Table 2 Assessing the impact of recontact and disclosure (n = 10 participants)

Per-person comprehension of results^a (% answered correctly)

82% (26%)

20–100%

 Name of participant’s condition

8 (80%)

–

 Name of gene associated with condition

9 (90%)

–

 Type of inheritance pattern

6 (60%)

–

 Inheritance risk to biological siblings

9 (90%)

–

 Inheritance risk to children

9 (90%)

–

Letter satisfaction^b

4.2 (0.7)

3.0–5.0

 Information about research pathogenic variant

4.1 (0.8)

3.0–5.0

 Family member implications

4.4 (0.5)

4.0–5.0

 Resources provided

4.1 (0.8)

3.0–5.0

 Letter length

4.2 (0.7)

3.0–5.0

 Readability of letter

4.1 (0.8)

3.0–5.0

Genetic counseling satisfaction^b

4.4 (0.4)

3.3–5.0

 Empathy demonstrated

4.7 (0.7)

3.0–5.0

 Facilitated the decision-making process

4.7 (0.5)

4.0–5.0

 Reassured

3.7 (0.8)

2.0–5.0

 Appointment duration

4.0 (0.7)

3.0–5.0

 Concern demonstrated

4.7 (0.5)

4.0–5.0

 Appointment was valuable

4.5 (0.7)

3.0–5.0

Psychological response (FACToR score)

 Psychological distress^c

16.0 (4.2)

7.0–21.0

 Negative feelings

3.7 ± 3.4

0.0–12.0

 Uncertainty

2.0 ± 1.7

0.0–5.0

 Privacy concerns

1.7 ± 2.0

0.0–5.0

 Positive feelings

8.7 ± 3.8

0.0–12.0

Decisional satisfaction and regret

 Regret^c

11.5 (11.6)

0.0–25.0

 Information sharing^d

9 (90%)

–

 Spouse or partner

4 (40%)

–

 Children

4 (40%)

–

 Siblings

4 (40%)

–

 Physician/cardiologist

3 (30%)

–

 Parents

2 (20%)

–

 Other (i.e., relatives, friends, etc.)

3 (30%)

–