Article Text

PDF

Genetic risk: women's understanding of carrier risks in Duchenne muscular dystrophy.
  1. E P Parsons,
  2. A J Clarke
  1. Institute of Medical Genetics, University of Wales College of Medicine, Heath Park, Cardiff, UK.

    Abstract

    This paper reports a study of 48 women (16 mothers and 32 daughters representing 28 families) who had lived with Duchenne muscular dystrophy (DMD) in their family. It looks at the way the women talked about their carrier risks during the course of an unstructured interview. It points to a significant difference between lay and health professionals' perspectives, in particular the thresholds they used to distinguish between high and low risk. A number of women, when quoting their risk in a mathematical form, confused their reproductive risks with their carrier risk, another indication of differential perceptions between the women and health professionals. There was evidence that several of the women did not retain their risk in a mathematical form but had translated it into a descriptive category which resolved their risk into greater certainty.

    Statistics from Altmetric.com

    Request permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.