TOPIC GUIDE: Genetic Screening

"Genetic screening of embryos should be celebrated, not feared"

PUBLISHED: 13 May 2010

AUTHOR: Craig Fairnington

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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.

Science - and ethics - of this screening are complex

Sarah Boseley Guardian 10 January 2009

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

Designer Babies: A right to choose?

James Hughes Wired.com 9 March 2009

Debating ‘designer babies’

Ellie Lee Spiked 17 April 2003

AGAINST

Wiping out human variation

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

Color I.D.

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.

Will Down Syndrome Disappear?

Lachlan de Crespigny Practical Ethics News 25 October 2009

Disease free babies? New embryo screening

Woman's Hour BBC Radio 4 7 July 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

The Toughest Test

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.

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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