With advances in screening for unborn children with Down syndrome, the future of genetic selection is now. This offers up grave questions about the value of people with Down syndrome, and of what it means to be human in the 21st century.
It’s estimated that around 60 per cent of pregnancies diagnosed with Down syndrome in New Zealand are terminated. This figure is likely to go up, with the Ministry of Health looking at introducing a new, cutting-edge screening programme.
Non-Invasive-Pre-Natal Testing (NIPT) has been hailed with excitement among the medical community, since a simple blood test can screen for Down syndrome with 99 per cent accuracy. In countries where NIPT is well established, rates of babies born with Down syndrome has reduced even further. In Europe, around 92 percent of pregnancies diagnosed with Down syndrome are terminated. And in Iceland, not a single baby has been born with Down syndrome in the past five years. Genetic selection is no longer the stuff of sci-fi. It is real, and it is here.
In New Zealand, the Ministry of Health is ‘currently undertaking policy work to consider the inclusion of NIPT’ in its public screening programme. Already available privately in New Zealand, it appears just a matter of time before this is publically funded. Which has left the Down syndrome community ‘sick and scared’, according to Mike Sullivan, head of advocacy group Saving Downs.
It’s hard to escape the irony that we are celebrating Disability Awareness Sunday on 18 June, while endangering the very people we claim to celebrate. Genetic selection has profound implications not just for disability in New Zealand, but for us as a society.
Vincenzo Vaccarino, 22, describes himself as a people person. ‘I am caring, helpful, independent and hardworking,’ says Vincenzo, who has Down syndrome.
He recently got engaged to his long-time girlfriend, with a proposal worthy of the silver screen. ‘It was a picnic at sunset in the rose garden at our local park. I asked my friends to help me change the words of a Bruno Mars song, which they sang to Rachel. I also gave each member of our families a letter that spelt out “Will You Marry Me?”, and then I knelt down and asked her to marry me.
It was such an amazing feeling when she said yes,’ he recalls.
Vincenzo dreams of being a public speaker, advocating for people with Down syndrome. When it comes to the topic of termination on the basis of Down syndrome, he doesn’t mince words: ‘I think it is cruel. People
should consider the rights of people with Down syndrome. We have rights —human rights!’
He adds, more reflectively, ‘It makes me feel bad and I feel very uncomfortable and very sad to hear that parents choose not to have babies with Down syndrome. I think people should let people be who they are, they shouldn’t judge people or try to modify people.’
Vincenzo doesn’t see himself as a person with a disability. ‘I am proud to have Down syndrome,’ he says. But adds, ‘Some people do [see it as a disability]. Some people bully me.’
In the Western medical and economic model, there is an unspoken preference for people who contribute financially to society. This is often referred to as ‘ableism’ in the disability sector. According to Mike, this was formative in the genesis of prenatal screening, first introduced to New Zealand in 1968. ‘A lot of it was driven by economics, the cost of social care for people with disabilities, and the idea that people needed to be working and paying taxes in a functional, utilitarian way,’ he says.
Ministry of Health policy states that ‘health practitioners must respect and support any decision made by women throughout the screening process’. But disability advocates argue that there is an inherent bias in the system.
If a woman is diagnosed with a Down syndrome pregnancy, it is mandatory for her to see an obstetrician who will inform her of the risks. But there is no mandate for her to connect with a support group. ‘Ninety-five per cent of what it is like to live with the condition can only be communicated by other people who have lived with the experience. If you’re not mandating any social support, how is that women are ever going to be fully informed before making the decision?’ asks Mike.
This means that for many women, the decision on whether to terminate is driven by fear and frightening statistics. It’s widely acknowledged within the Down syndrome community that many parents have felt pressured into terminations, and Saving Downs is currently gathering testimonials to present to the Ministry of Health.
Zandra Vaccarino—Vincenzo’s mother and national executive officer of the New Zealand Down Syndrome Association—agrees with Mike’s concerns. ‘We are extremely concerned by the prenatal experiences parents are sharing with us, as it indicates that screening is presented in ways that discriminate against people with Down syndrome.’
The medical profession currently finds itself in a situation where it can save the life of one child, while terminating the life of another. Kim Porthouse, a midwife who is also the mother of a child with Down syndrome, has experienced this up close. ‘I’ve seen women who are 23 weeks pregnant terminating a baby with a diagnosis of Down syndrome. At the same time, if someone miscarries at 23 weeks, we’ll do everything we can to save the baby.’ The official age of viability in New Zealand is 20 weeks.
The end game of ‘ableism’ is ‘eugenics’—a belief that humanity benefits by improving the genetic quality of the human population. We don’t need to look too far in our past to see that a eugenic view has grave consequences. Eugenics was one of the ideas at the heart of the Holocaust, which saw the attempted eradication of the disabled, along with Jews, Roma (‘Gypsies’) and homosexuals.
We currently stand at the crossroads of history. On the one hand, we have learnt its lessons—we are more inclusive and accepting of people in all areas of life. Those living with Down syndrome have better life outcomes than ever before. In the 1980s, life expectancy was only 25, but with increased support, community inclusion and participation in mainstream education, life expectancy today is about 60.
Yet, selective termination for Down syndrome and other disabilities is modern eugenics in practice. In our culture, terminating a pregnancy based on gender or race is considered abhorrent—and rightly so. But ‘that in itself is a bias,’ explains Mike. ‘If you don’t terminate for gender, but do for Down syndrome, it is discrimination. It reinforces the view that certain types of lives are more important than others.’
Screening for autism is currently being developed. Will we begin screening out autism, just as we are beginning to understand it? This is the big black hole of genetic selection. In the future, will we screen out blindness and deafness? Unwanted facial features? An obesity gene? Will we live in a dystopian reality when only so-called ‘perfect’ human beings get to survive? This may seem alarmist, but we must develop a robust ethical framework to match the rapidly developing science.
And for people with Down syndrome, being screened out of existence is not alarmist, it is happening.
The worldview of Abrahamic faith communities offers a hopeful alternative. Since the foundational belief of Christianity, Judaism and Islam is that humans are made in the image of God, these faiths give humanity an intrinsic value. Not every person can contribute equally, but every person is equally valued.
When I ask Mike what value people with Down syndrome contribute to society, he challenges the belief behind the question. ‘My worldview is that people are valuable for who they are, so the question of what value they bring to the world doesn’t seem like a legitimate question. You don’t have to defend who you are. Everyone has their strengths and challenges.’
But it is Vincenzo who answers the question best. ‘I don’t understand. What do you mean?’ he asks. What value another human life has is not a question we have the right to ask.
by Ingrid Barratt (c) 'War Cry' magazine, 17 June 2017, pp7-9
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Our Vision: People with Down syndrome are valued and equal members of their community, fulfilling their goals.
Our Mission: To work alongside families, whānau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities.
Our Essence: Accept, understand, connect.