“It is possible to reconcile personal data protection and cancer screening”

NOTe all know, some without knowing it, the General Data Protection Regulation (GDPR) because, among other things, it allows us to accept or not cookies on websites. The GDPR also concerns health data, of course, and can have a harmful effect on human health and on a public health program if it is not applied with care. This is currently the case for organized cancer screening.

The facts are as follows. Screening organized in France concerns colorectal cancer, breast cancer and cervical cancer. Organized means that the population to be screened is well targeted and well monitored and that the results are known and the costs under control. It is the Regional Centers for the Coordination of Cancer Screening (CRCDC) which invite the population to be screened and ensure the follow-up of those screened. This follow-up is fundamental because if the screening test is positive, the CRCDC ensures that the person does the consultations and examinations made necessary by this positive test. And if the test is negative, the CRCDC re-invites people to take a new test, usually every two years.

Poorly followed, a person may not do the additional tests or commit to an inappropriate method of continuing screening. The CRCDCs must therefore have the most precise files possible to ensure follow-up and appropriate re-invitation. They have doctors who ensure the quality of the follow-up and who respond to the population to resolve specific cases. They also assess the results of screening (participation rate, number of cancers detected, etc.) and transmit this data to Public Health France.

Deleterious effect of the right to object

For cancers of the cervix and colorectum, the National Cancer Institute (INCa), interpreting an opinion from the National Commission for Informatics and Freedoms (CNIL) and to apply the GDPR, has set up a right to oppose being followed by the CRCDCs. For the moment, in the context of cervical cancer screening, the effect is deleterious: initial feedback shows that more than 80% of women oppose their follow-up. There would only be 10%, it would already be a failure. Dividing participation in organized screening by five – given its low level compared to other European countries – is tantamount to ending it.

“More than 80% of women oppose their follow-up as part of screening for cervical cancer”

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