TOPIC GUIDE: Embryo Screening
"The genetic screening of embryos devalues human life"
PUBLISHED: 01 Sep 2012
AUTHOR: James Shaw
INTRODUCTION
June 2012 saw scientists controversially predicting the entire genetic code of a foetus, information which could be used to prevent the birth of a child suffering from a disorder [Ref: Telegraph]. One method, alongside screening foetuses, called preimplantation genetic diagnosis (PGD), involves the extraction of a cell during IVF treatment and analysing the DNA for the presence of disease-associated genetic alterations. Only embryos without mutation are then selected, and doctors now commonly prevent serious disorders like cystic fibrosis [Ref: Nature]. However, some see this procedure being increasingly trivialised by the possibility of identifying cancer disposition and late-onset diseases and so fear doctors may attempt to alter genes to create ‘perfect’ humans in the future. Many scientists are doubtful of this being a realistic prospect as human traits are significantly influenced by environmental factors and proponents, like Dartmouth College’s Professor Green, argue this may not be as ethically-troublesome as critics suggest [Ref: Nature]. Perhaps these techniques are tools of empowerment rather than manipulation and recent developments in the scope of prenatal screening suggest scientists may soon be able to screen unborn babies for 3,500 genetic disorders [Ref: Telegraph]. Whilst some celebrate this breakthrough in potentially reducing suffering from disability, others predict that this may lead to increased abortions which, they say, could devalue the lives of disabled people and undermine respect for the human condition [Ref: Daily Mail]. Fundamentally, those critical of these developments fear a slippery slope, at the bottom of which lies a damagingly utilitarian conception of the value of human life. Proponents of the procedures strongly dispute this, asserting that there is greater moral value in a child being born free from disability and suffering.
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Embryo 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.
Where are we now?
In recent years there has been a rapid development in the scope and availability of screening embryos for genetically-inherited diseases. PGD can already be used to identify more than 200 inherited defects, the most common being Down’s Syndrome (the only defect routinely screened for on the NHS), spina bifida, and some forms of cystic fibrosis. In the UK regulation of screening is tightly controlled by the Human Fertilisation and Embryology Authority (HFEA), when compared to the USA, but critics fear an ever-liberalising approach by the HFEA which has recently seen controversial clearance given for scans for breast cancer and Alzheimers disease which often only affect sufferers well into their adult lives [Ref: Daily Mail]. In the UK sex selection is currently permitted for medical reasons, like the gender-specific disease haemophilia, but is banned for physical, social, or psychological reasons. With the predicted expansion of genetic mapping, and the identification of ‘de novo’ mutations, doctors could even be able to identify potential sufferers of autism and schizophrenia [Ref: Telegraph]. It is thought by some that such non-invasive genetic screening may be much more widely available over the next 5 years at an approximate cost of $50,000 per child [Ref: BioNews]. This predicted expansion of not only specific techniques but of the scope of genetic screening has raised serious ethical dilemmas, particularly given predictions that parents may be able to deselect, abort, or specifically select an embryo or foetus based solely on that child’s future sexual orientation for example [Ref: Bioedge]. Some even fear the rapid expansion of these techniques, and a liberalising approach to ethical issues, may one day result in the existence of ‘Designer Babies’ where parents may select embryos on the basis of intelligence, athleticism, hair or eye colour.
Preventing disability: rebranded eugenics or laudable goal?
Embryonic screening proponents argue they are ending sufferance at the hands of disability and consider it unjust that parents would opt to impose avoidable genetic disorders upon their children. Some have gone so far as to assert that the parents of a child have a moral duty to screen for genetic disorders, not merely a right to do so [Ref: Opposing Views]. Critics counter that it would be more beneficial for society to accept each other as we are and that to encourage the reduction of the number of disabled people in society would be to send a negative, and potentially harmful, message to disabled people themsevles. For some, the relatively recent normalisation of conditions like autism [Ref: Progress] strongly supports the view that human variance should be celebrated and not eliminated [Ref: Guardian]. Some point to pledges like that of the Danish governments to eliminate Down’s Syndrome by 2030 as evidence of a drive to prevent any deviation from biological ‘normality’ and question how we can celebrate the Paralympic Games whilst also promote the view that disability is something to be actively eliminated [Ref: Globe and Mail].
A slippery slope or the yellow brick road?
The prospect of detecting thousands of genetic disorders prior to birth, which can then be used as the basis for an abortion or the deselection of an embryo raises serious ethical dilemmas [Ref: New York Times]. Some question what is to be meant by ‘disability’ when in recent years conditions like deafness have been categorised as a disability less readily [Ref: spiked]. Further questions are raised about how severe a disability must be to justify termination or deselection and strong opposition exists about the future possibility of conditions like autism being used to justify an abortion. If there are to be limits on which disabilities are sufficiently severe, the question is posed as to whether anyone has the authority or the means to make such an inevitably arbitrary distinction. It’s argued that this devalues human life by turning people into commodities [Ref: BBC News]. But proponents of embryo screening emphasise that abortion is already widespread in the UK and that to further impose limits on a woman’s right to choose in this way is highly illiberal.
Devaluing human life?
Critics argue that all human life should be valued equally, and they ask if we can value the life of a non-disabled person who cannot speak multiple languages, play sport, write novels, or do handstands just as much as we value the life of a non-disabled person who can do these things, in which case how can the singling out of disability be justified? This has led to harsher critics branding genetic screening ‘modernised eugenics’ - gradually eliminating the weak in society on the basis of their physical or mental capabilities [Ref: Journal of Medical Ethics]. However, proponents attack this comparison, pointing out that whilst eugenics is state-sponsored and coercive, genetic screening merely provides information to prospective parents. Scientists continue to face accusations that they are attempting to ‘play God’ using these procedures, but is this a sensationalistic appeal to emotion or does it have merit [Ref: Telegraph]? Is this a push towards the devaluation of human life or a laudable scientific breakthrough providing an opportunity for the prevention of suffering for thousands of people every year?
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.
Glimpse at destiny comes with great responsibility
Roger Highfield Telegraph 7 June 2012
Embryo screening and the ethics of human genetic engineering
Leslie A. Pray Nature 2008
FOR
Foetal screening: Good or Evil?
M.R. Hall Huffington Post 23 June 2012
Dan Kennedy Guardian 2 February 2010
If we screen out autism we run the risk of losing genius, too
Magnus Linklater The Times 12 January 2009
Michael Sandel Christian Science Monitor 5 June 2007
AGAINST
Eugenics or ‘reprogenetics’? Call it what you will, but let’s do it
Alexandre Erler Practical Ethics 24 February 2010
Designer Babies: A right to choose?
James Hughes Wired.com 9 March 2009
Hysteria about designer babies is laughable, they already exist
Carol Midgley The Times 24 July 2004
Dr Ellie Lee spiked 17 April 2003
IN DEPTH
The wrongs, and rights, of genetic screening of children
Tom Chivers Telegraph 16 August 2012
Prenatal testing: a double-edged sword leading to abortion
Steven Ertelt LifeNews.com 27 July 2012
‘Three parent babies’ cure for illness raises ethical fear
Ian Sample Guardian 5 June 2012
When is a life form worthy of life?
Der Spiegel 7 July 2010
Science – and ethics – of this screening are complex
Sarah Boseley Guardian 10 January 2009
There’s more to life than being Joe Normal
Bryan Appleyard Independent 6 June 1996
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.
Should We Be Allowed to Design Babies?
Daniel Malynn BioNews 21 May 2012
Genetic testing has little value if there’s no chance of a cure
Mary Dejevsky Independent 8 April 2011
Genetic testing is ‘ethically sound’
NHS 6 April 2011
BBC Radio 4 2009
Pushing eugenics as smart science
Wesley Smith Opposing Views 8 March 2009
Mandatory Genetic Testing isn’t Eugenics, it’s Smart Science
Jacob M Appel Opposing VIews 4 March 2009
Medical science must understand its limits
Daily Mail 9 January 2009
Should we stamp out ‘designer deafness’?
Sandy Starr spiked 31 March 2008
Choosing a deaf baby is criminal
Daniel Finkelstein The Times 12 March 2008
Genetic Testing + Abortion = ???
Amy Harmon New York Times 13 March 2007
New Scientist 4 September 2006
Head to head: Genetic Screening
Baroness Ruth Deech v Dr David King BBC 10 May 2006
The genetics and sociology of the autism spectrum
Dr Michael Fitzpatrick Progress Educational Trust
Screening for disability: a eugenic pursuit?
John Gillott Journal of Medical Ethics
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.
British women fly to US to choose sex of baby
Telegraph 28 August 2012
Genetically engineering ‘ethical’ babies is a moral obligation, says Oxford professor
Telegraph 16 August 2012
Parents can now screen their embryos for Alzheimer’s so they can have babies free of the disease
Daily Mail 11 August 2012
Designer baby row over US clinic
BioEdge 10 August 2012
Doctors could screen for gay gene in near future
BioEdge 10 August 2012
Genetic testing for gayness not too far off for expectant parents
Examiner 8 August 2012
Dozens of IVF babies are being aborted because they have Down’s syndrome
Daily Mail 16 July 2012
Euroscience Open Forum 2012: DNA gene testing ‘will screen out lovers’
Telegraph 13 July 2012
Unborn babies could be tested for 3,500 genetic faults
Telegraph 6 July 2012
DNA of unborn baby mapped from just mother’s blood paving way for new genetic disease screening
Daily Mail 4 July 2012
Egg DNA transplant is ethical, says UK panel
New Scientist 13 June 2012
Whole fetal genome sequenced for the first time
BioNews 11 June 2012
Gene ‘revolution’ has stalled, says Winston
The Times 9 June 2012
Genetic screening of unborn babies ‘may be inaccurate’
Telegraph 7 June 2012
Party time for children born free of gene disorders
London Evening Standard 22 November 2011
Designer baby row over clinic that offers eye, skin and hair colour
Telegraph 28 February 2009
Call to offer genetic screening for married cousins
Guardian 17 May 2008
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