Screening for health risks is good, right? If we know early what is going on, we can prevent later misery. It is not so black and white, says health communication scientist Bob Mulder (Social Sciences), among others, in a review. ‘Make a good decision before you start screening, because there are certainly disadvantages.’
‘Screening for health risks has both positive and negative consequences at multiple social levels and for multiple target groups,’ says Mulder. ‘That is why you actually have to assess the quality and value of the outcome in advance. Knowing more is not always pleasant. You don’t always get anything out of it.’
What is healthy?
We like to think in extremes: illness is wrong, health is good, Mulder explains. ‘But it is sometimes not clear what exactly is sick or healthy, because health is a social construct; we give meaning to this term ourselves. It’s a sliding scale. We determine together what we consider an acceptable level of complaints – everything below that is healthy, above that is sick.’
Of course, in some cases it is very clear: a heart attack, late-stage cancer, then you are ill. ‘But suppose you have a biomarker that is predictive of high blood pressure, or a genetic predisposition to a certain condition, things that we cannot screen for very long. What do you call that phase?’ Previously we were not aware of those intermediate phases because we did not have the knowledge. ‘Our view of illness and health, what we consider normal, is changing due to medical technology, which also includes screening methods.’
Risk of risk testing
In the review, of which PhD student Sammie Jansen (RIVM and WUR Philosophy department) is the first author, the scientists discuss eight themes that do not focus on one disease, but on health tests in general. In addition to the obvious privacy risks of health testing – because the more we measure, the more data we collect and store, with all the associated risks – there are also technical limitations to testing. Mulder: ‘Consider false-positive or false-negative results that influence treatment options. With a false positive, treatment does more harm than good. And in the case of a false negative, actually, by not treating it.’
By normalizing testing you get questions like: ‘Didn’t you take a test? You could have had it aborted, right?’
Bob Mulder
Screening also has an impact on an emotional level, Mulder says. ‘People who have themselves tested are uncertain or experience tension or fear about the course of the disease. In early stages of cancer, the body can sometimes clear the malignant cells itself. If you then measure indicators of disease, all alarm bells go off, even though that is not always necessary. It immediately creates unrest and worry, also for someone’s loved ones.’
Screening also has an impact on, for example, family and friends of the testers. ‘Because they live in the same neighborhood, grew up in the same family or even share the same genes, the outcome also has meaning for them. This can sometimes lead to tensions within families: some people may consciously choose not to be tested. If a brother or sister does get tested, can you talk about that at birthday parties?’
Infringement on autonomy
‘By making health screening available but not mandatory, you make it normative, something that comes with it. By doing so you interfere with people’s responsibility and autonomy.’ A good example of this is the NIPT, says Mulder. This prenatal test can help you find out during pregnancy whether your child has Down syndrome, for example. ‘Sometimes parents of children with disabilities are asked: ‘Haven’t you taken a test? You could have had it aborted, right?”
‘We want to use this knowledge to make policymakers and, for example, doctors who develop screening methods think about it,’ says Mulder. ‘Know that technologies also have a soft impact, that their introduction changes the meaning of things. We like to measure the hard impact of disease and health, such as survival rates after a number of years with a certain treatment. We must be aware of the soft impact that people are viewed differently if they decide not to have a NIPT while it is offered.’
