Abstract
Genetic counselors and parents of individuals with Down syndrome (DS) agree that descriptions of DS in prenatal settings should be “balanced.” However, there is no consensus regarding what constitutes a balanced description of DS. A survey was designed in collaboration with, and sent to the membership of, the British Columbia based Lower Mainland Down Syndrome Society (N = 260). Respondents were asked how they would describe DS to a couple who have just received a prenatal diagnosis of the condition. We rated the descriptions provided for positivity/negativity. Completed surveys were returned by 101 members, the majority of whom were Caucasian (87%) and female (79%). Participants’ descriptions of DS ranged from entirely positive (n = 5; 10%) to entirely negative (n = 4; 7%) in nature. Deriving a description of DS that would broadly be perceived as “balanced” may be impossible. Instead, it may be more important to explore the range of possibilities regarding the family experience of raising a child with DS using nonjudgmental terminology, and to help families evaluate these possibilities in the context of their own values, coping strategies, and support networks.
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Notes
Previous research studies have not always distinguished between “balanced information” and a “balanced description,” and have used the two terms interchangeably. In order to allow a more nuanced discussion of the nature of “balance,” we conceptualized the term “information” as relating to the facts that are provided. While facts may seem to be neutral in and of themselves, the context and manner in which facts are communicated or articulated, in other words, the description, can be perceived to fundamentally alter this neutrality.
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Acknowledgements
This research was made possible by funding from the National Society of Genetic Counsellors Prenatal Special Interest Group, and a Rare Disease Foundation Microgrant. A. I. was a student of the University of British Columbia (UBC) MSc in Genetic Counselling program when this research was conducted. Special thanks to Rachelle Blais, the board members of the LMDSS, Theresa Preston, and the participants for taking the time to elaborate on their answers to our many questions. J. A. was supported by CIHR, the Michael Smith Foundation for Health Research, and BC Mental Health and Addictions Research Institute.
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Hippman, C., Inglis, A. & Austin, J. What is a “Balanced” Description? Insight from Parents of Individuals with Down Syndrome. J Genet Counsel 21, 35–44 (2012). https://doi.org/10.1007/s10897-011-9417-2
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DOI: https://doi.org/10.1007/s10897-011-9417-2