Table 2.

Statements regarding perceived benefits of and barriers against ECS and freedom-of-choice statements.

	Parentsa	Relativesb	Referencec
	n = 58	n = 101	n = 781
	%	%	%	p
A. Perceived benefits of ECS
Offering the carrier test avoids much suffering for the entire family	88	86	68	<0.001
The carrier test can avoid suffering for future parents	86	86	67	<0.001
The carrier test can prevent costs for the family	52	57	57	0.702
The carrier test can prevent costs for the society	60	59	49	0.045
The results of a carrier test can help in choosing a partner	3	11	7	0.211
B. Perceived barriers against ECS
The carrier test creates too high expectations of the birth of a healthy child	35	34	44	0.068
Offering a carrier test leads to anxiety	19	21	39	<0.001
The carrier test will be the first step in developing a perfect child	16	20	32	0.003
Offering the carrier test can cause people to feel forced to undergo testing	7	16	29	<0.001
I am afraid of discrimination by carriers (for instance, by insurance companies and the social environment)	12	11	23	0.003
C. Freedom-of-choice statements
The carrier test should be offered to every couple that wants to have children	66	65	55	0.052
Every couple that wants to have children must take the carrier test	35	39	22	<0.001

Questionnaire part III: Agreement on statements.

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].