Wealth of Data? Blurring boundaries and user-roles at the interface of genetic, medical and personal information. (WC 2010-090)
Background
Starting date: 01/10/2010A "Wealth of Data" ?: Blurring boundaries and user-roles at the interface of genetic, medical and personal information.
Biobanks are the collection, storage, and (prospective) use of various kinds and combinations medical and biological information. It is believed that increased knowledge of these kinds of information, and their interactions, will lead advances in the understanding of complex diseases, and the hopeful resulting developments in diagnostics and treatment.
Biobanks vary from small-scale niche banks located in labs or hospitals (e.g.) to large-scale endeavors that seek participation from large portions of national populations (e.g. UK Biobank; deCODE
Larger banks are often equipped with their own ethics and governance councils, and academics in diverse fields have done important work in issues of privacy, consent, third-party access, benefit sharing, and other ethical, legal, and social issues. This project builds on that work by exploring empirically how some of these banks are built and used across various user-groups in the Dutch context.
The project is mapping the various user-groups in two cases of Dutch biobanking (i.e. LifeLine biobank, and the collection, storage, and prospective research use of Guthrie Cards/new born blood spots/heel pricks). These user-groups include: patient advocacy organizations; patients, bank contributors and their families; prospective bank contributors and the Dutch 'public'; biobank organizers; and related medical personnel.
The goal is to explain how these various users influence the development, use, and governance of these biobanks, and at the same point in time to explore how these users -and their lives and practices- are in turn shaped by the development and (prospective) use of these biobanks.
With a clear description of how these banks are created, used, and governed across different groups we are able access their impact on social relations and bio-medical practice.
Dr. Conor Douglas is the lead researcher on this CSG-funded project, and is working alongside Dr. Carla van El (Project Leader, VUmc), Dr. Maud Radstake (Project Leader, CSG), Prof. dr. Martina Cornel (Supervising professor, VUmc), and Sarah van Teeffelen (Junior Researcher, VUmc).
Project Duration: October 2010 – October 2013