The Health Council recommends starting a pilot in which couples who wish to have children can be tested for hereditary diseases at government expense before a pregnancy occurs. But the question is how much should you invest to prevent a handful of seriously ill children? Bram Hahn wonders.
There are all kinds of ways to test before the birth of a child whether it will be born healthy. Some tests are done during pregnancy, such as NIPT, which can be used to determine with a high probability whether the fetus will be born with Down syndrome.
But there are also tests with which couples who want to have children can have it tested before conception whether either of their children will be affected by a hereditary condition. The potential parents may unknowingly be carriers of a genetic abnormality that does not bother them. But the combination of their DNA can lead to their offspring being born with a hereditary condition. The chance of being a ‘carrier couple’ is 1 percent, and with each pregnancy such a couple has a 25 percent chance that their child will have a hereditary condition. This can lead to serious consequences, suffering and a process of drastic, stressful and very expensive medical interventions and medications.
Testing prior to pregnancy is already possible for 650 euros per person
This type of test has been available for years for prospective parents who are known to belong to a risk group, such as sickle cell disease. In those cases, the screening is already offered and reimbursed by the health insurer. Anyone who wants to be tested without such an indication now pays 650 to 950 euros per person.
The Health Council now recommends starting a pilot in practice, in which all couples who wish to have children are offered and reimbursed for the test by the government. By the way, brought the Health Council issued an almost identical advice in 2007which was not followed by the then Minister of Health (Ab Klink, CDA).
It is still quite a job to set up this test process. The testing itself is not that complicated, but how do you reach potential parents before they even enter the prenatal care circuit? Moreover, these are large numbers. Approximately 165,000 children are born in the Netherlands every year. So you have to approach, inform and test many tens of thousands of potential parents.
Further management of pregnancy is possible, but should it?
What sometimes fades into the background with such new options in healthcare is the question of whether the costs outweigh the benefits. Of course, you wouldn’t wish cystic fibrosis on any child, but the bigger picture remains important. Clinical geneticist Phillis Lakeman at the Amsterdam UMC said on NPO Radio1 that approximately 1 in 600 pregnancies results in a child with a serious hereditary condition. That would mean a total of approximately 275 children. That’s not nothing, but it does put things into perspective.
An important question that must be answered in a possible pilot is therefore: should we burden an already burdened healthcare system with yet another new task and should the costs end up with the taxpayer?
2023-11-16 16:09:54
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