March 1, 2017

expert reaction to a new report by the Nuffield Council on Bioethics on non-invasive prenatal testing (NIPT)

The Nuffield Council on Bioethics has published a new report, Non-invasive prenatal testing: ethical issues.

Prof. Julian Savulescu, Professor of Practical Ethics, University of Oxford, said:

“The lines the Nuffield Council draw are examples of paternalism or social engineering. They wish to decide what information pregnant women are fit to receive or on the appropriate constitution of future society.

“In my view, women have a right to make decisions about continuing pregnancy and that choice should be informed, including informed about the features of the fetus they carry. The Nuffield Council tries to draw a line between minor and major medical conditions. There is no good reason to distinguish between disease and other potential disadvantages – these exist on a spectrum. It is an example of discrimination against the disabled to single out some conditions as fit candidates for termination, rather than leaving it to women, or couples, to decide based on their own circumstances and the pregnancy they carry.

“Non-invasive prenatal testing promises to provide earlier, less risky tests that provide vital information to women deliberating about whether to continue a pregnancy. They have a right to that information.

“There are important issues around what a public health service should fund and what support should be given to people living with disabilities but these should not cause us to keep people in ignorance and deny them information critical to making one of the most important decisions of their life. There are good reasons to fund adequate counselling but not put a moratorium on whole genome sequencing or other genetic testing in prenatal testing.”

Alastair Kent, Director, Genetic Alliance UK, said:

“We welcome the endorsement of non-invasive prenatal testing as a screening tool for Down’s, Edwards’ and Patau’s syndromes.

“However, the central theme of this report appears to be that access to this new, non-invasive technique should be limited, despite the broader availability of more invasive testing later in pregnancy. This would reduce and delay access to information which could inform reproductive choice. We are surprised that the report could reach such a conclusion.

“Restricted access to non-invasive testing will mean that women with valid concerns for their pregnancy may be forced to use invasive techniques. If they then receive the news that their pregnancy is affected by a genetic condition and choose to terminate, that termination will happen later, and be a more invasive procedure. If they receive an all-clear, they will have risked a miscarriage needlessly.

“We are frustrated to see this report recommend restricting access to non-invasive prenatal diagnosis for adult onset conditions. The proposed restriction to neo-natal and childhood onset conditions excludes conditions such as early onset dementia and neuromuscular disorders, which can be extremely serious and can cause enormous amounts of pain to families. We believe the selection and use of reproductive choice tools and techniques should be a matter for women and/or couples to decide upon with their healthcare practitioner based on non-directive information.

“Different families have different experiences with genetic conditions. Some are more or less able to cope with children affected by a genetic condition, and there is a broad spectrum of attitudes towards the range of reproductive choice techniques that are now possible. Our view is that both non-invasive prenatal diagnosis and screening using the technique add valuably to the portfolio of choice available to women, who may be facing a difficult decision.

“We note that the working group’s recommendations and discussion cover both non-invasive diagnosis (NIPD) and non-invasive prenatal testing (NIPT). These are different uses of the same technology that are usually discussed with these different labels. NIPD describes diagnostic testing that is used when families have a known risk of specific single gene disorder. NIPT is the use of the same technology as a screening tool for use in women at higher risks of certain conditions. The terms of reference for this review were clearly focused on just NIPT. This overlapping terminology allows the report to make an overarching recommendation against the use of NIPT for adult onset conditions, while acknowledging (Paragraph 6.14) that it could be acceptable for families with a family history of an adult onset condition. This is already happening in the UK, and we believe this is the only context this type of testing would be likely to be used, for the medium term at least.

“We are surprised and disappointed that an organisation such as Nuffield Council of Bioethics which is normally so careful to ensure accuracy could have been so careless in using a single term to describe two very different applications of this technology.

“We welcome the development of NIPT and NIPD as additional reproductive choice options, just as we welcome any reproductive choice technique or diagnostic tool which gives women more control over the impact of genetic conditions on their family.”

* The report ‘Non-invasive prenatal testing: ethical issues’ by the Nuffield Council on Bioethics published on Wednesday 1^st March.

Declared interests

Alastair Kent: No conflicts of interests

None others received