Headline Bioethics: Change to organ donation law in Wales?

[A printable version of this Headline Bioethics Commentary is available via this link]

Author: Christopher Jones

Clip: Will Wales change organ donation law?

Date of story: 8^th November 2011

Summary of story: The Welsh government’s has published a White Paper Proposals for Legislation on Organ and Tissue Donation: A Welsh Government White Paper in which they outline their intention to change the law regarding organ donation. In keeping with the rest of the UK, Wales current has an “opt-in” system, in which a person has to actively indicate (e.g. by signing organ donor register) that they give consent for their organs to be used by the NHS. Under the proposed system of presumed consent, all adults resident in Wales will automatically be placed upon the register; if anyone wishes to withdraw their consent they must actively remove themselves from the list. Many countries already operate this “opt-out” system; including, in Europe, such countries as France, Spain, Austria, Belgium, Norway and Sweden. In the news coverage, Glyn Davies MP state his opposition to the proposal, highlighting concerns about both the efficacy of the new system, and whether adequate consideration will be given to ethical aspects of the change.

Discussion of ethical issues: One ethical argument against presumed consent suggests that it violates the patient’s right to make an informed decision, and so does not uphold respect for their autonomy (Gillon, 1994). The specific purpose of informed consent is to protect a patient’s right to autonomy, as made clear by both the Universal Declaration on Bioethics and Human Rights (UNESCO, 2005) and the Declaration of Helsinki (World Medical Association, 2008). Enforcing presumed consent would remove the need for informed consent, and as such would be “a violation of an individual’s autonomy” (Kurosu, 2008).  Presumed consent, it is argued, forces patients either to become donors, or to state their wish to not become donors; in both instances the patient’s autonomy is violated, as  “compelling patients is unethical” (Kurosu, 2008). This deontological argument suggests a move to presume consent in Wales would be intrinsically unethical. Similarly, Kennedy et al. (1998) consider that a government body “assuming possession of our body parts” would be “a step too far”.

Headline Bioethics: Enviropig – significant advance or environmental ‘band-aid’?

[A printable version of this Headline Bioethics Commentary is available via this link]

Author: Rebecca Hyde

Clip: ‘Enviropigs’: genetically modified for food consumption

Date of Story: 4 January 2011

Summary of story: For the past decade, researchers at the University of Guelph, Canada, has been developing a line of Yorkshire pigs now known as Enviropig. In January 2011, a BBC reporter had the opportunity to see the pigs in a research facility while applications to approve the Enviropig for human consumption were being deliberated by the US Food and Drug Administration. The Enviropig has been genetically modified to contain genes from Escherichia coli and mice and bred over several generations to become more environmentally friendly by reducing the toxicity of their waste.

Discussion of ethical issues: Development of the Enviropig raises a number of ethical questions. Some of these relate to issues of animal rights, some relate to genetic modification of organism in general and foods in particular. Given the reasons behind the investment in the Enviropig research, there are also specific issues relating to environmental ethics, and this represents a good place to begin evaluation.

Intensive pig farming produces large amounts of manure which contains high levels of phosphate. Whilst some phosphate is vital to life, and is necessary for good plant growth, high concentrations can lead to disruption and poisoning of ecosystems. Runoff from pig farms can lead to eutrophication of nearby water ecosystems, which can potentially lead to the water becoming anoxic and unable to support life (University of Guelph, 2011). Enviropig has been genetically modified to produce phytase in its saliva. This enzyme is important for the breakdown of phytic acid, an indigestible form of phosphorus commonly found in cereal-based foodstuffs. Bacteria in the guts of cattle and other ruminants, but not pigs, normally provide this enzyme allowing this dietary phosphate to be released and used by the mammal.

Headline Bioethics: Too NICE to Push? Ethical issues surrounding a woman’s decision for elective caesarean section

[A printable version of this Headline Bioethics Commentary is available via this link]

Author: Matthew Taylor

Clip: Women can choose caesarean birth

Date of story: 23^rd November 2011

Summary of story: In November 2011, The National Institute of Health and Clinical Excellence (NICE) updated its clinical guidance to health care professionals regarding caesarean sections. This update helps ensure “every mum-to-be in England and Wales can request [a caesarean birth].” The story examines the case of Leigh East, who had concerns over a vaginal birth due to a pre-existing back injury. She was initially refused a caesarean section (CS), but was allowed the treatment after her own research persuaded her midwife to allow it. East said, “There was a great deal of pressure initially to not plan a caesarean”.

The report continues by covering how women who have had a traumatic experience with natural childbirth in the past should be treated. This includes offering counselling and, ultimately, the option for a caesarean birth if the woman is not reassured. Jenny Clery, Head of Midwifery at Whittington Hospital, said “you shouldn’t force anything on anybody, i.e. go into labour and we’ll see what happens.” The report finishes by stating the new guidelines are there to help women make an inform decision regarding mode of birth (BBC, 2011a).

Discussion of ethical issues: There are many ethical issues surrounding a woman’s choice regarding the mechanism of delivery for her unborn child. Doctors are faced with decisions requiring them to take each case individually, taking a consequentialist approach to each mode of birth, whilst also considering patient autonomy. The Changing Childbirth report (Expert Maternity Group & Cumberlege J., 1993) makes it an explicit right for a woman to be involved in decisions regarding all aspects of her pregnancy and childbirth.

Headline Bioethics: Cut out by the NHS

[A printable version of this Headline Bioethics Commentary is available via this link]

Author: Arnold Gangaidzo

Clip: NHS obesity surgery court bid lost

Date of story: 27^th July 2011

Summary of story: In July 2011 Tom Condliff, a 22-stone man lost his Court of Appeal case for a life-saving gastric bypass operation which had a detrimental impact on his family life and mental well-being (BBC, 2011a). The North Staffordshire primary care trust (PCT) refused to fund the procedure arguing that he failed to fulfil their IFR (individual funding response) policy and his body mass index (BMI) of 43 was below their threshold. He claimed the main reason he gained weight stemmed from drugs that he took for long term diabetes and the procedure was the best solution in order to prolong his life. In August 2011, subsequent to the events in this story, the PCT reviewed his case again and decided to fund his procedure as they now saw his case as an exceptional circumstance (BBC, 2011b). After having the operation, Condliff was reported to have lost six stone (Doward, 2012).

Discussion of ethical issues: The ‘four principles’ of autonomy, beneficence, non-maleficence and justice are widely recognised as the cornerstones of biomedical ethics. In this case, the principle of justice is brought into question. Chadwick (2008) says ‘justice in allocation’ is a bioethical issue since resources can be unfairly distributed and people can be discriminated against. Article 2 of The European Convention on Human Rights (ECHR, 1950) state “everyone’s right to life shall be protected by law…” but also notes that this must not be interpreted in a way as to put an impossible burden upon the authorities (Foster, 2007). Tom Condliff, a man seeking a gastric bypass, had to battle against his PCT to have them fund the operation. He argued that it was a breach of his rights under Article 8 of the ECHR (right to a family life) for the PCT to restrict their decision to clinical factors, and Article 6 (right to a fair trial) for not giving him sufficient details regarding their reasoning (Alexander Thomas Condliff v North Staffordshire Primary Care Trust, 2011). The Court found against Mr Condliff (though, as noted above, the PCT eventually relented).

Forensic use of bioinformation

Established in 1991, the Nuffield Council on Bioethics has earned a reputation for production of authoritative reports of ethical issues raised by a variety of current and emerging technologies in biomedicine and bioscience.

The quality and depth of analysis of the Nuffield reports means that they are rather too ‘chunky’ for most GCSE and A level students to negotiate. Over the last couple of years the Council’s Reaching Out to Young People committee (of which I am a member) has begun to produce educational resources to offer some of the key curriculum-relevant content of the larger reports in a more teenager-friendly format.

The forensic use of bioinformation resources are derived from the Council’s 2007 report of the same name. The resources include curriculum links, lesson plans, teaching notes, activity sheets, background information and quizzes. We hope you find them useful.

Live now: Bioethics in NewsFilm Online

Construction of Bioethics in NewsFilm Online was principally the work of final year undergraduate Sarah Curtis

There are growing collections of online videos suitable for teaching about bioethics. Amongst these, one of the less-known resources is NewsFilm Online (NFO), a collection of several thousand news stories, of which a very respectable number include bioethics-related material. To raise awareness of this footage, we have developed an additional website Bioethics in NewsFilm Online, where many of the clips are rated and reviewed.

Unfortunately access to some service on the main NFO website, including the ability to download news clips, is constrained to member institutions (mostly UK Universities) – if you think you could make valuable educational use of these materials but are unable to access NFO, we suggest you contact EDINA who manage that site.

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.

BBC Radio 4 Today programme – Ethical issues in prenatal diagnosis and screening

Listen again via the BBC Radio 4's Today programme archive

This brief post concerns a short section of BBC Radio 4’s Today programme, broadcast on January 7th 2009. The clip itself is approximately 4.5 minutes long and features interviews with Professor Simon Baron-Cohen, of the Autism Research Centre, and Joy Delhanty, professor of human genetics at University College London, who prospectively discuss the ethical issues involved in prenatal testing for autism. It was broadcast alongside the corresponding edition of the BBC News’ weekly column Scrubbing Up, in which leading clinicians and experts give their perspectives on various issues in health and bioethics.

DNA Database – Against Human Rights

European Court of Human Rights - Grand Chamber Judgement 4th December 2008 (Press release)

On Thursday 4th December 2008 the ‘European Court of Human Rights’ (ECHR) delivered a Grand Chamber judgement in the case of S. and Marper vs. the United Kingdom. They found that when an individual is arrested and has their DNA sample taken but is not subsequently convicted of the crime or is tried and acquitted, the retention of the DNA sample and DNA profile is a violation of Article 8 (Right to respect for private and family life) of the European Convention on Human Rights.

Please see Bioethicsbytes ‘Give us your DNA’ – Panorama and the BioethicsBytes Extended Commentary ‘Give us your DNA’ – Panorama.

BioethicsBytes Extended Commentary - 'Give us your DNA' - Panorama

To ‘Opt in’ or ‘Opt out’? – Organ Donation in the UK

NHS 'Transplants save lives' website

Organ donation is one of the miracles of modern medicine; the ability to transplant tissue from one person to another without rejection has brought dramatic improvements in the day to day lives of thousands of people, in many cases it is literally life-saving.

At present, however, the sad reality remains that demand outstrips supply. According to the Transplant Activity in the UK report for the financial year 2007/2008: 3235 transplant operations took place, but 7655 people were waiting for a transplant (up more than 6% from previous year), and 506 patients died while waiting for an organ transplant, (it is thought that this number could actually be as high as 1000 per year).

The debate that surrounds organ donation is fuelled by society’s moral obligation not to allow these people to die needlessly. When a person dies and they are not on the Organ Donation Register (ODR) and/or their family do not grant permission for their organs to be donated, then none can be used to help those suffering on the waiting lists.

The UK Government is desperate to improve the number of organs available for transplantation. In 2006 this led to the establishment of the Organ Transplant Taskforce, chaired by Elizabeth Buggins, in order to ‘identify barriers to organ donation and recommend actions needed to increase organ donation’.  Their most recent report The potential impact of an opt out system for organ donation in the UK, published 17th November 2008, has received widespread media coverage. With the aim to increase the number of people on the organ donation register, they examined potential benefits and the viability of a move from the current ‘opt in’ organ donation system, to a ‘opt out’ system where by every citizen in the UK is automatically registered to donate their organs when they die unless they actively decide not to.  

This post highlights relevant and useful online clips whilst briefly discussing the central ethical arguments presented by the report. It also complements this with suggested questions to use while discussing the topic.