TOPIC GUIDE: Genetic Screening
"Genetic screening of embryos should be celebrated, not feared"
PUBLISHED: 13 May 2010
AUTHOR: Craig Fairnington
INTRODUCTION
In 2009, a girl was born free of a gene that had caused breast cancer in three generations of her father’s family, reigniting an ongoing debate over the ethics of genetic screening of embryos [Ref: BBC News]. The number of genes and diseases that can be screened for is quickly increasing, as scientists discover new markers and tests – in 2006, the number of possible defects that could be detected was around 200 [Ref: Independent], but a recently developed technique (Karyomapping) now offers the possibility of screening for 15,000 different genetic disorders [Ref: The Times]. Supporters of genetic screening argue that the ability to use science to prevent a child being born with a debilitating illness is a great advance, which should be taken advantage of to prevent the suffering of a child born with a gene, chromosome or mitochondrial abnormality [Ref: MedicineNet]. Opponents argue that the screening opens up possibilities for the creation of ‘designer babies’ who are treated as consumer goods, purchased or discarded on the basis of their apparent quality; and that the focus on eradicating genetic anomalies devalues the lives of those who live with disabilities. The issues at stake include the ability to prevent unnecessary suffering from diseases with known causes, and concerns about the prospect of a society where even minor deviations from biological ‘normality’ are viewed as unacceptable.
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Genetic Screening DEBATE IN CONTEXT
This section provides a summary of the key issues in the debate, set in the context of recent discussions and the competing positions that have been adopted.
Why genetic screening?
Every year, thousands of babies are born with diseases or conditions caused by specific genes in their body. These can result in a difficult life for the child and his or her parents, and many diseases can cause pain or early death. There now exist tests which can detect genetically inherited diseases, and these can be used to prevent the birth of a child suffering from one of these genetic disorders. If the mother is undergoing IVF, these tests can be carried out prior to implantation in a process known as preimplantation genetic diagnosis (PGD), with embryos affected by abnormalities not being selected for implantation [Ref: Wikipedia]. As well as avoiding babies being born with genetic disorders, these tests can improve the likelihood of the IVF treatment being successful [Ref: The Times]. PGD can also be used to screen for other genetic markers, such as a child’s sex or hair colour. However, in the UK, use of the technology is tightly regulated by the Human Fertilisation and Embryology Authority (HFEA) [Ref: HFEA] and can only be used in relation to a prescribed list of inherited diseases and conditions [Ref: HFEA]. Sex selection is permitted in the UK, but only if this is for medical reasons, to prevent the birth of a baby with a sex-lined disorder [Ref: HFEA]. Sex selection for non-medical reasons is currently forbidden in the UK, but is permitted in the USA and elsewhere [Ref: BioNews].
Preventing disease
Advances in both prenatal testing (such as non-invasive prenatal diagnosis) [Ref: BioNews] and the genetic screening of embryos, offer the prospect of a reduction in the incidence of a number of inherited diseases and disabilities [Ref: Seattle Times]. This, some argue, can only be a good thing. Gene, chromosome or mitochondrial abnormalities can cause disease and early death in many generations of families, and many of these families welcome the ability to protect their child from suffering from the same illnesses that they or their relatives have suffered in the past [Ref: Guardian]. Couples can also choose to have genetic tests prior to attempting to have a child, which may mean they decide to undergo IVF, if they discover they are carriers of genetic mutations that could cause life-threatening disorders, in order to test and select an embryo to which they have not transmitted a disease or the risk of a disease [Ref: The Times]. However, such tests have sparked controversy as to whether they offer the hope of drastically reducing the incidence of inherited disease or play on people’s fears, generating needless anxiety [Ref: The Times]. IVF is not a straightforward procedure, being expensive, unpleasant and often unsuccessful; and screening out inherited disease will not guarantee that a baby will be healthy in every other respect. There are fears that pushing people towards choosing scientific over natural conception can make the process increasingly stressful, based on an over-estimation of what science can achieve.
The new eugenics?
There are critics who argue that the genetic testing of embryos amounts to eugenics [Ref: Opposing Views], with some arguing that embryos are increasingly being rejected for ‘minor’ disorders [Ref: The Times] and others raising concerns about the ‘creep’ from the testing of fatal diseases to those that do not kill the sufferer [Ref: The Times]. They say that the pursuit of genetically perfect babies can devalue the lives of disabled people, who enjoy and make the most of their lives [Ref: IVF.net]. Others are already troubled by the way society accepts the abortion of foetuses affected by disorders [Ref: The Times], and are concerned about women feeling under pressure to have an abortion if anomalies are detected. Indeed, the lines which people draw in relation to disability can be different for different people – some deaf people have in the past demanded the right to be able to select for a child who is also deaf [Ref: Telegraph]. Critics point to the contribution to society that many disabled people have made, and suggest that the screening of embryos would have deprived us of many brilliant and important people [Ref: Guardian]. On the other hand, supporters of genetic testing point out that unlike eugenics movements in the past, nobody is forced to act upon the information they obtain from the tests [Ref: BBC News]. Many supporters of screening point to the importance of being able to make an informed decision about whether or not to have a baby with a particular disease or condition [Ref: The Times].
Designer babies
Embryos can be also screened for traits for non-medical reasons and advances in PGD have led to renewed concerns about the prospect of ‘designer babies’. In February 2009, a Californian fertility clinic courted controversy when it offered parents the opportunity to select for eye, hair and skin colour [Ref: Telegraph]. Some have argued that the parents being able to choose these traits in their child turns having a baby into an extension of the ‘consumer society’, and that people may be led by social pressures and prejudices into making choices about the sex, appearance or abilities of their children based on narrow ideas of advantage or perfection [Ref: Washington Post]. Arguing for the need to accept children ‘as they come’, some warn against the hubris of viewing ourselves as being able to master nature, failing to recognise the need to appreciate ‘life as a gift’ and the importance of forces outside of our control [Ref: Christian Science Monitor]. Others positively emphasise parental choice [Ref: spiked], arguing that sex selection merely allows parents to have the family they desire, just as developments in contraception allowed parents to control the number and spacing of their children [Ref: Guardian]. Some supporters of genetic screening argue that the name ‘designer baby’ insults parents [Ref: Wired], by implying that they do not have their child’s best interests at heart – when parents using PGD usually want to take advantage of whatever technologies give their child the best life possible [Ref: hPlus Magazine].
ESSENTIAL READING
It is crucial for debaters to have read the articles in this section, which provide essential information and arguments for and against the debate motion. Students will be expected to have additional evidence and examples derived from independent research, but they can expect to be criticised if they lack a basic familiarity with the issues raised in the essential reading.
Commissioning and providing pre-implantation genetic diagnosis services
Megan Allyse BioNews 5 May 2009
Science - and ethics - of this screening are complex
Sarah Boseley Guardian 10 January 2009
The Big Question: Should we be worried by the latest step towards designer babies?
Jeremy Laurance Independent 20 June 2006
Head to head: Genetic Screening
Baroness Ruth Deech v Dr David King BBC 10 May 2006
FOR
Choosing not to use genetic testing is an option. Ignorance isn’t
Daniel McArthur & Daniel Vohaus The Times 23 March 2010
Eugenics or reprogenetics? Call it what you will, but let’s do it
Alexandre Erler Practical Ethics News 24 February 2010
Case Study: Forewarned is forearmed - I certainly would have taken the test
Hannah Devlin The Times 8 February 2010
Designer Babies: A right to choose?
James Hughes Wired.com 9 March 2009
Ellie Lee Spiked 17 April 2003
AGAINST
Dan Kennedy Guardian 2 February 2010
Pushing eugenics as smart science
Wesley Smith Opposing Views 8 March 2009
Autism Test would deprive the world of geniuses
James Randerson Guardian 7 January 2009
Michael Sandel makes ‘The Case Against Perfection’
Gregory M. Lamb Christian Science Monitor 5 June 2007
There’s more to life than being Joe Normal
Bryan Appleyard Independent 6 June 1996
IN DEPTH
‘When Is a Life Form Worthy of Life?’
Charles Hawley Spiegel Online 7 July 2010
A rush towards embryo screening
Mark Henderson The Times 4 March 2010
Gene Testing Spurs Decline of Some Dire Diseases
Centre for Genetics and Society 19 February 2010
Embro Genetic Screening Controversial - and Successful
Dan Vergano USA Today 10 January 2010
William Saletan Slate 17 February 2009
KEY TERMS
Definitions of key concepts that are crucial for understanding the topic. Students should be familiar with these terms and the different ways in which they are used and interpreted and should be prepared to explain their significance.
BACKGROUNDERS
Useful websites and materials that provide a good starting point for research.
How a Community Stamped out Tay-Sachs Disease with Genetic Screening
The Times 8 February 2010
Lachlan de Crespigny Practical Ethics News 25 October 2009
Disease free babies? New embryo screening
Woman's Hour BBC Radio 4 7 July 2009
The Lives of Babies with Down Syndrome are not Worthless
John Hogan Guardian 29 May 2009
Newborn genetic screening - The New Eugenics?
Citizens' Council on Health Care April 2009
Breast cancer gene-free baby born
BBC News 9 January 2009
Gautum Naik Wall Street Journal 25 October 2008
Fresh Hopes and Concerns as Fetal DNA Tests Advance
Washington Post 26 October 2006
Our Gentle Decent Towards Eugenics
William Saletan Slate 19 May 2006
ORGANISATIONS
Links to organisations, campaign groups and official bodies who are referenced within the Topic Guide or which will be of use in providing additional research information.
IN THE NEWS
Relevant recent news stories from a variety of sources, which ensure students have an up to date awareness of the state of the debate.
Blood test for Down’s syndrome
Daily Telegraph 30 June 2010
Making babies naturally may be a dying art
The Sunday Times 16 May 2010
New technique could make in-vitro more reliable
CBS2 Chicago 16 April 2010
Call for choice on genetic testing to allow babies born without risk of diseases
Daily Mail 14 April 2010
Clinics destroying embryos with minor genetic conditions
Daily Telegraph 24 January 2010
First baby born from screened egg
Daily Telegraph 2 December 2009
Screening test ‘doubles the chance of pregnancy for woman on IVF’
The Times 19 October 2009
Hereditary diseases could be eradicated before birth by ‘genetically modifying’ eggs
Daily Telegraph 26 August 2009
The IVF embryo test that can detect 15,000 genetic diseases
Daily Mail 1 July 2009
Parents to be offered test to detect inherited diseases in embryos
The Times 1 July 2009
Demand for ‘designer babies’ to grow dramatically
The Times 9 January 2009
Trials for embryo quality test give infertile couples new hope
The Times 29 June 2008
Deaf demand right to designer deaf children
The Times 23 December 2007
Outcry as clinic offers ‘designer baby’ embryo screening for 200 diseases
Evening Standard 13 November 2006
AUDIO/VISUAL
Disease free babies? New embryo screening
Woman's Hour BBC Radio 4 7 July 2009
Breast cancer gene-free baby born
BBC News 9 January 2009
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