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science
INSIDE THE ETHICS COMMITTEE
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Inside the Ethics Committee
Wednesdays 11, 18 May & 1 June 2005 8.00-8.45pm
Saturdays 14, 21 & 28 May 10.15-11.00pm
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Send us your comments about this programme.
Wed 24 May (rpt. Sat 27 May)
Programme 1 - Your Comments

In the first programme of the series, the panel considers the harrowing story of Lisa and Gary, a young couple in their early thirties. Gary's father and grandfather both died at an early age from cancer. After his health started to deteriorate Gary was diagnosed with HNPCC, a hereditary form of colon cancer. Should Lisa be granted genetic testing for their two young children, to find out if they have the same condition? 
"My husband has HNPCC. Many members of his family have also had the gene, each one of them, without fail, has died of cancer regardless of the colon screening they went through.

"I have three young sons.

"I wanted to get them screened and I was lucky enough that my genetics clinic agreed. I did this because I need to know, I needed not only to plan for the future but to come to terms with what our family’s future was. I honestly felt that without this knowledge I couldn’t have coped and how would that have benefited the children?

"This is not an easy subject, living with the shadow of it over your lives is horrendous. I needed to know what was coming and I will endlessly thank my genetics clinic for giving me that knowledge."
Trudy

"Whilst I found the debate interesting and well informed the underlying assumption was that the termination of a life in which we could predict a level of suffering was self evidently a good thing. 

"No one gave voice to the disability activists' perspective best expressed by Dr Gregor Wolbring, a thalidomide survivor who argues that any decision to abort based on the characteristics of a foetus is discriminatory and immoral, arguing that the characteristics of a foetus should be irrelevant in deciding whether or not to continue with a pregnancy.

"He argues that if termination of pregnancy is allowed because of factors such as impairment then to be consistent you should allow termination because of gender, sexuality and other consumer preferences."
Terence

"I've been listening to the discussion on HNPCC. It's very relevant to me. The HNPCC gene has occurred frequently in my family. I have it. I was diagnosed with colon cancer 8 years ago at the age of 33. My brother was diagnosed with colon cancer at 35. My mother had that cancer at 50. Treatment worked with all of us. We are all currently healthy and leading full lives.

"In the programme not enough emphasis was put on the difference between manageable conditions like HNPCC and more serious diseases such as Huntingdon's. My brother faces Lisa's dilemma in relation to his children. He won't discuss it with them and hasn't had them tested. I think that's a form of denial and may upset them when they find out. In my opinion Lisa's son needs to find out as much as possible about HNPCC before being tested. I would suspect that he could learn a positive result can be lived with."
Roger

"Are we saying that a life worth living has a minimum length of time? Are we saying that the lives of great artists, scientists or philosophers who reached the climax of their production and died before the age of forty were a waste of time? Are we saying that, in future, when many more genetic conditions can be identified, the majority of pregnancies will just be terminated until the parents reach that one perfectly healthy individual that might die of a road accident by the age of 1 but has the genetic ability to reach 150 years of age? Where is the limit for all of this?"
Sebastian

"Having read some of the comments, there is a divergance between those who are personally affected by these awful dilemmas and those coming from a particular, often religious, stance who wish to impose their views on others who will have to live with the consequences.

"I have personal experience of a condition which usually manifests itself in early adulthood usually resulting in death. my own husband having died at the age of 31. I was not in the position at the time of being pregnant, but with my husband's family history I would have wanted to know, whether any embryo was affected."
Diane

"I am a student presently writing a thesis on medical ethics and felt that the opinions of many of the experts were either irrational by definition or suspect in their justification. For example, the expert who believed that a test should only be given if the mother would be interested in a termination. How can the mother predict her reaction to the results?"
Greg

"Excellent programme and very balanced discussion. I'm a clinical geneticist and usually when genetic issues are discussed I shout at the radio. This time I was nodding along with all the excellent points which were made. They even had the right facts about genetics and insurance which is often portrayed wrongly." 
Dian

"With reference to the moratorium on insurance companies being permitted to insist on results of genetic tests being disclosed to them I feel very strongly that this should remain in place far beyond 2011. In these cases it is not really the insurance companies which are bearing the risk it is the people who pay for the services. In other words all of us. If the overall risks increase then the prices go up. For myself I will happily and cheerfully carry my share of the load.

"I do not think the removal or extension of the moratorium should be an issue for the insurance industry at all. The decision should be made by all of us through our political representatives. This should never be considered a business issue. It is a moral issue."
Mark

"I have a congenital spinal problem and had my sons tested and as two were clear they could do gym and climb trees, etc. It was great to know either way, so they could make plans for their life."
Lucy

"We should not be killing our way out of medical problems but caring as best we may. Listening to this programme I do not feel we the increase the sum of human happiness by pre-natal testing. We cause far more suffering by eugenically testing our babies than ever we do by just accepting and loving."
Gill

"The programme failed to indicate how for a treatable condition it is very POSITIVE to know whether you or other family members have the gene, and therefore know that screening can make sure treatment takes place before it is likely to become life threatening."
Rosie

Programme 1 - Genetic Testing for Adult Diseases
Programme 2 - Pandemic Flu

More Information:

The Nuffield Council on Bioethics
Human Genetics Commission - Genetics Decisions
GIG - Genetics Interest Group
Gene Watch - Genes and Discrimination
British Society for Human Genetics
Genethics Club
Antenatal Results and Choices
Antenatal Screening Information
Contact a Family - for parents of disabled children
UK Clinical Ethics Network
BBC Health - HNPCC
Newcastle University - Tom Shakespeare
Bristol University - Ainsley Newson
Cancer Genetics Group - Anneke Lucassen
BBC Religion & Ethics
BBC Health
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