GESTIÓN EN SALUD PÚBLICA: BioEdge: The billion-dollar industry of prenatal testing

domingo, 12 de mayo de 2019

BioEdge: The billion-dollar industry of prenatal testing – not all choices considered equal?

BioEdge: The billion-dollar industry of prenatal testing – not all choices considered equal?

Bioedge

The billion-dollar industry of prenatal testing – not all choices considered equal?

by Nic Zumaran | 12 May 2019 |

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Following the release of the Nuffield Council’s report on non-invasive prenatal testing (NIPT) in 2017, Colette Lloyd, writing in CMF Blogs considers four ethical key issues that are yet to be addressed.

Firstly, there is no care pathway for women following a high chance or positive result from testing. The Nuffield report suggested Royal College of Obstetricians and Gynaecologists (RCOG) change guidelines entitled Termination of Pregnancy for Fetal Abnormality, published in 2010, to reflect continuation of pregnancy guidelines.

Secondly, there is confusion around what NIPT can do. NIPT is essentially a screening test, not a diagnostic test, and thus NIPT tests the likelihood of a positive result. In some populations NIPT may predict with 99% accuracy the likelihood of a baby with Down Syndrome. But in terms of the chances of positive predictive values being correct, variance begins at 46% depending on age and combined screening results. The difference between diagnostic and screening tests can be misunderstood by manufacturers, midwives, consultants and the media alike.

Thirdly, advertising in relation to NIPT by private companies is not sufficiently regulated. Whilst inspections by the government’s Care Quality Commission are undertaken, misleading information is still being given.

Finally, genetic counsellors remain few and far between and Antenatal Results and Choices (ARC), the body set up as a support and hotline for women, are orientated towards informing women about the difficulties of continuing pregnancy without also offering support through the decision to give birth.

According to Lloyd, the current landscape of NIPT makes it difficult for women to make informed choices about pregnancy.

Nic Zumaran writes from Sydney.

In our lead story today we focus on an apparent, and surprising, rift over euthanasia in Belgium. On the one hand the medical association recently issued guidelines which tell doctors to be more cautious about granting euthanasia for psychiatric reasons. On the other, the country’s leading right-to-die association is campaigning vigorously to grant euthanasia to patients with dementia. Apparently, even supporters of the country’s euthanasia law differ on the wisdom of making a liberal law even more liberal.

My feeling, however, for what it's worth, is that Belgium will keep relaxing its 2002 law until it becomes effectively euthanasia on demand. Doctors will become mere suicide enablers.

There may be one way to stop this process, or at least to slow it down. And that is to fire the chairman of the Federal Euthanasia Commission, Dr Wim Distelmans. This gentleman is not only the senior regulator of euthanasia in Belgium. He is also a media star as the chief spokesman for the right to die and one of the main practitioners of euthanasia. In other countries, this would be regarded as an egregious conflict of interest.

A new chairman who is not immersed in the world of Belgian euthanasia politics would be in a better position to identify abuses and refer doctors who fail to comply with the law to the public prosecutor.