Table 2 Parent survey—list of statements influencing choice for study participation

Reasons for consent to NBS study participation

 a

I would like to know that my child is healthy

24%

 b

Screening is free

92%

 c

Screening offers early detection and treatment of potential abnormal conditions

24%

 d

The potential benefit to my child

12%

 e

Other reason(s)

2%

Reasons for choice to participate in NBS study

 a

I knew the choices available to me

4%

 b

I knew the benefits and risks of each choice

21%

 c

I was clear about which choice was more important to me

21%

 d

I had enough support from others to make a choice (others could be family, friends, healthcare provider)

31%

 e

I chose without pressure from others

43%

 f

I was clear about the best choice for my baby

43%

 g

I felt sure about what to choose

10%

 h

This decision was easy for me

24%

 i

I am satisfied with my decision

18%

Reasons for decline to NBS study participation

 a

I prefer not to know if my child has a condition

0%

 b

The results may not be accurate

0%

 c

I do not wish my child to be pricked or have blood taken

50%

 d

The thought of my child being experimented on

0%

 e

I do not understand the purpose of newborn screening

40%

 f

I do not think newborn screening is important

10%

 g

Baby’s father or family member does not want baby to participate in the study

0%

 h

Other reason(s).____

0%