Ethics of Organ Donation

April 25, 2013

Activities to teach about the ethics of donation of bodies for medicine and research are the latest resources developed by the Education Advisory Group

It’s about 18 months since the release of the Nuffield Council on Bioethics reports on the donation of human bodies for medicine and research. In the intervening period the Council’s Secretariat and Education Advisory Group (of which I am a member) have been refining a series of resources for teaching about the ethics of human tissue usage.

On this occasion the resources have been targeted primarily for students at KS4 (GCSE).  The materials have, however, been provided in both PDF and Word formats precisely to allow for adaptation should anyone wish to use them in a slightly different context. Issues covered include: terminology, altruistic donation, prioritisation of different uses of human tissue, and an intervention ladder to determine how best to increase the shortfall in available organs in an ethically-appropriate way.

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.

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

November 20, 2008
NHS 'Transplants save lives' website

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.  

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Drug Trials – The Dark Side

August 6, 2008
BBC Reporter Paul Kenyon - speaking to patients outside an Indian hospital

BBC Reporter Paul Kenyon – speaking to patients outside an Indian hospital

A documentary in BBC2’s This World strand, Drug Trials: The Dark Side investigated the murky world of clinical trials carried our in the developing world. Reporter Paul Kenyon travels to India in an attempt to uncover the actions of some of the world’s biggest drug companies. Through a series of interviews with both doctors and patients, it reveals some discrepancies with regards to clinical trial protocol. This raises five main ethical issues:

  • Patient recruitment onto drug trials
  • Informed consent
  • The trust between a doctor and their patient
  • The methodology implemented during a drug trial
  • The cost and accessibility of drugs in the developing world

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WIT: A window on tensions in clinical trials

June 12, 2008

(Warning: contains plot spoilers!) Adapted from Margaret Edson’s 1999 Pulitzer Prize winning play, Wit tells the tragic story of Professor Vivian Bearing (Emma Thompson). Vivian, a ruthless scholar of 17th Century English poetry, is diagnosed with advanced stage 4 metastatic ovarian cancer. Dr Harvey Kelekian (Christopher Lloyd), Vivian’s consultant physician and leading figure in this area of medical research, explains that the most effective treatment option she has is an aggressive experimental chemotherapy at the full dose.

Professor Vivian Bearing

Professor Vivian Bearing (Emma Thompson)  

She cautiously consents to the therapy and embarks on a degrading regime of eight cycles, which no other patient has completed before. With a fearless determination, Vivian does everything the doctors ask of her, and as such illustrates the central ethical issue observed in this film; the conflict of interest witnessed between clinical therapy and clinical research. Throughout, this is entangled with clinical incompetence, issues of informed consent, end of life decisions and Vivian’s frustration with the hospitals insensitive mechanistic approach to their patients, having been asked repeatedly “How are you feeling today?” (00:04:10 – 00:05:25) Read the rest of this entry »