Thalassaemia and Saviour Siblings

1. Thalassaemia and Saviour Siblings An Ethical Debate

2. Part A: Defining the Problem Jane and Ali have a son called Omar. Omar has Thalasseamia. Thalassaemia can only be cured by a bone marrow stem cell transplant. Unfortunately, neither Jane nor Ali’s stem cells match Omar’s stem cells. Jane and Ali decide to use IVF to have a baby with the same type of stem cells as Omar. Should Jane and Ali be allowed to have a baby so that the baby can donate his/her stem cells to Omar to cure him of Thalassaemia? 1. Highlight the key words in the problem. 2. Which words need to be clarified because you don’t understand them? 3. In one sentence, what is this task asking you to do?

3. Part A: Locating Information This task requires you to use the internet to find information on: (a) thalassaemia (b) bone marrow transplants (c) stem cell transplants Most of the information about these topics is written for doctors and other medical professionals. The following site is the best place to find reliable information that is easy to read: http://www.nlm.nih.gov/medlineplus/ency/article/000587.htm You will not need any other sites for this part of your assignment. • Click on the first box on the right-hand side “Mediline Plus topics” for a simple definition before you try to read the whole article. • Click on the underlined words for further definitions and information.

4. Part A: Locating Information (a) Describe thalassaemia, including its symptoms… (i) How can you get this problem? Thalassaemia is a hereditary disease which … (ii) What blood problem causes thalessemia? [The pictures on the right hand side of the page will help] Thalassaemia occurs when … (iii) How do you know if you have this problem? When a baby is born with thalassaemia… This changes when… The symptoms of thalassaemia include …

5. Part A: Locating Information (b) Describe how thalassaemia is passed on… (i) Re-read the subheading “Causes” and find the part which discusses parents. (ii) Identify the difference between thalassaemia major and thalassaemia minor. (iii) Turn this information into the kind of genetics jargon you’ve used in class. The heterozygous form of thalassaemia is called … . It is caused when … The homozygous form of thalassaemia is called … . It is caused when …

6. Part B: Applying Information (b) (ii) Describe how thalassaemia is passed on … This question asks you to include a punnet square diagram to explain the genetic differences between thalassaemia major and thalassaemia minor. Include these diagrams in your assignment. Thalassaemia Minor Thalassaemia Major

7. Part B: Selecting Information (b) Describe the current treatments for thalassaemia (i) Re-read the subheading “Treatment”. There are two main types of treatment for thalassemia, … and … (ii) A transplant always involves a person who gives part of their body (the donor) and a sick person who receives this body part (the patient or the recipient). Read the information about bone marrow transplants at: http://www.abmdr.org.au/donor_home.php?id=1 http://www.nhlbi.nih.gov/health/health-topics/topics/bmsct/ http://www.abmdr.org.au/faqs.php?id=0&menuid=11&mainid=1 Read a brochure about bone marrow transplants in many languages at: http://www.abmdr.org.au/donor_brochure.php?id=3&menuid=3&mainid=1 (iii) Define “bone marrow transplant” In a bone marrow transplant, the donor gives… This helps the recipient by…ing …. The best type of donor is usually … because … There are minimal risks to the donor. These risks include…

8. Part B: Selecting Information (b) Describe the current treatments for thalassaemia (i) What is special an umbilical cord? The cells in an umbilical cord are special because … (ii) Read the information about cord stem cell transplants at: http://www.abmdr.org.au/dynamic_menus.php?id=4&menuid=88&mainid=4 (iii) Define “cord stem cell transplant” In a cord stem cell transplant, the donor gives… This helps the recipient by…ing …. There are no risks to the donor because … (iv) Read the information issues relating to transplants at: http://www.stemcelltherapies.org/safety.htm http://www.patient.co.uk/health/Stem-Cell-Transplant.htm ( “main risks”) (v) List problems that can be caused by cord stem cell transplants. Although there are no risks to the donor, there are several issues with cord stem cell transplants. Firstly, … Secondly … Thirdly, …

9. Part C: Organising Information This section of the task requires you to find reasons why Jane and Ali should or should not have another baby and use her/his stem cells to help Omar. There are many different sort of arguments including (a) ethical arguments (Is it morally right or wrong?) (b) legal arguments (Is it against the law in that country?) (c) psychological arguments (Which/whose emotions are involved?) (d) welfare arguments (how will it affect the new child?) (e) medical arguments (Is saving a life worth a little pain?) (f) political arguments (Should politicians make a law about it?) The next few slides will examine some of these arguments .

10. Part C: Organising Information Read the following newspaper articles, chosen to support a range of viewpoints, and decide which type of arguments are used. Write the type of argument after each article. If it is a positive argument write it in green, if it is a negative argument write the word in red. This will help you organise the information for Part 2. USE THE TWO WORD DOCS IN THIS FOLDER! Thalassaemia – arguments Thalassaemia arguments Links.

11. Part C: Organising Information