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Table 1 An ethical framework for prenatal screening

From: Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals

  ESHG/ASHG (2015) WHO (2003) Ethikrat (2013) Dutch Health Council (2013) UNESCO (2015)
Aim of prenatal screening The aim is to enable autonomous reproductive choices, i.e. meaningful choices, related to serious health problems.
The aim is achieved when women are enabled to make informed choices. Prenatal screening has a different goal than other forms of screening, because of the ‘morally sensitive practice’ of (selective) abortion and the stigmatisation of disabled people.
The aim is to obtain information and to promote freedom of choice and autonomy. Being able to prepare for the birth of a child with a disability is also seen as a way to exercise reproductive autonomy.
Free choice requires:
1) adequate, unbiased information;
2) availability of relevant alternatives, including availability of healthcare services for disabled children or the (legal) possibility of abortion.
The aim is not specified, but prenatal screening is linked to self-determination and autonomy: “If a pregnant woman makes decisions about her pregnancy, these must be seen inter alia in the context of her right to reproductive self-determination.”
Reproductive decisions affect the unborn child and are thus not unlimited.
The aim is to enable and promote choice concerning terminating or continuing the pregnancy.
“Informed choice is not a condition for, but the aim of prenatal screening.” The aim is not to maximise reproductive choice as such. If informed choice is not reached, the aim is not achieved.
The aim is “not health gain but to decide (…) whether to carry a pregnancy to term.” Furthermore, “it allows those involved to prepare for the birth of a sick or disabled child.”
There is controversy about the limits of reproductive autonomy in the light of a child’s right to an un-manipulated genetic make-up.
Prevention, focused on “reducing care costs for people with congenital conditions or disabilities, cannot be the goal of such screening. That would imply a discriminatory practice that sends the message that these people are unwelcome in society.”
Proportionality Proportionality is defined as a balancing of benefits and harms.
Benefits of NIPT include reassurance, assistance in making informed reproductive decisions, and less invasive testing.
Harms of prenatal screening generally include false reassurance, stress and anxiety, and risk of miscarriage in follow-up diagnostic testing.
Balancing of benefits and harms includes consideration of quality aspects of the test and adequate counselling.
Proportionality is not discussed. Benefits and burdens are included in a cost-benefit analysis.
Benefits are the chance to prepare for the birth of a child that will need medical treatment or a relief of maternal anxiety.
Burdens include selective abortion of a wanted pregnancy.
Proportionality is not discussed, although it is stated that quality assurance is a precondition to meeting the aim of prenatal screening.
Balancing benefits and harms is difficult: “The effect of a differentiated prenatal diagnosis is ambivalent. It may relieve the pregnant woman of fears, but on the other hand there is the danger that the (...) associated burden of deciding make[s] the couple affected (…) and may even overstrain them.”
It is seen as a great risk that women may be insufficiently aware of the consequences of testing and subsequent decisions they will have to make.
Proportionality is a central requirement for prenatal screening. Screening is only justified when the value or utility of the offer is established and the benefits outweigh the disadvantages.
Benefits of NIPT include reassurance, informed reproductive decisions and less invasive testing. ‘Disadvantages’ of screening include false reassurance, test-related stress and anxiety and risk of miscarriage.
Proportionality and proven usefulness are preconditions for a justified prenatal screening offer. The advantages should outweigh the disadvantages.
Benefits are having freedom to choose and fewer invasive tests. Disadvantages are “routinization and institutionalization of choice of not giving birth to an ill or disabled child.” If a test becomes self-evident women might feel pressured to test or stigmatised when they will not test.
Justice Justice refers to the distribution of costs: “As health budgets are inevitably limited (…), opportunity costs will have to be taken into account as well.” The requirement of just distribution of healthcare costs will demarcate the scope of prenatal screening. Justice refers to the “equitable distribution of genetics services, including prenatal diagnosis, is owed first to those with the greatest medical need, regardless of ability to pay, or any other considerations.”
Relief of maternal anxiety has lower priority than medical indications for prenatal screening, in the just distribution of healthcare resources.
Justice refers to equal access to prenatal screening and to the danger of “discrimination and stigmatization of people with particular genetic characteristics.” Justice refers to an appropriate use of healthcare resources. Prenatal screening can be used appropriately by couples wishing to prepare for the birth of an affected child, which is considered a justified aim of screening.
Justice is also mentioned in the context of equal access to an expanded scope of prenatal screening: screening for abnormalities other than trisomy 21, 18 and 13 should not only be available for high-risk women (through invasive follow-up testing).
Justice refers to the organisation of healthcare systems, so that innovations are shared with society as a whole, without becoming a new source of inequality and discrimination.
Justice also pertains to education: people should be actively enabled to exercise their freedom and autonomy.
Finally, it refers to proper distribution of costs and investments in various fields within the healthcare system (e.g. care for people with disabilities).
Social aspects As a public health programme, prenatal screening might have “consequences for other individuals and groups (including those living with the relevant conditions)”.
To avoid discriminatory messages, the aim of screening (reproductive autonomy) should be stressed.
NIPT might be seen as a routine procedure,which might lead to routinisation of prenatal screening, affecting the informed choices of pregnant women.
Prenatal screening may have negative effects for people with disabilities, but does not lead to the birth of fewer people with disabilities, as long as chromosomal and single gene disorders account for only a minority of disabilities present at birth.
Healthcare for people with disabilities will and should not be reduced, also to prevent ‘economic eugenics’ which would hinder voluntary decision-making.
Although “cultures or medical settings may be implicitly coercive,” these problems are seen as part of the general sociocultural context and not attributed to prenatal screening specifically.
Prenatal screening generates genetic information and could have social consequences including stigmatisation and discrimination.
There is a (shared) duty to create a society without discrimination, which will be a result of interactions between people and does not depend on the presence or absence of one test.
Routine offer of prenatal screening might have negative consequences for reproductive freedom and put pressure on women to test: the idea that pregnant women should take their parental responsibility and opt for testing should be avoided.
Prenatal screening programmes may have social impact but are not necessarily discriminatory, because they aim at reproductive choice and not at prevention.
However, concerns related to the social impact of screening on people with a disability are realistic.
Therefore ongoing ethical monitoring of screening practices is necessary. Also, the state should guarantee good-quality care for people with a disability.
A simple and safe test could possibly lead to routinisation, including pressure to test. This might affect reproductive autonomy.
Prenatal screening is often not a therapeutic intervention but likely to lead to abortion and it might lead to discrimination and stigmatisation.
“The adding up of a lot of individual choices to the ‘acceptability’ of aborting certain kinds of embryos (…) brings forward a societal phenomenon, which resembles a kind of eugenics in the search for a ‘perfect child’.”
Non-discrimination should be emphasised and guaranteed.
Prenatal screening as a ‘routine measure’ might negatively affect society’s perception of disability and societal solidarity with disabled people and the women who give birth to them.