Privacy & Big Data

Index

Privacy Nowadays

Nowadays, there is a lot of discussion about privacy. Everywhere I go in public spaces, I’m being filmed for security reasons. When I buy something, the transaction is recorded by my bank because I use my bank card, and it’s also registered by the shop where I make the purchase. These are just a few examples. Is this a good thing?

Privacy & Safety

I appreciate that it’s safer to visit a bank nowadays, but I wouldn’t want the kind of penalties that seem to exist in China for being filmed walking through a red light. According to the news, crossing on red can affect your credit score there. This could mean not being able to buy a home, go on vacation, study, and so on.

Privacy & Research

Most research being conducted today is marketing research. Not all of it asks for consent before collecting data. Depending on the type of research, this can create serious privacy concerns. Just think of scandals involving companies like Google, Facebook, and Cambridge Analytica.

Privacy & Ethical Research

In research with ethical concerns, such as medical studies, participants are required to complete an informed consent form. In this informed consent, I can find:

• What the research is about ? A clear description of the study’s purpose.

• How the ethics committee evaluated the research: Including risks, benefits, and approval status.

• Which data will be collected from me and how? Details about procedures, measurements, and data sources.

• What will happen to the data collected from me? How it will be stored, analyzed, and used.

• How long my data will be stored: Including retention periods and deletion policies.

• Which roles or functions will handle my data (not always included).

• How my privacy is protected and my data anonymized during the research process.

• How and when I am expected to participate: Including schedules and instructions.

• How I can withdraw from the study at any time.

• Whether I will be compensated for participating, and if so, how much.

• A section where I sign the informed consent to confirm my participation.

• Access to the study results, sometimes even my own individual results.

• How the results will be shared (not always specified).

Privacy & Big Data

Big Data researchers often use data that is already available within an organization or combine data from previous studies. These data sets were originally collected for other purposes, sometimes as by‑products of earlier research. In most cases, those earlier studies included informed consent from participants, but that consent usually does not cover future or unrelated research. Sometimes additional studies are carried out using the same data to enrich the original research question. This can lead to valuable outcomes, such as discovering a new medicine or solving a cold case. But it also raises important ethical questions: Is it necessary to ask participants again for permission to use their data? And is it even possible to contact them, considering the data is supposed to be anonymized?

Privacy & Ethics

If data no longer contains personal information, then why shouldn’t it be used for the greater good? But if it does contain personal data, who is responsible for ensuring proper anonymization and checking whether its use is ethical? Should the participant be asked for permission again? Doing so could be extremely costly and might result in losing large amounts of data, because not all participants can be reached or would give consent. It could also take a great deal of time, something companies and researchers often lack. A more realistic option is to ask the gatekeepers of the research whether the study can be expanded. These gatekeepers include:

• The ethics committee

• The data manager

• The project or organizational manager

Almost never the researcher, because the researcher cannot be fully impartial.

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