Partnership and biobank governance.
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Date
06/07/2017Author
Chobisara, Tarmphong
Metadata
Abstract
The forward march of biobanking creates the need for an alternative approach
to biobank governance. Biobanking encourages medical advancement by making the
conduct of health-related research more efficient, by minimising physical harms to
participants, and by facilitating personalised medicine and greater understandings of
disease. Nonetheless, its characteristics that distinguish it from general health-related
research often give rise to many ethical and social issues. For example, multiple and
unexpected uses of biobank resources can render conventional informed consent
inadequate for safeguarding participants and maintaining public trust and confidence.
Also, because the size of a biobank cohort is normally large, biobanking usually
requires considerable management resources and this can mean that biobanks can
likely be financially dependent upon for-profit entities. This dependency can cause
concern among participants and publics about commercial exploitation. These issues
suggest that a new approach to biobank governance is required to address them.
Indeed, their complexity and the sheer longevity of biobanking itself also suggest that
it is relatively feasible and coherent to address them by focusing on a relationship
between participants and biobankers. This involves many aspects of interaction and
reflects an element of continuity, which is crucial to biobanking success, as opposed
to one-off measures. Consequently, with the aim of addressing issues that arise from
biobanking, this thesis offers an analysis of the participant-biobanker relationship that
can deal with these issues. Such a relationship constitutes an authentic research
relationship in biobanking (“ARR”).
Based on this premise, the main research question of my thesis is to ask: What
form of research relationship is appropriate for effective and ethical biobanking
practices? Three sub-questions are raised to solve this top-level research question.
They start with a normative question of why the ARR proposed in this thesis is
desirable for biobanking. The next sub-question asks what this ARR should look like
from a conceptual perspective. For a practical respect on my proposals, the last
sub-question concerns the ways in which the ARR can be fostered in practice.
To address these research questions, my thesis first establishes the main
characteristics of the proposed ARR as the fundamental notion thereof. These main
characteristics are used to answer the first sub-question. For the second sub-question,
the thesis suggests that the ARR should be based on the concept of partnership, as
opposed to solidarity, mainly because partnership can exhibit the main characteristics
of the ARR – as argued – and can also be prescribed in a governance manner. The
thesis then uses partnership as a basis for proposing the key features of the ARR, which
are deemed to be a conceptual framework for the ARR. To answer the last
sub-question, the thesis uses this conceptual framework to propose a partnership model
for biobank governance that can be used to develop the ARR in practice.
My original contribution is to propose a novel approach to an ARR, and this
ARR is based on the concept of partnership. In other words, my thesis argues that the
pursuit of the ARR, which looks like a partnership relationship, is an important
element of biobanking success. In this respect, my thesis is about a sociologically
informed role for partnership in biobank governance. It also provides a nuanced
epistemological grounding for a participant-biobanker relationship in both conceptual
and practical ways. From a philosophical perspective, my thesis proposes an ethical
framework for biobank governance that perceives partnership as a virtuous trait for
biobankers and provides rules for acquiring this trait through biobanking practices.
Notably, it is argued that this partnership is not – nor need it be – the legal paradigm
of partnership, which fundamentally refers to for-profit business association. While
law might have a role to play in facilitating the development of the ARR, it cannot
prescribe the ARR nor should it attempt to do so.