Donor conception: ethical issues

April 24, 2013
The Nuffield Council on Bioethics produces one or two authoritative reports each year

The Nuffield Council on Bioethics produces one or two authoritative reports each year

In April 2013 the Nuffield Council on Bioethics published a report on the ethics of donor conception. Their reflections focused specifically on ethical aspects of information sharing: if donor-conceived individuals should be told about their origins and, if so, when and how this knowledge should be passed on. Their conclusions, summarised here, are grouped into four categories:

  • policy affecting potential parents;
  • policy affecting parents and donor-conceived people during childhood and adulthood;
  • policy affecting donor-conceived adults who do not have access to information (there were significant changes in UK legislation relating to anonymity and record keeping in both 1991 and 2005); and
  • Policy affecting donors.

In an illuminating blog post, Dr Rhona Knight, Chair of the Working Party, unpacks some of the thinking that went into the Council’s ultimate recommendations. Concerned about the potentially adversarial tone of discussion “rights”, the report instead focuses on “interests”. A variety of stakeholders are identified, including the nurturing parents, the genetic parent and the child themselves. The latter might be interested in knowing the fact that they are donor-conceived and about their genetic heritage, particularly as it might relate to any potential health issues.

As regular users of BioethicsBytes will know, our major focus is on multimedia resources to help in teaching about bioethics. In this regard, here are a number of online videos that may be useful.

1. Ethical issues regarding donor conception

This short film picks up on a broader range of issues associated with donor conception (CoI disclaimer: this video is produced by some of my students)

2. Sperm donor has over 70 kids

This two-handed studio discussion focuses on the lack of regulation in the USA which has led to various individuals being the biological father to dozens of children. Their discussion includes contrasting with the situation in the UK where there is tighter regulation.

3. “You’re not my mother!”

This clip more closely aligns with the issues raised in the Nuffield report. Helane Rosenberg relates an incident when her daughter used the fact she is not her genetic mother as an angry response to having a request to watch TV snubbed.

If you have any other suggestions of videos for teaching about ethics and donor conception I’d be happy to consider them for addition to this list.

Epigenetics and ethics

April 12, 2013

It is a well established truth that not all of our genes are switched on in all of our cells all of the time. A fundamental role in the control of gene expression is played by transcription factors encoded within the DNA itself. In addition to this, however, there is now increasing recognition of the importance of an additional layer of genetic modification over and above the sequence of A,C,G&T letters in genome.

The epigenetics teaching resources have been developed by Lyndsey Wright as part of the public engagement with science component of her PhD (funded by the BBSRC)

The epigenetics teaching resources have been developed by Lyndsey Wright during the public engagement with science component of her PhD (funded by the BBSRC)

This “epigenetic” regulation can be influenced by environmental factors and hence questions about the ethical significance of epigenetics are emerging. Two different resources for looking at these bioethical dimension of epigenetics have recently been launched.

Firstly, PhD student Lyndsey Wright has taken the lead in the developed a series of resources on epigenetics and ethics which can be used with A-level students and undergraduates.

Four case studies are included on:

The resource, which is part of the wider Virtual Genetics Education Centre, includes teachers’ notes, student worksheets and PowerPoint presentations as well as links to further reading.

The second new resource is a video on the science and ethics of epigenetics.

The video includes consideration of Jesus and his (fictional) twin Joshua

The video includes consideration of Jesus and his (fictional) twin Joshua

This film was made by second year undergraduates at Leicester as an assessed piece of work. The video includes interviews with a number of scientists who are researching aspects of epigenetics, including the role of genetic modification in altering the expression of genes in cancerous cells.

Headline Bioethics: Change to organ donation law in Wales?

January 9, 2013

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

OptOutMediumAuthor: Christopher Jones

Clip: Will Wales change organ donation law?

Date of story: 8th 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”. Read the rest of this entry »

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

January 9, 2013

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

EnviropigMediumAuthor: 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. Read the rest of this entry »

Headline Bioethics: Cut out by the NHS

January 4, 2013

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

Author: Arnold GangaidzoNHSrationingmedium

Clip: NHS obesity surgery court bid lost

Date of story: 27th 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). Read the rest of this entry »

Headline Bioethics: GM chickens offer solution to bird flu problem?

January 4, 2013

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

Author: Rachel Bell

BBC News Clip: Chickens that cannot spread bird flu developed

Date of story: 13th January 2011

Summary of story:   Scientists from the Universities of Edinburgh and Cambridge have created genetically modified chickens that are unable to transmit the H5N1 “bird flu” virus between individuals. This effect was generated by inserting genetic information coding for a ‘decoy’ RNA hairpin molecule that acts as an inhibitor for the RNA polymerase enzyme required for replication of the flu virus (Lyall et al, 2011). It has been suggested that this approach may offer a means to reduce the extent to which bird populations act as a reservoir for flu and other diseases.

Discussion of ethical issues:  This story presents ethical tension on two levels; the possible benefits and complications for the chickens themselves, but also the implications for the human population. Laws relating to the use of Genetically Modified Organisms (GMOs) vary in different parts of the world. In the UK, the law covering the creation and use of GMOs is set out by the Health and Safety Executive. This requires any experimentation to undergo strict risk assessment, notification of the authorities regarding any GM activity, and total clarity and public availability of information gathered by the research (HSE, 2011). In this case, Sang and her team at the Roslin Institute, Edinburgh have complied with these regulations and the necessary details are included in the final paper (Lyall et al, 2011). Read the rest of this entry »

Bioethics videos: Class of 2011

June 13, 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.


Read the rest of this entry »