Withdrawing from participating in a biobank--a comparative study.
The development of biobanks worldwide is considered to hold great promise for the provision of new insights into the connection between genes and environment and to have a positive impact on public health. There is, however, a constant tension between the rights of individuals on one hand and the progress of research on the other hand. One of the rights developed to protect the autonomy and free will of participants and reflecting the basic principles regulating medical research according to the Nuremberg Code and the Declaration of Helsinki is the right to be able to withdraw from the biobank at any time as an expression of the participant's free will and autonomy. There are two important problems to withdrawing, namely the 'what' and 'when'--what can be withdrawn and when can it be withdrawn.
Gertz
Renate
R
Arts and Humanities Research Council (AHRC), Research Centre for Studies in Intellectual Property and Technology Law, School of Law, University of Edinburgh.
D016208:Databases, Factual / Q000941:ethics* / Q000592:standards*; D017408:Guidelines as Topic; D006801:Humans; D007258:Informed Consent; D016347:Medical Records Systems, Computerized / Q000941:ethics* / Q000592:standards*; D026684:Personal Autonomy; D018907:Privacy; D045808:Refusal to Participate