State Responsibility and Accountability in Managing Big Data in Biobank Research: Tensions and Challenges in the Right of Access to Data

摘要: Within the European context Data Protection Directive (Directive 95/46/EC) maintains an important role in current legal debates on rights and obligations different stakeholders have processing of personal data. Biobanking data sharing infrastructures pose new ethical dilemmas interpretations we uphold with regard to This chapter examines challenges associated subject’s right access Finnish biobanking. The provides provisions for individuals confirm “as whether or not relating him are being processed”. Finland’s recent Biobank Act (688/2012) has raised concerns since it also requires biobanks provide, upon request, information regarding which may clinical (actionable) relevance individual’s health. There is, however, no governance mechanism place through common standards practices could be implemented. As a result extension mandating relate significance results health become major concern biobankers Finland. management data, research incidental findings is becoming, increasingly significant challenge all countries process drafting policy regulatory frameworks big public genomics personalised medicine. case highlights that many states facing across Europe elsewhere terms how govern coordinate biomedical