14. Ethical issues in antenatal screening and testing

Question 1

Forms of screening and testing

Answer 1

Routine’ Procedures
Blood tests
Fetal anomaly scan

Nuchal fold scans
Amniocentesis and chorionic villus sampling
Non-Invasive Pre-natal Testing

Targeted antenatal screening and testing for genetically inherited diseases

Pre-implantation Genetic diagnosis

Question 2

public versus individual interests

Answer 2

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.

Question 3

Termination of pregnancy

Answer 3

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.

Question 4

Common objections to screening in general

Answer 4

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

Question 5

Seriousness

Answer 5

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
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.
Although this is done against the background of societal and medical endorsement of particular screening regimes.

Question 6

Valuing choice, seeking control

Answer 6

It is a choice many women value and it could be argued that many women want more rather than less screening . 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.

Question 7

Ethical challenges with screening

Answer 7

The experience of screening belongs to individual women, and for some women it will confront them with ethically challenging choices and decisions.
It is also offered at a local level by individual practitioners who may or may not agree with the goals of the programme as a whole or the choices made by individual women.

Question 8

Medicalisation of pregnancy

Answer 8

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)

Question 9

Tentative pregnancy

Answer 9

he 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’

Question 10

Lack of understanding

Answer 10

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)

Question 11

once a woman has chosen screening

Answer 11

Should health care professionals check that women understand the full nature of the choice they have made?

Should health care professionals be explicit about the inclusion of termination of pregnancy as a component of screening programmes?

Should a woman be permitted to access screening and then testing because she wants the information it provides, or should she have shown herself to be open to the issue of termination?

Question 12

Individual choice

Answer 12

An individual woman or couple must feel safe in their right to refuse any form of screening or testing without consequence for their future treatment as (when judged competent) they have a fundamental moral and legal right to refuse any form of medical intervention.

It is less clear to what extent a woman or couple should be able to demand any particular form of screening or testing within an NHS context

Question 13

Promoting understanding

Answer 13

Consent (which entails the right to accept and refuse) is only valid if it is based on adequate information

To what extent is it the health care professionals’ responsibility to present the woman with information about the conditions being screened for?

How is this information presented?

Question 14

What might have an impact on choice?

Answer 14

Concern about risks associated with later elements of the screening programme e.g. false positives, miscarriage associated with CVS or amniocentesis

Views or preferences relating to termination of pregnancy

Fundamental moral views on the status of the fetus and pregnancy, and the possibility of termination

Question 15

Viable choices

Answer 15

What might affect whether a woman really has an opportunity to refuse screening?
Routinisation
Institutional attitude
Social or familial attitudes, expectations and/or pressures
Cost/Insurance implications (in other domains)

Question 16

The importance of communication

Answer 16

It is relatively straightforward to tell women the facts, and correct any purely factual misunderstandings they may have

It is less straightforward to deal with conceptual issues such as risk

It is extremely difficult for many professionals to engage in discussions about fundamental moral and religious beliefs particularly if women have very different views to their own.

Question 17

Points to consider

Answer 17

Antenatal screening and testing raises ethical issues at a macro and a micro level
As a society we need to justify a decision to introduce screening when the purpose is to reduce the number of people born with particular conditions.
Individual woman should be free to opt in or out, nothing should be presumed, and there should not be negative implications for refusing to accept screening and testing
Information should be provided in a value free and accurate manner
Discussions should pay due regard to beliefs as well as knowledge although a clinician’s own beliefs should not frame the discussion
In the bid to be non-directive health care professionals should not leave their clients feeling ‘abandoned’.
Staff should be cognisant of, and sensitive to, the needs of women/couples whose babies are born with screened-for conditions and people who are born.