Hemophilia A: Experiences And Attitudes Of Mothers, Sisters, And Daughters

Abstract

The aim of the investigation described was to study experiences and views about hemophilia, genetic counseling, carrier testing, and termination of pregnancy among first-degree female relatives of Finnish hemophilia A patients. Altogether, 167 women participated in the study, which was carried out by a mailed multiple-choice questionnaire. For comparison, a copy of the questionnaire was asked to be given to the spouse. Hemophilia was considered a serious disease. Most women knew well their risk of carrieship and of having an affected son. Hemophilia was considered a slightly more acceptable reason for abortion than poor social circumstances. In case of an affected male fetus, 16% of the women would definitely terminate the pregnancy. The majority of participants wished to hear the genetic counselor's view on family planning and termination of pregnancy. The opinions of the spouses were concordant with those of the women.

Key Words:

• carrier testing
• genetic counseling
• hemophilia A
• termination of pregnancy