Project:

Developmental Gene Expression Map (DGEMap)

From October 2005 to September 2007
Project Leader(s): Susan Lindsay
Staff: Simon Woods, (Ethics work package leader), Dr Ken Taylor (Research Associate)
Contact: Simon.Woods@ncl.ac.uk
Sponsors: European Union
Homepage: http://www.dgemap.org/

DGEMap (formerly GeneExpress) was an EU funded project which aimed 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. In this project, PEALS explored 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 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 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 then followed 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.

For more detailed information please go to the DGEMap website

 

Staff

Dr Kenneth Taylor
Research Associate

Dr Simon Woods
PEALS Co-Director