4.5 Article

Exploring informed choice in preconception reproductive genetic carrier screening by using a modified Multidimensional Measure of Informed Choice

Journal

PATIENT EDUCATION AND COUNSELING
Volume 105, Issue 11, Pages 3313-3318

Publisher

ELSEVIER IRELAND LTD
DOI: 10.1016/j.pec.2022.07.014

Keywords

Reproductive genetic carrier screening; Informed choice; Decisional conflict; Attitudes; Perspectives

Funding

  1. Research Fund Flanders (FWO)
  2. [G094518N]

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A study found that nearly half of the global electricity generation in May came from renewable energy sources, with solar and wind energy accounting for over 90% of the total renewable electricity generation.
Objectives: To explore informed choice in reproductive genetic carrier screening (RGCS). Methods: Women visiting a gynaecologist practice in Flanders (Belgium) were asked to consider participation in a study where RGCS was offered for free to them and their male partner. A modified Multidimensional Measure of Informed Choice was used to determine whether couples who opted for RGCS made an informed choice. In addition, we assessed risk perception, feelings towards RGCS, anxiety and decisional conflict. Results: Most participants (82 %, n = 63/77) made an informed choice with regard to RGCS according to our modified MMIC. Thirteen participants made an uninformed choice due to insufficient knowledge and one participant because of insufficient knowledge and value-inconsistency. Anxiety scores were elevated for three participants. Two participants presented with decisional conflict. Conclusion: Our results show high rates of informed choice among non-pregnant couples who were offered RGCS in a research study and received up to 30 min of pre-test counseling. Practice implications: Limited resources outside a research context may impact informed choice. Pre-test counselling initiatives for RGCS should ideally be organized in such a way that information can be provided at multiple time points to avoid information overload and to allow for a reflection period.

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