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Genetics, Health and Families


Helen Statham: Deputy Director and Senior Research Associate

Dr Gail Ewing: Senior Research Associate

Professor Martin Richards: Emeritus Professor

Dr Nothando Ngwenya: Research Associate

Current Research

The main strand of empirical research within the group is that led by Dr Gail Ewing on the role of family carers in supporting patients through the palliative stages of illness. While many government policies and initiatives talk about the importance for those at the end of life to be able to die in the place of their choice, this is only possible for those who wish to die at home and have family and friends who are able to support this decision. While the demands of caring for a family member or friend at the end of life are well recognised, little attention has been paid to how best to assess and support carers in this process. The development of a simple tool that can be used by professionals in palliative care to assess the physical, emotional, social and practical support needs of carers has been at the heart of Dr Ewing's recent research. In collaboration with Professor Gunn Grande at the University of Manchester, Dr Ewing conducted the initial development work on a Carer Support Needs Assessment Tool (CSNAT). Since then, in further collaborations with Professor Grande, Dr Lynn Austin and Professor Chris Todd (University of Manchester), Professor Sheila Payne (University of Lancaster) and the National Association for Hospice at Homes, CSNAT has been piloted and validated, and it is now implemented in a number of practice settings and with different terminal illnesses. There has also been great interest in the tool from researchers in Canada and Australia, and from service provider organisations in Australia delivering support to carers. Related to this work, further insights into issues for family members have led to new studies on how patients share the news with their family that they have a cancer diagnosis. Again, this study aims to develop an intervention, including different resources that professionals can use to facilitate this difficult phase along what is often known as a cancer journey.

Funding for the palliative care studies has come from a range of sources, including Dimbleby Cancer Care, Research for Patient Benefit (NIHR) and Marie Curie Cancer Care.

While much of the research into pregnancy and genetics has been completed and is therefore only briefly summarised, Helen Statham and Martin Richards retain strong interests in the areas and still work in advisory roles for other researchers and in policy spheres. So, although retired, Martin Richards contributes to work on the ethics and practices of returning research results and incidental findings to participants in biomedical population studies and biobanks; and on social and ethical issues around assisted and collaborative reproduction and novel techniques, including those related to mitochondrial DNA disorders. Helen Statham works with young researchers developing pregnancy-related investigations. These include studies exploring the psychological and social implications of prenatal diagnosis and termination of pregnancy because of fetal abnormality, and those exploring caesarean sections and why the rate is high in the UK.

Previous Research

Research that has ended over the last few years covers more of the lifespan, and includes a number of studies related to pregnancy. The EU funded study Ethical Dilemmas in Genetic Diagnosis (EDIG) brought together psycho-analysts, ethicists and empirical researchers from across Europe to explore ethical dilemmas in the area of prenatal diagnosis. A study of parental attitudes and beliefs about post-mortem examination in miscarriage, stillbirth, and termination for fetal abnormality was carried out with obstetricians Andy Breeze, Gerry Hackett and Christoph Lees and paediatric pathologist Flora Jessop, all from the Rosie/Addenbrookes. This explored factors influencing parental decision-making to have or not to have a post-mortem performed in cases of fetal loss, or termination of pregnancy for fetal abnormality. Research with collaborators in Newcastle (Professors Steve Robson and Judith Rankin and Dr Ruth Graham) built on previous studies on health professionals' attitudes to late termination of pregnancy after prenatal diagnosis of fetal abnormality.

Other studies have focused on genetics and the impact of genetic disorders. 'Psychosocial Effects of Molecular Genetic Diagnosis: The case of X-linked learning disability' was a longitudinal study (funded by the Wellcome Trust) that followed families who had joined the Genetics of Learning Disability (GOLD) Study. The GOLD study aimed to identify genes associated with learning disabilities in families without any specific diagnosis, but where the pattern of learning disability in the family suggests that the condition is inherited in an X-linked way, (i.e. the faulty gene is carried in females, where it is not usually expressed, any son has a 50% chance of inheriting the faulty gene and, if he inherits it, he will be affected). The psychosocial study examined the beliefs, understandings, attitudes and behaviours of family members before and after genetic testing, as well as other aspects of family life and the way in which these families are, or are not, supported by statutory services. Another Wellcome Trust funded study was 'A Genetic Diagnosis for Obesity: Social and moral experiences of the body and responsibility in childhood'. This was a PhD studentship for Shirlene Badger, supervised by Dr Oonagh Corrigan (now at the University of Exeter), which explored the experiences of severely obese children and their families, who were part of a 'Genetics of Obesity Study'.