From gift to waste: changing policies in biobanking practices

Abstract

Traditionally the analysis of biomedical discourses surrounding biobanking has focused on the role of donation and gift giving as central aspects related to the procurement and use of tissue samples. More recently, studies have looked at the political underpinnings of building national collections of tissue samples. These national projects draw increasingly on a discourse of waste and efficiency as a way of legitimising activities. This paper draws attention to the way new arguments draw from environmental discourses in an attempt to reframe contentious ethical and legal issues in a more favourable light. Attempts to evoke notions of efficiency draw on a different set of persuasive techniques to foster support for large research and development ventures involving public-private partnerships, but at the same time limit public debate.

Beyond the person: the construction and transformation of blood as a resource

“…It might also engage with the significant modernization of services in recent years within the UK and internationally, that has led to the introduction of new equipment, new practices, and ultimately new forms of biovalue (Alliance of Blood Operators, n.d.; Australian Red Cross Blood Service, 2014). Changes to biomedical science and research is shifting the relations between the commercial sector, public healthcare and the individual; as a result, discourses of waste and efficiency are increasingly being combined with those of gift-giving and altruism (Tupasala, 2011). Developments are also influencing the demand for blood, and in particular the traffic of specific blood components and products in a global 'technoscape' (Appadurai, 1996).…”

Embracing complexity and uncertainty: An analysis of three orders of ELSA research on biobanks

“…Such a shift is not Genomics, Society and Policy 2011, Vol.7 pp. [47][48][49][50][51][52][53][54][55][56][57][58][59][60][61][62][63][64] Genomics, Society and Policy, Vol.7 (2011) ISSN: 1746-5354 53 only detectable in the discourse of ELSA expertise; it is also visible in the manner in which new national biobank initiatives were set up after the Iceland case, around the turn of the millennium. The case of the UK Biobank, in particular, demonstrates that the international community had learned many lessons from the Icelandic endeavour and, as a result, a strong ethical and governance framework was created before the launch of the biobank.…”

“…In a way, bioethics changed from an ethics for the life science research community to an ethics of citizens who have rights and responsibilities in relation to the biomedical research complex. 56,57 Arranging sufficient protection of informational privacy, data protection, and an acceptable consent procedure in biobanks was seen as helping to achieve a satisfying donor participation rate. Such an arrangement would still respect personal autonomy, a leading principle of bioethics, by establishing a relationship resembling a contract between a donor and a biobank.…”

“…This approach resembles some crucial elements of Dirk Baecker's sociological analysis of recent Genomics, Society and Policy 2011, Vol.7 pp. [47][48][49][50][51][52][53][54][55][56][57][58][59][60][61][62][63][64] Genomics, Society and Policy, Vol.7 (2011) ISSN: 1746-5354 57 shifts in management styles of other domains. The search for solutions for seemingly given or naturalised problems is replaced with the search for new questions and perspectives that enable the detection of chances and threats through distortions of routine organisational processes.…”

“…Therefore, third-Genomics, Society and Policy 2011, Vol.7 pp. [47][48][49][50][51][52][53][54][55][56][57][58][59][60][61][62][63][64] Genomics, Society and Policy, Vol.7 (2011) ISSN: 1746-5354 58 order ELSA research can turn the explicitly strategic assumption of the communitarian turn in ethics into strategic questions that can be systematically reactualised from time to time: Is this specific type and practice of biobanking considered to be for a public good? By whom?…”