Use of Existing Health Data in Epidemiologic Research–Issues of Informed Consent Under Normal Circumstances and at a Time of Health Crises
2020
In epidemiologic research we study why we get sick and how we get better. To do this we frequently need
large datasets on exposure, diagnoses, treatment and more. We need data often classified as sensitive and
regulated by law stating a need for informed consent. We argue that modern epidemiologic research often
can be done on existing data without having informed consent and without violating basic ethic principles.
We also argue for a timely and fair access to data in approved project. Modern encryption technics and
methods of data analyses can reduce the risk of disclosure of personal data to a level close to what we have
for anonymous data. If we allow open use of administrative health data and existing research data, we will
be able to produce much more information to advance disease prevention, health promotion and treatment.
Epidemiologists should collaborate more with computer scientists and patient groups in
developing/implementing principles for ‘modern methods of data analyses’. Under a severe health crisis
data are in high demand to provide the information needed to prevent deaths and diseases and often time
does not permit requiring ‘informed consent’. Such a situation in now plying out worldwide under the
Covid-19 pandemic.
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