There is a perception that registration of patients based on ethnicity is not allowed under privacy laws. However, that is not necessarily correct. It is allowed, but under certain conditions.
A patient's origin can be important in researching and treating a condition. In May 2020, NOS reported that among ethnic minorities, more people die from the corona virus.(1) And in October, the head of the ICU department at the VUmc reported on radio program Argos that the majority of corona patients in ICUs appear to have a migrant background.(2)
Ethnicity also plays a role in conditions other than corona. For example, diabetes is more common in people of Hindu descent and Moroccan people are more likely to get thalassemia.
However, in the investigation and treatment of COVID-19, RIVM, hospitals and GGDs do not register by ethnicity. It has even been stated in the media that registration of ethnicity by hospitals is not allowed,(3) including by the head of ICU at LUMC.
Where did this misunderstanding come from? And so what is the rule?
The General Data Protection Regulation (AVG) distinguishes between "ordinary" personal data and "special" personal data.
Special personal data are data that by their nature are extra sensitive These are, for example, personal data revealing racial or ethnic origin, genetic data or data about health. These are subject to a stricter regime than ordinary personal data (such as name or address). There is even a general ban on processing special personal data. However, exceptions to that prohibition are possible.
The AVG contains a number of general exceptions to the ban on processing special personal data. For example, special personal data may be processed if the data subject (the patient) gives their explicit consent. The European AVG further contains a number of specific exceptions that EU member states can elaborate on in their national legislation. In the Netherlands, the AVG provisions on processing for the purpose of assistance and healthcare are included in the AVG Implementation Act (UAVG).
There is a specific exception for personal data revealing racial or ethnic origin. First, these personal data may be processed to identify a person. This is done, for example, with a passport photo in an identity card. In addition, these personal data may be processed to grant persons of a certain minority group a privileged position. An example of this is the processing by schools to receive subsidies to make up educational disadvantages of immigrant students. These exceptions for ethnic data are not relevant to health care providers.
There are five specific grounds for exception to the health data processing prohibition. For health care providers, they may process health data if it is necessary for the proper treatment or care of the patient.
This exception applies only to health data. Nevertheless, there is a possibility under this exception to process other special personal data, such as concerning ethnicity. This is because the prohibition against processing other special personal data does not apply if the processing is necessary in addition to the processing of health data. The processing must be for the purpose of proper treatment or care of the data subject.
Additional special personal data can in some cases be essential in recognizing disease states. They can also sometimes have a direct influence on a treatment plan. Data such as religion or philosophy of life may be important in special cases in certain psychiatric syndromes. Sometimes data about sexual life can also be medically relevant. And race can also be an important determinant in diagnosis. In these cases, in addition to health data, social workers may record other special personal data, despite the processing ban.
The question, then, is whether ethnic registration is necessary for patient treatment. In other words, can the given "race" directly affect the treatment plan? If the registration of ethnicity is not medical in nature, the exception ground does not apply.
Moreover, even when ethnicity is necessary for treatment in special cases, there are concerns. For example, the exception does not apply to use of the registered data for purposes other than the direct treatment of patients. For example, for scientific or statistical research.
For scientific or statistical research, the AVG has another exception. The patient must give prior consent. Consent is not required if it is impossible, or if it takes a disproportionate effort. These conditions are not easily met. In addition, the research must serve a public interest and there must be sufficient safeguards to protect the privacy of the data subject.
Moreover, if the treating physician wishes to share a patient's data with third parties for research purposes, he must have a ground for breaking his medical confidentiality. This rule also applies to research within a hospital by people other than the treating physician.
In the case of corona, it is not known (yet) whether treatment depends on ethnicity. This means that the first exception does not currently apply in corona patients. Thus, in order to conduct the research needed to find out whether ethnicity does indeed play a role, consent will have to be obtained from patients.
(1) https://nos.nl/artikel/2334023-coronavirus-treft-minderheden-nederland-minder-dan-in-andere-westerse-landen.html
(2) https://www.vpro.nl/argos/lees/nieuws/2020/covid-patienten-van-niet-westerse-afkomst-oververtegenwoordigd-op-ics-grote-steden.html
(3) https://www.volkskrant.nl/nieuws-achtergrond/wordt-de-ene-bevolkingsgroep-harder-geraakt-door-corona-dan-de-andere~ba23f6d9/
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