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  • 1.
    Georgsson, Susanne
    et al.
    Sophiahemmet Högskola / Karolinska Institutet.
    Sahlin, Ellika
    Karolinska Institutet.
    Iwarsson, Moa
    Karolinska Intitutet.
    Nordenskjöld, Magnus
    Karolinska Institutet.
    Gustavsson, Peter
    Karolinska Institutet.
    Iwarsson, Erik
    Karolinska Institutet.
    Knowledge and attitudes regarding non-invasive prenatal testing (NIPT) and preferences for risk information among high school students in Sweden2017In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 26, no 3, p. 447-454Article in journal (Refereed)
    Abstract [en]

    Non-invasive prenatal testing (NIPT) was recently introduced for prenatal testing of genetic disorders. Cell-free fetal DNA is present in maternal blood during pregnancy and enables detection of fetal chromosome aberrations in a maternal blood sample. The public perspective to this new, simple method has not been illuminated. The views of young people (i.e. future parents) are important to develop suitable counseling strategies regarding prenatal testing. The aim was to explore Swedish high school students' attitudes, knowledge and preferences regarding NIPT. A questionnaire was completed by 305 students recruited from one high school in Stockholm, November and December 2014. Most students (80 %) considered prenatal testing as good. The majority (65 %) was positive or very positive towards NIPT and 62 % stated that they potentially would like to undergo the test if they or their partner was pregnant. The vast majority (94 %) requested further information about NIPT. Most students (61 %) preferred verbal information, whereas 20 % preferred information via the Internet. The majority of the high school students was positive towards prenatal testing and most was positive towards NIPT. Further, information was requested by the vast majority before making a decision about NIPT. Most of the students preferred verbal information and to a lesser extent information via the Internet. The attitudes, knowledge and preferences for risk information concerning NIPT in young adults are important, in order to increase knowledge on how to educate and inform future parents.

  • 2.
    Melas, Philippe A
    et al.
    Karolinska Institutet.
    Georgsson Öhman, Susanne
    Karoliska Institutet / Sophiahemmet Högskola.
    Juth, Niklas
    Karolinska Institutet.
    Bui, The-Hung
    Karolinska University Hospital.
    Information related to prenatal genetic counseling: interpretation by adolescents, effects on risk perception and ethical implications2012In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 21, no 4, p. 536-546Article in journal (Refereed)
    Abstract [en]

    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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