Enhancing Biobank Participants’ Rights – From Paper to Portal

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 Technologies – we have designed and delivered a digital biobank rights portal (“MyBiobank”), which enables participants in a population biobank to actually (i.e. digitally) exercise a number of their biobank rights. On the flipside, MyBiobank provides biobanks with a platform to: (i) reduce time and costs of organising and distributing questionnaires; (ii) honour participants’ biobank rights and to meet statutory requirements; (iii) build and maintain trust and transparency among participants, researchers, research ethics committees, supervisory authorities, funders and the public; (iv) promote participant engagement; (v) “valorise” findings, knowledge and data; (vi) benefit from unsolicited, active contributions of the participant to biobank research and (vii) share benefits with participants by providing them with a digital avenue to get to see “what’s in it for him or her.” Notably, however, in the current version of MyBiobank, both the issue of withdrawal and the issue of feedback of genetic information remain to be resolved.