Online questionnaire development: Using film to engage participants and then gather attitudes towards the sharing of genomic data

Middleton, Anna; Bragin, Eugene; Morley, Katherine I.; Parker, Michael

doi:10.1016/j.ssresearch.2013.12.004

Cited by 19 publications

(24 citation statements)

References 32 publications

(21 reference statements)

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“…Early on in the study design process we made the decision to collect our quantitative data via an online rather than postal survey (Middleton et al 2014). This meant that irrespective of the recruitment strategy employed, it would only be accessed via the Internet.

Use of the Internet

According to the Office of National Statistics in the UK, 86 % of the British population (43.6 million adults) have access to the Internet (Office for National Statistics 2013a), and 73 % (36 million) adults access the Internet every day (Office for National Statistics 2013b).

…”

Section: Introductionmentioning

confidence: 99%

Finding people who will tell you their thoughts on genomics—recruitment strategies for social sciences research

2014

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This paper offers a description of how social media, traditional media and direct invitation were used as tools for the recruitment of 6,944 research participants for a social sciences study on genomics. The remit was to gather the views of various stakeholders towards sharing incidental findings from whole genome studies. This involved recruiting members of the public, genetic health professionals, genomic researchers and non-genetic health professionals. A novel survey was designed that contained ten integrated films; this was made available online and open for completion by anyone worldwide. The recruitment methods are described together with the convenience and snowballing sampling framework. The most successful strategy involved the utilisation of social media; Facebook, Blogging, Twitter, LinkedIn and Google Ads led to the ascertainment of over 75 % of the final sample. We conclude that the strategies used were successful in recruiting in eclectic mix of appropriate participants. Design of the survey and results from the study are presented separately.

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Use of the Internet

…”

Section: Introductionmentioning

confidence: 99%

Finding people who will tell you their thoughts on genomics—recruitment strategies for social sciences research

2014

Self Cite

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“…In the current era of citizen science 13 where many participants seek to be partners and active collaborators in research, as opposed to subjects of research, it is valuable to ask the relevant stakeholders what they think about the return of raw genomic data and what they might do with it. Using a cross-sectional web-based survey containing 10 explanatory films ( http://www.genomethics.org ), we gathered the attitudes of 6944 people from 75 different countries towards the return of results from sequencing research 14 15 (see online supplementary data for an example of one of the films). Participants were recruited via a convenience and snowballing sampling framework; invitations to complete the survey were sent via social media (Facebook, Twitter, LinkedIn, Google Ads and a Blog), traditional media (articles on the television, radio and online news items on the research) and via direct emailing of professional list-serves used by health professionals and genomic researchers.…”

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confidence: 99%

Potential research participants support the return of raw sequence data

et al. 2015

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Health-related results that are discovered in the process of genomic research should only be returned to research participants after being clinically validated and then delivered and followed up within a health service. Returning such results may be difficult for genomic researchers who are limited by resources or unable to access appropriate clinicians. Raw sequence data could, in theory, be returned instead. This might appear nonsensical as, on its own, it is a meaningless code with no clinical value. Yet, as and when direct to consumer genomics services become more widely available (and can be endorsed by independent health professionals and genomic researchers alike), the return of such data could become a realistic proposition. We explore attitudes from <7000 members of the public, genomic researchers, genetic health professionals and non-genetic health professionals and ask participants to suggest what they would do with a raw sequence, if offered it. Results show 62% participants were interested in using it to seek out their own clinical interpretation. Whilst we do not propose that raw sequence data should be returned at the moment, we suggest that should this become feasible in the future, participants of sequencing studies may possibly support this.

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“…The survey was web‐based (https://svaros.dk/holdning) and a modified version of the web‐based survey (http://www.genomethics.org) developed at the Wellcome Trust Sanger Institute in Cambridge, United Kingdom (Middleton, Bragin, Morley, & Parker, ; Middleton, Bragin, & Parker, ; Middleton et al, , ; Middleton, Parker, Wright, Bragin, & Hurles, ). The development process and validation techniques of the English survey are described elsewhere (Middleton, Bragin et al, ). Ten video films with subtitles and voice‐over were used to explain the survey background and to illustrate the ethical issues relating to nine focus areas of the survey.…”

Section: Methodsmentioning

confidence: 99%

Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research

Sundby

Boolsen²,

Burgdorf

et al. 2017

American J of Med Genetics Pt A

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Increasingly more psychiatric research studies use whole genome sequencing or whole exome sequencing. Consequently, researchers face difficult questions, such as which genomic findings to return to research participants and how. This study aims to gain more knowledge on the attitudes among potential research participants and health professionals toward receiving pertinent and incidental findings. A cross‐sectional online survey was developed to investigate the attitudes among research participants toward receiving genomic findings. A total of 2,637 stakeholders responded: 241 persons with mental disorders, 671 relatives, 1,623 blood donors, 74 psychiatrists, and 28 clinical geneticists. Stakeholders wanted both pertinent findings (95%) and incidental findings (91%) to be made available for research participants. The majority (77%) stated that researchers should not actively search for incidental findings. Persons with mental disorders and relatives were generally more positive about receiving any kind of findings than clinical geneticists and psychiatrists. Compared with blood donors, persons with mental disorders reported to be more positive about receiving raw genomic data and information that is not of serious health importance. Psychiatrists and clinical geneticists were less positive about receiving genomic findings compared with blood donors. The attitudes toward receiving findings were very positive. Stakeholders were willing to refrain from receiving incidental information if it could compromise the research. Our results suggest that research participants consider themselves as altruistic participants. This study offers valuable insight, which may inform future programs aiming to develop new strategies to target issues relating to the return of findings in genomic research.

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Online questionnaire development: Using film to engage participants and then gather attitudes towards the sharing of genomic data

Cited by 19 publications

References 32 publications

Finding people who will tell you their thoughts on genomics—recruitment strategies for social sciences research

Finding people who will tell you their thoughts on genomics—recruitment strategies for social sciences research

Potential research participants support the return of raw sequence data

Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research

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