The Ethics of Screening Flashcards
1
Q
Questions associated with screening in general
A
- How do we justify establishing a screening programme?
- Who do we offer screening to?
- What are the best methods of screening for various conditions?
- What specifically ethical problems does it generate?
2
Q
Forms of screening and testing
- Blood tests
- … fold scans
- Amnio… and chorionic villus sampling
- Fetal … scan
- NIPT (…)
- Targeted antenatal screening and testing for … inherited diseases
- Pre-implantation Genetic diagnosis
- … wide genetic screening of newborns
A
- Blood tests
- Nuchal fold scans
- Amniocentesis and chorionic villus sampling
- Fetal anomaly scan
- NIPT (non-invasive-prenatal-testing)
- Targeted antenatal screening and testing for genetically inherited diseases
- Pre-implantation Genetic diagnosis
- Population wide genetic screening of newborns
3
Q
Public versus individual interests - Screening
- Screening programmes are generally justified in terms of … effectiveness, with the … of detecting an … pregnancy being offset against the … of caring for an individual with the condition.
- This is not an argument primarily based on individual rights to information and choice.
A
- Screening programmes are generally justified in terms of cost effectiveness, with the cost of detecting an affected pregnancy being offset against the life time cost of caring for an individual with the condition.
- This is not an argument primarily based on individual rights to information and choice.
4
Q
Lack of understanding - Screening
- People coming to the antenatal clinic, going for … scans, seeing the baby for the first time, they are not considering really for a second that there is anything wrong…and I think the dilemma is do you actually point out to them that there is a chance something might be seriously wrong, do you accept their perception of the pregnancy, because it is quite likely to be OK. For the few people that it’s not OK, do you prepare them for all that, or do you let people go through blindly in a sort of - I don’t know. (Midwife 29)
- in Williams, Alderson and Farsides op cit
A
- People coming to the antenatal clinic, going for nuchal scans, seeing the baby for the first time, they are not considering really for a second that there is anything wrong…and I think the dilemma is do you actually point out to them that there is a chance something might be seriously wrong, do you accept their perception of the pregnancy, because it is quite likely to be OK. For the few people that it’s not OK, do you prepare them for all that, or do you let people go through blindly in a sort of - I don’t know. (Midwife 29)
- in Williams, Alderson and Farsides op cit
5
Q
Valuing choice, seeking control - Screening
- Screening and testing is a choice many women value, and it could be argued that many women want more rather than less. Consider, for example, the recent increase in demand for … screening in the context of IVF, despite the unresolved debate over whether it increases or decreases pregnancy rates. The implication being that women facing infertility might choose to reduce the chance of a pregnancy in the interests of attempting to avoid ….
A
- Screening and testing is a choice many women value, and it could be argued that many women want more rather than less. Consider, for example, the recent increase in demand for aneuploidy screening in the context of IVF, despite the unresolved debate over whether it increases or decreases pregnancy rates. The implication being that women facing infertility might choose to reduce the chance of a pregnancy in the interests of attempting to avoid disability.
6
Q
“tentative pregnancy”
- The problem or one of the problems with the technology of … and selective … is what it does to us, to mothers and fathers and to families. It sets up a contradiction in definitions. It asks women to accept their pregnancies and their babies, to take care of the babies within them, and yet be willing to … them. We ask them to think about the needs of the coming baby, to fantasise about the baby, to begin to become the mother of the baby, and yet to be willing to abort the genetically damaged fetus. At the same time. For ..-… weeks’
A
- The problem or one of the problems with the technology of amniocentesis and selective abortion is what it does to us, to mothers and fathers and to families. It sets up a contradiction in definitions. It asks women to accept their pregnancies and their babies, to take care of the babies within them, and yet be willing to abort them. We ask them to think about the needs of the coming baby, to fantasise about the baby, to begin to become the mother of the baby, and yet to be willing to abort the genetically damaged fetus. At the same time. For 20-24 weeks’
7
Q
Medicalisation of pregnancy
- I feel that we aren’t helping women to focus enough on the … I think pregnancy normally is, and I think the more we look for every … from the norm if you like in the population of pregnant women, the more we add some sort of emotional complexity to pregnancy that I just can’t believe is ultimately helpful. (Midwife 2)
- Williams, C, Alderson P and Farsides B ‘Dilemmas Encountered by Health care Professionals offering nuchal translucency screening’ in Prenatal Diagnosis 2002 22 216-20
A
- I feel that we aren’t helping women to focus enough on the normality I think pregnancy normally is, and I think the more we look for every deviation from the norm if you like in the population of pregnant women, the more we add some sort of emotional complexity to pregnancy that I just can’t believe is ultimately helpful. (Midwife 2)
- Williams, C, Alderson P and Farsides B ‘Dilemmas Encountered by Health care Professionals offering nuchal translucency screening’ in Prenatal Diagnosis 2002 22 216-20
8
Q
Core ethical issue - Screening
- Given that the goal of the screening programme is to reduce the health … related to disability then … of pregnancy will be offered to women who test … for the screened for condition
- … will then fall under Section … of the UK’s … … Act which permits abortion at any time if there is significant risk of the baby being born with a serious disabiliity.
A
- Given that the goal of the screening programme is to reduce the health costs related to disability then termination of pregnancy will be offered to women who test positive for the screened for condition
- Termination will then fall under Section 1(1)d of the UK’s 1967 Abortion Act which permits abortion at any time if there is significant risk of the baby being born with a serious disabiliity.
9
Q
Common objections to screening in general
- It adds to the … of pregnancy
- … in terms of presenting particular types of individual as not worthy of life-time expenditure.
- … to those born with the conditions, possibly condemning them to … levels of support thereby contributing to the … determinants of disability.
- … in terms of screening for what we can screen for rather than genuinely serious conditions
A
- It adds to the medicalisation of pregnancy
- Discriminatory in terms of presenting particular types of individual as not worthy of life-time expenditure.
- Demeaning to those born with the conditions, possibly condemning them to lower levels of support thereby contributing to the social determinants of disability.
- Arbitrary in terms of screening for what we can screen for rather than genuinely serious conditions
10
Q
Seriousness - Screening
- This suggests that legally and ethically we should only screen for ‘… conditions’ given that both the Abortion Act and the … use the concept to determine what is permissible under legislation and regulation
- However, in relation to antenatal screening there is no … list of serious conditions, so it is left to women (with the support of clinicians) to determine what counts as serious to them when deciding whether to opt in or out of established screening programmes or pursue other forms of testing.
- This happens against the background of societal and medical endorsement of particular screening regimes and concerns about others.
A
- This suggests that legally and ethically we should only screen for ‘serious conditions’ given that both the Abortion Act and the HFEA use the concept to determine what is permissible under legislation and regulation
- However, in relation to antenatal screening there is no definitive list of serious conditions, so it is left to women (with the support of clinicians) to determine what counts as serious to them when deciding whether to opt in or out of established screening programmes or pursue other forms of testing.
- This happens against the background of societal and medical endorsement of particular screening regimes and concerns about others.
11
Q
Down’s Syndrome : a case study in ‘seriousness’
- Antenatal screening for Down’s Syndrome - Chosen because
- There is a … screening programme in most areas
- It is seen as ‘…’
- Yet, views and ‘… representations’ of the disability screened for are interestingly varied
- Health care professionals still find it …
A
- Antenatal screening for Down’s Syndrome - Chosen because
- There is a well-established screening programme in most areas
- It is seen as ‘routine’
- Yet, views and ‘social representations’ of the disability screened for are interestingly varied
- Health care professionals still find it ethically challenging
12
Q
Historical representation - Screening
- Language and tone is very unacceptable nowadays
A
- “…The very large number of congenital idiots are typical mongols. So marked is this that when placed side by side it is difficult to believe that the specimens compared are not children of the same parents. The number of idiots who have arranged themselves around the Mongolian type is so great and they present such a close resemblance to one another in mental power that I shall describe an idiot member of this racial division selected from the large number who have fallen under my observation. The face is flat and broad and destitute of prominence. The cheeks are roundish and extended laterally. The eyes are obliquely placed and the internal canthi more than normally distanced from one another. The palpebral fissure is very narrow The tongue is long, thick and much roughened. The nose is small. The skin has a slight dirty yellowish texture and is deficient in elasticity, giving the impression of being too large for the body.”
- John Langdon
13
Q
The Almond Tree – Jon Stallworthy - Down’s Syndrome
A
At seven-thirty
the visitors’ bell
scissored the calm
of the corridors.
The doctor walked with me
to the slicing doors.
His hand is upon my arm,
his voice - I have to tell
you - set another bell
beating in my head:
your son is a mongol
the doctor said.
14
Q
A more recent medical representation - Down’s Syndrome
- Their face is round and flat, and the eyes appear slightly slit-like. The nose is short and upturned, and the tongue frequently protrudes….as they grow their faces show signs of premature aging, yet their physical development is ….
- Professor Robert Winston, Making Babies BBC Books 1996
A
- Their face is round and flat, and the eyes appear slightly slit-like. The nose is short and upturned, and the tongue frequently protrudes….as they grow their faces show signs of premature aging, yet their physical development is retarded.
- Professor Robert Winston, Making Babies BBC Books 1996
15
Q
Personalised representation - Down’s Syndrome
- All people with Down’s syndrome share some certain physical characteristics, though not every child with the condition has every characteristic. Your baby will have inherited physical characteristics from both of you, just like any other of your children, as well as sharing some of the common signs of Down’s syndrome. Your baby is unique. Some parents wonder if there is a link between the number of these physical characteristics and the future development of their new baby. In fact, there is no way at this early stage of predicting the level of ability of your child.
- The extra chromosome means that your baby will be slower to reach her milestones and will have a certain degree of learning difficulty, but most children with Down’s syndrome do learn to walk and talk, ride a bike and read and write, in fact to do most of the things other children do. It’s just that their development is usually delayed.
- Information for parents provided by Downs Syndrome Association available at http://www.downs-syndrome.org.uk/DSA_NewParents.aspx
A
- All people with Down’s syndrome share some certain physical characteristics, though not every child with the condition has every characteristic. Your baby will have inherited physical characteristics from both of you, just like any other of your children, as well as sharing some of the common signs of Down’s syndrome. Your baby is unique. Some parents wonder if there is a link between the number of these physical characteristics and the future development of their new baby. In fact, there is no way at this early stage of predicting the level of ability of your child.
- The extra chromosome means that your baby will be slower to reach her milestones and will have a certain degree of learning difficulty, but most children with Down’s syndrome do learn to walk and talk, ride a bike and read and write, in fact to do most of the things other children do. It’s just that their development is usually delayed.
- Information for parents provided by Downs Syndrome Association available at http://www.downs-syndrome.org.uk/DSA_NewParents.aspx
16
Q
The views of people with Down Syndrome
A
17
Q
ARC stands for…
A
ARC – antenatal results and choices
