Introduction
Biobanking is a practice of collecting and storing biological samples e.g. tissues, cells, blood, DNA, usually for clinical and research use. This unit will focus on biobanking as it concerns human specimens only. Biobanks, also interchangeably referred to as biorepositories, have tremendously evolved since they first came into practice in the early 20th century. Types of biobanks now include disease-centric banks, e.g. UCSF AIDS Specimen Bank, population based genetic or DNA/RNA banks e.g UK Biobank, tissue or multiple specimen banks, commercial or virtual biobanks e.g. UCL Virtual Biobank, and many more. (De Souza and Greenspan 2014)
Biobanks serve multiple purposes including diagnostic, therapeutic, and research uses and can be owned by both public or private bodies. In research, for example, biobanks can serve as libraries for researchers and facilitate access and sharing of information, speed up research at the preclinical stage, enhance transnational studies, develop precision medicine, and improve the overall quality of scientific investigation. (Malsagova et al 2020)
Biobanking has generated several societal advances; however, several experts have also highlighted that given its broad span and complexity, the ethical issues associated with this practice also require significant oversight, evidenced by past injustices like that of Henrietta Lacks, an African American woman whose unique cell line was used to advance clinical medicine significantly, yet was never compensated for or consented for the use of her body tissue or cells.
Major ethically relevant aspects and challenges related to biobanking include:
- Competence, autonomy, and informed consent of participants
- Ownership of specimens
- Processing, and alternative/future uses of specimens
- Commercialization of the specimens
- Privacy and confidentiality of tissue donors
- Data exchange between institutions and businesses
- Benefits sharing along stakeholders
(Budimir et al 2011; Ashcroft and MacPherson 2019; Ram 2015; Solberg and Ursin 2019)
Assigned Readings
Thesis: In this paper, Winnickoff and Winnickoff tackle the ethical concerns with academic centers serving as suppliers of tissues and other human body by-products for private biobanks. The authors highlight how the increase in this practice exacerbates issues of oversight and the erosion of trust. They propose a “charitable trust model” as a new form of agreement between medical institutions, researchers, and donor communities. This model adopts a framework where the public is the main beneficiary and hospitals and research institutions act as stewards or trustees. The aims of this model include enhancing the full disclosure of consent and the promoting of donor participation in research governance and the public good.
Thesis: In this book review of Kara Swanson’s Banking on the Body, Ram provides an account of Swanson’s analysis of the discrepancy and unequal consideration of body parts both as property and non-property and the problems with exclusion of supply bodies from the chain of compensation.
Thesis: In this article, Charo outlines what is morally and legally at stake in whether we accord biospecimens the status of “property.”Charo argues that treating biospecimens as a form of property could have the effect of empowering patients to exercise more control over how their biospecimens are used, but potentially at the expense of research efficiency, insofar as researchers would need to secure informed consent as opposed to operating under the guise of ‘presumed consent.’ Alternatively, if the justification for less regulated access to biospecimens for research purposes is that we ought to treat them like a public resource meant to benefit the commonwealth, this appeal incurs a stronger ethical duty to promote distributive justice over commercial interests.
Discussion Questions
- What are some of the advantages and disadvantages of the charitable trust model?
- What model or theory of property [of the body] is assumed in the charitable trust article?
- What are some normative implications of a model/theory of our bodies as property?
- In what ways does benefit sharing resolve or exacerbate current issues around property and ethics of biobanking?