Private Practice: Acting ethically at the Wellness Center?

(Warning – contains plot spoilers!) Private Practice is a spin-off from Seattle hospital drama Grey’s Anatomy in which Dr Addison Montgomery (Kate Walsh) moves from Seattle Grace to join the staff of the Ocean Wellness Center in Los Angeles.

I have to admit that I tired of Grey’s Anatomy during Season 1 and although I was aware it has spawned another series I had no desire to watch. All this changed, however, following an excellent talk on the programme, given by Dublin Doctor Audrey Dillon at the 4th Postgraduate Bioethics Conference (Belfast, June 2009).

The writers of Private Practice, headed by Shonda Rhimes, have made a conscious decision to incorporate ethical issues into the storylines (see ‘Private Practice’ explores bioethics questions). This means, therefore, that the series may well throw up some interesting case studies as discussion starters.

At the time of writing, Living TV (UK) has just started transmission of Season 2 (see here for Episode guide). A Family Thing, the first programme of the series, was aired on 25th June 2009 (TRILT code 00FC042B). True to promise, it contained two subplots featuring ethical dilemmas.

Saviour siblings – a donor by design?

In the first (starting 7 minutes in), Molly and Eric Madison present at the clinic demanding that the staff deliver their baby daughter that day, despite the fact that she is only 27 weeks gestation. The girl, it transpires, has been conceived following Pre-implantation Genetic Diagnosis, to be a ‘saviour sibling’ for her older brother, Jason.  The boy has leukaemia and has had his own bone marrow wiped out in preparation for a transplant from a donor who has now fallen unwell with pneumonia. He is therefore immunocompromised and urgently needs umbilical stem cells courtesy of the new child.

The Daily Politics Show – “Should we be more wary of genetic screening?”

The Daily Politics Show

The edition of The Daily Politics Show broadcast on BBC2 on February 3rd 2009 contained an item on the use of embryo screening during IVF (see 00:15:42 to 00:22:25). The section begins with a short explanatory VT, which covers the technique of prenatal genetic diagnosis – PGD – and its uses in IVF, and some of the main ethical positions. The programme’s hosts – Andew Neil and Sangita Myska – then discuss the ethical implications of genetic screening and embryo selection with Professor Robert Winston. This short post summaries the main bioethical arguments put forward in this 7 minute clip, and suggests how it may be used in teaching.

More tricky decisions – Inside the ethics committee

Visit the Inside the Ethics Committee homepage at BBC Radio 4

The fourth series of BBC Radio 4’s bioethics programme Inside the Ethics Committee began on August 6 2008, and discussed some of the ethical issues involved in the creation of ‘saviour siblings’ (first broadcast on BBC Radio 4, at 20.00, August 6 2008 and repeated on August 9 2008, at 22.15). Vivienne Parry and a panel of experts discuss the ethical issues around real-life medical cases, on this occasion the dilemma involves a young child, Catherine, and her medical treatment. Previous BioethicsBytes posts have noted the utility of this series (see the post Making tricky decisions – Inside the ethics committee), and this episode is no different.

Shortly after she was born Catherine was diagnosed with Diamond Blackfan Anaemia (DBA). DBA is a rare blood disorder caused by a genetic mutation. In general, its treatment is “gruelling” (00:02:27) and the prognosis is poor. As in several previous cases (notably, the Whitaker, Fletcher and Mariethoz families), Catherine’s parents were offered the option of using preimplantation genetic diagnosis (PGD) for tissue typing alone in order to create a ‘saviour sibling’ whose umbilical cord blood could be used to treat Catherine’s DBA.

Many of the ethical issues involved in this choice have been dealt with in past BioethicsBytes posts (see The Future of Our Families? and the extended commentary that accompanies that post), however this edition of Inside the Ethics Committee brings consideration of these issues up to date. Though the majority of the ethical issues raised are covered in our existing posts, some of the additional details noted here about DBA and the testing procedure introduce new complications into the ethical debate.

The Family Man – playing God at the fertility clinic?

The Family Man – Dr Patrick Stowe

(Warning: contains plot spoilers!) The Family Man is a three part BBC 1 drama centred on the successful (fictional) ‘Wishart Fertility Clinic’. The patriarch of the clinic is Dr Patrick Stowe (Trevor Eve) whom is driven by pursuit of better ways to help distressed couples have a child. The drama follows four couples facing a spectrum of fertility problems. In an attempt to fulfil their dreams, they turn to Dr Stowe to help find the answers. At times this tests the legal parameters of fertility treatment in the United Kingdom, and as such raises a whole raft of bioethical issues.

Genetic testing – Child of our time

In 2000, the BBC launched Child of our time, an ambitious experiment to record the lives of twenty-five children over twenty years. The aim was to establish how our genes and the environment combine to make us who we are and shape our personality. Sir Robert Winston (IVF – A child against all odds) the fertility expert and TV personality presents the programmes as they follow a series of newborns from before birth through to adulthood.

BBC ‘Child of our time’ Homepage

In this post we focus on two segments for the first series of Child of our time.  These are: Series 1 The journey begins (00:22:00 – 00:28:40) and  Series 1 – Birthdays (00:23:00 – 00:24:26).  Both episodes are available online, see bottom of this post for details about how to access them.

This bioethical discussion, focuses on one set of parents, Neil and Gillian Roberts, who decide to be genetically tested for the Angiotensin I converting enzyme (ACE) gene. It has been suggested that certain variants of this gene help increase stamina and efficient use of oxygen, and thus have been linked to success in sporting activities The father, a keen athlete and sportsman, suggests that both he and the future mother be tested for this variant to establish whether their new born might subsequently have a chance of inheriting it. The result (which appears in the ‘Birthdays’ episode) is negative and neither parent has this particular variant.

The Future of Our Families? – ‘My Sister’s Keeper’ (Picoult, 2004)

To date only a handful of, so called, ‘saviour siblings’ have been born worldwide. These children (the oldest is now 8 years old) were conceived by IVF and have been specially selected to be tissue matches for an existing, ailing sibling. In general, these siblings suffer from incurable – though often treatable – anaemias or leukaemias, some of which have a genetic component. Their newborn siblings, as the term saviour suggests, are ‘designed’ to save their lives. This is the background to American author Jodi Picoult’s 2004 novel My Sister’s Keeper. The story follows sisters’ Kate and Anna Fitzgerald as they, and their family, confront extraordinary circumstances.

Picoult (2004). “My Sister’s Keeper”. Hodder and Stoughton: London.

Kate, 16, who suffers from Acute Promyelocytic Leukemia (APL) – a rare and aggressive form of cancer – is dying. Her younger sister, Anna, 13, was born to be her ‘saviour’. Anna is an human leukocyte antigen (HLA) matched donor for Kate, and while in real cases it is only umbilical cord blood that has been donated, Picoult’s novel imagines a situation in which much more is required. As Picoult’s story progresses we learn that Kate did indeed receive a transfusion of cells taken from Anna’s umbilical cord blood. This blood, rich in compatible stem cells, was intended to repopulate her bone marrow and effectively cure her leukaemia – a treatment which apparently worked. However, as is obvious from what, in the book, constitutes the current situation, this was only a temporary phenomenon. Picoult’s Kate suffers a relapse, which, following initial treatment with Anna’s compatible platelets and ultimately her donated bone marrow, locks them both into a seemingly endless cycle of, not only, operations and hospital visits, but also, responsibility, guilt, love and resentment.

Over the years Picoult describes the numerous procedures the character Anna goes through in her unchosen efforts to fulfil the role of ‘saviour’. This culminates in the prospect of kidney donation – the book’s present day. Faced with this Anna hires a lawyer, Campbell, and takes her parents to court in order to “petition for medical emancipation” (Picoult, 2004: 49). The book follows the build up to, conduct and aftermath of this action, through which Anna fights for the right to refuse this donation – an outcome, both she, and her family, know Kate will die without.

As with many works of fiction, Picoult takes current science, imagines ‘what could be’, and explores some of the social, psychological, emotional and – in this case legal – consequences that might follow. As a work of fiction My Sister’s Keeper seems a scarily realistic, though also, moving picture of a normal family under extreme pressure. However, as a source of insight into the ethical dilemmas presented by the creation of ‘saviour siblings’ it also has its value. While not presenting arguments according to philosophical principles, this book functions as a very effective exploration of possible social implications and potential endpoints of the use of HLA typing in this way. Below are just some of the common bioethical concerns about the creation of saviour siblings that My Sisters Keeper addresses (the page numbers given here refer to episodes, conversations or interactions within the book that highlight each issue particularly well):

• The welfare and best interests of the child to be born – pages 286-289 illustrate how the donation of umbilical cord blood may turn into a succession of more invasive and therefore more ethically problematic donations, also how, in practice, the best interests of the saviour sibling may be balanced against those of the child to be saved
• The instrumentalisation of the child – pages 64-65 and the bathroom scene on page 25 show the Fitzgeralds as a complete family with Anna as an addition only to save Kate, while pages 53-54, 196-197 and 405-407 show her as a loved and valued family member, just like any other
• Consent – pages 20-21 and 292-296 provide a good illustration of how consent to non-therapeutic medical treatment (e.g. bone marrow or blood donation) is handled currently for minors
• The long-term experience of the child – pages 1-2 and 89-90 are short but powerful examples of how Anna, at 13, experiences being a saviour sibling, and how that knowledge has become a part of her identity.

These themes are explored in greater depth in the BioethicsBytes Extended Commentary that accompanies this post. The commentary also highlights how Picoult’s story emerged from ethical arguments around the creation of saviour siblings in reality, and how My Sister’s Keeper elaborates some of these arguments through the multiple viewpoints of the characters and their interactions.

My Sister’s Keeper was written by Jodi Picoult, and published in the UK in 2005 by Hodder and Stoughton, London. ISBN: 9780340835463.

Update 4th April 2015: The film adaptation of My Sister’s Keeper is now available to members of subscribing institutions via Box of Broadcasts.