Headline bioethics

June 3, 2011

The Headline Bioethics study guides are being hosted on the Virtual Genetics Education Centre at the University of Leicester

Headline bioethics is a new series of resources for teaching about bioethics. There will be two styles of Headline bioethics resources – study guides and commentaries. For both sets of material, each resource is focussed around a news story which raises interesting ethical question in the fields of biology and biomedicine. The selected stories must all be available as a video clip on the BBC news website.

Study guides include background information and structured worksheets which teachers can either use “of the shelf” or customise for their own purposes. Commentaries are authored by undergraduate students and offer reflections on some of the ethical issues raised by the news story.

The ethics of GM crops is one of the topics considered in Headline Bioethics

The first two study guides, on Genetically Modified crops and Preimplantation Genetic Diagnosis, are now available.  These Headline bioethics resources was authored by Sarah Curtis, a TULIP intern at the University of Leicester. If you have thoughts about these materials, or suggestions for future topics that you’d like to see covered in this way, then please let us know.

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

February 9, 2009
Watch this edition of The Daily Politics Show via BBC iPlayer (freely available until February 10th 2009)

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.

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More tricky decisions – Inside the ethics committee

August 12, 2008
Visit the Inside the Ethics Committee homepage at BBC Radio 4

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.

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The Family Man – playing God at the fertility clinic?

June 23, 2008

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.

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Genetic testing – Child of our time

January 31, 2008

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

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. Read the rest of this entry »

Exploiting Genetic Knowledge – Visions of the Future (2)

January 11, 2008

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 21st 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). Read the rest of this entry »

Introducing our “Extended commentaries”

September 6, 2007

As the number of resources on BioethicsBytes continues to grow, so too does the range and diversity of the materials we are offering.  We have recently launched a new genre, the BioethicsBytes Extended Commentaries.  As the name implies, these articles pick up on one or more theme arising from a book, film or programme but discuss the issue(s) in a broader context. The Extended Commentaries draw on a wider range of academic texts than would be usual for a standard BioethicBytes review. They will normally be linked to a shorter post on the main blog.

At present there are four Extended Commentaries on:

Transgenics and a world of “limitless possibilities” – concerning issues arising from the first documentary in the Animal Farm series (Channel 4, March and April 2007), including medical v non-medical applications of transgenic organisms, connections with the debate about genetically-modified (GM) food, and a consideration of what is ‘natural’

The “pharmaceutical farm” – discusses speciesism, identity and the ethical treatment of experimental animals, as prompted by the second episode of Animal Farm

Making “creatures that work for us” –  looks at the medical benefits from transgenic animals, the modification of animals for our pleasure (specifically the transgenic GloFish) and the development of animals specifically to counter mankind’s impact on the environment, all of which were issues arising in the third programme of the Animal Farm series

The future of our families? – a consideration of some of the ethical concerns about saviour siblings, including illustrations drawn from Jodi Picoult’s novel My Sister’s Keeper

Further Extended Commentaries will follow in due course.

Choosing our children? – GATTACA

August 29, 2007

(Warning: contains plot spoliers!)  Produced more that a decade ago, GATTACA remains one of the most thought-provoking cinematic visions of a world where current breakthroughs in genetics have been taken to one possible extreme.  The premise of the film is neatly summarised in the trailer (which is included as an extra feature on the DVD):
Genetics – what can it mean?  The ability to perfect the physical and mental characteristics of every unborn child.  In the not too distant future, our DNA will determine everything about us.  A minute drop of blood, saliva or a single hair determines where you can work, who you should marry, what you are capable of achieving.  In a society where success is determined by science, divided by the standards of perfection, one man’s only chance is to hide his own identity by borrowing someone else’s.”

From a young age, Vincent, the central character of the story (played by Ethan Hawke), has longed to be an astronaut.  Unfortunately for Vincent, however, he was conceived by his parents in the traditional manner and has inherited with their genes significant risk factors for a number of diseases, notably a 99% risk of heart disease.  In a society where most children are conceived in vitro and screened for inheritable diseases, physical characteristics and other ‘potentially prejudicial conditions’, Vincent has no chance of passing the selection process to enter the GATTACA academy and fulfil his dream to go into space; he is ‘a utero, a faith-birth, an In-valid’.  As he bemoans in the voiceover “I’ll never understand what possessed my mother to put her faith in God’s hands rather than those of her local geneticist” (9:04), adding later “It didn’t matter how much I lied on my resume, my real resume was in my cells.  Why should anybody invest all that money to train me, when there are a thousand applicants with a far cleaner profile?” (15:12).

Unwilling to accept the fate determined by his genes, Vincent resorts to extreme measures.  Via a secretive middle-man he is put in touch with Jerome (Jude Law), who was genetically selected by his parents and, as such, is  ‘a Valid, a vitro, a made-man’. Jerome may have the genetic credentials to succeed, but he has been involved on a car accident and is now confined to a wheelchair. He is willing to sell his genetic identity to Vincent; “You could go anywhere with this guy’s helix tucked under your arm” enthuses the agent (23:35).  So it is that Vincent becomes ‘a borrowed ladder, a de-gene-rate’ – somebody who pays for blood and urine, skin cells and hair from a Valid in order to cheat the ID tests and routine screening at the workplace and masquerade as a different genetic persona. 

GATTACA offers huge potential for teaching.  The whole film could be shown to students, but most of the interesting science and bioethics really occurs in the first half hour.  The best single clip for conveying the main issues involves Vincent’s parents going to the genetic service to order their second child (10:35 to 12:37, starting “Like most parents…”), although you may elect to start viewing from 9:04 and include Vincent’s discussion of his own birth.

The consultation at the clinic hints at the science that has been employed, but also raises nicely some of the issues concerning whether or not this would be a good development.  The parents seem willing to have diseases screened out, even to specify the gender, eye colour, hair and skin tone of their new child but wonder aloud whether it might be good to leave a few things to chance.  At this point they are put firmly in their place by the genetic counsellor, “you want to give your child the best possible start. Believe me, we have enough imperfections built in already, yout child doesn’t need any additional burdens” (11:55).

A second clip that may be worth including runs from 15:12 to 16:01, the section where Vincent discusses his genetic ‘resume’ and then goes on to highlight how, despite genetic discrimination being illegal, all sorts of secret testing could be undertaken if you refused to take an official screening.

What are some of the issues raised by the film?  One important one, of course, is whether the science might ever deliver a society of this kind.  This question has become increasingly important in the time since the film was made as a succession of real-life cases of pre-implantation genetic diagnosis (PGD) have moved the boundary concerning legally-permitted uses of PGD.

In reality, the particular technology used in the film could provide genetic selection, but not genetic enhancement. With conception still involving fertilisation of the mother’s eggs using the father’s sperm you can only choose from the range of genetic options that are represented within the genomes of the two parents.  To its credit, the film does actually make this point when the genetic counsellor explains “Keep in mind this child is still you, simply the best of you.  You could conceive naturally a thousand times and never get such a result” (11:58).

The technological limitations of the methods used in the film in no way invalidates discussion of the possible ethical consequences of this kind of screening, not least because other genetic breakthroughs may allow broader and more overt selection than is currently possible. 

The issue of discrimination based upon the results of genetic testing is already a genuine concern. In the UK, there is currently a voluntary moratorium on the use of gene test information by insurance companies, but this is due to be reviewed in 2011 and worries have been expressed by, for example, the cancer charity Breakthrough Breast Cancer and by the GeneWatch organisation that the current ban will not be secured. The depicition in the film of a kindergarten unwilling to take young Vincent as a pupil because the insurance won’t cover him is not necessarily far-fetched.

Being able to eradicate certain inherited diseases is clearly an appealing proposition; the key question, however, concerns the cost to individuals and to society that may be required to achieve such a goal.  It is also illuminating to consider the case of Jerome who, of course, had the right genes but his interaction with the environment (in this case, collision with a car) has rendered him unacceptable to a perfection-orientated society.   It reminds us that despite even the most strident models of genetic determinism,  our genes alone will never be enough to entirely define who we are as people.

GATTACA is repeated regularly on satellite movie channels.  It was shown on Channel 4 on September 4th 2005 (TRILT identifier: 001B88FE), and is available as an off-air recording from the BUFVC.

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

July 24, 2007

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 Sisters Keeper.

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.

The Needell Family – Bitter Inheritance (3)

July 19, 2007

This 40 minute documentary follows Juliet and Rob’s struggle to start a family, and how they turn to Pre-implantation Genetic Diagnosis (PGD) to help them in their quest. With an extensive history of miscarriages, Juliet reflects on how it feels when she falls pregnant “As soon as you find you are pregnant you just get this terrible feeling that, Oh God here we go again”. Due to this history, the couple opt for PGD, described in the programme as a “highly controversial treatment”, in order to select healthy embryos. Juliet is a carrier for a chromosomal abnormality in which large fragments of DNA have swapped places between chromosomes. Known as a ‘translocation’, this disorder does not prevent a woman becoming pregnant but the foetuses cannot develop correctly and a miscarriage is routinely induced. The couple describe how “absolutely terrible” it was when Juliet did actually give birth to a premature baby who was born with some abnormalities but later died (00:04:24 to 00:06:38). This programme provides an excellent insight into both the practicalities of PGD and the emotional hurdles the procedure brings. Read the rest of this entry »