PASSING IT ON

In document NEW SPEC UNIT 1 (TOPIC 2) (Page 124-128)

Purpose

 To review the ideas covered in Topic 2 using role play (Figure 1).

Figure 1

Procedure

In this activity you are asked to prepare for a TV programme hosted by the well-known TV presenter, Nikki Pond. Nikki hosts a regular programme, always tackling controversial ‘human interest’ issues and inviting a response from the audience. You may be asked to take on the role of one of the people appearing in the programme. In preparing for the role, use as much information as you can from what you have studied in this topic. Remember that the other participants will be asking you searching questions, and you need to come up with some clear and sensible answers if you are to make your case convincing.

The current programme poses the question:

‘Should people with serious genetic conditions be allowed to have children?’

Appearing on the show will be:

 Nikki Pond, a well-known TV presenter

 Mrs Jane Hewitt, a mother who has cystic fibrosis (CF)  Mr John Hewitt, Jane’s husband

 Dr Sam Healham, a doctor who works in a hospital treating patients with CF  Alex G Gnome, a genetic counsellor

 Dr Pat Swapham, a doctor researching gene therapy

maintain the high viewing figures the programme is currently attracting. Your task is to chair the discussion and introduce the topic to the audience. You will need to think of how you are going to introduce the topic to the TV audience in a way that will engage their interest. Next, you should introduce the people on the panel. You need to think about the order in which the people will appear on your programme. You will need to give each expert a chance to speak and then you should ask them questions.

To do this, you will need to prepare a list of questions carefully and think about who should answer the questions. The invited family and experts may wish to ask each other questions as well and you need to co-ordinate this. Finally, you should give the members of the audience an opportunity to ask questions and express their own views.

At the end of the programme, ask the members of the audience to vote, by a show of hands, whether they believe that this woman was right to have children, knowing she suffers from cystic fibrosis, once they have heard all the arguments.

You are Mrs Jane Hewitt, a mother of two and has cystic fibrosis. You are now 30 years old, with two children aged 5 and 8. Cystic fibrosis has certainly affected your life: you have had daily

physiotherapy since you were a baby and you have had to make a very conscious effort to keep as fit as possible. On top of that, you have had to spend periods of time in hospital and you are unable to do many of the things that normal people can do. You also had to have IVF to enable you to have children. However, you think people are too negative about cystic fibrosis. You feel that it is right for you to be able to choose whether or not to have a family. You don’t feel that cystic fibrosis has affected your ability to be a good mother. If you do have to have a period in hospital then your husband is able to look after the children. Fortunately, you are in good health so this does not happen very often. There is also the hope that gene therapy will become available to treat your condition and if this is successful there is no reason why you should not live a full and healthy life.

You are Mr John Hewitt, Jane’s husband. You are 32 years old, and have a well-paid job developing computer software. This means that you are able to work from home a lot of the time, which is very useful if Jane has a bad day or has to go into hospital. When you got married, you didn’t put Jane under any pressure to have children. It was something you both discussed, and you both felt that you wanted to go ahead and start a family even if it meant using IVF. Both of you realise that Jane could die before the children reach adulthood, but then no parent can ever be certain that this won’t happen to them. Furthermore, you have a very happy and stable marriage. Many children at school with your own children come from single parent families. If the worst were to happen, you would be in a good position to raise the children yourself. You understand that although your children do not have CF, they both carry the CF allele and could pass it on to their children. This is something that you and Jane talked about before having children. However, you know that prenatal testing would be available and medical advances are being made in CF treatment, so when the time comes for your children to think about having children themselves, the situation could be much better.

You are Dr Sam Healham, a doctor who works in a hospital treating patients with cystic fibrosis. You have been invited on to the TV programme to tell the audience about cystic fibrosis. You need to prepare a short presentation to tell people, in clear and simple terms, what cystic fibrosis is and what symptoms it causes. Explain how the life of someone with CF will be different from normal people. You should mention physiotherapy and the medication needed by CF patients, including antibiotics and the new drug Ivacaftor, which is effective in CF patients with a particular mutation.

Salters-Nuffield Advanced Biology Resources

Activity 2.20 Student Sheet

You are Alex G Gnome, a genetic counsellor. Your job is to talk to people who may have genetic conditions in their family. You always explain to the people you see how a condition is inherited, how it affects an individual and what treatment is available for the condition. However, you never express opinions about whether they should or should not go ahead and have children, as that is a decision for the individual. You really believe that there are no ‘right’ or ‘wrong’ answers, just decisions that are right or wrong for particular individuals. Over the years, you have seen people in similar

circumstances make very different decisions for themselves.

You have been invited onto this TV programme to explain how cystic fibrosis is inherited. You need to explain that two people with no family history of CF at all can have a cystic fibrosis child, since 1 person in 25 in the Caucasian (white) population of Britain is a carrier of the CF allele. You should also be prepared to talk about how embryos can be screened for the presence of the CF allele, so that people who carry CF can be enabled to have a child that does not suffer from CF.

You are Dr Pat Swapham, a doctor researching gene therapy. The main treatment currently available for CF patients, apart from physiotherapy, antibiotics and a few other drugs, is a heart–lung transplant. In the hospital where you work, you have seen far too many CF patients who have died waiting for a transplant, because so few are available. This is what is driving your team to research an effective method of gene therapy. You are working on putting copies of the normal allele into

liposomes which are inhaled by CF sufferers, rather like an asthma inhaler. In early trials, this has not yet been very effective, but you are working on ways to improve it. You are also in touch with a team in the United States who are researching gene therapy. They are using a disabled virus to get the normal allele into cells. You need to be able to explain, in simple terms, how heart–lung transplants can be used to treat CF patients and what gene therapy is.

You are Chris Morrall, a member of a pressure group called Kids Have Rights. You think it is very wrong for the Hewitts to have had two children, knowing that Mrs Hewitt has a potentially life- threatening condition. You believe that children need two parents and that the mother is particularly important. It will be very traumatic for the children if they have to watch her getting worse and then dying. As they get older, they may have to take on a caring role and this is unfair at a time in their lives when they should be enjoying themselves. You also feel that by passing a copy of the CF allele onto each of her children Mrs Hewitt has put them in a very difficult position. If they want to have children one day, they will have the dilemma of knowing that they could pass the allele on to these children. They could opt for embryo- or gamete-screening, but many people find embryo-screening ethically unacceptable, since embryos are created that are destroyed if they carry the CF allele. You think that the Hewitts have been very selfish in choosing to have children. If they had put the children’s interests first, they would certainly have decided to remain childless or to adopt children.

Useful websites

Purpose

 To review the ideas covered in Topic 2 using role play.

In this role play, you will need to issue roles to members of the group. The roles are:  Nikki Pond, a well-known TV presenter

 Mrs Jane Hewitt, a mother of two who has cystic fibrosis (CF)  Mr John Hewitt, Jane’s husband

 Dr Sam Healham, a doctor who works in a hospital treating patients with CF  Alex G Gnome, a genetic counsellor

 Dr Pat Swapham, a doctor researching gene therapy

 Chris Morrall, a member of a pressure group called Kids Have Rights.

Procedure

If you have a large group, you may decide to allocate two or three people to each role. This means that the preparation work can be shared between people, but only one will actually present their views on the programme. Any additional students will be part of the audience, but if they prepare by reading around the subject, they may be in a position to ask some searching questions of the people on the show. You are advised to select the person who plays the role of Nikki Pond very carefully, as this person has the task of organising the whole TV programme and chairing the discussion.

Gene therapy is not in the specification so you might decide not to include Dr Pat Swapham in the role play, although it is a current area of research and of value in the ethical discussion. You might include the role, but advise the student to provide a brief overview rather than detail of gene therapy.

The students need to be told that they must present the views of the person they are playing, not their own views, but any details not given in the brief may be made up. The experts should be familiar with their role, but also they need to be prepared for questions. They should try to think of questions they might be asked in advance and have suitable answers prepared. For example, Pat Swapham might be asked about the availability of human organs for transplant. The students will need 45 minutes to an hour to prepare for the role play. For the role play itself, it may be helpful to arrange the room so that the TV presenter can move around the audience, with the invited people sitting at the front. Making name badges to put in front of them may help everyone to identify with the roles. The members of the audience need to be encouraged to listen carefully and prepare suitable questions to ask when they are invited to do so.

While students are preparing for the role play, it would be a good idea to move from group to group to see how they are progressing. If you find that students are not preparing as well as they might, you could offer them some help. Some weblinks are provided, which will offer factual information. Some suggested questions you could ask them are also given.

After the role play, it might be a good idea to have a brief discussion with the students about their experiences and what the role play revealed. For example, you might want to ask them if they actually agree with the point of view they expressed in the role play and whether or not it has now changed their opinion of CF.

In document NEW SPEC UNIT 1 (TOPIC 2) (Page 124-128)