title: Biobanking of blood and bone marrow: emerging challenges for custodians of public resources.
abstract: The Australian Bone Marrow Donor Registry (ABMDR) is a publicly funded company that is part of an international network that facilitates unrelated bone marrow transplantation. This role means that the ABMDR has access to a large biospecimen repository therefore making it a highly valuable research resource. Recognising the potential value of these biospecimens for research purposes, the ABMDR is in the process of determining whether, and how, to share its biospecimens with other biobanks. While this would undoubtedly be of value to the scientific community, and ultimately to the wider community, it would also inevitably transform the role of an institution whose primary role is therapeutic, and would compromise the degree of control that a custodian has over donated material. This article describe the challenges confronting the ABMDR, and organisations like it, in balancing their duties to donors, patients, researchers and the general public. These problems have led inevitably to the use of "property" rights language in the discussion of these issues but notions of gift, ownership, trusteeship and transfer might also be considered.
authors.affiliation: Australian Bone Marrow Donor Registry. lololapar@gmail.com
authors.forename: Lorena
authors.initials: L
authors.lastname: Aparicio
authors.affiliation: Australian Institute of Health Innovation, University of New South Wales.
authors.forename: Wendy
authors.initials: W
authors.lastname: Lipworth
authors.affiliation: Health Law Research Centre, Faculty of Law, Queensland University of Technology.
authors.forename: Shih-Ning
authors.initials: SN
authors.lastname: Then
authors.affiliation: Centre for Health Governance, Law and Ethics, Sydney Law School.
authors.forename: Cameron
authors.initials: C
authors.lastname: Stewart
authors.affiliation: Australian Bone Marrow Donor Registry Ethics Committee.
authors.forename: Patrick
authors.initials: P
authors.lastname: Coghlan
authors.affiliation: Centre for Values, Ethics and the Law in Medicine, University of Sydney.
authors.forename: Ian
authors.initials: I
authors.lastname: Kerridge
authors.affiliation: Centre for Values, Ethics and the Law in Medicine, University of Sydney.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Fleming
mesh_terms: D001315:Australia; D018070:Biological Specimen Banks / Q000941:ethics* / Q000331:legislation & jurisprudence*; D035843:Biomedical Research / Q000941:ethics* / Q000331:legislation & jurisprudence*; D006801:Humans; D010067:Ownership / Q000331:legislation & jurisprudence; D014019:Tissue Donors / Q000331:legislation & jurisprudence*