Sometimes genetic testing can provide a diagnosis at a cheaper cost for the NHS than more regular testing. An example of this is the DNA test for muscular dystrophy which is cheaper than a muscle biopsy (Postnote Paper, Parliamentary Office of Science and Technology July 2004)
Identifying the possibility of developing certain types of cancer can enable a person to choose whether to take steps to avoid this risk and possible resulting death eg a mastectomy for those at a high risk of breast cancer due to an inherited disorder.
Around five per cent of the 41,000 women diagnosed each year develop breast cancer because of inherited flaws in genes - known as BRCA1 and BRCA2 genes - associated with a strong family history of the disease. A further 10 to 15 per cent of all breast cancer cases occur in women who have a moderate family history of the disease. A woman who carries a fault in one of her BRCA genes has a lifetime risk of developing breast cancer of up to 85 per cent, and up to 40 per cent for ovarian cancer. (Test delays force women to have breasts removed by EMILY COOK, Daily Mail)
A recent news item reported on the possibility of identifying at what age someone might develop Parkinson’s disease by studying their genes. 183 families affected by Parkinson’s were involved in the study. A genetic mutation was found to be linked to the age it affects someone.
Many of the examples identified mean that the person affected has choices to make which are enabled through genetic screening. This gives the person hope where otherwise perhaps a future would not be there or would involve more pain and suffering.
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“With genetic testing, we can make a huge difference. We have the opportunity to eradicate cystic fibrosis, as well as other debilitating diseases.” Professor Martin Richards, Director of the Centre for Family Research taken from an annual report by the University of Cambridge April 2005
Several hundred genetic tests are currently in use with more being developed all the time. One of the most recent and interesting developments is the test for people more at risk of developing bowel cancer. This research has been funded by Cancer Research UK, the Medical Research Council and the Scottish Executive.
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It is wrong because
Genetic testing is not faultless. Cases have happened where false positives and false negatives have been given and a decision reached because of these. Women with a family history of breast cancer have been screened and as a result had their breasts removed only to find that the test was wrong.
Often genetic screening takes a long time to do. For example it was reported in the Daily Mail that some women waited for up to two years for test results. Some felt unable to cope under the pressure and took the decision to have their breasts removed.
Foster carer Tracy Meredith also took the drastic step to have both breasts removed, even though genetic tests proved 12 months later that she was unlikely to develop cancer and the surgery was unnecessary. (Test delays force women to have breasts removed by Emily Cook, Daily Mail)
Genetic testing to find out the possibility of someone developing an inherited disorder can cause more problems than they solve. This is another possibility of a situation involving a false positive. The study of Parkinson’s is believed to be one such possible false positive situation by the Parkinson’s Disease Society.
Kieran Breen, the director of research, at the Parkinson's Disease Society said: "There isn't currently a case for genetic testing to take place, even where a relative has the condition. "Screening to identify the gene may only cause unnecessary alarm or worry in people who may never go on to develop Parkinson's. "Research is ongoing on this subject in order to gain a greater understanding of the factors associated with Parkinson's." (BBC News Report - 18 June 2006)
Genetic testing also brings with it ethical, legal and social issues. Testing for genes involving mental retardation or physical problems has not been approved of in the past. A common test is the one for Down’s Syndrome for which a positive result involves a life changing decision for the parent(s) to make either way. However, there are an ever increasing number of other tests becoming available and these are causing concern in many areas.
‘Last year the High Court granted an appeal for a review of the decision by West Mercia police not to prosecute doctors who aborted a foetus beyond 24 weeks' gestation because the mother, taking advice from doctors, did not want a baby with a cleft palate.
Joanna Jepson, a curate at St Michaels Church in Chester who was born with a cleft palate, argued the abortion was not justified.’ – Probe into ethics of gene testing, BBC News Report 16 July 2004
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Recent reports have involved testing to include a selection of the right chromosomes to enable a selective baby sex choice. An embryo is selected to provide the correct genetic match to be able to donate tissue to a sick sister or brother.
‘Recently, a couple from Leeds hit the headlines when they were given the go-ahead by the Court of Appeal to have a “perfect match” test-tube baby selected to help cure their other child, Zain, of a rare blood disorder’.- ‘Probe into ethics of gene testing, BBC News Report 16 July 2004’.
Some people believe this is unethical and could even lead to human cloning
Children created as so-called “saviour siblings” to aid a sick brother or sister must be monitored to ensure their wellbeing, experts suggest. The recommendation is made in a report on reproductive technologies by the Human Genetics Commission – Concern over ‘spare part’ babies – BBC News Report Tuesday 31 January 2006.
General concerns about genetic testing include concerns about the complex procedures involved and the interpretation of results even by well trained specialists. Also the use of genetic testing for such things as insurance, where insurance companies use these results to inflate premiums for certain peoples results. The chart below indicates public opinion concerning this issue.
Economic and Social Research Committee
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Conclusion
Although many complicated issues arise on both sides of this question, overall I believe that genetic testing is right.
The choice to avoid pain and suffering by taking evasive action must be a positive point. And even better to have the chance to eradicate such debilitating diseases as cystic fibrosis as stated by Professor Martin Richards, Director of the Centre for Family Research. There are many tests taking place, with more becoming available every day. The fact that often these tests can be carried out at a cheaper cost for the NHS than normal tests, must be another positive point. The NHS always seems to have money issues, so anything that can cut costs is a help. The fact that often this type of testing is less painful than other tests is also good.
The views of many of the experts I found in my report search mostly seemed to agree that genetic testing was the way forward. However, this must be done appropriately and with restrictions in terms of genetic cloning for instance. There is an HGC (Human Genetics Commission) which is responsible for overseeing things and this is very important. Most tests are only done in the presence of a doctor. However, some tests which claim to predict the genetic risk of conditions are available from alternative healthcare providers in the UK. Other types of tests are available over the internet. These need to be approached with care and warnings given. ‘Probe into ethics of gene testing’, BBC News Report 16 July 2004, which reported on the abortion of a child due to genetic testing having identified a child with a cleft palate is also an area to be approached with care. This type of defect does not, in my opinion as well as Joanna Jepson’s (a curate at St Michaels Church in Chester) warrant such drastic action.
Even such institutions as the Catholic Church keep an eye on what is going on in this field. They have their own Vatican scientists who advise the church on these issues.
For me, the positives out way the negatives. I believe that at the end of the day the person affected should have the choice. They should be the one to make the decision, but with one very important condition being that they are given full and complete information together with counselling. The progress of the research into this form of testing is vast and can surely only be a good thing if its stops people suffering from debilitating diseases and the pain involved in these.
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Bibliography
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