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2.
J Community Genet ; 14(4): 371-375, 2023 Aug.
Article de Anglais | MEDLINE | ID: mdl-37326787

RÉSUMÉ

Given the potential large ethical and societal implications of human germline gene editing (HGGE) the urgent need for public and stakeholder engagement (PSE) has been repeatedly expressed. In this short communication, we aim to provide directions for broad and inclusive PSE by emphasizing the importance of futures literacy, which is a skill to imagine diverse and multiple futures and to use these as lenses to look at the present anew. By first addressing "what if" questions in PSE, different futures come into focus and limitations that arise when starting with the "whether" or "how" questions about HGGE can be avoided. Futures literacy can also aid in the goal of societal alignment, as "what if" questions can be answered in many different ways, thereby opening up the conversation to explore a multitude of values and needs of various publics. Broad and inclusive PSE on HGGE starts with asking the right questions.

3.
Trends Biotechnol ; 41(6): 727-730, 2023 06.
Article de Anglais | MEDLINE | ID: mdl-36963984

RÉSUMÉ

To share our lessons learned from using art and design to start public dialogue concerning genomics, we co-created a course called 'Art & Genomics', together with designers Bertrand Burgers and Mirte de Wit. Here, we aim to share our tips for any scientist who wants to harness creative design to trigger public engagement, illustrated by student experiences as well as our own.

4.
Eur J Hum Genet ; 31(4): 409-416, 2023 04.
Article de Anglais | MEDLINE | ID: mdl-35551502

RÉSUMÉ

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.


Sujet(s)
Attitude , Édition de gène , Humains , Génome humain , Cellules germinales , ADN
6.
CRISPR J ; 4(4): 616-625, 2021 08.
Article de Anglais | MEDLINE | ID: mdl-34406039

RÉSUMÉ

For years, calls for public involvement in the debate concerning the acceptability of human germline genome editing (HGGE) have been made. A multidisciplinary consortium of 11 organizations in the Netherlands organized a broad societal dialogue to inquire about the views of Dutch society toward HGGE. The project aimed to reach a wide and diverse audience and to stimulate a collective process of deliberative opinion forming and reflection. To that end, several instruments and formats were developed and employed. We present the results of 27 moderated dialogues organized between October 2019 and October 2020. Overall, participants of the dialogues were capable of assessing and discussing the subject of HGGE in a nuanced way. Analysis of these dialogues shows that in general, participants had no fundamental and absolute objections toward HGGE technology. However, they only deemed HGGE to be acceptable when it is used to prevent serious heritable diseases and under strict conditions, without affecting important (societal) values. There was a small group of participants who found HGGE fundamentally unacceptable because it would cross natural, socio-ethical, or religious boundaries.


Sujet(s)
Édition de gène , Génome humain , Cellules germinales , Opinion publique , Éthique de la recherche , Humains , Communication interdisciplinaire , Pays-Bas , Recherche , Enquêtes et questionnaires
7.
EMBO Rep ; 22(8): e52988, 2021 08 04.
Article de Anglais | MEDLINE | ID: mdl-34269513

RÉSUMÉ

Even if the predominant model of science communication with the public is now based on dialogue, many experts still adhere to the outdated deficit model of informing the public.


Sujet(s)
Communication , Humains
8.
Trends Biotechnol ; 39(7): 641-643, 2021 07.
Article de Anglais | MEDLINE | ID: mdl-33413984

RÉSUMÉ

Genomics professionals and the general public have a responsibility to bridge the gap between science and society. The general public has a responsibility to deliberate, as their choices not only impact themselves but also shape society. Conversely, genomics professionals have a responsibility to enable the process of opinion formation.


Sujet(s)
Génomique , Diffusion de l'information , Prise de décision , Génomique/éthique , Humains , Diffusion de l'information/éthique , Opinion publique
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