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Informed family planning decisions for rare genetic conditions.

  • Research type

    Research Study

  • Full title

    Developing a decision aid to support informed family planning decisions for parents of children with a rare genetic condition (DECIGEN)



  • Contact name

    Hilary Piercy

  • Contact email

  • Duration of Study in the UK

    2 years, 0 months, 0 days

  • Research summary

    The newborn screening programme detects rare genetic conditions in babies. When this occurs, as well as dealing with the diagnosis and what that means for their child, parents have to make family planning decisions. Those decisions are complex for two reasons. Firstly because they are made up of a large number of decision steps, each of which involves a range of options. Secondly because the acceptability of those options will be informed by the personal experience, attitudes and values of both parents and shaped by family, social and cultural influences.
    Decision aids in health care are designed to help people make informed decisions and make deliberate choices between different options that are available to them. They have been developed in relation to a number of different health conditions and situations. The evidence indicates that they can be particularly helpful for those decisions where people may be very uncertain about the options they should choose. They can also be useful in assisting people to negotiate with healthcare providers to access the services they require.
    This project aims to develop a decision aid to assist parents in making family planning decisions. It involves gaining a detailed understanding of the complexity of reproductive decision making process for parents in this situation and identifying how a decision aid could best assist the process. In order to this we will conduct interviews with healthcare professionals, and parents.

    The findings from the study are expected to inform subsequent work developing a prototype decision aid.

  • REC name

    Yorkshire & The Humber - Leeds West Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    25 Mar 2015

  • REC opinion

    Further Information Favourable Opinion