Hazel McHaffie

Questions & Challenges for Saving Sebastian

Literary questions for reading groups

For discussion
  • Q.Could you summarise in no more than four adjectives the main characteristics of Justin, Scott, Jack, Candice, Yasmeen, and Natalie? How true to form is their behaviour as the plot unfolds?
  • Q.Who is your favourite character in the story and why?
  • Q.Justin is the pivotal character around whom all the different strands of the book twine. How satisfied were you with this structure given that it’s the Opakanjos and Zairs whose stories form the strongest narrative threads?
  • Q.If you were the parents of the twins would you wish to know which one of you was not biologically related to Destiny? Does Justin’s argument for not knowing (Chapter 38) persuade you?
  • Q.At what points did your own suspicions about what happened in the lab change? What influenced your thinking?
  • Q.The relationship between Candice and Samuel changes dramatically. How much is this a feature of becoming parents, or the circumstances leading to Destiny’s conception, or their basic personalities? Could the problems have been circumvented?
  • Q.All the Zair family suffer in various ways because of Sebastian’s illness. Whose burden is greatest, would you say? Without the benefit of hindsight the nurse in the prologue believes Sebastian should be spared years of suffering and allowed to die peacefully. Do you agree?
  • Q.Have your views on a) fertility treatment and b) saviour siblings changed as a result of reading this book?
    Professor Ben Norton in Chapter 33 says that society and individuals need to have a weighty reason to deny the Zairs the opportunity to save the life of their son. Could you give a weighty enough reason?
    Bobby suggests (Chapter 28) that a) infertility treatment might not be in the interests of would-be parents and b) selection of embryos devalues the life of disabled people. Do you agree with her arguments?
    If you were the consultant approached by the Zairs would you have supported their cause?
  • Q.The destruction of healthy embryos involved in IVF with PGD is a major stumbling block for Yasmeen. Would it be for you?
  • Q. What do you think about the creation of embryos that are part human, part animal? Have your opinions changed after reading this story?
  • Q. Jennifer Ruskin, on the ethics committee, wheels out the old argument about slippery slopes (Chapter 26). Melody Turner, the pro-life campaigner, picks up the same theme (Chapter 33). To what extent do you agree with them? Would you be persuaded by Justin’s defence? Are you influenced by the personalities of the individuals?
  • Q. The radio (Chapter 28) and TV (Chapter 33) news reports summarise the debate about saviour siblings. Whose arguments are most persuasive in your judgement?
  • Q. Scott’s moral boundaries changed over time and with circumstances. Did your sympathies change with more knowledge of what drives him? At what point do you feel he overstepped an acceptable limit? Were his motivations sufficient reason to go beyond the legally allowable? When he revealed all to his brother in Chapter 39 what was your overriding response?
  • Q. Natalie is under pressure to deliver a newsworthy story. How far do you think her tactics are justified? She promises Scott their conversations in private are confidential. Would you trust her?
  • Q. How far is it legitimate for protesters to go in ‘defending the rights of innocent creatures’? Justin asks Dan Cruse, ‘Is violence ever justified?’ Is it?
  • Q. Karim acquired information about the Opakanjos’ address in the course of his professional work. Was he right to divulge it to his wife?
  • Q. What part do you think Jack’s sense of humour plays in the story? Why do you think it took so long for him to share his suspicions with Justin?

Moral and ethical questions

Saving Sebastian revolves around the central theme of rights and interests and confidentiality.

Rights and interests
  • Q. One of the doctors, Kristen, gets upset when things go wrong for her patients. Embryologist, Scott, maintains ‘a robotic detachment’. Which approach would you prefer if a) you were an infertile woman, b) you were their colleague or c) you were their employer?
  • Q. Samuel and Candice’s opinions about having Destiny screened differ. Who do you think is right? Why? How much did their respective backgrounds influence their thinking? With whom are you most in sympathy?
  • Q. Justin distinguishes between the Opakanjos’ concerns and those of the HFEA. Can the two be reconciled?
  • Q. Bobby says she wouldn’t want to be born for her spare parts. Imagine you are different members of the Zair family: a) Yasmeen b) Karim c) Sebastian d) Vashti Armani. To what extent would your own interests in the creation of a saviour sibling merge or collide with those of others?
  • Q. Yasmeen and Karim know there is a chance the new baby might also have Diamond Blackfan’s Anaemia. Would you have taken this risk?
  • Q. When Yasmeen shares her doubts with Karim she says, ‘But say there were four other embryos that didn’t match Bassy. And they were all perfect, no problems of any kind. You’d want to have the child that had the best life for himself, not the one that gave Bassy a chance but made his own life a nightmare, wouldn’t you?’ How would you answer her?
Autonomy and paternalism
  • Q. Justin forms judgements about his patients’ potential as parents. Is this appropriate? How would your personal assessment of Yasmeen, Candice and Desirée as mothers differ from his?
  • Q.Stealth and secrecy were part of the fabric of Justin’s working life. People could have a myriad of reasons for seeking anonymity in the business of reproduction.’ (P45). What reasons can you think of?
  • Q. Although there is no legal requirement for Justin to take the case to anyone other than the HFEA, he seeks the approval of three other committees. Is this prudence or overkill?
  • Q. Barbara Down on the ethics committee asks Justin if he would personally have a saviour sibling in the same circumstances. Is this a fair question? Would his answer influence your thinking?
  • Q. If you were the parents of the twins would you wish to know which one of you was not biologically related to Destiny? Does Justin’s argument for not knowing (Chapter 38) persuade you?
Confidentiality and the right to know
  • Q. If you discovered your gametes had been used to create someone else’s child how much would you want to know, and how far would you wish to be involved in the life of that child? Would the fact that you did or did not have other children influence your decision?
  • Q. When Samuel and Candice attend the clinic with the twins the receptionist calls them by their name. This means other patients know who they are. Given the media interest and the implications for the family and the clinic, what do you think she should have done?
  • Q. When Justin reports the birth of Destiny to the HFEA the inspector says, ‘We’ll do our best to make this investigation as low key as possible.’ What do you think of the implications behind this reassurance?
  • Q. Jack lives with Patsy. The Opakanjos attend the surgery where she works. How much should he tell her of a) the facts around the twins’ conception and b) his suspicions? 
  • Q. Natalie’s job is to report a newsworthy story. How much are the public entitled to know, would you say? How far do you think her tactics are justified? 
  • Q. Justin thinks that if protesters knew how much agonising went into decisions about difficult cases they’d be less quick to judge. Do you think accurate knowledge is the key?
Balance of burdens and benefits
  • Q. While the issue remains theoretical Yasmeen and Karim believe they should publicise their son’s plight and their need for a saviour sibling. Once it becomes a reality Yasmeen has doubts. Why does this change and which course of action was more prudent, do you think? 
  • Q. In the search for the missing black gamete Justin contemplates the destruction of other couples’ hard-won embryos. Do you think the risk justifies such an action? 
  • Q. Scott believes the benefits of what he is doing in the lab justify the risks and burdens. Is he right? 
  • Q. If what has happened in the lab is exposed, Justin believes it could result in a reduction in public and financial support . The whole future of the centre could be affected. Would this be justified? Is the risk enough to advocate secrecy?
Ethical issues relating to assisted conception
  • Q. Regulations governing fertility treatment are strict. But mistakes can easily happen. As Justin points out ‘No-one is in the clear. Because labels could be swapped. Tubes, lids, dishes could be interchanged. Without trace. Without a signature. Innocent mistakes’. And ‘There’s no getting away from the fact that we’re always only a misspelt name, a wrong label, a changed consonant, away from trouble’. Would more draconian rules have prevented what happened to the Opakanjos? 
  • Q. Bobby suggests (Chapter 28) that a) infertility treatment might not be in the interests of would-be parents and b) selection of embryos devalues the life of disabled people. Do you agree with her arguments?
Ethical issues relating to the creation of saviour siblings
  • Q. The HFEA have recently changed their position and now allow the creation of saviour siblings to take place in this country. Do you think they were right do so?
  • Q. Yasmeen feels as if her embryos are sitting an exam, their lives depend on it. But the pass mark is being the same tissue type as Sebastian. Is this a fair analogy?
  •  Q. To what extent do you think couples should take steps to store donor material for their children? 
  • Q. The radio news item (Chapter 28) and TV account (Chapter 33) summarise the debate about saviour siblings. Whose arguments are most persuasive in your judgement?
  • Q. Professor Ben Norton in Chapter 33 says that society and individuals need to have a weighty reason to deny the Zairs the opportunity to save the life of their son. Could you give a weighty enough reason? 
  • Q. Bobby suggests (Chapter 28) that a) infertility treatment might not be in the interests of would-be parents and b) selection of embryos devalues the life of disabled people. Do you agree with her arguments?
Justice
  • Q. To what extent do you sympathise with the viewpoint of the demonstrators outside The Pemberton Fertility Clinic? Should they be permitted a voice?
  • Q. Justin heads The Pemberton Centre. Should he a) be dismissed or b) imprisoned for what has happened within his team?
Resource allocation
  • Q. Fertility treatment is under threat in the current financial climate. Do you think a) the Opakanjos should have received such lengthy treatment? and b) the Zairs’ case should have been funded? Should limits be set?