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Information Law
Published in Roger Brownsword, Technology, Governance and Respect for the Law, 2023
Although questions of this kind have been debated for some years, two developments have served to concentrate the mind once again on these matters. One is the spectacular reduction in the cost of sequencing a human genome; and, the other is the development of non-invasive prenatal testing (NIPT)—which is now being piloted within the UK national screening pathway for Down’s syndrome,16 but which might be a precursor to a general programme of newborn screening. Currently, the attraction of the test is that it promises to reduce the need for an invasive amniocentesis test or chorionic villus sampling and, with that, to reduce the number of babies lost during pregnancies.17 However, because NIPT presents an opportunity to provide information about the foetus that goes beyond the trisomies,18 even to the point of full genomic profiling, as well as returning information about the mother,19 it invites questions about how broad the test should be and how far the mother’s right to know (or her right not to know) might extend.20 Even if there is a reluctance to introduce a publicly-funded newborn screening programme that includes whole genome sequencing, the availability of a privately paid for test is likely to open up a host of questions about who has the right to know what and who has the right not to know.21
Public Health England and Co-Production with the Fetal Anomaly Screening Programme
Published in The New Bioethics, 2023
Colette Lloyd, Elizabeth Corcoran, Lynn Murray
In 2012 Cell-free DNA (Cf-DNA) testing, also known as Non-Invasive Prenatal Testing (NIPT), was first introduced in the UK (Royal College of Obstetricians and Gynaecologists 2014). This new technology involves taking a blood sample from a pregnant woman and then analyzing it for placental DNA. In this way, it can be determined if there is a difference in the placental DNA e.g. a different number of chromosomes, which may indicate that the fetus has a disability such as Down syndrome, Edward’s syndrome, or Patau’s syndrome. The following describes the involvement of the Down Syndrome Research Foundation in the process of introducing Cf-DNA screening into the National Screening Pathway.