Multifaceted nature of sensitive data allows for wide range of research - Multifaceted nature of sensitive data allows for wide range of research
Multifaceted nature of sensitive data allows for wide range of research
Human genetic data can be used to develop better drugs, prevent diseases and choose the best treatment, such as for cancer patients. Indeed, sensitive data is a very hot topic right now, because it has been found that it can be used in a variety of ways in different types of research.
Sensitive data is any data that contains personal information, which can be used to directly identify a specific person. Sensitive data includes personal identity numbers, genetic data or spatial data.
CSC Project Director Antti Pursula has been working with sensitive data for the past five years. He first became interested in the subject because it helped with learning new things.
Sensitive data must be stored with extreme care
All people have a right to privacy, so the storage and processing of sensitive data must be thoroughly safeguarded. Sensitive data on people is constantly being collected for use in, among other things, medical or other scientific research. Data is also collected in hospitals and health clinics to be used in treatment and observation, and individuals also voluntarily collect it when using, for example, fitness applications.
In order for a researcher to use sensitive data as research material, permission to use it must first be obtained from its owner and any applicable legislation, such as the requirement to obtain permission from a research ethics committee and/or verify the data subject's consent, must be taken into account. In research, CSC serves as a data processor, i.e. it offers researchers a secure means of processing data.
"Researchers should pay close attention to the terms for using data and act accordingly. In most cases, conducting research requires the use of some kind of technical solution that is extremely data secure. CSC is the provider of this solution," explains Pursula.
Sensitive data is widely available and can be used as material for a wide range of research. Biomedicine researchers, social scientists and linguists can benefit from the use of sensitive data.
In Finland, organisations such as Statistics Finland, the National Institute for Health and Welfare, and biobanks keep data that has been collected for years. This data can be used in a variety of research.
Indeed, the wide range of possibilities that sensitive data offers research was one of the main reasons that Pursula became interested in the subject.
"Another reason I got into this subject was that genome and health data are incredibly valuable materials for research, and I believe that our work has real meaning as it makes it possible for us to develop better drug treatments and improve human health," says Pursula.
Information security interests people
In recent years, it has become necessary to invest in matters related to information security, because people have developed a keener interest in where the personal data they have online ends up. This kind of data typically involves, for example, personal information collected on social media channels.
In Pursula's opinion, the General Data Protection Regulation (GDPR) that entered into effect in May 2018 is a good thing, and it has raised people's awareness of information security. The GDPR also facilitates the processing of international data, as it is then understood that nearly the same rules apply all over Europe.
CSC and sensitive data
Even though Pursula has long worked with sensitive data, he is still very enthusiastic about the subject as he is constantly learning new things.
He cannot recall any specific career highlights off the top of his head. He generally avoids celebrating his achievements, instead immediately focusing his attention on the next challenges to be tackled. In any case, customer satisfaction and achievements provide their own sense of accomplishment and are important to Pursula.
CSC has provided services for open research for many years. Now, CSC wants to offer the same possibilities for research using sensitive data. Although there is already a wide range of possibilities for processing sensitive data available, such as secure cloud platforms, they are still being further developed.
"We want to provide equally good and equivalent services for research using sensitive data. This means that we have take into consideration all the requirements for processing sensitive data, such as access limits and high-level data security, but that's the objective anyway," explains Pursula.
The author is a student at the Kruununhaka junior high school and was a job-shadowing trainee at CSC 29 October–9 November 2018.
Published originally 07.11.2018.