Policy, Ethics and Life Sciences Research Centre

Project Items

Genetics and kinship - finding morality at their intersection. Living with the aftermath of genetic testing for Lynch Syndrome. What are the intersections between genetics and kinship?

Background

This was a four year project funded by Cancer Research UK. Lorraine Cowley, a Principal Genetic Counsellor from the Institute of Human Genetics, was awarded a Nurse Research Training Fellowship in 2007 to undertake a PhD.

The study focussed on a large family in the northern region of England who, in 1995, was among the first in the world to have a gene fault identified that causes a spectrum of cancers known as Lynch Syndrome.

People who have inherited this dominant gene have an increased risk of developing bowel, gynaecological (in women) and other cancers of the digestive and urinary tract.

This project explored how genetic testing for a cancer gene has altered the way people within the family think about kinship.

The executive summary (PDF: 443 KB) of the project has now been published.

Project Update

Lorraine has now been awarded her PhD, supervised by Dr Janice McLaughlin, Dr Tracy Finch, Dr Emma Clavering and latterly joined by Professor Sir John Burn.

Using visual methodology and qualitative interviews, she completed her thesis, with themes addressing the notion of choice in genetic testing and the data shows how moral imperatives to children, to self and to medical research are constructed by participants.

In this context, the autonomous right to choose is reduced to a possibility and is visible only when someone declines a genetic test. Lorraine will work with these themes in her thesis to explore moral identities and their potential to affect kinship.

This work has been presented at the BSA Medical Sociology Conference, Durham in September 2010, Narratives of Health and Illness Conference Uppsala, in September 2010 and Collaborative Group of the Americas on Inherited Colon Cancer, Dallas in October 2010.

Lorraine had financial support from the Institute of Human Genetics to complete her writing up year part-time whilst offering Clinical Research Associate support to ongoing relevant research projects working with Professor Sir John Burn.