‘Your DNA, Your Say’: Global Survey Gathering Attitudes Toward Genomics: Design, Delivery and Methods

Abstract

Our international study, 'Your DNA, Your Say', uses film and an online cross-sectional survey to gather public attitudes toward the donation, access and sharing of DNA information. We describe the methodological approach used to create an engaging and bespoke survey, suitable for translation into many different languages. We address some of the particular challenges in designing a survey on the subject of genomics. In order to understand the significance of a genomic result, researchers and clinicians alike use external databases containing DNA and medical information from thousands of people. We ask how publics would like their 'anonymous' data to be used (or not to be used) and whether they are concerned by the potential risks of reidentification; the results will be used to inform policy.

Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

“…While intentions are one potential predictor of behaviour, further work is needed to document what people actually do when faced with opportunities to donate data [41]. Generic limitations of the study and online survey design have been published separately [19]. Our findings should not be extrapolated to indicate views of all people from the USA, Canada, the UK and Australia, particularly the older population who may differ in respect of their willingness to donate and beliefs about the uniqueness of genetic information.…”

“…Details of the study design, methodology, recruitment and data collection are published separately, as is a review of the context and background of this project [19][20][21].…”

The New Genomics Era: Integration of genomics into mainstream oncology and implications for psycho‐oncological care

“…Healthcare professionals should be mindful of responsible use of language; for example, referring to a “genomics revolution” could raise young patients' anxiety and bring to mind dystopian science fiction films rather than positive feelings about the promise of genomics medicine. Large‐scale efforts have begun to address public perception and ask lay people how they understand and want to learn about genomics . Lay individuals generally support use of genetic information and testing to improve prevention, diagnosis, and treatment of disease .…”

“…Large-scale efforts have begun to address public perception and ask lay people how they understand and want to learn about genomics. 34,35 Lay individuals generally support use of genetic information and testing to improve prevention, diagnosis, and treatment of disease. 36 However, most studies to date are theoretical and sampled highly educated people.…”

Sharing Genomic Data From Clinical Testing with Researchers: Public Expectations of Clinical Genomic Data Management in Queensland, Australia.

“…Questions related to preferences for genomic data sharing (Q12 to Q14) are based on the categories and options used by the Australian Genomics Health Alliance CTRL platform for dynamic consent (19), which were derived from the Global Alliance for Genomic and Health's Data Use Ontology technical standard (20). Response options provided for concerns about genomic data sharing were based on a previous international public survey (21,22), and then modified for this study's purpose based on feedback from consumer representatives and expert community members.…”