Are You Just Seeking Approval: Digging Deep into Biobanking Ethics

Are You Just Seeking Approval Digging Deep into Biobanking Ethics
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This is going to be a bit deep, but bear with me…

Biobankers are interested in ethics. To manage our tissue collections we need either approval by an ‘Ethics Board’ or we operate as part of a regulatory system used to govern research requiring biospecimens. So it was with interest when I was attending an information session to discuss application of our local Tissue Act regulations within our hospital, one of the research governance experts advising us said…

As the facts change, the ethics change…

I pondered this statement. Is it true that ‘ethics’ change? Isn’t the ethics upon which we frame our research infrastructure fixed in some form of ideological stone? If it changes, would this put our efforts on an unstable footing? With biobanking being a medium to long term endeavour are we likely to experience changes in the ethics upon which our biobanks have previously been judged, and what are the implications of this?

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Furthermore, should it change? If biobanks are to pride themselves on providing standardized tissue management for research, is it not essential to maintain a clear and consistent ethical framework through which we judge how best to use the tissue resources under our care.

In biomedical research, ‘ethics’ is often approached as an administrative task in which our biobanks agree to abide by a series of risk mitigation regulations mandated to us by an authority. However, a deeper look at ‘ethics’ soon highlights that it is not a thing you ‘get’ by applying to a committee for approval. Rather, ethics is a branch of philosophy which studies morality – the good-bad duality. It is studied alongside other areas of philosophy such metaphysics, epistemology, aesthetics, ontology and logic, all of which are inextricable linked to a particular world view. As an outworking of philosophy, ethics then provides biobanks with structures and explanations for how we should act according to a particular world view.

When we follow the Aristolean and Platonic normative ethics based on virtue, the biobanker must display particular good character traits to be seen as acting morally as they distribute other people’s tissue. Kantian deontological ethics require biobankers to be motivated by a ‘sense of duty’ such that one’s actions are deemed moral regardless of their consequences. This contrasts with teleological theories where an action is considered morally right if the consequences of that action achieve a specific outcome, leading to an ‘ends justifies the means’ position. An example of consequentialism is utilitarianism as espoused by Jeremy Bentham and John Stuart Mills where an action is morally good if it results in providing the greatest happiness for others. Such a world view would require biobankers to judge what causes the maximum pleasure and minimum pain to the stakeholders, a subjective act, as what one person considers pleasurable, may be considered painful by others. Contrasting views came from Arthur Schopenhauer who said that compassion and sympathy also need to be considered when determining if an action is moral, whilst Georg Hegel posed that a ‘social conscience’ should be used to determine if an act is ethical. I could go on with many different realms of philosophy and consider the ethic that could impact biobanking.

Ethics is therefore not an administrative task, nor is it a variable in our operational plans that changes as our world changes. Rather it reflects how we value our role in the world of biomedical research. Ethics captures how we practice our craft of biobanking to work within an accepted world view that determines why we do biomedical research in the first place. Indeed, the ethical frameworks biobankers face today are a convoluted mix of the many different and sometime contradictory ethical stances that have been posed over the years.

It is at this point where I believe we will start to make sense of the ‘changing facts’ we encounter. Ethics doesn’t, nor shouldn’t, change just because the facts change. Ethics changes when philosophy changes. If our ethics is confused, it reflects a confused view of our purpose and a sad state of affairs that should be avoided. Biobankers should strive to determine the ethical standards for distribution of tissue for science so to reflect a wider understanding of our place in the biomedical research world. This, in turn, has practical impact on how biobanks operate – it affects how we behave. So when we encounter new information it is our solid ethical framework that should impact how these ‘changing facts’ are managed within our particular worldview. That is, as facts change it is our ethics that gives them purpose, application and beneficence.

It is essential then that, rather than pursuing administrative approvals, biobankers engage with their institutions and consult the ethics committees to learn what their philosophical underpinning is, its use in forming the ethical framework that will determine how you operate and how they will apply their ethical frameworks to our developing knowledge base. Engagement at this level may be harder than you think.

I said this would be deep. If you have stuck with me to this point I hope I have caused you to consider, or perhaps reconsider, why you should value ethics. Not as a variable in our operations, nor as an administrative burden, but as the deep underpinning guiding our biobanking activity.

Dr. Daniel Catchpoole is an associate professor at The University of Technology Sydney and the head of biospecimen research services at The Children's Hospital at Westmead. He has 20 years fulltime laboratory research experience into the molecular basis of paediatric malignancies and has extensive experience with the analysis of gene expression as well as cellular and molecular applications associated with research into acute lymphoblastic leukaemia. He is also the Past-President of ISBER.