Data about human beings are very rarely anonymous. Even if the data do not contain information such as name or address, the data may still pose privacy risks to the people they are about, especially if it is possible to re-identify individuals within the data you are using for your research. To manage these risks, it is important to understand how severe the risks are in your situation. The table below can be used to determine privacy risk categories for different types of data, however, it’s recommended to now use the privacy risk app (which is based on the table below) because the app offers advice that is specific to your needs.
Privacy risks are based on three pillars: the vulnerability of the research subjects, the re-identifiability of the data and the risk of harm to the research subjects that is posed by the information in the data. The guidance on this page, nor on the privacy risk app, cannot capture every possible situation, so think of this advice as a spectrum. If in doubt, opt for a higher risk category. Also, not all of the data in your research will have the same level of privacy risk and the privacy risks for each type of data may change as you clean, recode and modify the data from a raw to processed form. You should assess the risks for each separate data asset and also consider how each data asset’s risk will change over the course of the research life cycle. If some data are higher risk than others, you can store these data separately in a more secure storage option.
Once you’ve determined the privacy risk category for each data asset, you can use these categories to inform your choices about how your data can be de-identified, safely used by students/interns, safely transported physically, securely transferred digitally, and securely stored.
| Privacy Risk | Very high-risk |
| Description | • Directly identifying data from vulnerable people containing information that elevate the risks of harm |
| Impact of a Breach | • Severity of harm to research subjects and/or damage to the
reputation of VU Amsterdam would be very high • The likelihood of harm or damages after a breach is very high |
| Example | • Video interviews with children talking about abuse |
| Privacy Risk | High-risk |
| Description | • Directly identifying data from non-vulnerable people containing information
that does NOT elevate the risks of harm OR • Directly identifying data from vulnerable people containing information that does NOT elevate the risks of harm OR • Directly identifying data from non-vulnerable people containing information that elevate the risks of harm OR • Data from vulnerable people containing information that elevate the risks of harm that has been made slightly less identifiable by removing easily identifying information (e.g. name, contact information) |
| Impact of a Breach | • Severity of harm to research subjects and/or damage to the
reputation of VU Amsterdam would be high • The likelihood of harm or damages after a breach is moderate to high |
| Example | • Key files containing names and contact information of healthy adults |
| Privacy Risk | Medium to high risk |
| Description | • Data from non-vulnerable people
containing information that does NOT elevate the risks
of harm that been made slightly less
identifiable by removing easily identifying information (e.g. name,
contact information) OR • Data from vulnerable people and/or containing information that does NOT elevate the risks of harm that has undergone additional de-identification steps beyond the removal of easily identifying information (e.g. name, contact information) |
| Impact of a Breach | • Severity of harm to research subjects and/or damage to the
reputation of VU Amsterdam would be moderate to high • The likelihood of harms or damages after a breach is moderate to low |
| Example | • IP- and MAC-addresses of healthy adults |
| Privacy Risk | Medium to low risk |
| Description | • Data from non-vulnerable people containing information that does NOT elevate the risks of harm that has undergone additional de-identification steps beyond the removal of easily identifying information (e.g. name, contact information) |
| Impact of a Breach | • Severity and likelihood of harm to research subjects after a
breach are low • Damage to the reputation of VU Amsterdam is still possible, but likelihood is lower and the impact would be less severe |
| Example | • Highly variable physical measurements (e.g. blood pressure, heart rate, blood glucose, body temperature) from healthy adults |
| Privacy Risk | Little to no risk |
| Description | • Data that cannot be re-identified whatsoever, regardless of the vulnerability of the research subjects or the risks of harm posed by the information |
| Impact of a Breach | • Research subjects will suffer no direct** harm and VU Amsterdam will suffer no damages to its reputation |
| Examples | • Likert scale responses from healthy adults in a questionnaire
about benign topics NB: If your data can still be linked to identifying information (e.g. through participant identifiers that link to a separate key file), the data are not anonymous and therefore not “blue”. Such data would be “green” or “yellow” depending on the sensitivity of the information and vulnerability of the research subjects. If it is possible and appropriate to delete this last link to the identifying information, then the data can be considered anonymous. |
Confidentiality and privacy overlap, however, confidentiality is about how a data breach would impact our institution while privacy considers how a data breach would impact our research subjects. Confidentiality concerns have been taken into consideration in the guidance above so that the privacy risks you determine can also be viewed as confidentiality risks.
If your data are not about human subjects, they may still need to be kept confidential, for example, when working with business secrets or intellectual property. If you are working with a third party, especially a business, they may require you to keep their data confidential. Below are some examples of different confidentiality risks for non-human data:
| Red Data | Orange Data | Yellow Data | Blue Data* | |
|---|---|---|---|---|
| Confidentiality Risk | Very high-risk | High-risk | Medium-risk | Low-risk |
| Examples | • Data that are classified as “secret” | • Commercially sensitive data • Politically sensitive data • Data subject to non-disclosure agreements |
• Patents & other intellectual property • AI algorithms that could benefit other countries • Unpublished research output with novel results • Internal procedures and policies |
• Data that can be publicly disclosed |
Data are personal data if they are directly identifying or indirectly identifiable:
As long as data are identifiable, they cannot be referred to as anonymous data and the legal rules of the GDPR must be followed. This means the GDPR applies to pseudonymous data.
Not all identifiable data pose the same level of privacy risk: oftentimes, raw data often pose higher privacy risks because of greater re-identifiability (e.g. video recordings), and therefore require additional data protection measures (such as high security storage); as the data are cleaned, recoded and analysed they become less identifiable (e.g. coded interactions) and require fewer data protection measures. De-identification is therefore an important part of data processing that can be used to protect the privacy of your research participants; the identifiability of the data is the only factor you can change since it’s not possible to reduce the vulnerability of your research subjects or the sensitivity of your research topic.
Vulnerable research subjects have an additional risk of harm (socially, physically, emotionally, financially) if their personal information is made public. The greater the vulnerability of the research subjects, the greater the potential for serious harm.
Vulnerable research subjects include, but are not limited to:
When assessing the vulnerability of the research subjects, bear in mind that we are looking at what vulnerability characteristics are known or disclosed within the data. If you are not actively studying a specific vulnerable population and you do not need to collect data that could identify someone as vulnerable, then that information should not be collected in order to minimize the risks to the research subjects. For example, if you do not need to know the ethnicity or sexuality of your research subjects, you should not collect that information within your research data. That way you can minimize the overall privacy risks by minimizing the vulnerabilities of the research subjects studied. However, there may be situations where collection of this information is unavoidable, e.g. video recordings of research subjects will also collect skin colour and any religious clothing. Keep such cases in the back of your mind when assessing the overall privacy risks; even if you are not actively studying a vulnerable population, consider whether you will collect data that could identify someone as part of a vulnerable population when you are assessing the risks of harm to the research subject.
The risk of harm in these cases will often depend on the vulnerability characteristics of the research subjects, for example, employment status of the average Dutch person is someone sensitive, but does not pose an elevated risk, while employment status of an asylum seeker could have political ramifications for the research subject in question and may risk their safety and well-being.
The legal definition of pseudonymization according to the GDPR is quite strict. Essentially, according to the GDPR, pseudonymous data requires additional information for the data to be re-identified and if that additional information is deleted, the data become anonymous. In real life, the situation is more complicated. A dataset with no directly identifying data may still contain indirectly identifiable data (often demographic information) that can be used to single out unique records, which could then be used to re-identify people using publicly available information or based on context clues. You could de-identify this dataset further and, if done correctly, you would ensure that the only way to re-identify the research subjects would be with an identification code and a key file. Both the former and latter versions of this dataset would be called “pseudonymized” by a layperson, but under the GDPR only the latter version is legally considered to be pseudonymized. The main takeaway from this is that even if someone says their data are pseudonymous, you should investigate to what extent the data have been pseudonymized: do they mean the GDPR’s strict definition of pseudonymized or do they simply mean that the directly identifying data have been removed from the dataset?↩︎