The Transgenerational Communication of Genetic Information
Angus Clarke, Paul Atkinson, Maggie Gregory, Rebecca Dimond, Paula Boddington
Affiliated staffPeter Collins
Funded byThis project, which began on 1 May 2004 was funded by the Wellcome Trust under their Social, Ethics and Public Policy Research on Biomedical Science Programme. It is a research collaboration between social scientists, clinicians and has input from a philosopher with experience in biomedical ethics and medical law.
BackgroundThe communication of genetic information among family members raises many issues of principle. There may be good clinical reasons why a family member should pass on information to another about their genetic risk but communication may be hindered by other factors. The passing of genetic information from parents to children, and less commonly from children to their parents, are special but important cases of the transmission of genetic information within the family. Families differ greatly in how they approach these issues and how they justify their decisions. This study will focus on the vertical transmission of information from parent to child and from parent to grandparent.
AimsThe study aims to discover the ways in which genetic information is transmitted vertically between generations (between parents and children) in four disease-related contexts. This will enable the description of the range of practices observed and the motivations and justifications volunteered to account for these. Understanding family behaviour and motivational accounting will clarify the issues raised when family members make decisions about the genetic testing of children and more generally about the transmission of genetic information.
The sample of parents for interview will be derived from the clinical and laboratory records at the University Hospital of Wales. The research will comprise semi-structured interviews with parents and children where information relating to genetic conditions has been disclosed, and their retrospective accounts of the process of disclosure will be obtained. Where parents have information about their children that they have not yet passed on (to their own parents (the grandparents) or to their children) but may yet do so the interview will explore how and when they plan to do so and the factors that they have taken into account in making their decision. A small number of families will be tracked over a period of 12-18 months to chart how the transmission of information proceeds and how it is received. It is intended that around 120 interviews will be conducted. Data arising from these interviews will be analysed to look at the accounting practices deployed and the arguments they use to justify specific practices. The results will be reported in appropriate professional and academic journals.
Main research questions
- How and when do parents pass genetic information to their children, about definite/proven genetic carrier status or their at-risk status?
- How do parents approach their own parents with important information?
- Are parents prepared to discuss the conflict of duties they face?
- What implications are there for professional guidelines on confidentiality?
- Were families given any advice by professionals on how/when to pass on information?
Policy implicationsThe project provided important background information for the development of policy on several contentious areas, including the response of professionals to the non-disclosure of genetic information within the family and the genetic testing of children, and will be helpful in training current and future practitioners.
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