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Case Study |
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Paul and Jane are a young, recently married Christian couple. Paul's father has Huntington's disease and is becoming seriously demented. A predictive test has shown Paul that he has inherited the gene and will therefore develop the disease in due course, perhaps in twenty years time.
The couple decide that if they are going to have children they should do this soon. They both know there is a 50:50 chance that any child of Paul's will inherit the Huntington's gene.
Paul's views:
He was convinced that it would be wrong for him to take that degree of risk of passing on such a devastating disorder. His father had had 40 good years, but seeing him now was too distressing. He knew a treatment might well become available, but he could not be sure of this and even if it did it could be horrendously expensive and he felt he had some responsibility towards the community as a whole.
Deciding not to have a family seemed so hard on Jane. She was already prepared to care for him when the disease showed itself. It seemed too much to expect her to forgo having a child as well. Even if she agreed now she might regret the decision later.
Would donor insemination definitely be wrong? A talk at church had compared it with adultery. But adultery was being unfaithful to your wife and he was trying to care for Jane. It would be quite humbling for him to have to accept the gift of another man's sperm and anyway Jane might not want that. He wondered too how a child would cope with such a strange origin. He would definitely tell the child and be open with other people too but would it be fair on the child?
How frustrating it was that the adoption society had turned them down because he had the Huntington's gene.
Jane's views:
She wondered how important having a family was to her. It would really be easiest if they simply decided against but she knew Paul would feel bad for her sake and he was already concerned that he would be a burden to her as he became ill. Just visiting his father brought that home to them both. How could she know how she would cope with being 43 and childless?
Perhaps they should just pray and hope that all would be well - after all Paul was perfectly well now. But she remembered how firmly she had disagreed when a friend had told her that she was not going to have her children immunised as she preferred to pray and trust God to look after them. And how devastated they had been when after so much prayer from so many people, Paul's test had given the result it had.
The geneticist had said that pre-natal testing was possible but she could never have an abortion as she was sure it would be wrong to destroy a fetus simply because it had the Huntington's gene. The other technique the geneticist mentioned was pre-implantation testing. She wondered what she thought of discarding the affected fertilised eggs. Was that equivalent to abortion or not? Perhaps they could consider that option even though it was still very new. Then again, how safe was it?
In discussion groups decide how this case history should develop.
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