Inside the ethics committee. 3/4.

Radio documentary presented by Joan Bakewell about ethical dilemmas, discussed with the help of a panel. In this episode she asks whether parents who know they carry a faulty gene should get their children tested. Alan and Rachel were in their 30s when they were told that Alan, who had lung cancer, was found to have a fault in his TP53 gene (a tumour suppressor gene) which can cause Li-Fraumeni syndrome. Rachel becomes pregnant and there's a 50/50 chance that the baby will have this gene. There is a prenatal test that can be done at 12 weeks for the genetic mutation, although it is not offered automatically as it takes away the autonomy of the child to make a decision on whether they want the test later in life. The story is discussed with the panel of studio experts who are: Deborah Bowman, professor of ethics and law at St. George's, University of London, Professor Gareth Evans, consultant in medical genetics and cancer epidemiology at Central Manchester University Hospitals, and Richard Ashcroft, professor of bioethics at Queen Mary University, London. The ethics of prenatal testing are discussed. Alan and Rachel are not offered the test. Later, Alan dies of cancer as do two of his siblings who also have the gene. Rachel, who now has four children sees a genetics counsellor as she feels she can better care for them if she knows if they have the Li-Fraumeni syndrome gene. There are, however, ethical issues over the psychology of the situation, the outcome, and whether testing should wait until each child can be involved as some people in adulthood decide not to be tested. Rachel finds the uncertainty unbearable and thinks the benefits outweigh the risks. The panel discuss the interests of the family as a whole as well as the mother's uncertainty and the actual medical benefit to the children. Genetic testing is then considered from a psychological point of view. The impact of future genetic testing is discussed in relation to areas such as the insurance industry and sharing of information. In the story, the genetics team have to decide whether Rachel can have her children (who range from 2 to 12) tested. There are discussions on when a child is old enough to contribute to the decision, the best age to be tested, and ethical dilemmas over the children in this case. Rachel wants them all tested. The hospital genetics team were divided and it was left to the Hospital Ethics Committee to consider the pros and cons of genetically testing the children, ethically, medically, emotionally and psychologically. In the studio, the panel suggest what they would advise Rachel, and what they would do if it were them. On the whole, they feel that if the children are tested it should be all of them together. The actual Ethics Committee recommended Rachel make the decision herself after she had the full implications of the test explained to her. She had them tested and the results showed that more than half were affected. Rachel speaks about how she treats the children now and how she recently told the eldest child which of them have the condition. She will tell the others when she feels the time is right.