Results of telephone interview with seven mothers who did not respond to letter or questionnaire
| Why did the mothers not reply? |
|---|
| One mother said that she did not receive the questionnaire |
| Two mothers did not like the questionnaire |
| One mother was angry about the questionnaire, because it brought back bad memories (her affected son had died) |
| One mother forgot to post the questionnaire |
| Two mothers said that there were many very personal questions, which made them reluctant to reply |
| What did the mothers think about carrier testing? |
| Two mothers said that it might not be a good idea to test children |
| Four mothers thought carrier testing was a good idea |
| One mother was disappointed because carrier status remained unresolved |
| What was the test result? |
| 6/11 non-carrier |
| 4/11 carrier |
| 1/11 uncertain |
| How many young female subjects tested in this group had not been told about their test result |
| Of 11 young female subjects tested, 6 had not been told the results of their test |