Public Interest in Whole Genome Sequencing and Information Needs: An Online Survey Study

Etchegary, Holly; Wilson, Brenda J.; Rahman, Proton; Simmonds, Charlene; Pullman, Daryl

doi:10.2217/pme-2019-0136

Cited by 12 publications

(26 citation statements)

References 40 publications

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“…Such regular communication should also be combined with learning and development opportunities, which could also help facilitate participant involvement by ensuring that people understand the values which motivate the tasks they are being asked to be involved in 19,55 Participant views about data storage and access aligns with a 2015 survey by Genetic Alliance Australia, which indicated people mostly trusted universities and research institutes to use personal genetic information for research, with commercial companies least trusted 56 . Event participants' unanimous preference for having access to their own data and a general trust for GPs to access and interpret genomic data also aligns with findings from other studies [57][58][59] .…”

Section: Discussionsupporting

confidence: 79%

Involving Elderly Research Participants in the Co-Design of a Future Multi-Generational Cohort Study

Nunn

Sulovski

Tiller

et al. 2020

Preprint

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Objectives: To report as a case study the process of involving study participants and how this impacted the co-design of a proposed multi-generational research study, using a novel standardised reporting tool. Background: An advert was sent to 14,268 participants of the ASPREE-XT observational cohort study to invite them to be involved in co-design and planning of a future multi-generational research study. Participants were aged 74 years and older from Australia, located in both metropolitan and rural locations. Interventions: We used participatory action research to involve elderly research participants in the co-design of a proposed multi-generational cohort study between 2017-2019 using newsletters, telephone interviews and an in-person workshop. Primary and secondary outcome measures: We used the ‘Standardised Data on Initiatives (STARDIT)’ Alpha Version to plan and report how participant involvement activities positively impacted the study design. Results: Fifty-nine ASPREE participants were interviewed by telephone and 18 participants attended a face-to-face workshop event. Involving participants positively impacted the proposed study design by improving the research objectives, developing protocols, influencing funding decisions and improving ethics applications. Learning points included the importance of maintaining the ideals of the ASPREE study (respect, quality and transparency); research participants’ preference for the option of receiving results (including genetic results); participants’ need for involvement in decisions about recruitment, data access, governance and other ethical issues; and the preference for different communication methods, including both face-to-face and online methods. The process was highly valued by all stakeholders, including research participants, study staff and lead investigators. Involvement of participants was described by the lead study investigator as “enormously helpful”. Conclusions: This case study provides evidence that including participants in the design of a research study positively impacted the study design, participants and researchers. Using a standardised reporting tool to describe the methods and impacts provides a way for learning from this case study to inform future research studies planning to involve people.

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Section: Discussionsupporting

confidence: 79%

Involving Elderly Research Participants in the Co-Design of a Future Multi-Generational Cohort Study

Nunn

Sulovski

Tiller

et al. 2020

Preprint

View full text Add to dashboard Cite

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“…GPs to access and interpret genomic data also aligns with findings from other studies [57][58][59] .…”

Section: Discussionsupporting

confidence: 72%

“…may have given different results if it was an anonymous ballot 59 . Future research should explore and compare preferences for different methods of voting.…”

Section: Study Limitationsmentioning

confidence: 99%

Involving elderly research participants in the co-design of a future multi-generational cohort study

Nunn

Sulovski

Tiller

et al. 2021

Preprint

View full text Add to dashboard Cite

Background: It has been proposed that the existing ASPirin in Reducing Events in the Elderly Extension observational cohort study (ASPREE-XT) would provide a platform for a future multigenerational research study (MGRS). An advert was sent to 14,268 participants (aged 74 years and older, from Australia, and located in both metropolitan and rural locations) to invite them to share views and preferences about being involved in the co-design of a future MGRS, as their preferences were not known. The objective of this article is to report as a case study the process of involving study participants and how this impacted the co-design of a proposed multi-generational research study, using a novel standardised reporting tool. Methods: We used participatory action research to involve elderly research participants in the co-design of a proposed multi-generational cohort study between 2017-2019 using newsletters, telephone interviews and an in-person workshop. We used the novel ‘Standardised Data on Initiatives Alpha Version 0.1’ (STARDIT 0.1) to plan and report how participant involvement activities positively impacted the study design.Results: Fifty-nine ASPREE-XT participants were interviewed by telephone and 18 participants attended a face-to-face event. Involving participants positively impacted the proposed study design by improving the research objectives, developing protocols, influencing funding decisions and improving ethics applications. Learning points included the importance of maintaining the ideals of ASPREE-XT (respect, quality and transparency); research participants’ preference for the option of receiving results (including genetic results); participants’ need for involvement in decisions about recruitment, data access, governance and other ethical issues; and the preference for different communication methods, including both face-to-face and online methods. Data from the process indicated it was highly valued by all stakeholders, including research participants, study staff and lead investigators. Involvement of participants was described by a lead study investigator of ASPREE-XT as “enormously helpful”.Conclusions: This case study demonstrates that including participants in the design of a research study positively impacted the study design, participants and researchers. Using a standardised reporting tool to describe the methods and impacts provides a way for learning from this case study to inform future research studies planning to involve people.

show abstract

“…Participant views about data storage and access aligns with a 2015 survey by Genetic Alliance Australia, which indicated people mostly trusted universities and research institutes to use personal genetic information for research, with commercial companies least trusted [56]. Event participants' unanimous preference for having access to their own data and a general trust for GPs to access and interpret genomic data also aligns with findings from other studies [57][58][59]. Despite this preference, this option is often still not offered to research participants [16].…”

Section: Discussionsupporting

confidence: 63%

“…While the mixture of written and verbal feedback at the event ensured a range of ways to give feedback, the voting process (which involved people raising their hands in front of everyone) may have given different results if it was an anonymous ballot [59]. Future research should explore and compare preferences for different methods of voting.…”

Section: Study Limitationsmentioning

confidence: 99%

Involving elderly research participants in the co-design of a future multi-generational cohort study

et al. 2021

View full text Add to dashboard Cite

Background It has been proposed that the existing ASPirin in Reducing Events in the Elderly Extension observational cohort study (ASPREE-XT) would provide a platform for a future multigenerational research study (MGRS). An advert was sent to 14,268 participants (aged 74 years and older, from Australia, and located in both metropolitan and rural locations) to invite them to share views and preferences about being involved in the co-design of a future MGRS, as their preferences were not known. The objective of this article is to report as a case study the process of involving study participants and how this impacted the co-design of a proposed multi-generational research study, using a novel standardised reporting tool. Methods We used participatory action research to involve elderly research participants in the co-design of a proposed multi-generational cohort study between 2017 and 2019 using newsletters, telephone interviews and an in-person workshop. We used the novel ‘Standardised Data on Initiatives Alpha Version 0.1’ (STARDIT 0.1) to plan and report how participant involvement activities positively impacted the study design. Results Fifty-nine ASPREE-XT participants were interviewed by telephone and 18 participants attended a face-to-face event. Involving participants positively impacted the proposed study design by improving the research objectives, developing protocols, influencing funding decisions and improving ethics applications. Learning points included the importance of maintaining the ideals of ASPREE-XT (respect, quality and transparency); research participants’ preference for the option of receiving results (including genetic results); participants’ need for involvement in decisions about recruitment, data access, governance and other ethical issues; and the preference for different communication methods, including both face-to-face and online methods. Data from the process indicated it was highly valued by all stakeholders, including research participants, study staff and lead investigators. Involvement of participants was described by a lead study investigator of ASPREE-XT as “enormously helpful”. Conclusions This case study demonstrates that including participants in the design of a research study positively impacted the study design, participants and researchers. Using a standardised reporting tool to describe the methods and impacts provides a way for learning from this case study to inform future research studies planning to involve people.

show abstract

Public Interest in Whole Genome Sequencing and Information Needs: An Online Survey Study

Cited by 12 publications

References 40 publications

Involving Elderly Research Participants in the Co-Design of a Future Multi-Generational Cohort Study

Involving Elderly Research Participants in the Co-Design of a Future Multi-Generational Cohort Study

Involving elderly research participants in the co-design of a future multi-generational cohort study

Involving elderly research participants in the co-design of a future multi-generational cohort study

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