Blood and Guts – Bleeding Hearts

Michael Mosley: “The heart possesses a mystique, a romance that sets it a part from any other organs. This difference helped make heart surgery an extremely dangerous procedure. Not just for the patient but also for any surgeon prepared to operate on it.”

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.

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.  

My Shocking Story – Human Face Transplant

At a military hospital in China, Professor Guo Shuzhong is striving to advance the necessary medical techniques to complete a full face transplant for one of his patients. Celebrated as one of China’s best plastic surgeons, Professor Guo is anxious to improve the lives of people with severe facial disfigurements.

Professor Guo: "We Chinese pay a lot of attention to the face, if you have a problem with the face and go outside, a lot of people stare at you, look at you, you feel very uncomfortable... Some people are that disfigured that they do not look like human beings anymore. Some people in China call then ghosts. These patients are discriminated against in society; I deal with them every day and understand their suffering. They are in a great deal of pain. They do not expect to be beautiful after surgery, they just want a normal life again" (00:02:27 - 00:04:52).

Professor Guo believes that the only way to improve the life of his patients is to build on the well established techniques of plastic surgery and move towards partial and full face transplants. In November 2005 Isabelle Dinoire underwent the world’s first partial face transplant in France (00:12:34 – 00:13:32) (See Face transplant – Horizon). Professor Guo is encouraged by this and hopes that his research can build on the medical breakthrough.  

Superdoctors – Miracle cures

Robert Winston introducing the programme

Commenting in the second episode of the three part Superdoctors series that “one of the most exciting frontiers of our age is stem cells“, Robert Winston goes on to ask “how will these cutting edge technologies change the way that you, and I, and are children are treated?” (Start – 00:04:02). Stem cell therapy is at the beginning of its expected transition from the laboratory to the clinical application. The programme seeks to distinguish the hype from the genuine developments and to examine some of the hard decisions that need to be taken. Several of the key ethical issues associated with stem cell research have been considered in posts about other programmes (see for example Are hybrid embryos an ethical step too far? – The Big Questions and Bioethics Briefing – Stem cells). This episode, however, is particularly useful for consideration of two issues:

• Public understanding of science and the management of expectations
• Clinical trials and “therapeutic misconception”

Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer – Bazell (1998)

Bazell, R. (1998). "Her-2: The Making of Herceptin". New York: Random House.

In his interesting and insightful account of “the making” of Herceptin, Robert Bazell, shows how the creation of a new drug is not only a scientific process, but also a social endeavour involving patients, doctors, regulators, funders, politicians, activists and the media. This is particularly so when it comes to clinical trials for a new product, and Bazell’s description of this procedure for Herceptin (Trastuzumab) is detailed and would form an excellent resource for illustrating its complexities and/or discussing its complications.

While the book deals with much more than the clinical trials of Herceptin – including the sources of early interest in the Her-2/neu receptor in breast cancer and the collaborations that eventually brought the potential of this monoclonal antibody to the attention of Genentech’s management – this post focusses on the clinical trials that formed the basis for its licensing by the FDA (Food and Drug Administration) in the US and subsequent worldwide use as an adjuvant therapy in advanced (metastatic) breast cancer.

This post is accompanied by a BioethicsBytes Extended Commentary on the making of herceptin (available here), which discusses some additional bioethical issues raised in this post.

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.

My Life On A Post-it Note

BBC News article

Christine was diagnosed with early-onset Alzheimer’s disease. The BBC documentary series One Life gave a personal insight into the effect of the disease on both the sufferer and the family around them, as they endeavour to cope with this deliberating illness. Christine (mostly referred to as Chris in the documentary) is resolute in her determination to remain independent. This, however, becomes increasingly difficult as the disease becomes progressively worse.

Drug Trials – The Dark Side

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

Fighting Talk (Doctors) – a duty to disclose?

(Warning: contains plot spoilers!) This is an old episode of the BBC’s daytime drama Doctors, centred on the Mill Health Centre, a fictional midlands clinic. The relevance is probably limited to clinical ethics training for medical students, but it’s great for that purpose so worthy of a quick note here.

In Fighting Talk (TRILT ID: 0059FD65, first broadcast on BBC1, 15th June 2006), Dr Greg Robinson is faced with a dilemma when local bully Darren Waters has beaten up geeky pupil Kevin Dobson on his way to school. What Darren doesn’t realise is that Kevin is HIV positive. When Darren presents at the clinic with a bleeding hand and then Kevin later comes in with cuts to his face, Dr Robinson realises there is a risk that the virus has been transferred from victim to bully. Does he have a duty to disclose the details to Darren and his family?

In truth, the episode is entirely focussed on this story, punctuated with snippets of longer term issues for those who work at the Mill Health Centre. One short section, however, conveys all that needs to be told as a case study for tutorial group discussion. In the section starting at 16:23 Dr Robinson visits Kevin and his mother trying to persuade them to let him tell Darren. Kevin’s HIV status is mentioned openly, it had only been hinted at in early clips. The scene runs onto 19:17, but is best stopped at 17:50 when Kevin’s mum puts her hand on his shoulder – the rest of the clip is window dressing.

For completeness, the clips in which the story unfolds are: 02:00-02:58 (the fight), 03:40-05:03 (mum patches Kevin up), 07:52-10:00 (bully goes to GP), 10:26-12:40 (Kevin goes to GP), 12:40-13:37 (Dr Robinson discusses what to do with colleague), 14:10-15:55 (Doctor visits Dobson family), 16:23-19:17 (HIV status discussed), 20:11-20:50 (Doctors discuss ethical duty), 20:50-21:10 (Kevin visits clinic to give consent), 21:37-23:38 (Dr Robinson tries to get Kevin’s mum to agree), 24:22-26:12 (Kevin persuades his mum).