November 14, 2023 • 28 mins
When Laurie Strongin’s son Henry was born with the rare, often fatal disease of Fanconi anemia, doctors told her that the best way to save his life was with an umbilical cord blood transplant from a genetically matched sibling. But Henry had no matching siblings. Laurie and her husband then got a call from a doctor with a novel idea of combining three technologies to create a child who was guaranteed to be a genetic match, raising the question: is it ethical to create a life in order to save another?
Show Notes:
In addition to Laurie Strongin, this episode features interviews with:
John Wagner, Co-Leader of the Transplantation and Cellular Therapy Program, Professor in the Division of Transplant and Cell Therapy in the Department of Pediatrics, and the McKnight-Presidential Endowed Chair, Department of Pediatrics, Division of Pediatric Blood and Marrow Transplantation & Cellular Therapy, University of Minnesota
Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics
You can learn more about Fanconi anemia, learn about the latest research, and find resources for those affected by the disease here. You can read more about the Strongin-Goldbergs’ and the Nashes’ stories in this New York Times article from 2001.
Laurie Strongin went on to found the Hope for Henry Foundation, which works with hospitals to help provide support and better care for pediatric patients.
To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide.
The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
I got pregnant right away, and I had a really
easy pregnancy. I felt great, I exercised, I did all
the prenatal career one is supposed to do. Around week
thirty seven, the doctors determined that he was breach and
so scheduled a sea section, and I went in very
(00:23):
excited to become a mom.
Speaker 2 (00:25):
When Laurie Strong and Goldberg arrived to give birth to
her son, Henry, it was the first time she'd been
to the hospital since the day she herself was born.
She'd always considered herself a healthy person and her husband
was too.
Speaker 1 (00:39):
I had had very little experience in the medical world.
Speaker 2 (00:44):
That that was about to change.
Speaker 1 (00:46):
I had a sea section, so they had to kind
of like bring him up to where I could see him.
And as they did that, because baby's hands are sort
of wrapped up around their faces, the doctors noticed that
he had an extra flap of skin on his right hand.
Speaker 2 (01:05):
The baby was whisked away to the nick cue before
Laurie even got a chance to hold him, but she
figured everything would be fine. She's an optimist. She celebrated
with her friends and her husband in the recovery room
until the doctor came back.
Speaker 1 (01:20):
He explained that Henry had a serious but not uncommon
heart defect called tetrology a flow, and he showed us
a picture of a healthy heart and a heart of
tetralogy a felow, and seriously, my husband and I could
not tell the difference. So I remember having this feeling
like you must be in the wrong room, like you
(01:42):
you should be next door or down the hall or somewhere.
You couldn't vastly be talking about our child.
Speaker 2 (01:50):
But he was, and the news only got worse from there.
Two weeks later they learned the cause of the flap
of skin on his hand and the heart defect, and
that the two things together can be a sign of
a fatal genetic condition called Fanconi anemia.
Speaker 1 (02:06):
And our life just took a ninety degree turn.
Speaker 2 (02:11):
That meant Henry would need a stem cell transplant to
save his life. Henry's doctor told Laurie and her husband
that the best way to save their child was a
stem cell transplant using the umbilical core blood from a sibling,
what people in the medical community refer to as a
transplant from a matched sibling donor. At the time, a
(02:32):
stem cell transplant was possible from unrelated donors that the
likelihood of success was much lower.
Speaker 1 (02:40):
Absent a sibling donor, he had a zero percent chance
of living till kindergarten. In the meantime, he was going
to have to have open heart surgery when he was
five months old.
Speaker 2 (02:52):
Henry survived the surgery and recovered well, and Laurie and
her husband, who had always wanted three kids, started trying
for their next time one.
Speaker 1 (03:01):
Our life quickly became essentially just playing Russian Roulette with
our children's lives, right because the disease is genetic, and
every time we had a baby, we had a chance
that the baby would have the same fatal disease as Henry,
and we had a chance that the baby would be
(03:23):
a perfect match. And so life got scary, really almost
at the moment of parenthood.
Speaker 2 (03:34):
I'm Lauren and Rora Hutchinson. I'm the director of the
Ideas Lab at the Johns Hopkins Berman Institute of Bioethics.
On today's show, we'll go back to the late nineties
to the first ever attempt to create a save your sibling.
Is it ethical to create a life in order to
save another? From Pushkin Industries and the Johns Hopkins Berman
(03:56):
Institute of Bioethics. This is playing God for Laurie Strongen
and her family. The task at hand was to figure
out how to save their child's life. They also wanted
to have more children. Each time they did, they'd have
a chance about nineteen percent that an embryo would be
(04:18):
both free of the disease and a match for Henry,
and if the pregnancy was successful, hopefully save his life.
But that also meant that about eighty percent of the
time they wouldn't get the right combination, let alone have
a successful pregnancy. In the meantime, though Henry was growing up.
Speaker 1 (04:40):
He was fun, playful, and just a spirited, brave kit
So it was very easy when anyone was with Henry
to completely forget what was looming ahead because his life
was so not just normal, but just magical.
Speaker 2 (05:02):
When Henry was still a baby, Laurie became pregnant with
her second child, a boy named Jack.
Speaker 1 (05:08):
And we found out when we got the test results
that our second child, who is now my twenty seven
year old son, Jack, was healthy, and that was everything
to us. We also found out he wasn't a genetic
match to Henry, but at the time Henry was like
six months old, his blood was totally normal, and it
(05:30):
felt like something that was far out into the future
and we weren't worried about it.
Speaker 2 (05:36):
During her pregnancy with Jack, Laurie learned something else too.
Speaker 1 (05:41):
We got a call from a doctor who said, what
would you do if I told you you could knowingly
get pregnant with a baby who's healthy and a perfect
genetic match to Henry? And I said, yes, that sounds like, uh,
(06:03):
you know, too good to be true.
Speaker 2 (06:08):
Eventually, lots of doctors would become involved in caring for Henry.
One of them was John Wagner, based at the University
of Minnesota. John studies novel therapies to treat fanconiananemia and
other causes of childhood cancer.
Speaker 3 (06:22):
We know that there was urgency, but it wasn't an
immediate urgency in that Henry was doing okay, So we
had some time, not indefinite, but some time.
Speaker 2 (06:32):
John thought, if we can create embryos by IVF and
then screen the embryos for genetic diseases, we can also
screen to see if they would be a genetic match
for a sibling with Fanconi anemia, using a technique called
pre implantation genetic diagnosis or PGD. John's team would determine
where the embryos were negative for fanconianemia and a genetic
(06:55):
match for Henry. If they were, blood could later be
collected the baby's umbilical cord and used as a stem
cell transplant. Using cord blood for a stem cell transplant
was still experimental at this time, and this particular combination
of technologies had never been used to create a savior sibling.
Speaker 3 (07:15):
Laurie was very eager to try this because there was
no good other options for her at her child, so
we began the process.
Speaker 2 (07:26):
The new process went like this, Laurie and her husband
would have embryos created by mixing her eggs and his
sperm in the lab, and then genetic tests would be
performed on them to see if any were negative for
Fanconianemia and a match for Henry. If they were fortunate
enough to get the right combination, doctors could implant the
(07:48):
embryo into her uterus and the resulting baby would be
free from disease and their umbilical cord blood could be
used to save Henry's life.
Speaker 1 (07:58):
The stakes were so high and at this point now
he's almost three, and remember when he was first diagnosed,
they said, he's going to need to have a transplant
by the time he's five, and a pregnancy takes nine months.
That's what it takes.
Speaker 2 (08:16):
So the clock was ticking and this approach had never
been successfully done before. But John and his team were
working with another family at around the same time to
try to create a sibling donor.
Speaker 3 (08:28):
Concurrent with Lourie Strongen and Alan Goldberg's attempt at having
a baby, there is also Lisa and Jack Nash, who
was the other family that was undergoing the procedures in parallel.
Speaker 2 (08:43):
The Nash's daughter Molly was around the same age as
Henry and also had fanconi anemia. Her disease was progressing
rapidly and they were running out of time, but as.
Speaker 3 (08:55):
Luck would have it, Lisa Nash was then pregnant. During
the pregnancy, we were concerned that we might still not
have enough time, but as it would turn out, in
August twenty ninth, two thousand, Adam was born.
Speaker 2 (09:11):
Adam Nash was the first Savior sibling to be born
via this new combination of technologies, a medical triumph. As
for Laurie and her family, they did IVF and the
embryos were tested but the first round was unsuccessful.
Speaker 1 (09:27):
It was really hard, but the promise of it was everything,
and so we just went back and did it again. Ultimately,
I went through IVF nine times in three years, and
it was absolutely devastating. And then I'd come home and
(09:47):
I'd see Henry and Jack and I'd be like, no,
he's not I can do this again.
Speaker 2 (09:53):
Laurie had been doing everything she could to conceive through IVF,
but meanwhile Henry was getting sicker. He would need to
have a stem cell transplant as soon as possible. Eventually,
they got to the point that there wasn't time for
another round of IVF, let alone a nine months pregnancy.
John had to make a tough call.
Speaker 3 (10:15):
I told them that I think that we have no
more time. We're going to have to go with an
unrelated donor. We can't keep doing this indefinitely, even though
I knew that Laurie's heart that she wanted to continue,
but on the other hand, we didn't have more time.
Speaker 2 (10:33):
Henry would need to proceed with a transplant from an
unrelated donor who was as close a match as they
could find, but they knew the odds of success would
be much lower than with a savior sibling.
Speaker 1 (10:45):
Henry ended up in the hospital with a problem due
to his low platelets, and we ran out of time,
and the very best chance at that point for him
to have a life life was to go to transplant.
Speaker 2 (11:04):
He lived for two difficult years after his transplant, but
much of that time was spent in the hospital. Laura
and her husband did everything they could to normalize life
for him there and give him a semblance of childhood.
On December eleventh, two thousand and two, Henry passed away
at seven years old.
Speaker 1 (11:26):
He was so brave and resilient and funny, but ultimately,
fanconi anemia is a tough adversary, even for the strongest
and the bravest.
Speaker 3 (11:41):
I think that, of course, it was difficult for Laurie
and Alan to accept that this was not going to work.
It's almost, you know, given the caret that this is available,
but it doesn't always work. And then they tried and
tried and tried and tried and tried, and it still
didn't work. And then he goes to transplant and then
(12:03):
he dies of a complication from the transplant. And you know,
when I say we, you know because I feel that
I played a role in that you know, really felt
that we tried everything, and I think in part that
made it harder is like, you know, no matter what
we tried, it just didn't work. And we tried and
tried and tried.
Speaker 2 (12:25):
Fanconi anemia is a tough adversary, which is why John
and others looked to novel ways of treating the disease.
But what happens when the treatment isn't just derived from
medicines or techniques, but also materials from another human The
process generated tons of debate about the ethics of creating
a child for the purpose of being a stem cell
(12:47):
donor to his sibling. It was the first time that
PGD was being used not only to choose an embryo
without genetic disease, but also to choose between unaffected embryos
because of their genetic match to another person, and John is,
the pioneer of this new combination, was acutely aware of
these ethical dinammas.
Speaker 3 (13:08):
The principal ethical issues that we had to efface was
that we were testing an embryo for certain genetic advantages
to us and to the child that existed with fancorninemia,
that is HLA match or tissue matching. But that tissue
matching was of no inherent benefit to that baby to
(13:31):
be born. You know, would this child be used as
spare parts? These were the terms that were being thrown
around in those days, which was obviously creating a public response.
The other parts of all this were, you know, what
is the concern that we were going down the slippery slope. Yes,
first we were eliminating a disease. That was a good thing,
(13:54):
but the tissue matching might just be the first foray
into something more such as sex selection, such as choosing
on other traits. All we wanted to do was to
save the life of Henry.
Speaker 2 (14:07):
People outright accused John and his team of crossing lines
that shouldn't be crossed. He found it difficult to respond, what.
Speaker 3 (14:14):
Does this mean when someone says, you know, you're playing god?
How did it go from that conversation where we're trying
to save a life? But what they were focused on
was all those unborn embryos.
Speaker 2 (14:29):
When Laurie went public with Henry's story in two thousand
and one, lots of people had opinions for her as well.
Speaker 1 (14:36):
Some people were like writing it like, why didn't these
people just let these deformed children die? To me, that's
unethical to not try to save your child, to not
fight to avoid like catastrophic medical consequences, that is unethical.
Speaker 2 (15:01):
Coming up, I dived deeper into the ethical questions about
save your siblings with my colleague Jeffrey Khan. Today, stem
cell transplants using umbilical core blood have much higher success rates,
(15:21):
and medical advances make it easier to find an acceptable
match without the need for save your siblings. But back then,
when it was all very new, it was hard to
navigate the ethical implications that came up. When John Wagner
found himself doing this novel work with the Nash family,
the first family he worked with, he called up his
(15:42):
colleague Jeffrey Kahan to get his take. At the time,
jeff was the director of the Center for Bioethics at
the University of Minnesota, where John was working to help
save the lives of children with Fanconi anemia. Today he's
my colleague and director of the John Hopkins Berman Institute
of Bioethics. So as a parent, hearing Laurie's story really
(16:07):
can't help but affect her on a personal level. And Jeff,
I know you're a parent too, and I'm sure we
can just completely relate to how Laurie and her husband
would have just wanted to do everything they could to
save their child, and also how they would have loved
their child that they were trying to create as a
result of all the rounds of IVF that Laurie went through.
(16:29):
But maybe you don't even need to be a parent
to understand that the journey that Laura and her husband
went on.
Speaker 4 (16:34):
I think you're right, Lauren, And I will say on
a personal level, for me, a little more insight in
that I was on the faculty at the University of
Minnesota when this case was unfolding and Laurie and her husband, Allen,
and their kids came to Minneapolis for a treatment for Henry.
(16:54):
I have two sons and they're more or less the
same age as Henry and Jeff, and so it was
very close to home for us. I will say, when
this was unfolding, you sort of have to ask yourself,
what would I do as a parent? Wouldn't I do
anything I possibly could? How can you not try everything
(17:15):
when you're trying to save the life of your child?
Speaker 2 (17:18):
Yeah, of course, So wow, you were really there at
the time as this was all unfolding.
Speaker 3 (17:24):
JEF.
Speaker 2 (17:25):
So, before we go further into hearing more about the
ethical elements of the case that unfolded, could you just
tell us a bit about the existing technologies that were
being used for the first time in a new way.
Speaker 4 (17:39):
There was an ability to make embryos outside the body
through in virtual fertilization that was not such a new
technology at this point, and there was a newer, younger
technology called pre implantation genetic diagnosis or sometimes preimplantation genetic testing,
where a single cell could be removed from a very
(18:00):
early stage embryo by a biopsy. That technology had been
used up to this point to determine whether an embryo
was carrying a genetic disease, and a decision could then
be made about whether to implant that embryo. What was
novel about this was the combination of IVF plus PGD,
not just to determine whether the embryo was going to
(18:22):
carry a genetic disease in this case, fanconi anemia, but
if the embryo was negative for fanconi, we need to
test to see whether that embryo would develop into a
baby whose core blood could then be used to be
transplanted into and save the life of Henry in this
story of the older brother. So that was the kind
(18:43):
of aha, wow, nobody had thought about putting the technologies
that existed. They weren't new technologies, but the combination of
using them in this way was novel and started to
ring all sorts of alarm bells. Frankly from an ethics.
Speaker 2 (18:56):
Perspective, So just to be clear, then with this prestidure,
it's not Crisper's so there's no gene editing going on.
It's purely the selection of the embryos.
Speaker 4 (19:07):
Right, So this is twenty years ago a little bit
more actually, So there wasn't gene editing. CRISPERD hadn't been
discovered yet, So it was really just a way of
making as many embryos as you can, which required you know,
going through IVF and then testing those embryos in the
way that I had described. So it wasn't modifying embryos,
but rather selecting embryos based on the genetic composition.
Speaker 2 (19:30):
But this new technique did raise really big ethical questions
because it was the first time that it was being done.
So could you just bring us back into that twenty
years ago the first time it's happening. What were some
of the discussions in terms of the ethics that were happening.
Speaker 4 (19:45):
The world of bioetics at that moment knew about pgdability
to test embryos outside the body and was really analyzing
the right kinds of things, or the acceptable kinds of
things that this testing could be used for. So the
idea was pretty clear that it makes sense to test
embryos when you're trying to avoid the disease in the
(20:08):
child that will be born. Now important to say, when
you're testing embryos and choosing one versus another, you're not
choosing the same eventual person with and without the disease,
but you're effectively choosing one person versus another, right the
future person. So the arguments were about where's a line
between sort of obvious genetic disease that better for the
(20:29):
child to avoid right having, versus something that isn't really
a disease, or maybe worse that is sort of selecting
to identify traits that we more thought of as enhancements
or physical characteristics like eye color, hair color, height, intelligence,
musical aptitude. What would stop people from using the same
(20:52):
technique not to avoid having a child with cystic fibrosis
or fancone anemia, but rather selecting an embryo that was
most likely to be a musical right or have blue
eyes right and blonde hair. It starts to sound very eugenic,
and so that was the discussion. How do we make
sure that the technology can be used in ways that
seem appropriate and ethically acceptable, but prevent the kinds of
(21:16):
you know, misuses from happening. When no one thought about
this idea of using the same technology to both make
sure you're having a child that will not be affected
by a genetic disease, and while we're at it, let's
make sure there's a genetic match for another sick child
in the family. I mean, that seemed like wow, way
out of bounce to us. No one had thought about that.
Speaker 2 (21:35):
So it wasn't that people were concerned of this procedure,
as it was people were more concerned about what it
would lead to in the future.
Speaker 4 (21:44):
It may sound a little quaint to talk about this now,
you know, in twenty twenty three, because there are companies
that are offering exactly what we're talking about. You can
use genetic testing services on embryos that were created by
IVF and the I'll tell you, you know, the likelihood of
a whole range of things, disease likelihood, but also things
(22:06):
that they claim are about, you know, traits that probably
we would think of as not being diseases. And that's
that's sort of what we were worried about happening twenty
plus years ago, and trying to guide the technology to
be used in responsible ways. Maybe we weren't so successful.
Speaker 2 (22:21):
So, Jeff, at the time when this was unfolding, did
the reactions from the public about the ethics surprise you?
Speaker 4 (22:29):
This took up a lot of air in media. It
was a very widely covered watch story, and you know
a few things that were sort of a little surprising
to me. One was, isn't this planning God? Actually, that
was a question that many many journalists asked, and it
was like, well, no, you're not modifying anything. You're just
(22:51):
selecting embryos that are, you know, otherwise made, and you
make decisions about which to implant all the time. This
is sort of adding a layer of information about which
to implant and why. So that was one. The second
was aren't the parents wrongly motivated by deciding to do this? Right?
They're having a child to save their other child, which
(23:15):
to me sort of harked back to you know, everybody
thinks about having children and why they have children, why
they don't have children, and we don't quiz them about that.
We don't say, tell us why you want to have children.
It doesn't work like that, right, People have children for good, bad,
or no reason. So it didn't make sense to me
to sort of drill down so much on you the
(23:37):
parents to say that their motivation was bad. Well, what
do you mean Their motivation is trying to save the
life of their very sick son in this case, that
seems like a pretty good motivation.
Speaker 2 (23:48):
Yeah, And so that really ties into what I want
to ask you next about the conflict between ethical concerns
and society's perspectives and then individuals rights as families to
decide what to do about their own family. Could you
talk a bit about that tension, how it plays out
in this case in particular.
Speaker 4 (24:08):
Yeah, this case I think is a very unusual one
because of that, the sort of foundational commitments that it
puts in conflict are pretty unusual to see them, you know,
put together this way. So we talked to a fair
amount about when, if ever, can we restrict people's right
to pro create, to have children, and you know, we
(24:30):
don't do that in liberal societies, and that's sort of
a commitment that we you know, some of the recent
court decisions notwithstanding, there's a long history of people getting
to decide for themselves, right, So we're very very careful
in treading on individual decision making about reproduction. So that's
(24:50):
one commitment. The other is we don't take advantage and
exploit children, right, that's another really kind of foundational commitment.
We protect children, and so we don't treat children as
mere means, right. We treat them as ends unto themselves.
And so we have a kind of a case where
it feels like we're on the cost pier of treating
(25:12):
children in a way that would be exploitive at least
and maybe as mere means at worst. But to prevent
that from happening requires us to restrict or tread on
individual decision making about reproduction. That makes it almost impossible
for us to figure out what to do, except to say,
let the parents decide for themselves.
Speaker 2 (25:34):
Thanks so much, Jeff, great to talk with you today.
Speaker 4 (25:36):
Thank you, Lauren. Great to talk to you as well.
Speaker 2 (25:41):
As we heard for Laurie Strong in the decision was
an uncomplicated one. All she was trying to do was
save the life of her son, Henry. But she knows
that it isn't just about her family.
Speaker 1 (25:54):
Here's the thing that I learned. All of us are
the beneficiaries of many people who made tremendous sacrifices as
the first or the second or the third to try something.
And when you're the first person to try something, or
maybe the second or third, you're rarely the beneficiary of it.
(26:15):
Doctors learn, they make adaptations and improvements, and ultimately it works,
and we all have benefited from scientific discovery on the
backs of other people. This one was on my back,
my husband's back, in my family's back. That's how it works.
(26:37):
It was never only about Henry.
Speaker 2 (26:43):
Next time on playing God. Computer control brain implants can
treat diseases like depression and Parkinson's in cases where all
other types of treatment have failed. But these implants can
change more about the brain than the disease they meant
to treat.
Speaker 1 (27:00):
So there were questions about who was actually the narrator
of the life at that point. Was it the technology
or was it the person? Was it some kind of combination.
Speaker 2 (27:10):
When it comes to altering our personalities by implanting electronics,
where do we draw the line? Are we giving computers
too much control over who we are when we allow
them to alter fundamental human traits like our emotions? And
if it's okay to change our moods, what about other
things like our intelligence? That's next time on Playing God.
(27:36):
Thank you to our guests in this episode, Laurie Strongin
and John Wagner. Playing God is a co production of
Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics.
Emily Vaughn is our lead producer. This episode was also
produced by Sophie Crane and Lucy Sullivan. Our editors are
(27:57):
Karen Schakerjie and Kate Parkinson Morgan. Theme music and mixing
by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kaiwang.
Show art by Sean Krney, fact checking by David jar
and Arthur Gompertz. Our executive producer is Justine Lang at
(28:18):
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with Ameliahood. Funding
provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson. Come
back next week for more Playing God. If you're interested
(28:45):
in learning more about these stories and discussions, visit the
Berman Institute's Guide to the podcast at Bioethics dot Jhu
dot edu, forward slash Playing God, or find us on
social media at Berman Institute
I got pregnant right away, and I had a really
easy pregnancy. I felt great, I exercised, I did all
the prenatal career one is supposed to do. Around week
thirty seven, the doctors determined that he was breach and
so scheduled a sea section, and I went in very
(00:23):
excited to become a mom.
Speaker 2 (00:25):
When Laurie Strong and Goldberg arrived to give birth to
her son, Henry, it was the first time she'd been
to the hospital since the day she herself was born.
She'd always considered herself a healthy person and her husband
was too.
Speaker 1 (00:39):
I had had very little experience in the medical world.
Speaker 2 (00:44):
That that was about to change.
Speaker 1 (00:46):
I had a sea section, so they had to kind
of like bring him up to where I could see him.
And as they did that, because baby's hands are sort
of wrapped up around their faces, the doctors noticed that
he had an extra flap of skin on his right hand.
Speaker 2 (01:05):
The baby was whisked away to the nick cue before
Laurie even got a chance to hold him, but she
figured everything would be fine. She's an optimist. She celebrated
with her friends and her husband in the recovery room
until the doctor came back.
Speaker 1 (01:20):
He explained that Henry had a serious but not uncommon
heart defect called tetrology a flow, and he showed us
a picture of a healthy heart and a heart of
tetralogy a felow, and seriously, my husband and I could
not tell the difference. So I remember having this feeling
like you must be in the wrong room, like you
(01:42):
you should be next door or down the hall or somewhere.
You couldn't vastly be talking about our child.
Speaker 2 (01:50):
But he was, and the news only got worse from there.
Two weeks later they learned the cause of the flap
of skin on his hand and the heart defect, and
that the two things together can be a sign of
a fatal genetic condition called Fanconi anemia.
Speaker 1 (02:06):
And our life just took a ninety degree turn.
Speaker 2 (02:11):
That meant Henry would need a stem cell transplant to
save his life. Henry's doctor told Laurie and her husband
that the best way to save their child was a
stem cell transplant using the umbilical core blood from a sibling,
what people in the medical community refer to as a
transplant from a matched sibling donor. At the time, a
(02:32):
stem cell transplant was possible from unrelated donors that the
likelihood of success was much lower.
Speaker 1 (02:40):
Absent a sibling donor, he had a zero percent chance
of living till kindergarten. In the meantime, he was going
to have to have open heart surgery when he was
five months old.
Speaker 2 (02:52):
Henry survived the surgery and recovered well, and Laurie and
her husband, who had always wanted three kids, started trying
for their next time one.
Speaker 1 (03:01):
Our life quickly became essentially just playing Russian Roulette with
our children's lives, right because the disease is genetic, and
every time we had a baby, we had a chance
that the baby would have the same fatal disease as Henry,
and we had a chance that the baby would be
(03:23):
a perfect match. And so life got scary, really almost
at the moment of parenthood.
Speaker 2 (03:34):
I'm Lauren and Rora Hutchinson. I'm the director of the
Ideas Lab at the Johns Hopkins Berman Institute of Bioethics.
On today's show, we'll go back to the late nineties
to the first ever attempt to create a save your sibling.
Is it ethical to create a life in order to
save another? From Pushkin Industries and the Johns Hopkins Berman
(03:56):
Institute of Bioethics. This is playing God for Laurie Strongen
and her family. The task at hand was to figure
out how to save their child's life. They also wanted
to have more children. Each time they did, they'd have
a chance about nineteen percent that an embryo would be
(04:18):
both free of the disease and a match for Henry,
and if the pregnancy was successful, hopefully save his life.
But that also meant that about eighty percent of the
time they wouldn't get the right combination, let alone have
a successful pregnancy. In the meantime, though Henry was growing up.
Speaker 1 (04:40):
He was fun, playful, and just a spirited, brave kit
So it was very easy when anyone was with Henry
to completely forget what was looming ahead because his life
was so not just normal, but just magical.
Speaker 2 (05:02):
When Henry was still a baby, Laurie became pregnant with
her second child, a boy named Jack.
Speaker 1 (05:08):
And we found out when we got the test results
that our second child, who is now my twenty seven
year old son, Jack, was healthy, and that was everything
to us. We also found out he wasn't a genetic
match to Henry, but at the time Henry was like
six months old, his blood was totally normal, and it
(05:30):
felt like something that was far out into the future
and we weren't worried about it.
Speaker 2 (05:36):
During her pregnancy with Jack, Laurie learned something else too.
Speaker 1 (05:41):
We got a call from a doctor who said, what
would you do if I told you you could knowingly
get pregnant with a baby who's healthy and a perfect
genetic match to Henry? And I said, yes, that sounds like, uh,
(06:03):
you know, too good to be true.
Speaker 2 (06:08):
Eventually, lots of doctors would become involved in caring for Henry.
One of them was John Wagner, based at the University
of Minnesota. John studies novel therapies to treat fanconiananemia and
other causes of childhood cancer.
Speaker 3 (06:22):
We know that there was urgency, but it wasn't an
immediate urgency in that Henry was doing okay, So we
had some time, not indefinite, but some time.
Speaker 2 (06:32):
John thought, if we can create embryos by IVF and
then screen the embryos for genetic diseases, we can also
screen to see if they would be a genetic match
for a sibling with Fanconi anemia, using a technique called
pre implantation genetic diagnosis or PGD. John's team would determine
where the embryos were negative for fanconianemia and a genetic
(06:55):
match for Henry. If they were, blood could later be
collected the baby's umbilical cord and used as a stem
cell transplant. Using cord blood for a stem cell transplant
was still experimental at this time, and this particular combination
of technologies had never been used to create a savior sibling.
Speaker 3 (07:15):
Laurie was very eager to try this because there was
no good other options for her at her child, so
we began the process.
Speaker 2 (07:26):
The new process went like this, Laurie and her husband
would have embryos created by mixing her eggs and his
sperm in the lab, and then genetic tests would be
performed on them to see if any were negative for
Fanconianemia and a match for Henry. If they were fortunate
enough to get the right combination, doctors could implant the
(07:48):
embryo into her uterus and the resulting baby would be
free from disease and their umbilical cord blood could be
used to save Henry's life.
Speaker 1 (07:58):
The stakes were so high and at this point now
he's almost three, and remember when he was first diagnosed,
they said, he's going to need to have a transplant
by the time he's five, and a pregnancy takes nine months.
That's what it takes.
Speaker 2 (08:16):
So the clock was ticking and this approach had never
been successfully done before. But John and his team were
working with another family at around the same time to
try to create a sibling donor.
Speaker 3 (08:28):
Concurrent with Lourie Strongen and Alan Goldberg's attempt at having
a baby, there is also Lisa and Jack Nash, who
was the other family that was undergoing the procedures in parallel.
Speaker 2 (08:43):
The Nash's daughter Molly was around the same age as
Henry and also had fanconi anemia. Her disease was progressing
rapidly and they were running out of time, but as.
Speaker 3 (08:55):
Luck would have it, Lisa Nash was then pregnant. During
the pregnancy, we were concerned that we might still not
have enough time, but as it would turn out, in
August twenty ninth, two thousand, Adam was born.
Speaker 2 (09:11):
Adam Nash was the first Savior sibling to be born
via this new combination of technologies, a medical triumph. As
for Laurie and her family, they did IVF and the
embryos were tested but the first round was unsuccessful.
Speaker 1 (09:27):
It was really hard, but the promise of it was everything,
and so we just went back and did it again. Ultimately,
I went through IVF nine times in three years, and
it was absolutely devastating. And then I'd come home and
(09:47):
I'd see Henry and Jack and I'd be like, no,
he's not I can do this again.
Speaker 2 (09:53):
Laurie had been doing everything she could to conceive through IVF,
but meanwhile Henry was getting sicker. He would need to
have a stem cell transplant as soon as possible. Eventually,
they got to the point that there wasn't time for
another round of IVF, let alone a nine months pregnancy.
John had to make a tough call.
Speaker 3 (10:15):
I told them that I think that we have no
more time. We're going to have to go with an
unrelated donor. We can't keep doing this indefinitely, even though
I knew that Laurie's heart that she wanted to continue,
but on the other hand, we didn't have more time.
Speaker 2 (10:33):
Henry would need to proceed with a transplant from an
unrelated donor who was as close a match as they
could find, but they knew the odds of success would
be much lower than with a savior sibling.
Speaker 1 (10:45):
Henry ended up in the hospital with a problem due
to his low platelets, and we ran out of time,
and the very best chance at that point for him
to have a life life was to go to transplant.
Speaker 2 (11:04):
He lived for two difficult years after his transplant, but
much of that time was spent in the hospital. Laura
and her husband did everything they could to normalize life
for him there and give him a semblance of childhood.
On December eleventh, two thousand and two, Henry passed away
at seven years old.
Speaker 1 (11:26):
He was so brave and resilient and funny, but ultimately,
fanconi anemia is a tough adversary, even for the strongest
and the bravest.
Speaker 3 (11:41):
I think that, of course, it was difficult for Laurie
and Alan to accept that this was not going to work.
It's almost, you know, given the caret that this is available,
but it doesn't always work. And then they tried and
tried and tried and tried and tried, and it still
didn't work. And then he goes to transplant and then
(12:03):
he dies of a complication from the transplant. And you know,
when I say we, you know because I feel that
I played a role in that you know, really felt
that we tried everything, and I think in part that
made it harder is like, you know, no matter what
we tried, it just didn't work. And we tried and
tried and tried.
Speaker 2 (12:25):
Fanconi anemia is a tough adversary, which is why John
and others looked to novel ways of treating the disease.
But what happens when the treatment isn't just derived from
medicines or techniques, but also materials from another human The
process generated tons of debate about the ethics of creating
a child for the purpose of being a stem cell
(12:47):
donor to his sibling. It was the first time that
PGD was being used not only to choose an embryo
without genetic disease, but also to choose between unaffected embryos
because of their genetic match to another person, and John is,
the pioneer of this new combination, was acutely aware of
these ethical dinammas.
Speaker 3 (13:08):
The principal ethical issues that we had to efface was
that we were testing an embryo for certain genetic advantages
to us and to the child that existed with fancorninemia,
that is HLA match or tissue matching. But that tissue
matching was of no inherent benefit to that baby to
(13:31):
be born. You know, would this child be used as
spare parts? These were the terms that were being thrown
around in those days, which was obviously creating a public response.
The other parts of all this were, you know, what
is the concern that we were going down the slippery slope. Yes,
first we were eliminating a disease. That was a good thing,
(13:54):
but the tissue matching might just be the first foray
into something more such as sex selection, such as choosing
on other traits. All we wanted to do was to
save the life of Henry.
Speaker 2 (14:07):
People outright accused John and his team of crossing lines
that shouldn't be crossed. He found it difficult to respond, what.
Speaker 3 (14:14):
Does this mean when someone says, you know, you're playing god?
How did it go from that conversation where we're trying
to save a life? But what they were focused on
was all those unborn embryos.
Speaker 2 (14:29):
When Laurie went public with Henry's story in two thousand
and one, lots of people had opinions for her as well.
Speaker 1 (14:36):
Some people were like writing it like, why didn't these
people just let these deformed children die? To me, that's
unethical to not try to save your child, to not
fight to avoid like catastrophic medical consequences, that is unethical.
Speaker 2 (15:01):
Coming up, I dived deeper into the ethical questions about
save your siblings with my colleague Jeffrey Khan. Today, stem
cell transplants using umbilical core blood have much higher success rates,
(15:21):
and medical advances make it easier to find an acceptable
match without the need for save your siblings. But back then,
when it was all very new, it was hard to
navigate the ethical implications that came up. When John Wagner
found himself doing this novel work with the Nash family,
the first family he worked with, he called up his
(15:42):
colleague Jeffrey Kahan to get his take. At the time,
jeff was the director of the Center for Bioethics at
the University of Minnesota, where John was working to help
save the lives of children with Fanconi anemia. Today he's
my colleague and director of the John Hopkins Berman Institute
of Bioethics. So as a parent, hearing Laurie's story really
(16:07):
can't help but affect her on a personal level. And Jeff,
I know you're a parent too, and I'm sure we
can just completely relate to how Laurie and her husband
would have just wanted to do everything they could to
save their child, and also how they would have loved
their child that they were trying to create as a
result of all the rounds of IVF that Laurie went through.
(16:29):
But maybe you don't even need to be a parent
to understand that the journey that Laura and her husband
went on.
Speaker 4 (16:34):
I think you're right, Lauren, And I will say on
a personal level, for me, a little more insight in
that I was on the faculty at the University of
Minnesota when this case was unfolding and Laurie and her husband, Allen,
and their kids came to Minneapolis for a treatment for Henry.
(16:54):
I have two sons and they're more or less the
same age as Henry and Jeff, and so it was
very close to home for us. I will say, when
this was unfolding, you sort of have to ask yourself,
what would I do as a parent? Wouldn't I do
anything I possibly could? How can you not try everything
(17:15):
when you're trying to save the life of your child?
Speaker 2 (17:18):
Yeah, of course, So wow, you were really there at
the time as this was all unfolding.
Speaker 3 (17:24):
JEF.
Speaker 2 (17:25):
So, before we go further into hearing more about the
ethical elements of the case that unfolded, could you just
tell us a bit about the existing technologies that were
being used for the first time in a new way.
Speaker 4 (17:39):
There was an ability to make embryos outside the body
through in virtual fertilization that was not such a new
technology at this point, and there was a newer, younger
technology called pre implantation genetic diagnosis or sometimes preimplantation genetic testing,
where a single cell could be removed from a very
(18:00):
early stage embryo by a biopsy. That technology had been
used up to this point to determine whether an embryo
was carrying a genetic disease, and a decision could then
be made about whether to implant that embryo. What was
novel about this was the combination of IVF plus PGD,
not just to determine whether the embryo was going to
(18:22):
carry a genetic disease in this case, fanconi anemia, but
if the embryo was negative for fanconi, we need to
test to see whether that embryo would develop into a
baby whose core blood could then be used to be
transplanted into and save the life of Henry in this
story of the older brother. So that was the kind
(18:43):
of aha, wow, nobody had thought about putting the technologies
that existed. They weren't new technologies, but the combination of
using them in this way was novel and started to
ring all sorts of alarm bells. Frankly from an ethics.
Speaker 2 (18:56):
Perspective, So just to be clear, then with this prestidure,
it's not Crisper's so there's no gene editing going on.
It's purely the selection of the embryos.
Speaker 4 (19:07):
Right, So this is twenty years ago a little bit
more actually, So there wasn't gene editing. CRISPERD hadn't been
discovered yet, So it was really just a way of
making as many embryos as you can, which required you know,
going through IVF and then testing those embryos in the
way that I had described. So it wasn't modifying embryos,
but rather selecting embryos based on the genetic composition.
Speaker 2 (19:30):
But this new technique did raise really big ethical questions
because it was the first time that it was being done.
So could you just bring us back into that twenty
years ago the first time it's happening. What were some
of the discussions in terms of the ethics that were happening.
Speaker 4 (19:45):
The world of bioetics at that moment knew about pgdability
to test embryos outside the body and was really analyzing
the right kinds of things, or the acceptable kinds of
things that this testing could be used for. So the
idea was pretty clear that it makes sense to test
embryos when you're trying to avoid the disease in the
(20:08):
child that will be born. Now important to say, when
you're testing embryos and choosing one versus another, you're not
choosing the same eventual person with and without the disease,
but you're effectively choosing one person versus another, right the
future person. So the arguments were about where's a line
between sort of obvious genetic disease that better for the
(20:29):
child to avoid right having, versus something that isn't really
a disease, or maybe worse that is sort of selecting
to identify traits that we more thought of as enhancements
or physical characteristics like eye color, hair color, height, intelligence,
musical aptitude. What would stop people from using the same
(20:52):
technique not to avoid having a child with cystic fibrosis
or fancone anemia, but rather selecting an embryo that was
most likely to be a musical right or have blue
eyes right and blonde hair. It starts to sound very eugenic,
and so that was the discussion. How do we make
sure that the technology can be used in ways that
seem appropriate and ethically acceptable, but prevent the kinds of
(21:16):
you know, misuses from happening. When no one thought about
this idea of using the same technology to both make
sure you're having a child that will not be affected
by a genetic disease, and while we're at it, let's
make sure there's a genetic match for another sick child
in the family. I mean, that seemed like wow, way
out of bounce to us. No one had thought about that.
Speaker 2 (21:35):
So it wasn't that people were concerned of this procedure,
as it was people were more concerned about what it
would lead to in the future.
Speaker 4 (21:44):
It may sound a little quaint to talk about this now,
you know, in twenty twenty three, because there are companies
that are offering exactly what we're talking about. You can
use genetic testing services on embryos that were created by
IVF and the I'll tell you, you know, the likelihood of
a whole range of things, disease likelihood, but also things
(22:06):
that they claim are about, you know, traits that probably
we would think of as not being diseases. And that's
that's sort of what we were worried about happening twenty
plus years ago, and trying to guide the technology to
be used in responsible ways. Maybe we weren't so successful.
Speaker 2 (22:21):
So, Jeff, at the time when this was unfolding, did
the reactions from the public about the ethics surprise you?
Speaker 4 (22:29):
This took up a lot of air in media. It
was a very widely covered watch story, and you know
a few things that were sort of a little surprising
to me. One was, isn't this planning God? Actually, that
was a question that many many journalists asked, and it
was like, well, no, you're not modifying anything. You're just
(22:51):
selecting embryos that are, you know, otherwise made, and you
make decisions about which to implant all the time. This
is sort of adding a layer of information about which
to implant and why. So that was one. The second
was aren't the parents wrongly motivated by deciding to do this? Right?
They're having a child to save their other child, which
(23:15):
to me sort of harked back to you know, everybody
thinks about having children and why they have children, why
they don't have children, and we don't quiz them about that.
We don't say, tell us why you want to have children.
It doesn't work like that, right, People have children for good, bad,
or no reason. So it didn't make sense to me
to sort of drill down so much on you the
(23:37):
parents to say that their motivation was bad. Well, what
do you mean Their motivation is trying to save the
life of their very sick son in this case, that
seems like a pretty good motivation.
Speaker 2 (23:48):
Yeah, And so that really ties into what I want
to ask you next about the conflict between ethical concerns
and society's perspectives and then individuals rights as families to
decide what to do about their own family. Could you
talk a bit about that tension, how it plays out
in this case in particular.
Speaker 4 (24:08):
Yeah, this case I think is a very unusual one
because of that, the sort of foundational commitments that it
puts in conflict are pretty unusual to see them, you know,
put together this way. So we talked to a fair
amount about when, if ever, can we restrict people's right
to pro create, to have children, and you know, we
(24:30):
don't do that in liberal societies, and that's sort of
a commitment that we you know, some of the recent
court decisions notwithstanding, there's a long history of people getting
to decide for themselves, right, So we're very very careful
in treading on individual decision making about reproduction. So that's
(24:50):
one commitment. The other is we don't take advantage and
exploit children, right, that's another really kind of foundational commitment.
We protect children, and so we don't treat children as
mere means, right. We treat them as ends unto themselves.
And so we have a kind of a case where
it feels like we're on the cost pier of treating
(25:12):
children in a way that would be exploitive at least
and maybe as mere means at worst. But to prevent
that from happening requires us to restrict or tread on
individual decision making about reproduction. That makes it almost impossible
for us to figure out what to do, except to say,
let the parents decide for themselves.
Speaker 2 (25:34):
Thanks so much, Jeff, great to talk with you today.
Speaker 4 (25:36):
Thank you, Lauren. Great to talk to you as well.
Speaker 2 (25:41):
As we heard for Laurie Strong in the decision was
an uncomplicated one. All she was trying to do was
save the life of her son, Henry. But she knows
that it isn't just about her family.
Speaker 1 (25:54):
Here's the thing that I learned. All of us are
the beneficiaries of many people who made tremendous sacrifices as
the first or the second or the third to try something.
And when you're the first person to try something, or
maybe the second or third, you're rarely the beneficiary of it.
(26:15):
Doctors learn, they make adaptations and improvements, and ultimately it works,
and we all have benefited from scientific discovery on the
backs of other people. This one was on my back,
my husband's back, in my family's back. That's how it works.
(26:37):
It was never only about Henry.
Speaker 2 (26:43):
Next time on playing God. Computer control brain implants can
treat diseases like depression and Parkinson's in cases where all
other types of treatment have failed. But these implants can
change more about the brain than the disease they meant
to treat.
Speaker 1 (27:00):
So there were questions about who was actually the narrator
of the life at that point. Was it the technology
or was it the person? Was it some kind of combination.
Speaker 2 (27:10):
When it comes to altering our personalities by implanting electronics,
where do we draw the line? Are we giving computers
too much control over who we are when we allow
them to alter fundamental human traits like our emotions? And
if it's okay to change our moods, what about other
things like our intelligence? That's next time on Playing God.
(27:36):
Thank you to our guests in this episode, Laurie Strongin
and John Wagner. Playing God is a co production of
Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics.
Emily Vaughn is our lead producer. This episode was also
produced by Sophie Crane and Lucy Sullivan. Our editors are
(27:57):
Karen Schakerjie and Kate Parkinson Morgan. Theme music and mixing
by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kaiwang.
Show art by Sean Krney, fact checking by David jar
and Arthur Gompertz. Our executive producer is Justine Lang at
(28:18):
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with Ameliahood. Funding
provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson. Come
back next week for more Playing God. If you're interested
(28:45):
in learning more about these stories and discussions, visit the
Berman Institute's Guide to the podcast at Bioethics dot Jhu
dot edu, forward slash Playing God, or find us on
social media at Berman Institute
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