Table 4.
Statements regarding perceived personal consequences of ECS.
| Parentsa | Relativesb | Referencec | ||
|---|---|---|---|---|
| n = 58 | n = 101 | n = 781 | ||
| % | % | % | p | |
| A. Perceived social influences when considering ECS | ||||
| The opinion of my partner is important in making the decision about the carrier test | 79 | 78 | 89 | <0.001 |
| The opinion of my parents is important in making the decision about the carrier test | 31 | 48 | 57 | 0.002 |
| The opinion of my family is important in making the decision about the carrier test | 22 | 40 | 25 | 0.007 |
| The opinion of my friends is important in making the decision about the carrier test | 12 | 10 | 21 | 0.015 |
| The opinion of my religious community is important in making the decision about the carrier test | 7 | 1 | 5 | 0.153 |
| B. Considerations regarding test results of ECS | ||||
| I would find it difficult if my child would be affected by one of the 50 disorders | 81 | 94 | 77 | <0.001 |
| The results of a carrier test can help me in making decisions about having children | 81 | 82 | 55 | <0.001 |
| If I do not participate, I am afraid I will regret it if my child is affected with one of the 50 disorders | 62 | 73 | 49 | <0.001 |
| Offering a carrier test takes away the spontaneity of having children | 29 | 29 | 44 | 0.002 |
| If I do not participate, I am afraid I will regret it later | 57 | 69 | 43 | <0.001 |
| C. Perceived consequences as a carrier (couple) | ||||
| By preventing the birth of child with a severe hereditary disorder, a lot of suffering can be prevented | 83 | 75 | 64 | 0.002 |
| It is important that the birth of a child with a severe hereditary disorder can be prevented | 81 | 80 | 61 | <0.001 |
| If I were a carrier, I would find it difficult to inform my family members about their increased risk of being a carrier | 29 | 22 | 38 | 0.004 |
| I am afraid people will look differently at me when they know I am a carrier | 14 | 15 | 24 | 0.027 |
| I would feel less healthy as a carrier | 3 | 7 | 32 | <0.001 |
| D. Perceived reproductive choices as a carrier couple | ||||
| I would consider an examination of the fetus during pregnancy (prenatal testing by chorionic villus sampling) | 83 | 83 | 64 | <0.001 |
| I find it important that carrier couples can prepare themselves for the birth of a child with a severe hereditary disorder | 81 | 85 | 79 | 0.297 |
| As part of a carrier couple, I would consider in vitro fertilization (IVF) with embryo selection | 59 | 50 | 39 | 0.002 |
| If my partner and I are a carrier couple, I would decide not to have (more) children | 22 | 36 | 35 | 0.141 |
| I would take the risk and not take any action (the child is born as he or she is) | 26 | 20 | 34 | 0.009 |
| I would consider termination of the pregnancy if the child is affected with one of the 50 disorders | 57 | 64 | 42 | <0.001 |
| I am against abortion of a child with one of these 50 disorders | 24 | 17 | 22 | 0.426 |
Questionnaire part V and VI: Agreement on statements in order of frequency.
Significant differences at p < 0.05 are printed in bold.
aIndividual parents (mothers and fathers) of MPS III patients, both deceased and alive.
bFirst and second degree family members of MPS III patients.
cReproductive-aged people from the general Dutch population [19].