Altered storage of genomics data
Blurring boundaries and user-roles at the interface of genetic, medical and personal information
The storage of medical and genetic data in what are known as biobanks has altered radically during the past decade, due primarily to advances in the fields of information technology and genetics. Increasing amounts of people’s personal data are therefore being stored. Furthermore, there is a far wider range of applications for such data. And although this yields considerable opportunities – in the field of epidemiological research, for example – it simultaneously raises issues of privacy, autonomy, confidentiality and ownership rights, largely due to the fact that the boundaries between medical, research and forensic biobanks are becoming increasingly blurred.
The researchers involved in this project are to draw up an overview of the characteristics of various biobanks and the effects they have on the aforementioned themes. They are to subsequently examine the role that context (time, place) plays and compare the experiences of those involved in and associated with biobanks. The project will also examine the effect of participation in biobanks on donors, and vice versa, the influence they have on biobank practices. In order to establish the facts of the matter, the project’s researcher is not only to perform a literature search, but also shadow employees of various biobanks in the Netherlands, so that she is in direct contact with those involved.
The study should ultimately yield a better understanding of biobanks and their (possible) effect on individuals and society in general. Its findings should further clarify the debate concerning the regulation of and legislation pertaining to data stora
Start project: 2009