16 October 2017
ByAppeared in BioNews 922
Published by Polity Press
ISBN-10: 1509505466, ISBN-13: 978-1509505463
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Since 2011, Polity Books has published a number of books in its 'Resources Series', which have focused on subjects like diamonds, oil and timber. Yet its forthcoming volume marks something of a shift, for its focus is bioinformation – that is, data from or about biological organisms, created for a variety of functions (e.g., to identify particular genes or people), and which includes medical records and DNA databases, along with archived pathological samples and the results of clinical trials.
As is suggested by the volume’s authors, Professor Bronwyn Parry and Dr Beth Greenhough, the inclusion of Bioinformation within the series is, at first glance, somewhat incongruous: after all, unlike diamonds, oil and timber, bioinformation is not a finite resource. Neither is bioinformation unitary, tangible or easy to identify. Yet, as Professor Parry and Dr Greenhough compellingly show, bioinformation is subject to just as much contention over ownership and extraction as other resources. This, the authors argue, is because bioinformation is not mere data to be extracted from an organism, but is created through the process of extraction – it progresses through so many processes that the data becomes technical inventions. The central focus of Bioinformation is the political and ethical issues that arise from this process of creation and, later, commercialisation.
Professor Parry and Dr Greenhough – of King’s College, London and the University of Oxford, respectively – develop their discussion with recourse to case studies. The first focuses on those who donate to biobanks and their reasons why. Biobanks have, after all, grown rapidly in the past few decades; notable examples include forensic databases such as the UK National DNA Database and personal biobanks (where consumers donate their genetic material to companies in order to trace their ancestral roots). Worryingly, however, Professor Parry and Dr Greenhough draw attention to discordant understandings between those collecting and those donating bioinformation. The former, for instance, often assume that samples are donated altruistically. Meanwhile, the authors point to research, commissioned by the Progress Educational Trust (which publishes BioNews), that suggests that some donors think of personal biobanking as an informal health-check – this despite how rarely biobanks provide feedback.
Protections for donors are also light, according to Professor Parry and Dr Greenhough: the donation of genetic material may implicate close family members, and the increasing ease with which data can be cross-referenced renders anonymisation redundant. Furthermore, there are serious questions as to whether a donor's consent can ever be truly informed (for how do they know how their data will be used ten, twenty or thirty years from now?). Admittedly, as Bioinformation documents, donor data may be protected through academic practices: for example, some journals refuse to publish research produced without the donor's informed consent. Yet such protections do not apply to commercial settings and, as Professor Parry and Dr Greenhough also show, some biobanks have effectively grown through a process of 'mission creep', of increasing the remit of the biobank to the point that it includes much more data than was originally envisaged: the UK National DNA Database, for example, was originally meant to hold samples from only those convicted of crimes, but was then later permitted to retain data from the innocent, too.
Discordant lay and medical approaches towards clinical data echo throughout the early chapters of Bioinformation. For example, the authors document the means through which courts came to recognise human tissue – formerly believed to be unpatentable – as capable of being human property. By blending human tissue with the labour through which that tissue was identified, extracted and translated, the law has over the past three decades came to recognise the proprietary rights of those who collect bioinformation. Yet, as the authors show, lay understandings of ownership have not followed suit. Hence why researchers and commercial organisations have been accused of extracting valuable bioinformation from socially-deprived groups or populations, without then sharing that research (or the proceeds of it) with donors.
In the early chapters of Bioinformation, Professor Parry and Dr Greenhough adopt a curiously neutral tone, documenting what they perceive to be the inequities that have attended the accumulation and use of personal data, but otherwise leaving their own views out of the discussion. Granted, they offer suggestions here-and-there for re-tilting the balance in favour of donors – better education, an end to a culture of scientific entitlement, greater use of genetics-counselling – but the first two-thirds of Bioinformation remains more expository than argumentative. The effect is a highly readable if somewhat unmemorable book, only slightly marred by what feels like excessive use of signposting (where themes are frequently introduced then fuller discussion is deferred until a later chapter).
Where Bioinformation hits its stride is in the final one-third of the text. Parry and Greenhough are caustic about the recent imbrication of bioinformation with so-called 'big data'. They iterate their earlier comments about the relative ignorance of donors, while also seeming to imply that some ought to know better (e.g. what do people think happens to the information they share on social media or upload to fitness apps?). But Bioinformation reserves its sharpest criticisms for the use of large-scale data-sets to try and identify genetic markers or other identifiers of diseases. They have skewed medical thinking, the authors argue, blurring causation and correlation, and have unintentionally gifted insurance-companies and other organisations with fresh groups to extort.
It is the final chapter of Bioinformation where Professor Parry and Dr Greenhough develop their argument in a more novel direction. The authors promote a profound re-thinking of how data is shared via open commons, while advocating for a new model for owning bioinformation – one in which the holders of the data act as custodians, and where biobanks are constituted as charitable trusts. Furthermore, and as a consequence of miscarriages of justice from lab mix-ups, Bioinformation also encourages the creation of a system by which donors can challenge the use of their data.
The most radical idea advanced by Professor Parry and Dr Greenhough, however, is reserved for the very end of the book. Here, it is argued that one of the most effective ways of correcting the imbalances produced by the accumulation of large swathes of data would be taxation. Whether any revenue is raised is immaterial. Rather, the importance of taxation lies in the creation of paper-trails – documents that chart the why, when and where of bioinformation, and ensuring the donors have some mechanism by which they can trace who owns what is a highly valuable resource. It is a pity that such a bold agenda is reserved for the final ten pages. Nevertheless, Bioinformation offers an interesting, readable introduction to its subject matter, while suggesting promising avenues that future research might explore.
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