Saviour
Siblings
Decision Making
By Danielle Kidd 9N5
Case Study - Jodie Fletcher
Decision making for parents would be very hard, as they would have to risk having a saviour sibling feeling unloved and unwanted. They would habe to prepare themselves for if it doesn't work. Or, if they do nothing, it is likely to result in a very poor quality of life for the sick child, and lot of money spent on caring for them.
Jodie Fletcher is a perfect genetic match for big brother Josh who suffers from a rare bone marrow condition. Jodie was conceived using a type of IVF treatment which ensured she was the perfect genetic match for her six-year-old brother. Josh suffers from a rare, incurable genetic condition called Diamond Blackfan Anaemia (DBA) which means his bone marrow doesn't make red blood cells. Without a bone marrow transplant, he is at risk of developing leukaemia or bone cancers. Neither Josh's parents, Joe and Julie, nor his older brother Adam are a suitable match. But little Jodie, who was born in July 2005, holds the key to her brother's cure as cells from her umbilical cord and some of her bone marrow could save his life.
AQA Religious Studies A Christianity: Ethics Text book, page 45.
http://www.belfasttelegraph.co.uk/sunday-life/news/the-saviour-sibling-28407849.html
http://www.dailymail.co.uk/femail/article-553249/I-saviour-sibling-cure-desperately-ill-son--Ive-newborn-daughter-save-life.html
Laws that govern the creation of
saviour siblings
''Right from the start, this child did not have the right to its own birth. The parents' thoughts were not on the birth of the child. And it lives under thethreat that it might be asked for future donations.''
The Human Fertilisation and Embryology Authority (HFEA) is a statutory body in the United Kingdom that regulates and inspects all UK clinics providing in vitro fertilisation, artificial insemination and the storage of human eggs, sperm or embryos. It also regulates Human Embryo research.
Case Study - Donatella Zammit
- Josephine Quintavalle, anti-abortion campaigner.
What are Saviour Siblings?
Donatella was conceived with the intention of her becoming a Saviour Sibling to her nine year old brother Jamie, who suffers from the rare genetic blood disorder Fanconi anaemia (FA). FA is the result of a genetic defect in a cluster of proteins responsible for DNA repair.
The family had optimism that Donatella might provide their son with a bone marrow transplant and in doing so save his life, but has been cruelly short-lived.
The Zammits received the devastating phone call from Great Ormond Street hospital in London to say that tests on Donatella's umbilical cord blood had revealed she was not a perfect tissue match for her brother.
When a child is suffering from a serious condition, a donor who has compatible tissue for a transplant or blood transfusion is required to help them.
The Saviour Sibling is created through in vitro fertilisation; a number of fertilised eggs can be created so that the parents of the sick child can choose one which does not have the disease.
Laws that govern the creation of Saviour Siblings
Arguments against Saviour Siblings
Arguments for Saviour Siblings
The Human Fertilisation and Embryology
Authority released guidance for future decision-making:
- The condition of the affected child should be severe or life threatening.
- The condition should be one which may continue to occur.
- All other possiblities of treatments should have been explored.
- The techniques should not be available where the intended recipient is a parent.
- The intention should be to take only cord book for purposes of the treatment, not other tissues or organs - the sibling canot be used as a spare parts bank.
- To get a Saviour Sibling, many other embryos are discarded and destroyed. Christians who believe in the sanctity of human life from conception will oppose Saviour Siblings because of this.
- Creating a child to save another person means we do not value it for what it is but for what it can do for another. All children should be valued for being children of God, not for what they can do.
- Saviour Siblings may be emotionally damaged when they find out they were only chosen because they could help their sibling. If they had not been lucky enough they would not exist.
- You are using the new baby as a means to an end, not valuing it in itself.
- The Saviour Sibling will always feel less loved.
- The donor sibling cannot give its consent.
- The procedures can be painful and even life-threatening.
- Some Christians may argue that Saviour Siblings are no different from other kinds of blood or organ donation. It is creating someone to help another, which is morally good.
- The Saviour Sibling can still lead a happy and normal life. Furhtermore, they can have a great start to their own life, as they have saved somebody elses!
- Parents have more than one child for all sorts of reasons. For example they may want to have children who can play with each other. With Saviour Siblings they want a child who is capable of saving a life of a sick sibling. This is just another good reason to have a child.
- It's the loving thing to do for the existing sick child.
- It is possible to consent in retrospect - if saviour siblings say, later in life, that they are glad that they were created to save a sibling, you can't say that they had no choice in it.
Arguments against Saviour Siblings
Christian attitudes towards Saviour Siblings
Arguments for Saviour Siblings
- As the donor sibling grows up, it may decide not to help, but may be forced into it
- There are alternatives - before 2000 this wasn't even an option, so why is it needed now?
- What if bone marrow donations aren't enough? How far would you go to save the existing child's life?
- You have to accept God's will, even if you don't understand it. Creating a Saviour Sibling is going against God's will and trying to stop something he has allowed to happen
- It goes against the Human Rights of the new child
- It doesn't always work, and then how would the parents feel about the new baby?
- You are playing God; it's not natural.
- Doctors are putting the donor sibling at risk.
- In most cases, no harm comes to the sibling - they simply take stem cells from the umbilical cord.
- Couples who create Saviour Siblings would have wanted another child anyway, and could have ended up with the same child as the one screened, so it doesn't really make a difference.
- It's not a 'designer baby', as you are not choosing anything about what the new baby will be like, only that it is free from the inherited disorder and is a donor match.
- It costs a lot to treat a child with a serious inherited disorder - a saviour sibling would save money.
- There may be no other choice.
Catholics: Against them because they believe life begins and the moment of conception so when embryos are discared, lives are being destroyed. A quote to support this is 'Do not kill'.
Church of England: For them as they want to show love, as Jesus healed the sick. A quote to support this is 'Love your neighbour as yourself' as they are showing compassionate love.
Case Study - Jamie Whitaker
Michelle and Jayson Whitaker wanted help for their son Charlie who was born in 2000. Charlie has Diamond Blackfan Anaemia (DBA) which is a rare blood condition usually diagnosed before 12 months of age. DBA patients fail to produce red blood cells properly. This condition can only be treated with a stem cell transplant from a matched donor. However, people who ave a tissue match are very difficult to find. A daughter, Emily, wasa born naturally, but unfortunately she was not compaitble. The parents went to America, where doctors selected brother Jamie from a number of fetilised eggs which were screened. Jamie was found to be a near-perfect genetic match for his older brother Charlie and he was chosen to be born. The parents went to America because it was not deemed legal in the UK.
''All we are trying to do is help the
sick... All the time children are created
for a reason- to complete the family, to
provide a sibling for an existing child,
to keep a couple together. What we are
doing here is no different.''
A Saviour Sibling is a child conceived by IVF with pre-implantation genetic diagnosis to save the life of an incurably ill sibling through the use of cord blood.
For
- It is not any different from blood or organ donation.
- Parents have more than one child for many reasons eg children want to play with eachother.
Against
- Other embryos are discarded in the selection process
- saviour siblings can be emotionally damaged
- the child is only valued for what it can do for
someone else
Case Study - Zain Hashmi
Agape - Showing love and
compassion to the sick child.
Quality of life- If the saviour sibling saves the life, the cured child would have a much more enjoyable life that is worth living.
Sanctity of life- scientists would be going against God when they destroy the embryos; God gives life so is the only one to take it away.
- Mohammed Taranissi, director of the Assisted Reproduction and Gynaecology Unit, London.
Raj and Shahana have a three-year-old-son, Zain, who suffers from the blood disorder, Beta Thalassaemia (BT), which affects the body’s ability to create red blood cells. Zain has regular vlood transfusions and may die without a bone marrow transplant. BT is hereditary and both of the Hashmis are carriers . any child they produce carries a one in four chance of having of having BT. mrs hashmi concieved haris naturally in the hope that he would be compaitble for Zain. Haris was free of the disease but not a tissue that would match zain. His parents tried to find a donor bt failed. permission was given to carry out a genetic diagnosis on embryos from the hashmis to find a disease-free, tissue-compatible child. Umbilical cord blood could be used to save Zain's life. Permission was granted, but the they were not successful.