Privacy in research
From The Embassy of Good Science
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ThemesPrivacy in research
What is this about?
Privacy is considered an important human right, and according to the European Convention on Human Rights “everybody has the right to respect for his private and family life and his correspondence”. (1) Within research settings privacy has become increasingly important. Privacy concerns protection of identity, in the form of data protection, bodily materials, sealed health records and protection of other sensitive (research) data.
Why is this important?
Privacy is important because it is considered a human right. All persons have the right to a private life, which is based on the idea that individual welfare is promoted (2). Individuals can do as they please, as long as others are not harmed in any way. If the harm outweighs the right to privacy, society can intervence. Privacy mainly concerns the protection of personal data. In a research setting, any information, such as names, addresses and other personal data, will usually be encrypted so that other research data cannot be traced back to an indvidual. However, with the rise of biobanks, privacy of (research) participants may be jeapordized (3). As the main purpose of biobanks is to collect tissue and DNA, this cannot be encrypted. DNA is unique to every person, and can thus be traced back to an indivual. Dealing with this is an important challenge in biobanking research.
For whom is this important?
The Embassy Editorial team, Iris Lechner, Bjørn Hofmann contributed to this theme. Latest contribution was Oct 16, 2020
