ABSTRACT

Of all the legal and ethical aspects in biobanking, issues around consent are probably the ones that are discussed most intensely (Gibbons and Kaye 2007: 205). While there is a broad agreement about the need to obtain some kind of consent,1 the type of consent required is hotly disputed (Elger and Mauron 2003: 270-275, Nõmper 2005: 45-80). Informed consent,2 explicit consent,3 open consent (Nõmper 2005: 80-144), broad consent (Kaye 2004)4 and one-time general consent (Wendler 2006) are the variants in discussion. We will try to illustrate in this chapter that in our opinion, what is more important than the determination of a certain type of consent, is the adoption of a more holistic view that takes into account all relevant elements that safeguard the donor’s interests in the biobanking context. While consent is certainly the cornerstone, other elements that add to the traditional concept of consent can help to achieve both the protection of the interests of the individuals involved and the proper functioning of a biobank. Our argument can be divided into two elements: Firstly, at a minimum level the donors’ broad consent has to be obtained before their tissue and related data5 can be processed. Secondly, wherever possible, the donors should be granted the possibility of exercising what we will call ’co-determination’ as a means of safeguarding the donors’ autonomy.