, people refuse to have more children, and several studies have shown that the young, married couple, not been married for five years, they either have one child or don’t want to have any children. And, this is true of rural
areas as well as urban areas, so there isn’t a divide. These values which were anchored during the population policies, which were aiming at reducing population, are so deep it has created new values as well as all the other social conditions which we have talked
about, the young people, I remember I was in Iran in 1996, when the populations were in a full swing of reducing the growth, and women who I was working
with would come home and say well our children
come home and tell us please don’t have more than
two children in the family we’re ashamed to go to
school and say there are more than two children in our family. The children told their
mothers you are not battery hence, why are you
having so many children. Those children are now
at the reproductive age, and there are those ones who
don’t want to have children as well as all the conditions
that Marcia explained in her paper about women
don’t want to have necessarily children and what actually
the population policies did they had to include
women in their policies because they knew unless
they include women they were not going to succeed. And that gave the women
a license to take charge of their own reproduction
and stand up to their men because often men did want more children, but the women would say
(speaks foreign language) meaning Ayatollah Khomeini
at the time himself has said that we should (mumble) So that gave the women a license to sort of be included and take part. So, this was a history, but when a census in Iran in 2009, 11, showed that there was a drop
in the population growth the state started developing new policies to increase the population, and at the same time,
there were these studies which showed that the
high rate of infertility was very high in Iran, I mean, for example, one survey of 17,000 couples showed that it was 20%
infertility among these couples. Another survey showed there were three million infertile people, and the state immediately
saw the potential in helping infertility treatment for infertile couples to have children as one of the means, many means, of increasing population. And, therefore, there was a shift because the treatments of infertility had been in the hands of
the private sector entirely with almost no help from the state, but the state moved in to take charge of the infertility treatment,
and it became a matter of public health issue. Even the insurance companies, which treated infertility
treatment as cosmetic surgery, because it all happened outside the body, and were told by the Ministry of Health to include that as a disability. The infertility became a disability, and that is where it was. But, as to, very quickly, how to, because you were asking
me (mumbles) how is it that the application
of third-party donation was allowed in Iran, it was the engagement of
the leading pioneer medical practitioners with the
senior Islamist jurists and ethicists and other
social scientists and lawyers that they consulted and
senior Islamism jurists came up with their own
verdict of whether this third-party donation could be applied or could not be applied, and they were divided in their opinions, but as we know in the Shia Islam the views of different (foreign language) sources of emulation the Islam
jurists are equally valid. If one them contradicts the other one, it doesn’t mean that this is not valid. Even sometimes the senior jurist decide, maybe the superior religious
leader Ayatolla Khomieni, but their views are equally valid. The views were divided, so
therefore the infertile couple were free to choose to follow the views of the sources of emulation
that suited their idea, I mean, some of them agree,
didn’t follow the infertility treatment because their
source of emulation had told them not to. Others did follow. Some were not even aware
that they should follow the sources of emulation. They just felt that because
this is a medical practice, and the doctors are practicing it, they just went to the
clinics and made use of that. But, what did happen
was in all of a sudden justification through
interpretation and fatwas I came across was the
importance of lineage. However these medical
technologies were practiced they should not affect disrupt the lineage and that was justified. There’s no time for me to go into that. I’ve written extensively
about how these solutions were found for the infertile couple to have use of third-party donation without affecting their lineage. Along with that, therefore, the first port of call for the infertile couple was to make use of their siblings
or other close relatives for donation of third-party gamete. So this was very much practiced at a very large scale to begin with. But, as has time has gone by, and a lot of moral, ethical,
financial problems have come up through the sibling donation, practitioners have tried to
result to anonymous donation and some of the more leading
clinics have banned, actually, they choose, they match the donor. And, gradually, they have move
towards anonymous donation. In tandem with the state moving in to take charge of infertility treatment, a bill has been sent, I mean, several of aspects of these practices are being questioned again, and the state is trying to legitimize this through laws, passing laws, and one of the rules which
has gone to the parliament is that of whether a third-party donation should be anonymous. And this is currently is being debated in the Iranian Parliament,
which is very lucky to become a law. Now, if donation becomes anonymous, it means that relatives, I mean donors are not going to be known,
whether they are relatives or they are not relatives, and this has opened up another possibility for the infertile users to
use the secrecy of the clinic and the anonymity of the donor to result to third-party
donation to conceive, but will not disclose it as saying that they had used third-party donation. They claim that it is their own child and their own lineage
and nobody is to know. So, my argument is while lineage
has been such a sacrosanct aspect of one’s life, the sanctity of blood relatedness, that has caused a duality, a rift, within the individuals
and the beliefs in lineage that outwardly they are
reinforcing their ideal and their belief that my
lineage is going to continue and showing to the world that, but inwardly belief in
lineage is becoming a myth. The new form is to enact to
show to the outside world, but inwardly that is disrupted,
the sanctity of lineage. This is my argument. How these technologies are affecting the deeply seated values
of the infertile people. – Okay, two questions. So, just firstly on the
final point that you make, if there is this secrecy,
this cloak of secrecy, what happens in 20 years time when all of these children want to marry? So, is the question of
affinity one that comes up, so will there be an expectation of genetic tests, for example, to determine whether
they’re too closely related biologically to marry
because all of a sudden we don’t know who these people are in terms of their biological makeup? So that was the immediate
question that came to me. I had another question. This goes back to when
there was this attempt to limit the birth rate,
what Islamic justification is used for that? And I think you suggested that there were. Did the attempt to up the
birth rate again contradict those original justifications and how did that discourse play out? – Well, I’ll answer your
second question first. It was with the full cooperation
and active participation of the senior Islamic jurists and leaders, religiopolical leaders, population
policies were implemented without their help it
would not have happened. I have written extensively about that, and there was a massive amount
of money poured into study, for example, the medieval religious texts, like Al-Ghazali and all those people, to say that Islam has never said you have to have too many children. Islam has said that you have to consider the health of the mother,
the health of the child, there was a political strand
to their argument that if you have too many children, you become a poor and dependent country. There were various strand, and that was preached in
the mosques, at the schools, in the factories, everywhere. And interestingly, now there
is a pronatalist policy using the same argument. They are sort of saying,
if you are a small country, with small population you are vulnerable towards the foreign forces, and you will become dependent on. So the same argument, which was used for reducing the population,
is now being used for increasing the population. So that was a huge participation by the religious authorities
in reducing the population. And, your other question
was about the identity of who these people, the donation, when it becomes anonymous, you cannot find who the donor has been. – But do you think (speaking
away from microphone) – Well, if the child
doesn’t know that he is a result of the gamete donation, which the parents don’t
disclose on the whole, I mean, I haven’t come across
a view of the people who have disclosed that to the children
that they are not theirs. I don’t think the question
of testing and DNA and tracing back your
ancestors even arises. And the premarital testings
are about thalassemia and these kind of things. They are not that kind of
tracing and identifying (speaks away from microphone). – Iran is just so interesting. And Lebanon followed Iran. I think it needs to be said to– – Sorry, yes, I should have said. – It probably should be
said that Lebanon has took the lead from Iran and
sort of followed along. But, I still think Iran does
more things than Lebanon does. The thing that is
interesting in addition to in your paper is that
what you’re describing is happening in Iran is
counter to the global movement toward more openness in
donation, in adoption, you know, the move, for example, in
the UK that there isn’t gonna be any more anonymous donation. Everything has to be open and known. So this is a counterintuitive example, which I think it would be
pointed out nicely in your paper that they mostly had known donors in Iran, and it all kind of went wrong, right, and these IVF clinics kind
of became like family courts for these disputes that were
occurring in the family. It’s very interesting. I think you could make even more of that, and say that, here, we’ve got an example of where known donation,
intrafamilial donation, was the norm, because of
the importance of lineage, but it led to many
different family disputes, and therefore, now there’s a movement against the global norm to go toward only anonymous donation. So, I think that it could
just be made a little strong in that argument.
– Yes, yes. – And then, the second question
I had is an empirical one. Where are they going to start developing a huge anonymous donor pool from? I mean, there always have
been anonymous donors in Iran is my understanding, right? – There are lots of donors
who go to these clinics. – And they’ll do it for money? – They do it, the donation–
– Can you say more about like how are they going to recruit the (speaking away from microphone)
of the anonymous donors. – When women go online and type “donation” you will find a lot of
men are advertising sperm (speaks away from microphone). – In Iran? – So, yes, so then the
major clinics in Iran, as you have seen from the
Avicenna Research Center, they make films, they
want to make infertility be seen as a disability not
a sort of divine damnation, that, you know, this is your doom, and there’s a major, major campaign to actually make the infertility
known to more people. And donation is supposed
to be a gift, not be paid, but all of the expenses,
including paying the donors, are justified in formal expenses. For example, you have travel. You have got hotel expenses. So, actually, money does exchange place, except for among the very close relatives. – Right, but– – But that is a gradually, I must add because the
government is now opening– – Government clinics.
– the governmentally public clinics, which is going
to be almost free of charge, not completely, and insurance
will cover some of that, it is unlikely that all
the clinics will ban the sibling donation
because no fatwa or law has said that no siblings
can’t donate for each other. And, so, it will be
sometime before anonymity is going to become enforced. Even if it passes the law,
it’s not going to be easy to enforce (speaks away
from the microphone), in the near future, but it will be practice
at a very large scale. And at that point, I think,
yes, money does exchange place, and they are all donors. I mean I have seen it
myself in the clinics. People who come and want to be donors, and the clinics have
started matching them. – So just to explain it, you
could put a little bit more of that–
– Yeah, yeah. – into the paper just to say that there is already a large anonymous
donor population. – Yes.
– And even though it’s supposed to be gifted
that there is exchange of money and expenses paid
because otherwise, you know, because it almost overemphasized
that it was all being done within families, but that’s
not really the case in Iran. But there already is anonymous donation, but that this movement may be toward enforcing anonymous donation.
– Yeah. – I have actually written a few papers on the anonymity issue on gamete donation, so the overwhelming majority
of the nation’s gamete donation in the world is done anonymously. So there is a trend–
– So it is done anonymously. – Yes, it is done anonymously.
– Okay. – So, there is a trend in,
particularly in Europe, of countries trying to
pass legislation, you know, England was one of the first ones. But the majority of donations
are done anonymously. There is a difference
between known donations, identifiable donations,
and anonymous donations. So, Iran might had been an
outlier in the known donations but not in the identifiable, so England has identifiable by law– – Yeah.
– but not known. – I see.
– So– – Can you just define those– – Known donors is family members– – Family members.
– You know the donor when they are donating to you.
– Yeah, yeah. – You know who the person is.
– Identifiable is somebody not your family–
– Who is– – but you could identify, okay. – could identify, and legislation in different countries is different, but normally the legislation allows people to have access to the
identity of the donor after a particular age, 16, 18, depending on the countries. So, those are identifiable. Whether those donors are
going to be identified depends first on whether parents are going to be telling their children
that they are donor conceived. So, and, this is the issue about secrecy. Anonymity does not require secrecy. People who are anonymously, who have used anonymous donation, can tell their children, for example, in the United States, our
clinic is an anonymous clinic, but parents have lots of information. We actually did an empirical study about what kind of information
parents give their children. So, it’s anonymous. They don’t have the identity of the donor, but they have lots of
information about the donor, and of course genetic information is one of the aspects of that, but they have hobbies. They have lots of things that
they can give their children if they choose to tell their children that they have been
conceived by a gamete donor. The empirical evidence shows
that there are no differences in disclosure between
countries that have anonymity and countries that have
identifiable donors. So, anonymity itself is not a reason for lack of disclosure, for secrecy. Countries like England, again, where this is identifiable, or Norway that had it even before England, still the rate of disclosure
to children is very low. So, those are important
differences in the issue of secrecy because there is this confusion between secrecy and anonymity, which– – You are very right. Absolutely, extremely good point. Now, anonymity has not been practiced in the large scale in Iran–
– Right. – and no rule. We have got to see what,
if the law is passed, what they say–
– What the implications are, right.
– and how enforceable it’s going to be.
– Right, right, right. – So, that I do know. But, I do know from what I know, that the parents through result of secretly receiving the gamete– – Right, right.
– do not disclose it to their child either.
– Right. But that could happen
even if they were known and even if they were identifiable. – But, those clinics, which
I know are practicing, they are choosing the donors, they bury them so deep–
– Right. – it’s not identifiable. – Right, right, no, again,
Spain has anonymous donation. By policy, it is illegal to, so parents cannot get access
to the identifiable information is simply illegal. So, clinics, whether they have it or not, they are not giving it to anybody, so that’s what anonymous obviously means. But there is this issue about, again, whether having policies
about having identifiable, the possibility of identifying, makes disclosure more likely. And, the evidence doesn’t
show that that’s the case. No country in the world
that has anonymity, I mean, that has gamete donation,
requires for parents to disclose this information. The only way to do that would be either you require for clinics
to put that on the birth– – But, in Iran, we are in the hand of the ayatollahs (laughs). – Yes, they might do that. – Because any–
– Yeah. – any bill that is
approved by the parliament then goes into the Guardian Council. – Right.
– There are 12 jurists. Six of them are conservative,
religious Islamic jurists. – Right.
– And, they have got to approve it before it becomes law. – Right.
– So, there are so many hurdles to jump over. – Right.
– We don’t know what the outcome is going to be in Iran.
– Yeah, the outcome is going to be.
– I’m talking about the ongoing practice, and I want to apologize
to Marcia about Lebanon– I think they don’t do sperm
donation in Lebanon (laughs). – Limited, but they do, yeah. – Cause of course Lebanon, the Shia in Lebanon obviously do practice the third-party donation. – And people are slipping over to Lebanon to do this (speaks away
from microphone) yeah. – And I saw the Lebanese
in the Iranian clinics. They come from Lebanon, too. – [Man With Glasses] Okay, Susie. – [Susie] (speaking away from microphone) so it’s an institutional sort of policy saying we don’t, sorry, we’re not doing this anymore. I wanted to know a little
bit more about that just hearing a little bit more about you’ve given some information about what sort of things were happening. But, I was wondering whether
it was a kind of practical issue, is it because
the clinics are thinking this is a headache and it’s just too much or because they’re seeing social problems and therefore wanted to
prevent it in that way or was it because the time management and they just were having–
– All of that. – Okay.
– All of that. It’s just mainly prompted practical, and as Marci said basically
the infertility clinic becomes a platform for contesting kinship, if you’d like. And, I did give you one
example, I think, yesterday about this couple, but on daily basis, the
clinics are encountering these kind of things or it could
be about payment, you know, people didn’t pay me enough. – And then that’s
informing what’s happening at the state level. Is that– – Leading pioneers the way
all of these technologies have been approved is that
the leading practitioners, medical practitioners, engage
with the senior jurists they organize conferences
and they debate it, then they make it public, and it leads to fatwas
by various ayatollahs. And some of them, they don’t
do it obviously, you know, they are against all this, but then everybody can go by the fatwas of those who say you can do it. So, there is a lot of room for choice. – [Woman In Blue Shirt]
I wonder to which point the admissibility of
third-party gamete donation by Iranian Shia jurists is not
also a question of identity a way to profile themselves vis-a-vis their Sunni counterparts. I don’t doubt that there
is doctrinal consistency in this, I mean, that their admission of third-party gamete donation is, I mean, I don’t question that their
arguments are well-grounded et cetera, but I wonder
whether there is also, in this admission, or in this
decision to admit a practice that is forbidden by
their Sunni counterparts, is there an issue of identity,
a way of distinguishing themselves, or of saying, “We are better. We are more–” – [Soraya] Well, it’s
very interesting question because as I said (speaks
away from microphone) and if the law of embryo
donation was passed as a law, all the senior clinicians
came and said the law says only Muslims can donate embryo to Muslims, but it doesn’t say whether the Sunni can give to Shia or not. We have got to go to such and such– – [Man With Glasses]
Early Muslims, you said? Early Muslims? – Sorry? – [Man With Glasses] Oh, only Muslims. – They said only Muslim. Oh yes, I mean, it doesn’t
apply there, only muslims. But, I have had several
non-Iranian Sunni Muslims who have approach me saying,
you know, “We would like to go to Iran and try the IVF.” And then I’ve written
to my contacts in Iran to doctors sort of saying,
“Can these people come and see you?” And they say, “Well, we have to clarify because certain of these
technologies are applicable to Sunni as well as to the Shia, but certain we have to get permission from an ayatollah if the
infertile people are Sunni.” So, there are lines drawn– – [Man With Glasses]
But isn’t it also true that some Shia scholars also align more with Sunni rather than Shia when it comes to objecting to some of these gamete donation and surrogacy. There are some Shiite scholars who follows these procedures as well. – That was in the paper. That there are three sort of groups. There are the ones who really
just are like the Sunni and say that this is all wrong. There are some who will allow some of it. And there are some who are
completely permissive, right? – Yes, yes.
– But, I do wanna say, I’ve written this, there are Shia gametes going into Sunni bodies. There really are (laughs). (forum members laugh) I must say, you know, there are. There are a lot of Sunnis who
know they are not supposed to be doing this who
come to Lebanon and Iran to get especially egg donor. Egg donor is the main global movement. You know, and actually, I
mean, I always say it’s like shows the compassion of husbands. And, in terms of the justification, it was that if you don’t
provide donor gamete, it’s going to cause the
marriage to break up. It’s gonna be bad for women. It’s going to be
psychologically devastating. And actually Ayatollah Khomeini
said it’s to save marriages. We talked about that yesterday. It was justified to save marriages, and, so, use donor egg
it’s gonna prevent a woman from being divorced by her husband was almost a feminist argument, but yeah, yeah. – [Man With Glasses] But, that goes back to the issue of necessity again. How can this be evaluated
on the scale of necessity? But, again, this is
from a Sunni perspective rather than a Shiite perspective. – What was the question? – The question, necessity. Whether you can justify
that to save marriage or whether that can qualify as
a I guess a necessity or not. But, that would be an argument.
– I mean, some of these fatwas are interesting. For example, Ayatollah Khomeini was asked whether a donation was
allowed, third-party donation. He said it is allowed as long
as there is no touch or gaze. But it doesn’t make it
clear touch and gaze between who and who. Is it between the
practitioner and the patient? And, also, when I look at
some website, for example, Shiite Iranians from India,
right, to some clinic in Iran, and saying, “I want to
come and get treatment, but I want a Shia egg.” (laughs) We all Shia and as if
a egg has got a gender. I only want a beautiful, Shia egg. (forum laughs)
– Gametes carry a religion. – There is this issue of Sunni, Shia, but of course we have got a
very small minority Sunni, 5% of Iranian population is Sunni. But, we do have a lot
of Sunni, as you know, come cross to get treatment. – [Man With Glasses] It’s
very interesting to see these developments that
have been happening in Iran over the years when it comes to these sort of reproductive technologies. And I see, you know,
initially there was this move to allow third-party donation. And, I read your chapter
on the downside of that. And, then, now, we hear
about anonymous donation. And, then, seems as if we’re going back to third-party donation. And, then, how people are going to deal with these side effects, if you will? Will there be some sort of
phenotypical kind of analysis when people receive these,
or shop for these gametes? Are these things discussed,
for example, or not? And, another point in
your paper, in abstract, you talk about purity of the blood. So, I was not clear on how
this sibling kind of donation is categorized or is accommodated. So, does this mean that when this happens then people can use their names? Like, if a sister gets a egg
or brother gets the sperm from his brother, for
example, he still can attribute the resulting child to himself rather than to his brother because earlier we heard some juristic discussions about, you know, paternity
or lineage that should be attributed to the genetic
kind of contributors or the progenitors, right. Does that also apply in the case of sibling donation or not? – [Soraya] Well, in the case
of sibling donation, I mean, donation, I’ve seen
women sitting in a clinic who don’t know each other, I mean, one is a donor, the other
one has come from fertility, and they talk to each other, and suddenly, one woman turns
to the doctor, and says, “Please, doctor, I’ve got too many eggs. This poor woman hasn’t got any. I’m happy to give some of
my eggs to this woman.” Emotions come into it. Anybody can donate. But, the doctors are very
worried because they said, one woman, who is a donor, comes here and then goes to the next clinic and to the next clinic, and we keep saying you can’t do that because you’re creating so many, you know, the pool, I mean, you are giving your eggs to so many clinics. But, there is no controlling them. There is no enforcement basically. But when it comes to relatives’
donations, sibling donation, there are fathers who
donate sperm to their sons. Brothers who give sperms to each other. And, this is seen as a good thing. This is good. Not from charity point of view good thing, but because you are keeping
it all in the family you are continuing the blood lineage. Therefore, it has got to be good, better than disrupting the lineage and getting a gamete from somebody who you don’t know who it is, although all the medical
tests may be done. – [Man With Glasses] But,
in terms of attribution, the resulting child is
attributed to the donor or to the intending kind
of parent or the recipient. – What applies to the donor? – [Man With Glasses] The lineage. The lineage attribution of the
child is attributed to who? – Well, that is interesting
because the child, the way the fatwas are given, the child belongs to
its biological parent. – [Marcia] The donor.
– The donor. – [Man With Glasses] Even within sibling? – The donor. – [Marcia] But take the name–
– But take the name from the social, the adoptive parent. However, and one of the fatwas, it says that there is the
donation is based on consent in other words the donor,
the biological parent, transfer all his rights,
including the biological ownership of the child, to the receiver,
to the adoptive parent. So, it’s based on consent. This is among those fatwas
which are in favor of donation. – [Man With Glasses] Okay. The final point about
this biogenetic connection that we have been talking about. So, do you see a move away from this with this anonymous donation that some how we are moving away from this biogenetic? – But, it will have to
be if it can be enforced. Then, you know, the clinics, you can’t bring your sister or brother unless if the sister comes as
an anonymous person, I mean, a donor, who’s not related. But, I think that’s less
likely for this to happen. – I apologize, too,
because the paper you have was submitted on your deadline, and of course it’s
changed a lot since then. So, I guess, I wanna say a few things. First is, if we were to
have this conversation next year or in two more years, probably all the things
we’re talking about will have gone away, and we’ll have new problems. (speaks away from microphone) You said this morning
something in the van over, that I hear all the time, that the law isn’t keeping
up with these technologies, and I would also say that the ethics isn’t keeping up with
the technologies either. More importantly, probably,
the ethics isn’t keeping up. I make the point early on
in the paper about the book that my sparring partner
at Stanford, Hank Greely, has written, “The End of Sex”, where he is sort of imagining in 50 years that all babies will, of course,
be made in the laboratory because why would you want
to leave anything to chance. If you’ve seen the movie
“Gattaca”, why would you want to have a low-tech, old-fashioned baby, when you can have a high-tech baby? You know, synthetic eggs and
synthetic sperm are being made right now at the mice level. We’re already looking
at uterine transplants, and that will probably
be the stepping stone to artificial wombs. I said yesterday that we now
have babies without having sex, and pretty soon we might
be able to make babies without even needing human beings because it will be a technological child that’s been created. If we look at CRISPR technology right now, all of this starts with
helping somebody, right, you know, Louise Brown was
helping Mr. and Mrs. Brown have a baby. CRISPR technology is being
touted has helping people have a mitochondrial,
genetic, disease-free baby, but of course the concerns are the ethics of CRISPR technology. I was at the Beings
Conference a few years ago in Atlanta, Georgia, and Margaret Atwood was one of the speakers, Margaret Atwood of the
famous “Handmaid’s Tale”, and she was sparring with Steven Pinker. And, Pinker’s ethical slide
came up on the big screen, his ethical mandate
was get out of the way. Let science do what science does. And, Margaret Atwood,
only as Atwood could do, with her purse hanging on
her shoulder at the podium, I thought that was pretty cute, said, “Well, I guess
we just need some young Hollywood people to write a script of the disaster that’s coming our way,” which, of course, I resonate
a lot with Margaret Atwood. I spoke yesterday about the data and then, you know,
that I tracked the data in the US as far as IVF cycles and success and success is measured in live birth. And, the most current data we have, and this comes through the
Centers for Disease Control, is the 2015 data cause it takes
awhile to closeout the year, collect all the data,
analyze all the data, and issue the report. It showed that in 2015,
we had 182,111 artificial reproductive cycles in the US, and that resulted in a
little over 71,000 births and a little less than 60,000 live births. Live birth is just a
baby that’s born alive in the labor and delivery unit, that doesn’t mean that they
live five minutes or 10 years, it’s just that they are
documented as a baby born alive. I lamented yesterday the
fact that we don’t track, we don’t monitor, we
don’t watch egg donors over the history of their life once they become an egg donor. The Institute of Medicine
and National Resource Council published a document in the early 2000s, it was a document around the
debate around human cloning and the need for eggs for research, and, of course, they listed
the acute risk to the egg donor is ovarian hyperstimulation syndrome, problems with anesthesia,
and surgical complications and stroke. And, then, of course,
the longer term risks that they outlined in
the report were breast, ovarian, endometrial cancers. They also made the
point that other cancers couldn’t be ruled out,
too, because of the impact of the hormones that the donors take. When I talked about the paper, that we had difficulty getting published, the five case reports, part of our hope in
publishing that paper was to compel the industry to
monitor, track, follow, whatever, and that has not happened, but what has happened
is three more egg donors have stumbled upon this
paper and contacted us because they’ve now been
diagnosed with breast cancer. So, we’re looking at kind of what to do with these more cases
that are coming forward sort of like the early
smoking tobacco debate when Big Tobacco was saying,
“There’s nothing wrong. Please smoke. It’s fine.” But, again, the fact that we don’t track, we don’t monitor, we
don’t have any of these long-term studies. Moving onto surrogacy,
there’s a couple of reports that have come out recently,
one just a few months back in “Fertility and Sterility”, and one came out about two years ago now, Loma Linda University, which is a hospital in my backyard in the state of California. But, the “Fertility and Sterility” report called “Perinatal Outcomes
After Natural Conception”, so comparing a natural
conception, a natural pregnancy, with IVF used in the
gestational surrogate, the authors found that the neonates born from commissioned embryos,
embryos made from IVF, and carried by the gestational
surrogate, (clears throat) have higher incidences of preterm birth, low birth weight, maternal
gestational diabetes, hypertension, placenta previa
compared with live births that were conceived spontaneously and carried by natural mothers. And, the authors also found
that these gestational surrogate pregnancies were
overwhelmingly delivered by C-section, even
though caesarian section was not necessarily indicated. Part of the C-section
delivery is trying to impact negatively that maternal-child bonding, not allowing that mother
to labor and deliver those children. The report that came out of Loma Linda by Dr. Allen Merritt and his colleagues, Merritt is a perinatologist that works in the neonatal intensive care unit, so he was just observing
all this sort of ill health and prematurity at his hospital. And, his article came
out in the “World Journal of Obstetrics and Gynecology”,
“Outcomes of Surrogate Pregnancies in California
and Hospital Economics of Surrogate Maternity and the Newborn Care”. He looked at two years of
surrogacy in his institution, from 2012, the beginning of
2012, to the end of 2013, and he found that increase
in multiple births, neonatal intensive care
admissions, length of stay, and hospital charges beyond that of naturally conceived children. And, he even saw that in just singletons. So sometimes the argument is, you know, these complications that
the surrogate mother has is because she is often
carrying high-order pregnancies, you know, twins, triplets, or quadruplets, but he found that also amongst singletons. They had a 26 time increase in charges in the single birth of a gestational surrogate mom, a singleton. And, in triplets, they
saw 173 times increase in hospital charges. And that all just translates
to the high-risk nature and the complications and the
longer hospitalization stays. I think I wanted to, let’s see I had a couple of other, oh, moving on to the children
are alright argument. “The New England Journal
of Medicine”, one report, children born through
assisted reproduction are much more likely to suffer, again, low birth weight, very low birth weights. Children conceived through
IVF, another journal talks about the epigenetic issue
that I discussed yesterday. You know, that’s a whole new
field that we are starting to understand, the gene
expression, the turning on, the turning off of genes, and that’s implicated by the birth mother whether she’s going to
be the surrogate mother or the natural mother. “Journal of Child Psychology
and Psychiatry” found that surrogate children
showed higher levels of adjustment difficulties at age seven. The absence of a gestational
connection to the mother may be more problematic. The study also reported that
there might be under-reporting cause intended parents want to promote that their children are just fine. I think that’s it. But, I guess what’s most
troubling to me is the dichotomy between seeing the infertile
couple as the patient but seeing the third party as the vendor. So, in one instance, our attention is toward the intended parents. What do they need? What do they want? What do they desire? And how can this third
party be accommodating in meeting those needs and not necessarily being attentive to the ill health or the damage or harm done to them? In the sphere and the spirit of medicine, that’s supposed to operate
in a do no harm model and not have this commercial,
contractual overlay that I think is problematic. So, anyway, hit me with your best shot. – [Inmaculada] So, I have
been working on issues of reprogenetic technologies
for many, many decades, so it’s always tricky to
use these kind of arguments to reject these technologies
or to object to certain uses of the technologies. And, again, I’m not
particularly sympathetic to many of the ways in
which these technologies are being implemented. So, it’s not that they can be accused of being sympathetic to
the needs of the couples who use these technologies. So, that argument doesn’t work for all of the objections
against repro technologies. But, it is tricky to use this arguments because one thing is to say
we don’t have enough data about X, which might be true, at least about certain aspects
of reprogenetic technologies we don’t have enough data, but that only calls for more data. It doesn’t call for, you know, a questioning of the technologies. If we say these
technologies involve risks, that means we do have the
data about those risks, and then people can choose
to take those risks, which is what many people
would say when you tell women who use reprogenetic
technologies that you have an increase risks of
multiple births, well, and they can choose to take those risks. We assume they are properly informed, in so far as there is evidence for this. So, either we argue that there
is no evidence whatsoever, which is not the case, that the evidence is limited, but we make choices with
limited evidence all the time, when there is uncertainty
and when there are risks, so this is not particular
to these technologies. This the case for most
medical technologies. So, those arguments are not strong enough to either oppose the use of certain ways of using these technologies or to reject the technologies at all. – I disagree. I think it’s one thing
for you to make that case, and I would agree, in the
case of the intended parents, you know, here’s what we know,
here’s what we don’t know, here’s what we think, do
you want to move forward. I think that’s a whole
different thing though when you’re going to a
third-party, healthy person, asking them to make a
decision to do something there’s no medical indication
for them to do this. It’s not like I have cancer, and I’ve been told the pros and cons, the harms, the risk of a
certain type of treatment, and then I weigh those. I think that’s much different. But, in the setting of
the the surrogate mother or the egg donor where there’s absolutely no medical indication for her
to do any of this to her body. And, the corruption, I think,
of many coming into that, which we don’t see in medicine elsewhere with organ donation or– – So, those are two different issues. So, one issue is whether people can choose to take risks even if they
don’t get any medical benefits. So, clearly people do take,
do choose to take risks even if they don’t get any medical benefit like, for example, egg
donors or surrogates. Now, how free that choice is is an issue. You know, again, in
particular context that choice might not be very free, but in other contexts it might be as free as any other choices that we might have. That’s different from can
people choose to take risks because they have financial benefit. And, we do that all the time. In all context of our
lives we choose, again, I put choice here between quotations because how free that
choice is is going to depend on many things, but being a
police person is obviously risky, and people become
police people for money not for the–
– I don’t think pregnancy is a job, so I don’t take the– – That might well be the case– – And, I don’t–
– That’s a different argument. That’s a different
argument that people choose certain kinds of activities
because they are risky or because they have information. Then, the argument is pregnancy, or certain aspects of human life, should not be commercialized or should not be sent to someone else. That’s a different argument. Has nothing to do with risks. It has nothing to do
with information then. – [Man In Purple Shirt]
Sure, people can voluntarily agree to take on risk, but then when you look at
things sort of systematically, you notice that the way society
ends up apportioning risk is that risk ends up
being sort of shunted off onto sort of certain classes
of people on society. So, it may be in fact, for example, that a lot of people find
military service very fulfilling. But, who ends up
enrolling in the military? People from the working class, right. And so society just chooses,
as a matter of fact, well, maybe they don’t even choose this, but the way society is structured, that risk is borne by
people of a certain class. And, you see that again and
again and again and again. The risky industries are
sort of populated by people who are not from the middle
or upper-middle class. I grew up in an upper-middle class family. I don’t have friends who
work on fishing boats or who enrolled in the military or who went to be police officers or signed up to be surrogates
or things like that. And, so, when you look at it, not in terms of individual choice, but you look at the sort of whether there’s an
institutional injustice being perpetrated maybe the
concern, then, becomes is this just another sort
of the piece of the puzzle of wealthy people sort of offloading risk onto people who are
vulnerable to taking on risk just because of the way society is setup such that they are faced
with these kinds of choices. So, maybe this is sort
of a sympathetic way of looking at that. I have very deep concerns about the kinds of genetic engineering that
Jennifer is talking about, but I assume that these are
maybe more widely shared. – [Inmaculada] I agree. But, again, that’s an issue
about distribution of risks that affects all kinds of activities not just these activities. And, that is, obviously, a
criticism that we should have of all of these activities. But, it’s not particular to
reprogenetic technologies. But, yes, no, of course, I agree that– – But when I think of medicine, I think this is a new
deviation in medicine. It’s different than I just want to grow up and be a police officer, and I
know that that’s a risky job. Or, I wanna, you know, wash
windows on high-rise buildings or something like that. But, this is a deviation in medicine. It is willing to risk one
person’s potential health because we need something from that person for somebody else. – We do that in clinical
research all the time. – I’m sorry, what? – We do that in clinical
research all the time. Human subjects– – But when you–
– put their lives at risk for the benefit of other people. That’s what research does. – Okay, but IRBs and the
clinical research project is all built on–
– Yes. – safety and steps.
– Correct. But then it’s not that
this is an exception in medicine it’s that the
fact that we don’t have IRBs in these other
contexts is an exception. But, medicine has been
putting people at risk for another benefit.
– Of course, of course. Alright, yeah, I agree. But, I don’t think that that’s ethical. And, I think that–
– No, no. – that’s problematic. – That might well be the case.
– And, I think when you look at how an IRB or how a
new drug comes to market or how a new procedure
is done it starts out with heavy, rigorous steps. And, those steps are all about safety. And is it safe to move to the next stage in the clinical trial. Is it safe to move from animal
testing to human testing? You know, which is our
concern with CRISPR. It’s all at the animal trial now, and everything around it is
“is it safe?”, “is it safe?”, “is it safe?”. – But reprogenetic technologies– – They don’t have any of that
luxury for the egg donors. – Reprogenetic technologies are well-known for having very little testing before they have gone into the clinic. Most reprogenetic technologies have gone from mice to humans.
– I know. I mentioned yesterday Gina Corea’s book, “The Mother Machine”,
where she recounts decades of research on women, often
not even with their consent, often not even with their knowledge. If you read Lisa Mundy’s book,
“Everything Conceivable”, she talks about one of the
leading in reproductive endocrinologists in San
Francisco, in my backyard, who literally describes
it as throwing spaghetti on the wall and seeing what sticks. If you follow egg-freezing technology, every year, we have a new and
improved way of freezing eggs. We have a new and improved way. We have a new solution. We have a new machine. This is human experimentation. We’re learning as we go, and often times the children
are really the unconsenting research subjects. – I want to comment
something else to consider, and I think there is here a risk a greater risk of commodification of reproductive capacities in this field maybe more than others because, for instance, thinking about
how we manage to, let’s say, take out this consumerist
background for organ donation compared to reproduction. I think Glenn Cohen, right,
that I mentioned earlier talked about this problem
of commodification in reproduction technologies. – (speaking away from microphone) – Have I looked at it? I’ve met non-commercial surrogates. – (speaking away from microphone) We do have surrogacy, but
it has to be non-commercial. And, in terms of the baby,
at the end of the process, it’s the birth mother
that’s considered the mother until parentage is
transferred to the parents. So, is that different model
something that tackles some of the issues? – I think if you look at
the studies that I quoted that were Allen Merritt’s
study in the “Fertility and Sterility”, these high
risks has nothing to do with the mother’s being paid or not. Just because if you remove
the monetary compensation it doesn’t make these risks
and these hospital stays and these situations with
the children go away. I also think, I’ve seen
it in my own country, I mean, you can look at
New York state right now. New York state does not allow surrogacy. And, there’s a bill that’s been introduced in New York state to allow
commercial surrogacy. And, the argument by the
senator, who’s drafted the legislation, is if we don’t pay women, we won’t have women to meet the demand because how many altruistic
surrogates are out there willing to be nine-months pregnant and not be financially compensated. We know it’s gonna be a smaller number. That’s always been the debate
around gamete donation. We take the money out of
it, how many women will literally donate their eggs? How many men will donate
their sperm for free? The numbers will not meet the demand. – [Man With Glasses] I see most
of the comments or questions they go back to the issue
of the evidence or whether it is reliable evidence
or whether the evidence is sufficient and whether
the cases that, you use, for example, to make
this (mumbles) critique some at least applications of epigenetics or reprogenetics or
(mumbles) technologies, whether they are
representative of reality. Whether there is a counter evidence. – [Jennifer] I don’t know
if I have anything to say, to add to that. I guess what I’m really
struggling with in this room, and perhaps in my work
larger, is why are we willing to perhaps make some people sick. Something with their
body that they don’t need to do with their body. I don’t understand as a
matter of public policy, public health. I don’t understand as a
matter of the common good, and our shared concern for humanity. And, of course, my larger concern is– – [Man With Glasses] I think that– – is in the spirit of medicine, when medicine is supposed
to be a healing, treating, relieving of suffering discipline. – [Man With Glasses] I think
this is a very good question, but people who serve on IRBs, all find they struggle with the two competing concentrations. On one hand, they care about
safety and confidentiality of their subjects. On the other hand, they
don’t want also to prevent science from progressing. There is this at least assumption that science is meant to
kind of provide solutions to society, to humanity. So, there’s always these
competing considerations to protect people, but
also not to hinder science. There are no easy kind of
answers to these issues I guess. And I’m afraid we will
have to leave it at that because as I said I don’t
think we are aiming here for consensus because there’s
no consensus on these issues. So, I will just have to leave it at that.

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