Ethics in the biosciences (Resource)

The Briefing contains recommendations about useful resources for teaching about various aspects of bioethics

Anyone involved in teaching ethics to bioscience students should get hold of a copy of Ethics in the biosciences: Resources, references and tools for ethics teaching in the biosciences. This is the second Briefing document produced by the UK Centre for Bioscience (the first was on Assessment).

The new booklet includes coverage of the following topics:

• Teaching ethics
• Assessing ethics
• Ethical theory: How are ethical decisions made?
• The ethics of being a scientist
• Environmental ethics
• Issues at the beginning of life
• Issues at the end of life
• Genetics and genomes
• Animal experimentation
• Transhumanism
• Ethics and Risk

Each chapter includes a short introduction written by an expert on the topic and then a recommendations of other resources (websites, books, articles, slides, videos, etc) which have proven to be useful in teaching on the subject.

In addition to the online version of the booklet, a number of hard copies have been produced – if you would like one please contact the UK Centre for Bioscience before December 2011 when, unfortunately, their activities will be substantially scaled back.

Bioethics videos: Class of 2011

For the past few years, Second year Medical Biochemistry students at the University of Leicester (and Medics taking the relevant module as a special studies course) have been asked to produce short videos on a bioethical topic. It seemed a shame not to make their excellent videos more widely available, so we’ve started to post some to YouTube. Topics covered this time around included: organ trading, egg donation, brain imaging and public health initiatives.

The team looking at the ethics of organ trading based their video around a woman seeking a privately-organised transplant for her daughter. This issue is highly topical at the moment, with the recent publication of Scott Carney’s book The Red Market: On the Trail of the World’s Organ Brokers, Bone Thieves, Blood Farmers, and Child Traffickers.

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How old is too old to give birth?

Accounts of post-menopausal women having children have become a news staple over the past decade. From a UK perspective, a number of cases have been particularly prominent, these include: 60 year old Liz Buttle, who allegedly declared her age as 49 when receiving fertility treatment prior to the birth of her son in 1997; Lynne Bezant who was known to be 56 before receiving treatment that resulted in her giving birth to twins in May 2001; 62 year old Patricia Rashbrook who gave birth to a son in July 2006, having travelled to the former Soviet Union to achieve her conception with the aid of maverick Italian specialist Severino Antinori; and Elizabeth Adeney who, by giving birth just shy of 67, became Britain’s oldest mum.

Amanda Blue’s excellent Cutting Edge documentary The World’s Oldest Mums (Channel 4, 23rd July 2009) examined the cases of four women who were all at or near the age of 70 when the film was made.

Jenny Brown: 72 year old Jenny is “bursting to be a mother” and is seeking a clinic willing to help her to do so. The film shows her applying to, and being turned down by, the Bridge Centre in London and later trying to contact fertility specialists in Eastern Europe to fulfil her dream.

72 year old Jenny is seeking a clinic in the former Soviet Union willing to help her to have a child

Rajo Devi: Currently, the oldest mother in the world is 70 year old Indian Rajo Devi. Partly due to the social stigma associated with childlessness, India is becoming a major centre for the fertility treatment of older women; more than half of the 200 patients at one IVF clinic featured in the documentary are aged over 50.

Rajo Devi became a mother at 70 and (at the time of writing) is the oldest mother in the world

Mary Shearing: Interviews with 16 year old twins Amy and Kelly, reinforce the fact that fertility treatment to allow postmenopausal women per se is not a new phenomenon. The fact that their mother Mary Shearing has only recently turned 70, however, emphasises that the boundaries of possibility (and acceptability?) are certainly shifting.

Mary Shearing gave birth to twin daughters in November 1992 at the age of 53

Maria del Carmen Bousada de Lara: The saddest story in the documentary, concerns Maria del Carmen – saddest both in terms of the circumstances under which she came to find herself seeking fertility treatment, and the fact that she died a few weeks after the filming of her interview (see here for news report).

Maria died from ovarian cancer when her twin boys were 2 years old

With three brothers but no sister, Maria faithfully fulfilled the expected role and devoted much of her adult life to caring for her widowed mother. It was to Maria’s great misfortune that her mother lived to be over 100. It was only after this time that Maria felt able to seek fertility treatment, covertly flying to the USA and lying about her age to do so.

Is it right to give elderly women help to get pregnant?
What insights do these case offer regarding the ethics of helping post-menopausal women to have children? These four examples illustrate some of the arguments presented both in favour and in opposition to allowing fertility treatment for older women.

Arguments in favour
Advocates of fertility treatment for older women may argue in terms of individual autonomy, or may speak of rights, either rights to have a family per se, or more specifically under Article 8 of the Human Rights Act/European Convention of Human Rights, for the right to privacy. It is also possible to frame arguments in terms of the suffering of childlessness. In the case of Rajo Devi, it is clear that the stigma is greater; in her culture it is considered bad luck to encounter a barren woman on the street before lunchtime and in consequence her recent pregnancy has brought additional relief from ostracism (against this, it might be argued, we ought to challenge prejudice, not pander to it).

Advocates of treatment for older mothers may also highlight the unfair way in which women (in western culture, in particular) are villified for having families in their advanced years, whilst men who father children at equivalent ages are not judged in the same way, and may even by celebrated for their virility. Eric Clapton, for example had three daughters in his late 50s, and Rod Stewart‘s seventh child was born when he was 60.

Arguments against treatment
For many people there is an inherent ‘yuk’ factor regarding older mothers. How can this moral repugnance be substantiated? It has been argued that embarking on a family at extreme ages demonstrates gross selfishness. This, however, can be a misleading oversimplification. Whilst it may be the case that a woman has put career development before family (there is some evidence of this in the case of Jenny Brown, for example), there may be other reasons for the delay. As demonstrated in the case of Maria del Carmen, it was actually a lack of selfishness that resulted in her leaving it so late to start a family, since she had devoted her life to caring for her mother. Regardless of the motivation, Robert Winston is amongst several commentators warning women not to assume that IVF will routinely provide them with a family at a later stage (see Career women given ‘false optimism’ by fertility clinics).

Those opposed to fertility treatment for older women may argue that there are health risks for the mother, and risks that her children will likely lose their mum at a tender age. Taking each of these in turn; it is certainly true that becoming a mother late in one’s life can take a terrible toll on the body. Mary Shearing comes across as a remarkably active 70 year old – we see her in the film water-skiing and working out in the gym. She was, however, ‘only’ 53 when she had her twins. Rajo complains of ongoing stomach pains after the birth and, although it is not expressly suggested in the documentary, there may well be a connection between the fertility treatment received by Maria and her subsequent ovarian cancer.

Regarding the premature death of their mother, it is – of course – true that over the course of history mothers have generally died much earlier in the life of their children than is the norm today; indeed, many would have died during childbirth itself. Nevertheless, there does seem to be a qualitative difference between the possibility of a parent dying during your childhood and the likelihood that this will be the case. Maria’s case is a sad reminder of this reality.

Additionally, it may be stressed that donated oocytes are a relatively rare commodity within healthcare provision and since it is a biological truism that fertility treatment is less successful for older women than for younger, available eggs should be prioritised towards younger candidates.

If not age, what other criteria should be used to determine who gets the egg? Should priority be given to women who have not had children before? Several of the cited examples already had adult children, including Mary Shearing and Lynne Bezant. Should onset of the menopause be a cut-off point? If so, what about women who have early menopause (ie before 45) or even premature menopause (in women under 40) ?

Ability to pay is a likely factor, particularly since NICE (the UK National Institute for Clinical Excellence) has state that only women under 40 can receive fertility treatment paid for on the NHS, and some primary care trusts (e.g. Oxfordshire) have set a lower age threshhold for publicly funded treatment. Receipt of treatment on the basis of ability to pay is, of course, identified as a source of injustice against the poor.

Even private clinics may impose some age-related criteria. It is interesting to observe that both Liz Buttle and Maria del Carmen lied about their age to receive treatment, and other evidence suggests that they are not alone in this (see Thousands lie to IVF clinics in desperation to have baby). We must remember too that differences between one jurisdiction and another can lead to patients receiving treatment elsewhere, e.g. Maria going to America and Jenny’s attempt to follow Patricia Rashbrook and others in going to the former Soviet Union (see Older British women head abroad for IVF).

Cutting Edge: The World’s Oldest Mums was first broadcast on Channel 4 at 9 pm on Thursday 23rd July 2009. At the time of writing it is available via 4OD their catch-up service. BUFVC members can obtain a copy via their institutional representative in the usual way (TRILT ID: 0109BBFE).

(CJRW)

Could human reproductive cloning be a “Godsend”?

The fictitious "Godsend Institute", from which the film takes its name

(Warning: contains plot spoilers!) The film Godsend stars Robert De Niro as a maverick fertility expert who has perfected a technique for human reproductive cloning. Following the death of their son Adam, on the day after his eighth birthday, Dr Richard Wells (De Niro) offers his services to the Duncan family telling them “you can have him back” (00:11:27). Although Godsend’s convoluted plot is entertaining, it must be noted that the science is both inaccurate and misleading. Nevertheless, there are a number of clips that highlight some of the bioethical issues, not only around human reproductive cloning, but also in terms of the links between what is legal, what is moral, and what science can do.

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.

Epigenetics – The ghost in your genes

Epigenetics – Turning genes on and off

The BBC Horizon documentary The ghost in your genes, successfully explains a particularly complex field of science. Genetic inheritance has historically been thought of as involving the transmission of DNA from one generation to the next affected by occasional mutations in the DNA itself (00:04:37 – 00:05:50). “Up to now, inheritance is just the genes, the DNA sequence. I suspect that we’re going to be able to demonstrate that inheritance is more than that”, explains Professor Marcus Pembrey from the Institute of Child Health, UCL. A few scientists had hypothesised that the conventional genetic model and mode of inheritance was too simplistic to explain the complexity of human beings. The revelation that the human genome likely contains only about 30,000 genes (00:08:54 – 00:11:33), coupled with increasing experimental evidence, now leads scientists to believe that other factors allow genes to be switched on and off in response to environmental stimuli. The consequences of which may affect subsequent generations.

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.

Exploiting Genetic Knowledge – Visions of the Future (2)

The Biotech Revolution, the second episode of the BBC4 Visions of the Future series, continues to describe ways in which humanity is making a “historic transition from the age of scientific discovery to the age of scientific mastery”. Presenter Michio Kaku suggests that unlocking the basic code of life will allow us to “predetermine the destiny of life itself” and to manipulate it at the most fundamental level (Start-00:02:00).

The programme begins with Kaku having his “medical future rather than history” diagnosed via a series of genetic tests for complex diseases such as heart disease, diabetes and Alzheimer’s. He describes this as an “owner’s manual” which will enable him to have greater control of his health, and to allow others to perhaps prolong their life by decades (00:02:20-00:06:20 and 00:20:05-00:23: 20). As a scientist, he is eager to discover what secrets his genome may contain however, as a person, he says “wait a minute, this could be a Pandora’s Box… I’m looking at a side of me I have never seen before, a side that has potential medical problems lurking there”.

Some of the issues raised here mirror those found in the ITV1 broadcast The Killer in Me, which illustrated particularly well the anguish associated with having such tests and the way actions could be taken in light of the results. In this programme, in contrast, there is greater emphasis placed on the potential impact on relatives and wider society that may result from taking the tests. “We really want to respect your privacy and the privacy of your relatives” the physician emphasises to Kaku.  Much of the future of this testing, if not the present, relies upon “the last great discovery of the 21^st century, the Human Genome Project”.  Kaku believes that this event holds such significance that we will look at the history of medicine in two eras, “before genome and after genome”. “Having unravelled the fundamental code of our biology the stage is set for us to manipulate it” he adds (00:06:25-00:09:20).

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.