Themes

Privacy 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?

Students, PhD Students, Research subjects, Scientists, Ethics committee members, Researchers, Health care professionals, Academic staff, Research institutions, Policy makers, Supervisors, Postdocs, Universities, Junior researchers, Senior researchers

What are the best practices?

Informed consent, the GDPR and biobanking.

References

1. Convention for the Protection of Human Rights and Fundamental Freedoms (Rome, 1950). http://conventions.coe.int/Treaty/en/Treaties/Html/005.htm

2. Hughes, J., Hunter, D., Sheehan, M., Wilkinson, S., & Wrigley, A. (2010).European textbook on ethics in research. Publications Office of the European Union.

3. Malin, B., Loukides, G., Benitez, K., & Clayton, E. W. (2011). Identifiability in biobanks: models, measures, and mitigation strategies. Human genetics, 130(3), 383.

Iris Lechner contributed to this theme.

Latest contribution was May 29, 2019