Abstract
Being raised in the genomic era may not only increase knowledge of available genetic testing but may also have an impact on how genetic information is perceived. However, little is known about how current adolescents react to the language commonly used by health care professionals providing prenatal counseling. In addition, as risk communication is related to numbers and figures, having different educational backgrounds may be associated with variability in risk perceptions. In order to investigate these issues, a previously developed questionnaire studying different ways of being told about hypothetical anomalies in a baby and corresponding risks (Abramsky and Fletcher Prenatal Diagnosis 22(13):1188–1194, 2002) was administered to high-school students in Sweden. A total of 344 questionnaires were completed by students belonging to a natural science or a social science program. The data show that teenage participants found technical jargon and words such as rare and abnormal more worrying than the presented comparison terms. Negative framing effects and perception differences related to numeric risk formats were also present. Additionally, participants’ gender and educational program did not seem to have an effect on risk assessment. In addition to reporting the questionnaire results, we discuss the ethical implications of the data based on the norm of non-directiveness and make some recommendations for practice. In general, genetic counselors should be aware that the language used within clinical services can be influential on this group of upcoming counselees.
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Acknowledgements
We would first like to thank all high school principals who welcomed the study, all teachers/mentors who were willing to provide time from their lessons for questionnaire completion and, of course, all the students who participated and made this study possible. Philippe A. Melas is funded by the Bodossaki Foundation and the Karolinska Institutet’s funding for doctoral students (KID). None of these funding sources were involved in the study design, data collection/analysis or manuscript writing/submission. With regard to the use and reproduction of the questionnaire, we want to acknowledge the licensed content authors (Lenore Abramsky and Olivia Fletcher) and the license content publisher/publication (John Wiley and Sons/Prenatal Diagnosis) for granting us the appropriate licenses and permissions. We also thank Dr. Charlotta Ingvoldstad for providing critical feedback on the manuscript.
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Appendices
Appendix
RISK COMMUNICATION IN PRENATAL DIAGNOSIS
Introduction
An important aspect in medical nursing is risk communication. When a couple is planning to have a baby and wants to get informed about genetic diseases and hereditary abnormalities that can influence the pregnancy, they meet with a so-called ‘genetic counselor’. During such a meeting, called counseling in prenatal diagnosis, the genetic counselor’s choice of words and phrases can have influence on how the couple perceives an estimated risk or situation. This can afterwards determine the couple’s decision; for example regarding an abortion.
The questionnaire you are holding in your hands aims at studying this risk perception through a series of statements that directly (or indirectly) relate to medical words and risk estimates. You are the future parent of the next generation and that makes your participation even more important.
Instructions
Please read through all the questions and circle the answer that relates best to your opinion.
If none of the answers is in accordance with your beliefs, please choose the alternative that lies closest to your opinion so that you don’t leave any question unanswered.
There are no correct or wrong alternatives, so just answer impulsively and without a lot of thinking.
Your answers are anonymous and the participation voluntary.
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Melas, P.A., Georgsson Öhman, S., Juth, N. et al. Information Related to Prenatal Genetic Counseling: Interpretation by Adolescents, Effects on Risk Perception and Ethical Implications. J Genet Counsel 21, 536–546 (2012). https://doi.org/10.1007/s10897-011-9418-1
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DOI: https://doi.org/10.1007/s10897-011-9418-1