| Literature DB >> 35551502 |
Diewertje Houtman1, Boy Vijlbrief1, Marike Polak2, Jacqueline Pot3, Petra Verhoef4, Martina Cornel5, Sam Riedijk6.
Abstract
Public engagement for Human Germline Genome Editing (HGGE) has often been called for, for example by the WHO. However, the impact of public engagement remains largely unknown. This study reports on public engagement outcomes in the context of a public dialogue project about HGGE in the Netherlands; the DNA-dialogue. The aim was to inquire opinions and opinion change regarding HGGE. A questionnaire was distributed on a national level (n = 2381) and a dialogue level (n = 414). The results indicate that the majority of the Dutch population agrees with the use of HGGE to prevent severe genetic diseases (68.6%), unlike the use to protect against infectious diseases (39.7%), or for enhancement (8.5%). No indications of change in these acceptance rates as a result of dialogue participation were found. The results did provide a tentative indication that participation in dialogue may lead to less negative opinions about HGGE (χ2(1) = 5.14, p = 0.023, OR = 0.56, 95% CI [0.34, 0.93]). While it was not a goal of the project to make people more accepting towards HGGE, this might be the effect of exposure to opinions that are less often heard in the global debate. We conclude that dialogue may lead to different outcomes for different people, depending on their characteristics and their entrance attitude, but does not appear to systematically direct people towards a certain opinion. The self-reported, impacts of dialogue participation included no impact, strengthening of opinion, enabling of forming a first opinion, more insight into the potential implications of HGGE, and a better understanding of other people's perspectives.Entities:
Year: 2022 PMID: 35551502 PMCID: PMC9095815 DOI: 10.1038/s41431-022-01114-w
Source DB: PubMed Journal: Eur J Hum Genet ISSN: 1018-4813 Impact factor: 5.351
Three different research settings used in this study and their sample selection.
| Setting | Description | Sample | Excluded, reason ( | Final number of participants | |
|---|---|---|---|---|---|
| Public opinion polling | Two independent samples of the Dutch population. One sample filled out the questionnaire in August 2019 (S1), the other filled out the questionnaire in April 2020, six months after the start of the DNA-dialogue project (S2). | S1 | 3024 | Incomplete (1715) | 1172 |
| Time to complete <6 min ( | |||||
| ID check fail ( | |||||
| S2 | 2385 | Incomplete (1048) | 1209 | ||
| Time to complete <6 min ( | |||||
| ID check fail ( | |||||
| Repeated cross-sectional polling | Two independent samples, one consisting of people who filled out the questionnaire without having participated in dialogue (S3) and the other consisting of people who filled out the questionnaire after they had participated in dialogue (S4). | S3 | 380 | Unknown pre- or post (93) | 277 |
| Test (3) | |||||
| Filled out during break (1) | |||||
| Duplicate (5) | |||||
| Consortium (1) | |||||
| S4 | 147 | Unknown pre- or post (45) | 97 | ||
| Test (1) | |||||
| Nonsense (1) | |||||
| Duplicate (3) | |||||
| Deliberative polling | A single sample (S5) of dialogue participants who filled out the questionnaire before they participated in a dialogue meeting and after they participated in a dialogue meeting. | S5 | 46 | Consortium (5) | 40 |
| Duplicate (1) |
Demographic characteristics for the different samples.
| Public opinion polling | Repeated cross-sectional polling | Deliberative polling | |||
|---|---|---|---|---|---|
| S1 | S2 | S3 | S4 | S5 | |
| Women, | 598 (51.0) | 652 (53.9) | 158 (57.9)d | 64 (66.0) | 28 (70.0) |
| Age, | |||||
| <18 | – | – | 3 (1.1)* | 23 (23.7)* | 1 (2.5) |
| 18–24 | 36 (3.1) | 48 (4.0) | 55 (20.0)* | 8 (8.2)* | 13 (32.5) |
| 25–34 | 96 (8.2) | 105 (8.7) | 36 (13.1) | 18 (18.6) | 3 (7.5) |
| 35–44 | 137 (11.7) | 138 (11.4) | 31 (11.3) | 5 (5.2) | 4 (10.0) |
| 45–54 | 255 (21.8) | 231 (19.1) | 41 (14.9) | 11 (11.3) | 7 (17.5) |
| 55–64 | 347 (29.6) | 335 (27.7) | 45 (16.4) | 15 (15.5) | 7 (17.5) |
| 65–75 | 301 (25.7) | 352 (29.1) | 50 (18.2) | 15 (15.5) | 5 (12.5) |
| >75 | – | – | 14 (5.1) | 2 (2.1) | 0.0 |
| Educational level, | |||||
| High | 433 (36.9) | 476 (39.4) | 176 (64.0) | 57 (58.8) | 26 (65.0) |
| Intermediate | 552 (47.1) | 573 (47.4) | 87 (31.6) | 26 (26.8) | 14 (35.0) |
| Low | 187 (16.0) | 160 (13.2) | 12 (4.4)* | 14 (14.4)* | 0 (0.0) |
| Actively religious, | 266 (22.7) | 257 (21.5)b | 136 (49.5) | 45 (46.4) | 7 (17.5) |
| Having or knowing someone with a genetic disease, | 308 (26.3) | 272 (23.1)c | 81 (29.5) | 34 (35.1) | 12 (30.0) |
| Genetic knowledge, | |||||
| High | 15 (1.3) | 19 (1.6) | 29 (10.6) | 11 (11.3) | 8 (20.0) |
| Intermediate | 151 (12.9)* | 99 (8.2)* | 82 (29.9) | 33 (34.0) | 16 (40.0) |
| Low | 1006 (85.8)* | 1091 (90.2)* | 163 (59.5)e | 53 (54.6) | 16 (40.0) |
aAll demographic characteristics were missing for n = 2.
b,c,d,eFifteen people in S2 public opinion polling did not want to disclose their religious activity. Thirty people in S2 public opinion polling did not want to disclose whether they had or knew someone with a genetic disease. Two people in S3 did not want to disclose their gender. One person in S3 did not fill out the question about genetic knowledge. These percentages were therefore reported for slightly smaller sample sizes (respectively n = 1194, n = 1179, n = 273, and n = 274).
*Significant difference between S1 and S2 or between S3 and S4.
Fig. 1Acceptance of HGGE for three potential applications of HGGE.
The three potential applications are: (1) to prevent a child from inheriting a severe muscular disease, (2) to protect against a severe infectious disease such as HIV, and (3) to increase intelligence. Percentages are depicted for the most recent public opinion poll (S2) and population estimates (calculated by means of propensity weighting).
Mean acceptance scores for three HGGE applications and t-test results for comparisons.
| Public opinion polling | Repeated cross-sectional polling | Deliberative polling | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| S1 | S2 | S3 | S4 | S5 | ||||||
| Acceptance of application for: | Range | Mean score | Mean score | Difference of means | Mean score | Mean score | Difference of means | Mean score before dialogue meeting | Mean score after dialogue meeting | Difference of means |
| Severe muscular disease | 1–5 | 3.80 | 3.83 | 0.472 | 3.65 | 3.98 | 0.025* | 4.08 | 4.08 | 1.000 |
| Infectious disease | 1–5 | 2.97 | 3.01 | 0.385 | 2.55 | 2.52 | 0.814 | 2.70 | 2.78 | 0.727 |
| Intelligence | 1–5 | 1.91 | 1.90 | 0.912 | 1.59 | 1.51 | 0.432 | 1.48 | 1.45 | 0.785 |
aAcceptance scores were missing for n = 3.
bIndependent samples t-test.
cPaired samples t-test.
*Significant difference between S1 and S2, between S3 and S4, or within S5.
Fig. 2Distributions of opinions categorized as positive, negative, mixed (positive and negative), descriptive (positive nor negative) and indeterminable (no opinion was stated).
Percentages are depicted for the most recent public opinion poll (S2) and the population estimate (calculated by means of propensity weighting).
Distributions of categorized opinions for the various samples and Chi2 and Fisher’s exact test results for comparisons.
| Percentage | |||||||||
|---|---|---|---|---|---|---|---|---|---|
| Public opinion polling | Repeated cross-sectional | Deliberative polling | |||||||
| Opinion | S1 | S2 | Chi2 | S3 | S4 | Chi2 | S5 | S5 | McNemar |
| Positive, | 137 (11.7)* | 108 (8.9)* | 0.027 | 22 (7.9) | 10 (10.3) | 0.473 | 4 (10.0) | 4 (10.0) | 1.000 |
| Negative, | 394 (33.6)* | 457 (37.8)* | 0.033 | 116 (41.9* | 28 (28.9)* | 0.023 | 7 (17.5) | 9 (22.5) | 0.727 |
| Mixed, | 232 (19.8)* | 284 (23.5)* | 0.029 | 81 (29.2) | 36 (37.1) | 0.150 | 19 (47.5) | 14 (35.0) | 0.388 |
| Descriptive, | 251 (21.4)* | 206 (17.0)* | 0.007 | 56 (20.2) | 22 (22.7) | 0.607 | 10 (25.0) | 13 (32.5) | 0.581 |
| Indeterminable, | 158 (13.5) | 154 (12.7) | 0.591 | 2 (0.7) | 1 (1.0) | 0.769c | 0 (0.0) | 0 (0.0) | – |
aBefore dialogue meeting.
bAfter dialogue meeting.
cFisher’s exact was used instead of Chi2.
*Significant difference between S1 and S2, between S3 and S4, or within S5.