Federal Health Minister Greg Hunt recently announced that from 1 November 2021, Australians going through in vitro fertilisation (IVF) will be able to claim a Medicare rebate for genetic testing to screen embryos for severe genetic conditions prior to implantation.
Genetic disorders to be screened include cystic fibrosis, muscular dystrophy, spinal muscular atrophy (SMA), fragile X syndrome, neurofibromatosis and Huntington’s disease.
The government has committed $95.9 million in funding towards the new rebate. Previously, people who knew they were carriers of such conditions had to pay for screening privately. The Health Minister has dubbed the rebate, ‘Mackenzie’s Gift’, saying that the testing would mean “more children will now be born free of genetic conditions”.
“That means that if there is a fertilised egg, that is clear of SMA, or Fragile X, they can go ahead with the IVF, and go ahead knowing that this beautiful young child will be born free of the condition which might otherwise lead to an agonising one or two years of life,” said Mr Hunt.
‘Mackenzie’s Gift’ is the next step following an initiative called ‘Mackenzie’s Mission’, the $20 million government-funded study of reproductive carrier screening (RCS), which is part of a broader $500 million government funding scheme for genomics research announced in 2018.
The study involves screening up to 10,000 couples across Australia – who are either planning to have children or are in early pregnancy – to give them information about their likelihood of having a child with a severe genetic condition.
The initiative was named after Mackenzie Casella, who tragically lost her battle with SMA at seven months of age. Mackenzie’s death prompted her parents to campaign for wider screening of genetic conditions.
According to its website, “Mackenzie’s Mission aims to prepare the Australian healthcare system for population-wide reproductive genetic carrier screening”, and has “the long-term aim of making screening free for every couple in Australia who chooses to have the test”.
The goal of preventing the suffering of both children and their parents is a noble one, but what kind of ethical and social implications does such standardised, widespread genetic screening – in both pre-pregnancy and early-stage pregnancy – have?
Pressure on women
If genetic screening, at either the pre- or post-conception stages, becomes routine and part of a population-wide, government-funded health program, how “free” will women feel in declining to participate in screening for genetic conditions? How “free” will they feel to continue with a pregnancy once a genetic condition is detected?
According to academics from the University of Sydney,
“routinisation is the idea that RCS is part of routine care and it brings the implication that screening is the right thing to do. This perception can arise when RCS is offered to everyone, and as more and more people take up the offer.”
They have suggested that “routinisation can undermine freedom of choice in relation to participating in RCS”, which is “one of the key factors that distinguish genetic screening from eugenics”. As a result, they maintain that “RCS must seek to avoid routinisation which can lead to a perceived pressure both to participate in screening and also to take steps to avoid the birth of an affected child”.
Mackenzie’s Mission’s aim of “free”, “population-wide” screening appears to ignore such concerns.
With regard to the concern that women will be pressured to abort if a condition is detected during pregnancy, one only has to look at the disturbing story that surfaced recently of Aussie influencer Sarah Stevenson who was devastated after being told by her doctor to “stop and start again” because her unborn son had a health condition.
Just a couple of weeks earlier a NSW couple shared a similar story, where in one breath, the wife was informed that their unborn daughter had tested positive for Down syndrome, and in the next, was told by the doctor that he had booked her in for an abortion.
A new survey by Down Syndrome Australia (DSA) has revealed that half of new parents face discrimination and neglect from medical professionals during and after prenatal screenings. DSA chief executive Ellen Skladzien, who led the research, said the results were "shocking" and exposed a system that was not working.
"To hear families being repeatedly asked about termination and not supported in their decision [to proceed with the pregnancy] is a case of neglect," she said.
The pressure placed on women by health professionals to abort children with disabilities is unfortunately nothing new, and there are many stories like these. It is not difficult to imagine such pressure mounting if genetic screening becomes more commonplace.
A related concern is how parents will be treated in the future if they (a) have a child with a disability after choosing not to screen for genetic conditions (b) choose to conceive naturally, aware of the likelihood of conceiving a child with a genetic condition after pre-conceptional carrier screening, or (c) if they choose to continue with a pregnancy after their child is diagnosed with one.
Is there a chance that parents will eventually be denied access to government-subsidised care if they have made a “choice” to have (or to not take steps to prevent having) a child with a disability?
Given the current public debate in Australia in which there is serious discussion occurring about which segments of society are or should be entitled to receive public health care based on decisions they have made or not made, it is not difficult to see how such attitudes could develop in this country.
Devaluing of people with disabilities
What does a rigorous screening regime say about the lives of those who are already living with the genetic conditions being screened for? Will it contribute to greater discrimination against people with disabilities? How is such a state-funded, routine, population-wide, screening program different from disavowed eugenics programs of the past?
Even those in favour of screening practices acknowledge their eugenic aspects. They recognise that they are reminiscent of the abhorrent eugenics programs practised in various countries during the 20th century, which sought to eliminate “undesirable”, “defective”, “inferior” populations (including persons with disabilities) and improve the genetic quality of a human population.
Strategies have been proposed to counter the eugenics critique of such screening programs, such as concurrent efforts to boost inclusivity and support for people with disabilities, consulting with them regarding which conditions to screen for, and avoiding routinisation. But do such strategies really negate the judgement – arguably inherent in a program designed to screen out certain conditions and disabilities – that some lives are less valuable than others?
Last year, UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas, cautioned about "eliminating" human characteristics deemed undesirable through developments in gene therapy, genetic engineering and prenatal screening.
"People with disabilities are genuinely concerned that these developments could result in new eugenic practices and further undermine social acceptance and solidarity towards disability – and more broadly, towards human diversity," she said.
"What we need is a profound cultural transformation on the way society relates to the difference. That is a commitment to embrace disability as a positive aspect of human diversity. States must combat all forms of discrimination based on disability.”
The Special Rapporteur explained that "ableism" is at the root of the problem. "If the life experiences of people with disabilities continue to be undervalued, no progress will be made."
The Disability Royal Commission in Australia has already unearthed the appalling maltreatment of people with disabilities across all sectors of society. There is good reason to question whether a population-wide genetic screening program – aimed at rooting out disability from the population – will hamper progress for people with disabilities even further.
Lipstick on a pig?
Over the last few decades, there has been a shift in academia and in health practice from talking about prenatal screening in terms of ‘prevention’ to talking about it in terms of ‘autonomy’. The rationale for this was to avoid criticism that prenatal screening placed undue pressure on women to make the ‘right’, ‘preventative’ reproductive choices, as well as to avoid objections that it is discriminatory towards people living with the relevant genetic conditions.
In an article for Human Reproduction Open, European academics write:
“In order to avoid these moral challenges, official (Western) accounts of the aim of prenatal screening have moved away from the language of prevention and accepted the so-called autonomy paradigm, meaning that such screening should enable individual pregnant women (and their partners) to make meaningful reproductive choices with regard to having or not having a child with a serious disorder or disability.”
However, just because language has been changed in order to avoid the ‘moral challenges’ associated with prenatal screening, does not mean that these objections have in fact been overcome. Indeed, the concerns we have raised when it comes to the rights and wellbeing of both women and people with disabilities show that they have not. The shift in language and focus for prenatal screening from ‘prevention’ to ‘autonomy’ is arguably nothing more than new packaging for the same, ethically fraught practice.
It is in the best interests of women, preborn children, those with disabilities, and our society as a whole, that ethical concerns around prenatal screening are dealt with genuinely, rather than simply undertaking a marketing exercise to make it sound more palatable. Such an approach gives the impression that ethics are being moulded to fit the practice of prenatal screening, when it should be the other way around.
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