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13 SCRIPTed 70 (2016)
Enhancing Biobank Participants' Rights from Paper to Portal

handle is hein.journals/scripted13 and id is 70 raw text is: Volume 13, Issue 1, May 2016 Enhancing Biobank Participants' Rights From Paper to Portal Jasper Bovenberg*, Mathijs Kattenberg**, Bart Baselmans***, Michel Sinke****, Remko Hoekstra ...., Dorret L Boomsma*.... and Gonneke Willemsen*..... Abstract On paper, participants in population biobanks - large-scale collections of human samples and associated health data - enjoy a number of rights such as the right to consent to their participation, to withdraw, to feedback and to view their data (biobank rights). In reality, however, exercising these rights proves difficult, as it requires participants to use pen and paper, envelops and stamps, and regular mail. Worse, some rights are even denied, as honouring them is claimed to require a disproportionate effort on the part of the biobank. This enforcement deficit is hard to justify in the light of the same very developments in IT that helped build and use the biobanks; why not deploy that technology to empower participants to exercise their rights in those biobanks? This question may become an imperative, as the recently adopted EU General Data Protection Regulation now requires biobanks to facilitate the exercise of data subject rights. Introducing the concept of Consent and Control Enhancing Technologies - akin to the concept of Privacy Enhancing * Attorney at law and founding Director of the Legal Pathways Institute for Health and Bio Law, Aerdenhout, The Netherlands. Advisor eScience and Cloud services, SURFsara, Amsterdam, The Netherlands. PhD student, Department of Biological Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands. **** PhD student, Biomedical MR Imaging and Spectroscopy group, Center for Image Sciences, University Medical Center Utrecht, Utrecht, The Netherlands. Director, AExist The Hague, The Netherlands. ****** Professor, BB PhD student, Department of Biological Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands. ******* Associate Professor, Department of Biological Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.

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