DNA – The Promise & The Price

January 26, 2009
"A child born in 1953, the structure of DNA has just been discovered. 1989 and this babies genetic fingerprint can be identified. The first single gene for Huntington's disease has been discovered. 2003 this child's entire genetic code can now be read and faulty genes in his DNA can be adjusted. Another birth, but this time no ordinary miracle. The babies sex and eye colour were decided before she was conceived; also her hair, the shape of her nose and her intelligence. The date of her birth? Perhaps only a few years from now. She's born from a revolution in genetics. A revolution where each new step brings new questions of ethics and responsibility. And as the promises of the science gets greater, so do the questions for all of us get bigger."

Narrator Bill Paterson: "A child born in 1953, the structure of DNA has just been discovered. 1989 and this baby's genetic fingerprint can be identified. The first single gene for Huntington's disease has been discovered. 2003 this child's entire genetic code can now be read and faulty genes in his DNA can be adjusted. Another birth, but this time no ordinary miracle. The baby's sex and eye colour were decided before she was conceived; also her hair, the shape of her nose and her intelligence. The date of her birth? Perhaps only a few years from now. She's born from a revolution in genetics. A revolution where each new step brings new questions of ethics and responsibility. And as the promises of the science gets greater, so do the questions for all of us get bigger."

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DNA – The Promise & The Price provides an excellent resource for discussing the ethical implications of advancing genetic research, focusing on; gene therapy, stem cells and cloning. The documentary examines the frontiers of genetic science, revealing how researchers attempt to fulfil DNA’s potential to help cure and prevent disease. It also questions how some aspects of these novel technologies may have significant consequences for individuals and society. Bill Paterson: “Much is promised by genetic science, the manipulation of our genes. But can it deliver? And if it does are we ready to take responsibility for meddling with the very fabric of life itself: our DNA”.

"When it comes to medical research, any medical technology

Professor Steve Jones: "When it comes to medical research, any medical technology that works, it is very quickly accepted by the public. Ethicists may not like it, scientists may not like it, but the public, if they believe it works they will accept it, and the legislation will always follow. Ethics has always followed science, it's never led it and I don't see any reason why genetics is going to be any different. Ethicists would love to tell geneticists what to do, but I'm afraid the geneticists are not going to listen."

The topics found in DNA – The Promise & The Price include: genetics; genetic diseases; gene therapy; transplantation; stem cells; and cloning can all be found in the UK National Curriculum. Please note all timings mentioned  include advertisement breaks – (00:04:51 – 00:08:00, 00:25:31 – 00:28:40 and 00:46:50 – 00:50:00) 

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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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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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Epigenetics – The ghost in your genes

June 30, 2008

 
Epigenetics – Turning genes on and off  

The BBC Horizon documentary The ghost in your genes, successfully explains a particularly complex field of science. Genetic inheritance has historically been thought of as involving the transmission of DNA from one generation to the next affected by occasional mutations in the DNA itself (00:04:37 – 00:05:50). “Up to now, inheritance is just the genes, the DNA sequence. I suspect that we’re going to be able to demonstrate that inheritance is more than that”, explains Professor Marcus Pembrey from the Institute of Child Health, UCL. A few scientists had hypothesised that the conventional genetic model and mode of inheritance was too simplistic to explain the complexity of human beings. The revelation that the human genome likely contains only about 30,000 genes (00:08:54 – 00:11:33), coupled with increasing experimental evidence, now leads scientists to believe that other factors allow genes to be switched on and off in response to environmental stimuli. The consequences of which may affect subsequent generations.

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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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‘An Adventure into Ourselves’ – DNA: The Human Race, Channel 4, 2003

June 17, 2008
 

Sequencing the Human Genome (DNA: The Human Race, Channel 4, 22nd March 2003)

In this, the third of four episodes in Channel 4’s award winning DNA series (first broadcast in 2003), narrator Bernard Hill explores the origins and eventual completion of the Human Genome Project (HGP). Described as the attempt to “catalogue all the genes that carry the instructions to make a human being” (00:00:08), the programme features the majority of the key actors in this scientific and political drama including James Watson, Sir John Sulston, Fred Sanger, Craig Venter, and former US President Bill Clinton. Insofar as the series successfully integrates discussion of the scale and scope of the project in scientific, political and financial terms, it forms an excellent basis for teaching both the science and bioethics of the HGP and large scale sociotechnical projects.

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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 »