Challenge Biomedical Science – Genetic Testing
Martha Spence, 34 years old, mother of Ethan
Synopsis: Her son has a rare blood disease. Another child with matching
bone marrow could save him. She wants this. She doesn’t think that it will
make the new baby a ‘spare child’, she thinks the child will grow up
feeling special.
“My son Ethan has a rare blood disease. Without a bone marrow transplant my
son could die. At the moment, he has to take a lot of medication and can’t do
everything other children can do.
My husband and I have had a difficult few years. We love Ethan to bits and he is
a wonderful child. But we just wish he could live a more care-free life, like any
other child his age. We always wanted to have more children, but we also
wanted a cure for our little Ethan. Now we might have a chance to have both!
People have said that it’s not right to have a child for ‘spare parts’. But I think
that’s a silly thing to say. My husband and I want more children and one of those
children could be a tissue match for Ethan. We just want to increase those
chances, because we feel Ethan deserves better than this. And I don’t think the
child will ever feel that he or she wasn’t wanted. I will make very sure of that.
And I think it will make the child feel special, to know that he or she was able to
do such a wonderful thing for his or her brother.
It’s not an easy procedure either. Anyone that has been through IVF will know
how demanding the process is. But we have been well prepared by our doctor. I
feel very optimistic about it.
Of course there is a chance that the baby might not be a tissue match for Ethan.
I think I would be disappointed if that happened. I would be lying if I said I
wouldn’t be. But that doesn’t mean that I won’t love the new baby just as much
as I love Ethan.
We just want a healthy baby, but we want to make an extra effort to make sure
that this baby can help a bigger brother have a better life. Surely there’s nothing
wrong with that?”
Challenge Biomedical Science – Genetic Testing
Sarah O’Hare, 28 years old, travel agent
Synopsis: There’s a history of Huntington’s disease in the family, Sarah’s
dad has it, her grandmother died from it. Sarah wants to have children, but
knows there is a chance her children will get it if she has the gene.
Should she get a test done? Would she have an abortian if an unborn
child had the disease?
“I remember being very young and noticing that there was something different
about my grandmother. She sometimes made strange movements and would
drop things. And later on I remember that she couldn’t speak very well. She went
into a nursing home when I was 10 and died not long afterwards. It was never
really explained to me what was wrong with my grandmother, until my parents
started worrying about my dad. He knew he had a 50% chance of getting
Huntington’s disease from the moment he knew my grandmother had the
disease. When he started showing symptoms a few months ago he sat me down
and had a long talk with me about the effect this could have on my life. He
knows that I now have a 50% chance of carrying the gene and developing the
disease. But whether I undergo testing or not, I can’t change what’s already in
my genes.
My husband and I have been talking about starting a family. But this news has
made this a bit more complicated. After all, I’ve seen what the disease can do
and I wouldn’t wish that on anyone. On the other hand, if my grandmother had
had the choices I have, maybe she would have decided not to have children and
my dad and I would never have been born.
I don’t think I want to know what’s coming. I like to take life one day at a time
and knowing my future doesn’t appeal to me at all. If I undergo the test and it
turns out that I do have the gene, I’ll just be waiting for the day that the
symptoms start. After all, I’ll still not know exactly when I’ll develop the disease,
just that it’s going to happen at some point. If it turns out that I don’t have the
gene I think I’ll spend my life wondering why I was spared when my poor daddy
wasn’t.
I just don’t know. To be honest I wish I wasn’t presented with this choice. My
grandmother didn’t know she carried a disease she could pass on to her
children, so she never had to think about these questions. Part of me just wants
to take a chance and leave destiny alone. But then again, I don’t want my
children to go through what my grandmother went through…”
Challenge Biomedical Science – Genetic Testing
John Murdock, 41 years old, lecturer in biochemistry
Synopsis: Suffers from Achondroplasia. He is married and has two children.
Feels that the developments in genetics might mean people like him will no
longer get a chance to live and if they do they will be likely to be
discriminated against.
“My mother and father are both of normal height. My dad is 6 foot 2 and my mum
is 5 foot 4. I am only 4 feet. This is because I have Achondroplasia. It means my
arms and legs are very short in comparison to the rest of my body.
The Achondroplasia has never really stopped me in life. At the age of 27 I got
married to a beautiful woman called Mary. She is of normal height. We knew that
when we wanted to have children, there would be a 50% chance of having a
child with Achondroplasia. My eldest son is of normal height, but my daughter is
like me. At the time no tests were available to find out before birth whether our
children would suffer from Achondroplasia or not. But even if such a test would
have been available, I wouldn’t have wanted it. After all, people with
Achondroplasia can live just as full and enjoyable a life as anyone else and
shouldn’t be denied that chance.
I have had to work hard to earn respect from people. I flew through my degree in
Biochemistry and then went on to do a Master’s and a PhD. But once I tried to
get a job with different companies things didn’t go so well. I would always get an
interview, but never got beyond that stage. They say employers decide within the
first 30 seconds whether a candidate stands a chance or not. Obviously those
first 30 seconds tend not to work in my favour. I now have a job as a lecturer at
my local university and I love talking to young people about Biochemistry.
But I’m worried about the effects the development of Genetic Tests is going to
have on people like me. People with a disability will become more and more rare
and that will only increase pressure on parents to have an abortion if they find
out their child might have a disability. Couples who decide not to have an
abortion will have children who will have to face increasing levels of
discrimination.
I think it’s time we stop interfering with nature. Nature made me and I’m a very
happy man. No Genetic Test should stand in the way of my right to happiness
and more importantly, my right to life.”
Challenge Biomedical Science – Genetic Testing
Harry Thompson, 25 years old, youth worker
Synopsis: Feels that man is taking over from nature. Would like to see
developments that may help cure diseases, but feels that no human life
should be lost because of it. Feels that an embryo is a life as soon as it
is conceived.
“I work with young offenders every day and sometimes that’s not easy. A lot of
these teenagers haven’t had a very good start in life and that shows. But I
believe that with the right guidance and with a little bit of attention and care,
these kids can turn their lives around.
I believe that everyone should be given a chance in life. And that starts from
when they are conceived. The moment an egg is fertilised, life has started and it
should not be taken away. What if my mother had decided not to have me for
one reason or another? I wouldn’t be here today. That in itself is enough for me
to say that no life should be treated with disrespect. And to me that means that
all life should be given a chance to develop into a person.
I think it’s quite scary the way things are developing in the field of Genetics at
the moment. Pregnant women will be offered more and more tests as time goes
by and I’m afraid it will just become too easy to have an abortion if there’s a
chance that there’s something wrong with the child. I know scientists say that we
will never be able to ‘design’ our babies, ask for blue eyes and blonde hair and
stuff like that, but I think that’s only going to be a matter of time and money.
Money gives you choices and I think it will eventually give you a choice of how
your baby should look. And we should stop going down this road now before it’s
really too late.”
Challenge Biomedical Science – Genetic Testing
Lauren Taylor, 35 years old, genetic counsellor
Synopsis: Sees a lot of troubled families every day. Believes that the
science of genetics and the development of genetic testing in particular has
given a lot of happiness to some of these families.
“I have worked as a genetic counsellor for 7 years. It’s a difficult job sometimes.
I deal with people that have questions about topics related to Genetics. This can
be anything from people just wanting to know a bit more about a disease that
runs in their family, to couples who want to have children and need to make
some decisions about genetic testing.
I would never tell people what to do. My role is to give them information and
guide them, so that they can make their own choices. And I wouldn’t say that
genetic testing is an answer for everyone. But some people need some
reassurance either way. I can understand both points of view. For some people
knowing the future is the worst thing that could happen to them, especially if that
future holds a disease. For others, the uncertainty is the most difficult. They
can’t live their life to the full, because they spend all their time worrying.
Couples who consider pre-implantation genetic diagnosis (PGD) also have a
difficult choice to make. Parents often don’t know exactly what they’re letting
themselves in for when they come to me. They just know that they don’t want
their baby to have a terrible genetic disease that runs in their family. But it’s a
very demanding procedure and both parents need to be 100% certain that they
want to go through with it, because IVF isn’t always successful. It can be very
heartbreaking to talk to couples who so desperately want a healthy baby, but
have all the odds against them.
I’m glad that genetic research has given people choices. Once again, I don’t
think genetic testing it’s right for everyone, but I think everyone should get a
chance to make that decision themselves, with the help of a genetic counsellor
like myself.”