The Blurb On The Back:
From DNA sequences stored on computer databases to archived forensic samples and biomedical records, bioinformation comes in many forms. Its unique provenance – the fact that it is ‘mined’ from the very fabric of the human body – makes it a mercurial resource; one that no one seemingly owns, but in which many have deeply vested interests.
In this groundbreaking book, authors Bronwyn Parry and Beth Greenhough explore the complex economic, social and political questions arising from the creation and use of bioinformation. Drawing on a range of highly topical cases – including the commercialisation of human sequence data, the forensic use of retained bioinformation, biobanking and genealogical research – they show how dramatically demand for this resource has grown, driving a burgeoning but often highly controversial global economy in bioinformation. But, they argue, change is afoot as new models emerge that challenge the ethos of privatisation by creating instead a dynamic open source ‘bioinformation commons’ available for all future generations.
The Review (Cut For Spoilers):
Bronwyn Parry is a Professor in Global Health and Social Medicine at King’s College London and Beth Greenhough an Associate Professor in Human Geography at Keble College, Oxford. In this book they look at the ethical, legal and moral issues relating to the use and storage of bioinformation including issues such as donor consent, the use of bioinformation for forensics purposes and biobanking for medical research in a fascinating read that serves as an excellent introduction to anyone wishing to know more about the topic.
The book is divided into 6 chapters. The first chapter deals with setting out what is meant by “bioinformation” (which the authors define as “all information, no matter how constituted, arising from analyses of biological organisms and their behaviour, that can be used to elucidate their structure or function, identify individuals, or differentiate them from each other”) before going on to describe registers of bioinformation and the political economies that arise from the them. I thought that this was a useful summary of the science behind bioinformation and into the types of bioinformation that exist (not just DNA but things such as fingerprints as well).
Chapter 2 looks at the provenance of bioinformation, i.e. where it comes from and how the knowledge of the history of bioinformation shapes its usefulness and value to science and those wishing to profit from it. The focus here is on the building of what’s called biobanks and the reasons why people contribute to them together with biobanks put together from repurposed information (which I found particularly fascinating given that it ties into the related issue of consent to how donated information is used). I was also fascinated by the look at the ethics relating to provenance when it comes to bioinformation belonging to specific ethinic or racial groups, e.g. indigenous Australians, given the potential for such information to be misused for purposes such as eugenics or other racialist driven theories.
Chapter 3 was my favourite as it dealt with the thorny issue of who owns bioinformation, which is a topic close to my heart as it’s one I remember studying back at university. This takes on the Moore and Henrietta Lacks cases together with other patent law milestones to give a coherent explanation for how patents law applies to this area and the difference between invention and discovery. I was particularly interested in the section that examines the attempt to patent breast cancer genes and the associated testing for it, which raises fascinating ethical concerns particularly when companies are vigorous about protecting those rights.
Chapter 4 looks at the markets for consuming bioinformation from individuals seeking to test their own genes, gene discovery research, forensic testing and public health. The chapter is particularly strong on the battle between public and private uses of bioinformation and how attempts to initially set up a commons framework for use and ownership was swept away by the move to commercialise the same. The chapter is also strong on analysing how to distribute the benefits of bioinformation, again especially in relation to indigenous communities which remain vulnerable to exploitation because of the value attached to their provenance.
Chapter 5 focuses on the big data revolution i.e. the agglomeration of small datasets of genetic information, patient records and other data (e.g. data collected from fitbits and other monitoring devices or self-reporting). Perry and Greenhough examine the claims made for big data in terms of personal healthcare and how, despite vast resources being applied towards harvesting it, the resources aren’t there for analysis of the same.
The final chapter looks at the future of bioinformation in the context of the potential to build a new commons (where the authors favour a charitable stewardship model) and the implications for hypercollection.
All in all I thought this was a great primer for anyone with an interest in the topic and it certainly opened my eyes to developments that I had previously been ignorant of (e.g. the extent to which private companies are investing in the collection of private health data through the use of diet apps and fitbits.
Thanks to the Amazon Vine Programme for the review copy of this book.