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How does one deal with privacy in research?
Hi. Hi. Oh, it’s good to find you. All right. So Agata, here, works with our Open Science group in our library. And we’re going to talk about privacy, which is super important, because we’re doing human subjects research. But first, let’s take a step back, what’s privacy? Well privacy is protecting the personal information of human subjects. Every living person, me or you, we have– there are certain types of information about us that can lead to identify us as people. So for example my name, or where I live, or how I look. All that is personal information about me, that can identify me.
So we want to protect the privacy of our research subjects by protecting all the personal information about them that we might collect. That makes sense. So just like we talked about with our data lifecycle before, we have personal information in that. OK, but what are their words other than personal information are important to understand, when you’re talking about privacy? So personal information is definitely this most critical term, in all privacy issues in research. So personal information, as I said is, any bit of information that can lead to identifying you as a person. But also there are different types of personal information. So there is general personal information, like for example, my name or my address.
But there are also these special types of personal information, that might be sensitive information about me. Like for example, information about my health conditions, or biometric information, like my fingerprint for example. So this sensitive information– that may require us to be extra careful when processing it, as opposed to just general personal information. OK so general personal information, would be say, my face in a video– For example. –in one of our data sets. And then if something is sensitive, it might be anything captured from a sensor about my heart rate or– anything that maybe is a little unique in a survey. Right so anything that can reveal any particular information about, for example your health, but also other types of information.
For example, here in the European Union we consider also your ethnicity, or your racial or political views, for example, or religious views, as sensitive information. Or your sexual orientation can be also sensitive information. So there are different bits of information about you that can be considered sensitive, and in the special category. OK so this is really a safety issue. Yes. And then how, as a researcher, do I make sure that my research subjects feel safe and understood when I’m doing research? Right that’s so important. So our legal basis for processing– collecting and processing personal information from our research subjects is consent. So we collect consent from our research subjects.
And this consent needs to be voluntary, so we cannot force them to do anything. And it needs to be informed, so they need to know what they’re signing up for. They need to get sufficient information about the research project, that they will be participating in. And most importantly, we need to have documented consent. So we need to have proof that our research subject consented to participating in this research. So it’s not enough to just ask them, hey, do you want to participate in this research. And they will say, yeah sure, but we don’t have it on the record. They need to sign a formal consent form, and document where they’re saying, I agree to participate in this research.
Or we need to have, for example, a video recording of them saying it, so that we have a documented consent. That sounds a lot like the terms I used on my phone, right? Yeah. That makes sense. Of course, so some data protection regulations apply of course, to not only to research, but also to other areas where– of life, and of digital life right now, where we collect data. Absolutely. All right so I need to make sure I know what kind of information I’m collecting– Right. –and then I need to make sure I inform people that are coming, and then I need to make sure I get consent in the right way. How do I get help with this whole process?
Right so it might all sound a little bit daunting. And sometimes it also sounds scary to hear about things like, oh privacy, oh we need to be careful, oh data protection. All these things of course, as a researcher or a student, maybe you don’t have full knowledge about all these regulations around that. So sometimes I would suggest to you, first of all go to either your direct advisor or the person that is leading the project that you’re working on, where you’re collecting data. But there is also other help for example. I work in the open research group here at the university library.
And we have a whole team of research data experts that can help with answering questions about– am I following the right procedures here? Is my consent form correct for collecting this particular type of data? But we also work together with lawyers that help us when very particular legal issues arise around collecting personal information from the research subject. So we can also get advice from them on that. OK so just like how I’m planning everything else, crafting my research questions and my project, I should plan in a lot of time in advance. We’re doing research because I might have to go and ask questions to different legal entities, or make sure I have all of this set.
Right and also remember that, of course if you do not collect any particular types of personal data or any particular very sensitive personal data, then you will probably not have to consult with– for example legal entities or lawyers. But of course, preparing the format of the consent forms, preparing all the information that you will give to your research subject for collecting that data, does take time. And you need to prepare for that. And then lastly, remember that if you actually do not collect any personal information, then you don’t really need to worry about all that. And sometimes there are projects where we do not really collect– we collect all the data completely anonymously.
And then we don’t need to worry about all the privacy and data protection issues. And then finally, if you do collect personal data, you can always anonymize the data. Once it’s collected, and you want to work with the data in a safe way, you can just remove all the personal information from your data, and then work on anonymous data. Wow, that’s a lot to consider. But it sounds like there’s help available– Absolutely. –and every project is unique. But this is something we should definitely think about in our project planning phase. Yes. All right, thank you for your help. Of course, no problem. See you later. Bye, thank you.

How does one deal with privacy in research?

Kayla meets up with Agata Bochynska from the University Library to discuss what one needs to think about when performing research on humans.

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