[Music]
since the beginning of life itself our
ancestors have left us the ultimate
legacy their DNA but lately even that is
subject to change as we can now
pre-select genetic code we bestow on our
kids recently I had to sign a form
promising I wouldn't have sex with my
wife why it was because we decided to
have a baby let me rewind back to the
only time a mullet was considered an
acceptable haircut
the 1980s here we have Philip a young
and carefree man in his mid-20s Philip
was working on a Sandridge mining silica
in the waters of Far North Queensland
after every shift Philip would leave the
dredge with the other miners on these
narrow planks back to solid ground but
when Philip started the nightshift he
was getting a blinding starry-eyed
effect while the other men joked and
laughed across the planks the supervisor
was shocked to see Philip crawling on
his hands and knees
unable to see fearing his eyesight would
get worse Philip decided to leave his
job and return to Sydney to try and
discover what was happening with his
eyesight and if there was anything he
could do to fix it he saw many
specialists including ophthalmologist
dr. Frank Halliday dr. Holliday did
extensive tests on Phillips eyes and
suspecting a genetic link helped map
films family tree collecting over 400
blood samples from Philips relatives
ultimately dr. Halliday concluded this
Philip had a form of retinal dystrophy
that he would continue to lose his
eyesight there was no cure and in time
would go completely blind
this happened within five years at just
30 years old
Philip was declared legally blind the
same age I am now Philip retrained to
become a massage therapist a job he
could do with his hands without his
eyesight he also became a father to a
daughter he named Haley 28 years later I
married Haley filth is my father-in-law
when Haley and I decided to get married
with the hope of starting our own family
one day
we sought advice from genetic experts
because we knew the Phillips condition
may be hereditary by coincidence the
genetic counselor and scientists we
first saw were actually students of dr.
Halliday knew of the case and were
amazed to discover Phillips daughter
walked through their door nearly 30
years later they confirmed the Phillips
condition was hereditary and a team of
genetic experts from Sydney and the UK
helped analyze Philips DNA in order to
find the mutation that had caused his
blindness DNA is made up of four base
letters G's C's T's and A's they were
trying to find the one letter difference
among these letters and to give you some
perspective that's two million more of
these pages among the three billion they
said it would take months to find and it
did but amazingly they found it dr.
holidays previous research coupled with
data from a distant relative in Perth
who also carried the disease was
invaluable in finally giving Philip a
definitive diagnosis for his condition
this condition was called retinitis
pigmentosa
it's an x-linked hereditary disease
where men are usually affected a women
eye carriers with symptoms that can
occur at any age it causes the
degeneration of the cells in the retina
resulting in complete loss
citing Haley was confirmed as a carrier
we suspected this but the unexpected was
when we heard and I still remember the
moment clearly it was one of those
moments where time seems to stand still
because we were completely unprepared to
hear the news that she too may begin to
lose her eyesight this will happen a
month before our wedding I can tell you
there's nothing quite like that to add a
little bit more stress to the wedding
planning I'm in awe of Haley she took on
this news with determination and courage
despite being worried for our future how
much harder would it be to have a baby
to raise children if she lost her
eyesight she was also worried for me
more than usual she was worried so close
to our wedding was this still the future
the life that I wanted well she wasn't
getting away that easily I would support
her no matter what would one day
hopefully start a family and we would do
it together
as a young otherwise healthy couple we
were told that we should have no trouble
conceiving naturally but if we did we
had a one or two chance of having a
daughter
there was a carrier like Haley and a one
or two chance that a son would be
affected by the condition like his
grandfather Phillip our next team at the
Royal Prince Alfred hospital gave us a
number of options one flipped a coin
conceived naturally and hope for the
best to conceive naturally tests for
gender at 12 weeks and with the option
to a border male there's also a third
option as they are now able to locate
the mutation they said it was possible
to build a genetic test to identify the
affected gene in an embryo we had a
choice to avoid passing on this gene by
proceeding with IVF in vitro
fertilization compiling Halley's eggs
the largest cell in the body and
my sperm the smallest cell in the body
analyzing the resulting embryos and only
transferring one did not carry the
condition this procedure is called
pre-implantation genetic diagnosis or
PGD because i'm not sure i can keep
saying pre-implantation take diagnosis
so pigley involves creating a number of
embryos through IVF in a lab three to
five days after fertilization as the
cells begin to divide and multiply one
or two cells are removed from the
outside of the embryo not the inner cell
mass that will make the baby these cells
are then tested for any abnormalities of
which they said they would give us 99%
certainty
we're excited this is close to a cure
that we could hope for we had questions
by undertaking embryo selection would we
be labeling Philips life as something
undesirable something to be avoided at
all costs we made sure to get his honest
point of view while Philip often
downplays his condition by saying things
like but not having to turn the lights
on he saves money on electricity
he was uncharacteristically serious when
he told us that he would give anything
he had for our children to have their
eyesight he said if there was any chance
that we could avoid passing on the
disease then we should take it in the
past there was not much a couple could
do when confronted by genetic disease
other than do nothing and hope for the
best
thus the idea of harnessing technologies
to change our future is a powerful one
as PGD involves analyzing and selecting
healthy embryos it's giving hope to
couples with recurrent miscarriage
advanced maternal age and couples with
recurrent IVF implantation failure it's
also giving hope to couples with a
chromosomal or genetic abnormality and
their families diseases like retinitis
pigmentosa tay-sachs or cystic fibrosis
diseases that can cause immense
suffering that debilitate well who can
kill a child before they reach the
preschool age with PGD a couple now has
a choice in taking steps to try and
ensure a healthy pregnancy a healthy
baby and avoid passing on a genetic
disease forever but there's also fear
the PGD might be just the thin edge of
the wedge
I'll give you leading to the creation of
designer babies this fear was once only
in the domain of science fiction as
famously depicted in the 1997 film
Gallagher Gallagher depicts a future
society where embryo selection has led
to a eugenic dystopia where people
conceived in the traditional way I
considered vastly inferior to those who
begin life in the lab as PGD involves
discarding or indefinitely freezing
embryos
there are many ethical issues
conflicting views and moral stances
surrounding it
recently there has been much controversy
on using PGD on otherwise healthy
embryos and selecting them purely on the
basis of late onset diseases like
Alzheimer's susceptibility to certain
cancers gene matching to in order to
create a donor child for an older
sibling and perhaps most controversial
of all non-medical gender selection or
physical or aesthetic traits like hair
or eye color a line from Gallagher
what first began as a means to rid
society of inherited diseases has become
a way of designing your offspring the
line between health and enhancement
blurred forever
the distinction for Hayley and I was
that this wasn't about wanting to have a
child that had eyes that were blue but
wanting to have a child that had eyes
that could see so we decided to use the
technology that was now available PGD
the preventative measure it followed
your typical IVF procedure twice a day
for two weeks old help Hayley with the
hormone injections to make her super
ovulate but instead of producing one egg
that month she'll produce 16 that's why
I had to sign that no sex form because
if she got pregnant naturally well I've
still not sure why she didn't won't
become double Octomom
as the week's went by we had every hope
of the process would be success but
after reaching the first round of
embryonic testing the news wasn't good
for embryos had made to the testing
stage but none were fit for transfer
among these was a otherwise healthy but
affected male sure to develop retinitis
pigmentosa and would be discarded our
faith in the process began to waver had
we made a mistake
had we allowed a chance of a life to be
discarded a baby that was so wanted we
struggled with these thoughts far
removed from the original hope and
insight excitement that we shared when
we first decided to have children
there's anyone who has been through it
will tell you IVF is long and arduous
and a fraction of the fun of conceiving
naturally the thought of how to do it
all again for the tests the needles the
hormones the mood swings that was just
me the clinical white walls the many
anxious months waiting and the
possibility that it might all happen
again was daunting but this is the
burden faced by any couple wanted to use
PGD as another one of her hurdles we
faced was how we're going to afford it
it's financially debilitating after the
unsuccessful first round we had already
used all our life savings we couldn't
give up we'd chosen this path to ensure
that our child had the best chance of a
life without an inherited disease you
who do another attempt would have to
borrow so we did and we went in for a
second round but this is the burden
faced for any couple predisposed to a
genetic condition using PGD a major
issue is affordability equity of access
and lack of government support
in the most recent application to the
minute at the Australian Medical
Services Advisory Committee for the
public funding of PGD it was made clear
the PGD is not to reduce the number of
individuals deemed costly to society nor
to diminish society's willingness to
care for those the disability or genetic
abnormality but there is important
clinical need for PGD in guiding
reproductive decision-making ask any
parent what they wish for their children
to be healthy this is exciting the
future is brighter for these couples
facing hereditary disease that's why I
don't think should be only for those
that can afford it excluding many others
that really need it
science will also keep progressing as we
draw nearer to the possibility of
editing out our own genes we need to
consider and talk about genetic
technologies implications now how we use
it ethically and responsibly especially
for the health of a child not the type
of child I believe that we should
encourage and support people's
reproductive autonomy using the
effective framework of counseling
information and conversation PGD has
given us an option where couples only
often had a bleak outlook before but I
don't think it should be for anyone that
could afford it
PGD is giving couples the ability to
choose to enter an hereditary disease I
think we should give every potential
parent that choice
finally an update of the second round
we've got a healthy embryo in fact it's
the one I showed earlier we transferred
that successfully and Haley is pregnant
so fingers crossed from here and out and
then the rest is easy right thank you
very much
[Applause]