Table 2.

Sample Questionnaire Items

Are you able to talk about having sickle cell disease/trait with a partner? Are you able to talk with your partner about him/her having sickle cell disease or trait? How likely is it that you will accept the risk of having a child with sickle cell disease or trait? How likely is it that you will choose to not have children to avoid having a child with sickle cell disease or trait? How likely is it that you will choose to having testing in pregnancy (like amniocentesis) to determine if the fetus has sickle cell disease or trait? How likely is it that you will choose to have test tube eggs or sperm that are free of sickle cell placed in your uterus (womb) to avoid sickle cell disease or trait? How likely is it that you will choose to use birth control to avoid sickle cell disease or trait? How likely is it that you will choose to have sterilization surgery (tubes tied, vasectomy) to avoid sickle cell disease or trait? How likely is that you will choose to adopt a child to avoid having a child with sickle cell disease or trait? How likely is it that you (your partner/wife) will have an abortion to avoid having a child with sickle cell disease or trait? How likely is it that you (your partner/wife) will end or terminate a pregnancy because of your (your partner/wife) health? Would you accept the risk of your sickle cell disease getting worse if you are pregnant?