Table 1.
Characteristics of included articles.
| Reference | First Author & Year of Publication | Methods | Participants* | Sample Size | Output(s) | Objective(s) of Public Engagement |
|---|---|---|---|---|---|---|
| Patients | ||||||
| [58] | Hoffman-Andrews et al. [58] | Interviews | US; Adults with a diagnosis of Leber congenital amaurosis (LCA) or Retinitis Pigmentosa (RP) | N = 17 | In-depth reasoning | Hearing a variety of voices |
| [37] | Hollister et al. [37] | Survey & Focus groups | US; Individuals (18 + ) with Sickle Cell Disease (SCD), parents of individuals with SCD | N = 87 | Various outputs | Hearing a variety of voices |
| [30] | Snure Beckman et al. [30]a | Interviews | US; Parents of living or deceased children diagnosed with full or mosaic trisomy 21, 18, or 13 | N = 27 | In-depth reasoning | Hearing a variety of voices |
| [31] | Elliott et al. [31]b | Interviews | US; Parents of living or deceased children diagnosed with full or mosaic trisomy 21, 18, or 13 | N = 27 | In-depth reasoning | Hearing a variety of voices/ Informing policy making |
| [60] | Van Dijke et al. [60] | Interviews | The Netherlands; High-risk couples (different inheritance patterns and having a living or deceased child with a genetic condition) or one of the parents being a carrier of an inherited autosomal dominant disorder. | N = 25 | In-depth reasoning | Hearing a variety of voices/ Informing policy making |
| [61] | Geuverink et al. [61] | Interviews | The Netherlands; Carriers of various inherited autosomal dominant disorders | N = 10 | In-depth reasoning | Hearing a variety of voices |
| [59] | Neuhausser et al. [59] | Survey | US; Patients at a university affiliated infertility practice | N = 172 (in 2021) & 469 (in 2018) | Level of acceptance | Insight into public attitude forming |
| Public | ||||||
| [29] | McCaughey et al. [29]a | Survey | 185 countries | N = 12,562 | Various outputs | Insight into public attitude forming |
| [28] | McCaughey et al. [28]b | Survey | 185 countries | N = 3935 | Various outputs | Insight into public attitude forming/ Monitor or increase public knowledge or support/ Informing policy making |
| [36] | Scheufele et al. [36]a | Survey | US | N = 1600 | Level of acceptance | Insight into public attitude forming |
| [35] | Howell et al. [35]b | Survey | US | N = 1484 | Level of acceptance | Insight into public attitude forming |
| [34] | Eichmeier et al. [34]c | Survey | US | N = 1600 | Level of acceptance | Insight into public attitude forming |
| [55] | Gaskell et al. [55] | Survey |
Austria, Denmark, Germany, Hungary, Iceland, Italy, the Netherlands, Portugal, Spain, UK (EEA-10 countries) & the United States |
N = 11,716 | Various outputs | Monitor or increase public knowledge or support/ Informing policy making |
| [41] | Weisberg et al. [41] | Survey | US | N = 2493 | Level of acceptance | Insight into public attitude forming/ Monitor or increase public knowledge or support/ Informing policy making |
| [47] | Hendriks et al. [47] | Survey | The Netherlands | N = 1013 | Various outputs | Insight into public attitude forming |
| [50] | Treleaven and Tuch [50] | Focus groups | Australia | N = 46 | Level of acceptance | Informing policy making |
| [51] | Critchley et al. [51] | Survey | Australia | N = 1004 | Level of acceptance | Insight into public attitude forming |
| [42] | Riggan et al. [42] | Focus groups | US | N = 50 | In-depth reasoning | Hearing a variety of voices/ Insight into public attitude forming/ Informing policy making |
| [38] | Kaur [38] | Survey | UK | N = 521 | Various outputs | Hearing a variety of voices |
| [56] | Jedwab et al. [56] | Survey | 67 countries; Majority from US, Australia, Canada, UK, | N = 1537 | Level of acceptance | Hearing a variety of voices/ Insight into public attitude forming/ Informing policy making |
| [39] | Schuijff et al. [39] | Survey & Focus groups | The Netherlands | N = 30 | Various outputs | Insight into public attitude forming/ Informing policy making |
| [48] | Van Dijke et al. [48] | Survey | The Netherlands | N = 1136 | Level of acceptance | Insight into public attitude forming/ Informing policy making |
| [54] | So et al. [54] | Survey | US & Canada | N = 400 | Various outputs | Insight into public attitude forming |
| [43] | McFadden et al. [43] | Focus groups | US | N = 64 | In-depth reasoning | Insight into public attitude forming |
| [44] | Chen and Zhang [44] | Survey | US | N = 2105 | Level of acceptance | Insight into public attitude forming |
| [57] | Busch et al. [57] | Survey | Canada, US, Austria, Germany, Italy | N = 3698 | Level of acceptance | Insight into public attitude forming/ Informing policy making |
| [49] | Houtman et al. [49] | Survey | The Netherlands | N = 2795 | Various outputs | Hearing a variety of voices/ Informing policy making |
| [52] | Thaldar et al. [52] | Survey & Deliberations | South Africa | N = 29 | Various outputs | Informing policy making |
| [32] | Akatsuka et al. [32]a | Survey | Japan | N = 4424 | Level of acceptance | Hearing a variety of voices |
| [33] | Sawai et al. [33]b | Survey | Japan | N = 4424 | Level of acceptance | Hearing a variety of voices/ Insight into public attitude forming |
| [45] | Halstead et al. [45] | Survey | US | N = 4726 | Level of acceptance | Insight into public attitude forming/ Informing policy making |
| [53] | Macall et al. [53] | Survey | Costa Rica | N = 1096 | Level of acceptance | Hearing a variety of voices |
| [40] | Jibrilla et al. [40] | Survey | Nigeria | N = 188 | Level of acceptance | Informing policy making |
| [46] | Nelson et al. [46] | Focus groups | US | N = 32 | In-depth reasoning | Hearing a variety of voices/ Informing policy making |
| Public & Patients | ||||||
| [62] | Uchiyama et al. [62] | Survey | Japan; General public & adult patients who indicated that their disease conditions were related to their “genetic makeup” | N = 10,881 (general public) N = 1044 (patients) | Level of acceptance | Hearing a variety of voices/ Insight into public attitude forming |
| [63] | Van Baalen et al. [63] | Dialogues | The Netherlands; General public & (child) patients and their family members |
N = 804 (general public) N = 20 ((child) patients and family) |
In-depth reasoning | Hearing a variety of voices/ Informing policy making |
* “experts” not included.
abcEngagement studies based on the same sample: Three engagement studies were reported on two times, and one engagement study was reported on three times answering different research questions.