Friday, 16 November 2007

Tensions and Ambiguities



Images taken from the Electronic Atlas of the Developing Human Brain.


I recently completed the first part of my a placement at PEALS - which is the Policy, Ethics And Life Sciences research Centre, based in Newcastle upon Tyne.

'The Policy, Ethics and Life Sciences (PEALS) Research Centre was established in 1999 as a partnership between the Universities of Durham and Newcastle and the Centre for Life. PEALS aims to research, inform and improve policy, professional practice and public participation in the life sciences. We particularly promote research and debate on the social and ethical aspects of genetics and other life sciences.'

Text taken from the PEALS website


Part of my placement has been spent in the lab, looking specifically at gene expression in early human development. This is research led by Prof. Susan Lindsay and goes under the name of DGEMap

'Developmental Gene Expression Map. (DGEMap) DGEMap is an EU funded project which aims to define the organisational structures, ethical framework, and technologies for molecular genetics and informatics necessary for a proposed new infrastructure for research on gene expression in early human development. This particular field of research uses embryonic or foetal tissue recovered from legal elective termination of pregnancy or miscarriage. Clearly, cultural and social attitudes to research using such material vary significantly throughout members of the European Union . Thus, the ethical framework for using these tissues in a pan-European research facility needs to be carefully evaluated and assessed. PEALS is exploring the social, legal and ethical issues associated with science that uses such tissue, with the aim of providing a framework of considerations for an ethically robust research governance framework for the proposed new infrastructure. We have conducted a review of the social science and bioethics literature in this area, in addition to identifying the, often complex and contradictory, legislation and regulatory guidelines in place for working with human developmental tissue throughout the EU. We have also conducted a survey of some scientists in the field and identified a strong desire for the provision of ethics training to staff at all stages of their careers. We will follow this up with a number of interviews with senior scientists engaged in human developmental research, in order to elicit their views on the strengths of the existing systems of governance under which they operate, and the challenges they encounter. A symposium of invited scientists, lawyers, philosophers and social scientists was held in early 2007, where the issues identified in the literature review were discussed and other areas of concern and interest identified. Two topics were thought to deserve particular attention; consent for the donation of tissue to research and engagement with the wider public on the value of this research.'

Text taken from the PEALS website


Below are links relating to this research:

http://www.dgemap.org
http://www.hdbr.org
http://www.ncl.ac.uk/ihg/EADHB



I have to say that, so far, this hasn't been the easiest placement. On entering the lab environment, I found myself coming up against quite a few unexpected challenges; much of these were simply to do with a misunderstanding of 'lab etiquette'.

I initially spent two days at PEALS immersing myself in the ethical issues - the needs and arguments for and against, the ways of talking about genetic research and attempting to get to grips with the super sensitivity needed when approaching work that involves the use of embryonic tissues.

After this short time, I entered the lab environment, spending time as an observer. Almost immediately it felt as though problems were arising - I felt that in some ways I was treated with a sense of suspicion, a little like an intruder and also, that little was understood of potentially how the role of artists within industry, etc could be beneficial. This was initially all a bit of a shock - I had been anticipating that these different practices could meet and inform one another - I felt (and still do) that it's possible to make artwork that can facilitate the raising of issues that are more often written about, collected as data or that become a headline in a tabloid, through the more accessible impact of the visual. These initial difficulties led me to feel that there was an air of defensiveness shrouding the lab and its practices.

I felt that it needed to be acknowledged or explained that the lab dealing with such sensitive work, is not the place to discuss ethical issues or to attempt to enter any personal discussions that working with such rare material evokes. It seems, very predictably and understandably, that it is a necessary to make an emotional and intellectual 'separation' here.

Many of my points here, are obvious in hindsight. Lots of 'stuff' has come out of this: for the lab - how to engage visitors, and for me, how to address and engage in 'separation'. Which oddly enough, appears to be becoming a mutually beneficial relationship.


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