The Protection of Biological Information

Monday 27th October, 11.30 – 13.00: Thompson Room

Session Organisers: Dr Mina Bhardwaj & Dr Paul McCarthy, Cesagen

The nature of and amount of data cosllected on individuals have increased exponentially over recent years. Not only has the collection and storage of data increased but how these data are processed, analysed and the different uses to which they can be put has expanded in scope and range.

Recent occurrences in the UK such as the loss of an entire database containing the personal information of millions of UK citizens, illustrate the fragility of data protection. While personal data are subject to data protection laws, the regulatory approach to be taken with biological data is perhaps less clear.

To complicate things further, biological data are being linked to other forms of personal information, for example biometrics with identity and genetic data with our insurance status. Developments such as biobanks may also result in linking biological data with current and future health states, for individuals as well as populations.

Session Chair: tbc.

Title: Reading Bodies: Security and the Problems of Protecting Biological Information
Speaker: Dr Paul McCarthy
Institution: ESRC Cesagen Centre, University of Lancaster

Biological information and data often conjures the notion of data being used within medical and commercial settings yet increasingly biological information is set to take on new dimensions within security settings. While to date biometric identification has relied on observable features of the human body, face, eyes and voice, an increasing drive to make ‘invisible’ features of the body machine readable, such as DNA for the purposes of identification, suggests a future where biological information takes on new importance in a range of settings. Van Der Ploeg has termed this process an ‘informatisation’ of the body. As such it is where the body becomes both ‘readable’ as well as ‘knowable’ that the issue of biometric data which is biological in nature, whether this is ultrasonic scans, DNA, remote sensing of heart-rate or body temperature may represent a marked shift in how biological ‘information’ as well as data is framed. This paper seeks to examine these issues and explore the potential policy responses that might be necessary in revisiting the protection of biological information. The paper will suggest three key challenges, policies being superseded by ‘national interest’, the collection of biological information without consent and the weakness of traditional approaches to privacy in the light of biometric technological innovation

Title: Genetic Information and Access to Life Assurance: The Poverty of ‘Genetic Exceptionalism’
Speaker: Dr James Mittra
Institution: ESRC Innogen Centre, The University of Edinburgh

Concern that failure to protect the integrity of new forms of predictive genetic information might result in individuals being inappropriately denied access to insurance has led many countries to legislate against insurers’ historic ‘right to underwrite’. Critics increasingly present ‘genetic discrimination’ as a new threat to the venerable social values of equality and inclusion and have argued for much tighter restrictions on actuarial decision-making. However, by unpacking the foundational principles of commercial insurance, and adopting a more critical approach to conventional understandings of ‘genetic data’, ‘discrimination’, ‘fairness’ and ‘inclusion’, I will suggest that the normative values underpinning life assurance in Britain are unlikely to engender widespread exclusion in an age of increased genetic knowledge, but over-regulation of industry and the protection of genetic privacy may itself create unacceptable inequity within the market. I will argue that a more constructive approach to the ‘problem’ would be to link the legitimacy of underwriting practice to the type of social goods particular forms of insurance exemplify, and instead of focusing narrowly on the primacy of genetic information, consider the broader implications of all risk-assessment for the privatisation of welfare. The genetic exceptionalism approach, whilst clearly attractive to policymakers because of its simplicity and political expediency, will have little, if any, effect on the inclusiveness of the current private insurance market, but may engender new forms of iniquity.

Title: Bioinformation, Traditional Knowledge and Genetic Resources: Biopiracy from Both Sides Now
Speaker: Dr Paul Oldham and Dr Oscar Forero
Institution: Cesagen, University of Lancaster

Over the course of the last twenty years research with indigenous peoples has increasingly taken digital form, from the collection of specimens, GPS data, photographs, video and oral histories. This digitalised biological and cultural information is then transformed in various ways into 'data', classified and stored in electronic media.

The availability of these technologies has been exploited by researchers and indigenous peoples themselves for a variety of purposes but raises challenging questions. In some cases the deployment of these technologies has given rise to new forms of bioprospecting among indigenous peoples. In others, these technologies are used to empower indigenous peoples to realise their human rights and achieve a greater say in decision-making in areas such as the recognition and management of their territories and traditional knowledge. In this paper we report on two experiences with bioinformation and research with indigenous peoples. The first involves indigenous peoples experiences with a traditional knowledge database in Venezuela that raised significant human rights issues. The second is a project directed towards participatory environmental management planning among the Mapuche of Central Chile. Both case studies expose the challenges confronting researchers and indigenous peoples with the management of bioinformation in the digital era.