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A future without Down syndrome? Ethical reflections on the development of technology

Have you used prenatal testing to determine if the fetus you or your partner is carrying has Down’s syndrome? If the answer is yes, you are not alone. The interest in genetic screening for Down’s syndrome is high. Historically, however, many have decided not to take the test since it has brought risk to both mother and fetus. This might now be about to change.

A new test has been developed, called NIPT (non-invasive prenatal diagnosis), which only requires a blood sample from the mother to determine whether the fetus has Down’s syndrome. On top of that the test has 99 per cent accuracy, which is significantly higher than the previous tests. New technologies in healthcare are usually welcome, but the emergence of NIPT has again raised questions about the ethical dilemmas that developments in genetic screening bring.

Since Iceland adopted the use of NIPT, not a single child has been born with Down’s syndrome, since the fetuses diagnosed have all been aborted. What does this mean for people who already live with Down’s syndrome? And what does it mean for the parents who choose to keep a fetus despite the diagnosis? These questions are raised by Julia Mosquera, researcher in practical philosophy here at the institute, in a blog post for Justice Everywhere.

One of the risks that Julia Mosquera identifies with NIPT is the effect of increased abortions when the fetus tests positive for Down’s syndrome. Already, many people decide to terminate pregnancies when prenatal tests indicate Down’s syndrome, but there is also a large group who chooses not to carry out genetic screening because of the associated risks. A safer and less invasive screening, such as NIPT, may entail an increased number of genetic screenings and thus an increasing number of abortions. In time, this may also affect those who choose to carry out the pregnancy, after having tested positive for Down’s syndrome.

Mosquera means that increased testing may lead to social stigmatization of parents choosing to keep children with Down’s Syndrome. Will the choice to keep a child with Down’s syndrome be synonymous with increased social costs and thus a risk to be seen as an expression of “expensive tastes”? And what are society’s moral obligations towards people with Down’s syndrome if they are to become a diminishing group in society? By raising these questions Mosquera highlights the ethical dilemmas, but also the nuances required in the philosophical debate around genetic screening.

Read the full blog post below: The future of disabilities: Will prenatal testing transform bad brute luck into a case of expensive tastes?