Informed Consent Process in Alpha-1 Testing of At-Risk Children: Views of Parents and Adults Tested as Children

Figures & data

Table 1  Frequencies for each response identified as one of top three reasons for testing, and p-value comparing parent and ATC responses

	Parent (n = 79)	Adult tested as children (n = 25)	p-value
Parent wanted to know child's status	57  (72%)	22  (88%)	0.18
Test results help planning for future	43  (54%)	10  (40%)	0.30
Parent is a carrier	42  (53%)	11  (44%)	0.57
Parent found out about confidential testing	14  (18%)	4  (16%)	0.92
Child was symptomatic	12  (15%)	3  (12%)	0.94
Parent wanted earlier treatment for child	12  (15%)	1  (4%)	0.37
Parent recently diagnosed with Alpha-1	12  (15%)	10  (40%)	0.02
Parent wanted to help prevent child from smoking	10  (13%)	3  (12%)	0.79
Parent had worsening symptoms	5  (6%)	1  (4%)	0.95

Table 2  Listed below are frequencies and percentages in each category and p-value comparing parent and ATC

	Parent (n = 79)	Adult tested as child (n = 25)	p-value
When should child be tested? (multiple responses possible)
Under no circumstances	3  (4%)	0  (0%)	1.00
Prenatal screening	19  (24%)	4  (16%)	0.57
Child at risk, no symptoms, < age 8	48  (61%)	5  (20%)	0.001
Child is at risk, no symptoms, ≥ age 8	38  (48%)	10  (40%)	0.63
Child has symptoms	37  (47%)	2  (8%)	0.001
Don't know, no response	6  (8%)	4  (16%)	0.39
View of newborn screening programs			0.04
Very unfavorably	11  (14%)	1  (4%)
Somewhat unfavorably	6  (8%)	4  (16%)
No opinion	5  (6%)	7  (28%)
Somewhat favorably	25  (32%)	7  (28%)
Very favorably	30  (38%)	6  (24%)
No response	2  (3%)	0
How should children be involved in decision?			0.007
Tell child and ask permission	24  (30%)	15  (60%)
Tell child about test, don't ask permission	40  (51%)	6  (24%)
Don't tell child about test until older	9  (11%)	0
No opinion	7  (9%)	4  (16%)

Table 3  Listed are frequencies and percentages for parents’ responses regarding information and experience with testing their at-risk child

	What I was told when considering testing	What I personally experienced
Test results may affect access to health, life, and/or disability insurance.	38/74  (51%)	19/72  (12%)
Better understanding of family's genetics.	61/74  (82%)	66/74  (89%)
Genetic testing may entail an increase in anxiety.	35/75  (47%)	33/74  (45%)
Alpha-1 is a genetic condition that is associated with lung and/or liver disease	66/76  (87%)	——-
Alpha-1 testing should change cigarette smoking behavior	58/76  (76%)	——
Knowing my Alpha-1 results can help understand health risks and plan for the future.	66/75  (88%)	59/70  (84%)
Alpha-1 results may impact career choice or career opportunities.	33/74  (45%)	23/71  (32%)

Table 4  Listed are frequencies and percentages for ATC's responses regarding what children and parents should be told before testing

	What children from 8–18 years be told before testing	What parents should be told before testing
Test results may affect access to health, life, and/or disability insurance.	15/24  (62%)	20/24  (83%)
Better understanding of family's genetics.	20/24  (83%)	21/24  (88%)
Genetic testing may entail an increase in anxiety.	10/24  (42%)	20/24  (83%)
Alpha-1 is a genetic condition that is associated with lung and/or liver disease	22/24  (92%)	22/24  (92%)
Alpha-1 testing should change cigarette smoking behavior	23/24  (98%)	22/24  (92%)
Knowing my Alpha-1 results can help me understand health risks and plan for the future.	22/24  (92%)	23/24  (96%)
Alpha-1 results may impact career choice or career opportunities.	13/24  (54%)	20/24  (83%)

Table 5  Listed are row percentages in each category for experienced and possible benefits, comparisons of experienced vs. possible for each group, and comparison of experienced/possible benefits for parent vs. ATC

	Experienced benefit	Possible benefit	Experienced vs.
	N –R –O –A %	N –R –O –A %	Possible p-value
Leads to early treatment
Parent	31 4 24 40	0 0 31 69	<.001
ATC	54 8 17 21	8 0 40 52	0.038
Parent vs. ATC p-value	0.13	0.036
Child avoids smoking other environmental hazards
Parent	18 6 32 44	0 4 48 48	0.030
ATC	25 21 42 21	0 4 64 32	0.22
Parent vs. ATC p-value	0.15	0.39
Parents, relatives, friends change smoking habits
Parent	26 19 33 23	0 14 45 40	0.001
ATC	32 24 40 4	0 28 60 12	0.11
Parent vs. ATC p-value	0.18	0.018
Helps with planning for future
Parent	18 0 27 55	3 1 32 64	0.05
ATC	12 12 36 40	0 8 48 44	0.40
Parent vs. ATC p-value	0.031	0.11
Improve family relationships
Parent	34 21 32 14	8 27 39 26	<.001
ATC	29 38 29 4	12 32 44 12	0.29
Parent vs. ATC p-value	0.33	0.50

*Never –Rarely –Often –Always.

Table 6  Listed are row percentages in each category for experienced and possible downsides, comparisons of experienced vs. possible for each group, and comparison of experienced/possible risks for parent vs. ATC

	Experienced risk	Possible risk	Experienced vs.
	N –R –O –A %	N –R –O –A %	Possible p-value
Child experiences stigma/labeling
Parent	75 19 6 0	32 49 18 1	<.001
ATC	74 26 0 0	26 61 13 0	0.005
Parent vs. ATC p-value	0.60	0.76
Child experiences anxiety
Parent	49 43 8 0	17 53 27 3	<.001
ATC	48 35 17 0	9 61 30 0	0.029
Parent vs. ATC p-value	0.37	0.79
Child regrets testing
Parent	78 19 3 0	36 53 9 1	<.001
ATC	87 13 0 0	22 70 9 0	0.002
Parent vs. ATC p-value	0.74	0.53
Child blames parent for passing on alpha-1
Parent	77 19 4 0	24 53 21 1	<.001
ATC	65 26 9 0	22 43 30 4	0.030
Parent vs. ATC p-value	0.42	0.56
Child experiences negative impact on romantic relationships
Parent	81 19 0 0	35 58 4 1	<.001
ATC	74 17 9 0	30 57 13 0	0.019
Parent vs. ATC p-value	0.10	0.61
Problems getting health insurance for child
Parent	71 14 8 7	16 31 41 12	<.001
ATC	74 13 0 13	4 35 43 17	0.014
Parent vs. ATC p-value	0.52	0.52
Parents experience anxiety
Parent	34 21 27 18	17 21 44 17	0.09
ATC	39 17 35 9	4 35 48 13	0.23
Parent vs. ATC p-value	0.74	0.32
Test results worsen family relationships
Parent	79 18 1 1	47 47 5 1	<.001
ATC	83 17 0 0	39 57 4 0	0.012
Parent vs. ATC p-value	1.00	0.84

*Never –Rarely –Often –Always.