Table 1 Demographics of interviewees (n = 16)

From: Views of rare disease participants in a UK whole-genome sequencing study towards secondary findings: a qualitative study

 

n

%

Gender

Male

7

44

Female

9

56

Affected

Yes

5

31

No (parent)

11

69

Ethnicity

White British

16

100

Education

to 16

2

13

to 18

2

13

Degree

6

38

Post degree

6

38

Age

Under 20

1

6

20–50

9

56

50–70

5

31

Over 70

1

6

Disease area a

Cardiology

5

31

Neurology

7

44

Clinical Genetics

4

25

Primary result

Positive

4

25

Negative

3

19

No result yet

9

56

  1. aCardiology cases include cardiomyopathies and congenital heart disease; neurology cases include epilepsies, hereditary spastic paraplegia, and chronic inflammatory demyelinating polyneuropathy (CIDP); clinical genetics cases include arthrogryposis and osteogenesis imperfecta.
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