Risk of re-identification vs the need to identify individuals


There are risks associated with handling personal data in research. Unauthorised re-identification can cause harm. But there are clear benefits in terms of patient safety related to diagnosis and treatment if researchers are able to distinguish between individuals by identification.

De-identification or coding might not be sufficient for protecting the people who donate their samples and data against privacy invasions and breaches of confidentiality. But medical research, and especially rare disease research, needs to be able to identify individual patients to get results. According to a paper in EJHG, it is up to the research community to show they are up to the task of managing these risks and deserve the trust of the people whose data they are using.

The authors suggest open and transparent information and consent processes and using safe and unique personal identifiers, for example the GUID or HD. Mats G. Hansson is one of the authors. He says that researchers need to be careful not to promise too much when they describe data protection. He believes we need high professional standards and that researchers need training in research ethics, especially in the beginning of their career.

In most cases, using personal data in research produces benefits that far outweigh the risks. The authors suggest that an adequately informed consent contributes to responsible data sharing. But they also claim that broad consent is compatible with ethical access to data, sharing and use. And, they claim, so is no consent: given that the justification is ethical and the use is lawful, and the data processing is up to demonstrably high standards of governance.

But for this to work, there needs to be structures in place. We need ethical, legal and regulatory frameworks that recognise the need for unique identifiers that can handle complex and international data collection and sharing. Research projects also need governance structures that reflect the patient and publics’ perspective. The authors write that to ensure that researchers are aware of societal concerns, it is important to have an ongoing dialogue with patients and the public. That includes communicating what research is, what the risks are, and how people can benefit from the results.  

Read article in EJHG: The risk of re-identification versus the need to identify individuals in rare disease research

Josepine Fernow

Mats G. Hansson
Mats G. Hansson, Professor of Biomedical Ethics and one of the authors

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