European experts debate implications of new technologies for pre-natal testing
Medical, legal and social science experts from across Europe have emphasised the need to consider the practical and ethical implications of a new form of prenatal screening for genetic conditions.
Non-Invasive Prenatal Testing (NIPT) will soon be extended from the detection of chromosomal disorders such as Down’s syndrome.
At a colloquium organized by the University’s Centre for Bionetworking on Monday (16 June), experts explored the ways in which this new technology affects existing practices of foetal screening and diagnosis in Europe.
Despite the considerable benefits of NIPT, the experts emphasised the need to consider its emerging practical and ethical implications.
Disability groups have voiced concerns that increased use of screening for genetic conditions may lead to higher abortion rates for pregnancies that test positive for chromosomal disorders, ultimately furthering discrimination against people living with disabilities.
As the physician and ethicist Dr Dagmar Schmitz pointed out, “It is expected that with the wide availability of NIPT certain disabilities would completely disappear.”
A further issue of debate was the extent to which NIPT should be made available to all pregnant women, rather than those considered ‘high risk’. This, it was argued, could lead to an over-biomedicalisation of pregnancy.
Dr Susan Kelly, a medical anthropologist from the University of Exeter working on NIPT in the USA, argued: “People say NIPT doesn’t raise any new issues – I think it does. It entails an intensification of prenatal screening for pregnant women.”
Different regulatory frameworks across the European Union present a further challenge to efforts aimed at ensuring that these technologies are not misused.
Martina Cornel, Professor of Community Genetics and Public Health Genomics at VU University Medical Centre in Amsterdam, pointed out that in the past many women from the Netherlands went to Belgium, where NIPT is regulated in a permissive way and offered commercially.
According to legal expert Aart Hendriks, Professor of Health Law at Leiden University in the Netherlands, “The informed consent procedures of these companies are often inadequate, to say it mildly.”
Professor Margaret Sleeboom-Faulkner, Director of the Centre for Bionetworking, reflected on the need for further discussions on the topic, both within Europe as well as on a more global level.
She said: “Factors raised by the introduction of these new technologies entail a new configuration of decision-making, responsibilities and financial implications, which call for a rethink of the organization of prenatal examinations.”
Given the urgent need for further debate on these issues, the Centre for Bionetworking is preparing a second event scheduled for next year, which will bring together experts from across the European Union as well as Asia and North America.