The ethical dilemma faced by people who undergo genetic counselling will be the subject of a two-year study by researchers at the University of Aberdeen, thanks to a £62,000 grant from the Wellcome Trust.
The team of six doctors and researchers will examine the way individual family members pass on information regarding genetic diseases to their relatives following genetic counselling in the study, To Tell or Not to Tell: Passing on Genetic Knowledge to Family Members.
The study has been organised across three different faculties within the University, highlighting the importance of medical as well as social and ethical influences on the field of genetics. Heading up the research is Dr Sheila Simpson, a clinical geneticist involved in counselling patients on genetic issues. The rest of the team comprises two medical sociologists, a medical geneticist, a public health physician and an ethicist.
Dr Simpson said that genetic counselling raises a host of ethical and moral questions, which they hope to address over the next two years by interviewing 70 people from the Grampian region, whose families were affected by genetic disorders.
“Our study will address such questions as: do people who have been counselled for genetic diseases share such information with their children and/or brothers and sisters; if they do pass on information, when do they tell and, when people do decide to tell, what relevant information do they pass on? ” she said.
“As such, our research programme will look at whose right is it to know, do people feel they have a moral obligation to inform their family, or just some of their family, and whether or not some individuals may be disadvantaged by having genetic information disclosed or withheld. We also hope to find out why some people who have been counselled decide to pass on the information to relatives and why others don’t.”