Is it ok to abort a baby who has been diagnosed with Down syndrome? What about if you find out the baby is a girl, and you wanted a boy?
One UK ethics watchdog recently endorsed early pregnancy tests to screen for Down syndrome but opposed the same tests to find out the baby’s sex, lest it lead to gendercide.
And that logic is far too widespread, says a disabilities rights group, which is challenging such thinking in a recent petition.
“While many denounce gendercide and few would argue that parents should be free to abort a girl because they prefer a boy, when it comes to Down syndrome, the logic tragically changes. It becomes a valued individual ‘free and accepted choice’ to discriminate against people with genetic variations. How is this possible?”, asks a petition from Stop Discriminating Down, a project of the Jerome Lejeune Foundation and DownPride.
This week, the Nuffield Council on Bioethics published its findings on non-invasive prenatal testing, recommending it should not be used to reveal the unborn child’s sex, lest it promote sex-selective abortion.
However, it also recommended that NIPT be accessible to parents who wish to find out whether their child “has a significant medical condition or impairment, but only within an environment that enables them to make autonomous, informed choices.”
The test involves taking a blood sample from the mother at around 9 or 10 weeks of pregnancy. It is a non-invasive way of testing for genetic conditions and variations in the unborn child, and is thus safer than invasive measures such as amniocentesis, which carry a risk of miscarriage and other harms to the child.
The Nuffield Council’s recommendations would encourage the use of NIPT to screen for Down syndrome, Edwards syndrome, and Patau syndrome – “fetal anomalies” that in England, Wales, and Scotland are grounds for abortion under the Abortion Act 1967. The National Health Service will offer NIPT to pregnant women whose unborn children have a high risk of these anomalies from 2018.
The Nuffield Council noted that 74 percent of pregnant women in the UK currently choose to have a screening test for Down syndrome, and that between 89 and 95 percent of women abort their child after receiving a Down syndrome diagnosis.
It estimates that annually, nearly 200 more fetuses with Down syndrome in the UK will be identified, and there will be an estimated 17 fewer miscarriages related to procedures such as amniocentesis.
However, an additional 200 fetuses who are identified as having Down syndrome means, given the figures provided by the Nuffield Council, that nearly between 178 and 190 of those fetuses will be aborted.
“To offset the possibility that the increased use of NIPT might adversely affect disabled people, the Government … have a duty to provide disabled people with high quality specialist health and social care, and to tackle discrimination, exclusion and negative societal attitudes,” the Nuffield Council wrote in its report.
The council acknowledged, however, that introducing NIPT could affect the specialist health and social care received by disabled persons, and the importance attributed to research into their conditions.
And “Making NIPT available on the NHS could be perceived as sending negative and hurtful messages about the value of people with the syndromes being tested for,” it added. “Disabled people and their families might be more vulnerable to discrminination, stigma or abuse if NIPT gives rise to perceptions that people are ‘to blame’ for having a baby with a disability.”
The council also recommended that NIPT be accompanied by “accurate, balanced and non-directive information for women and couples,” and that private providers of the test be monitored to ensure their advertising is neither misleading nor harmful.
Turning from screening for “fetal anomalies”, the Nuffield Council said that “NIPT should not generally be used to find out whether a fetus has a less significant medical condition or impairment, has an adult onset condition, or carries a copy of a gene tht does not cause a condition on its own. Nor should it be used to reveal non-medical features of the fetus, such as sex.”
It added that “the Government should ensure that private NIPT providers stop offering fetal sex determination,” and that it should establish that “whole genome sequencing of fetuses is not offered outside research environments.”
The report of Nuffield Council acknowledged “the offer of NIPT to determine the sex of the fetus at an early stage of pregnancy may increase the risk of sex selective terminations taking place,” which they said “there is some evidence that sex selective terminations have happened in the UK, and they are known to occur in other countries.”
Sex-selective abortions are illegal in the UK, but in recent years the government has been criticized for a lack of enforcement.
The UK’s Department of Health has expressed concern for the pressure on pregnant women in some south Asian immigrant communities to have boys, and former Minister of Parliament Paul Uppal has said “the expectation is there – I’ve seen it firsthand myself.”
Advocates for persons with Down syndrome are strongly opposed to the expansion of NIPT.
Stop Discriminating Down says that “Government encouraged selective abortion, the refusal to provide health-benefits, or the refusal to provide adequate medical care equal to that provided to their typical peers is a social and moral crime against all people with disabilities and their families who thanks to developments in research, medical care, and social acceptance have many possibilities. The expansion of government sponsored prenatal screening and abortion stand in stark contradiction to the social progress made over the past 40 years towards an inclusive and equal society.”
“While throughout the world we petition, walk, and meet together to fight against discrimination and to protect biodiversity, no-one should have to defend threats to their life because of his or her genetic make-up. In a humane world aware of the need for acceptance and inclusion of differences, people with Down syndrome should not be discriminated against.”