STARDIT/Co-designing genomics research with donor-conceived siblings

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Description: Participatory action research to involve members of a sibling group in online discussions about how they would like to be involved in future research. The research process was co-designed using a participatory action research method to involve members of a sibling group in the co-design of online discussions to explore future genomic research with members of the group.
Dates

State ongoing
Start 2018-10-01
Form updated 2022-07-13

Report authors
Jack Nunn (link)
0000-0003-0316-3254
jack.nunn@latrobe.edu.au
Main report author
Marilyn Crawshaw (link)
0000-0002-2870-0506
Checked report data
Paul Lacaze (link)
0000-0002-0902-6798
Checked report data
Shirley Brailey
Checked report data and contributed additional data
Barbara Nunn
Checked report data and contributed additional data
Adrianne Smith
Checked report data and contributed additional data
Barry Stevens (link)
Checked report data and contributed additional data
Location
Australia
Other IDs
La Trobe University Human Ethics Committee: HEC18256
DOI: 10.1186/s40900-021-00325-7
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Aims
involve members of a sibling group co-designing online discussions
involve members of a sibling group in online discussions
Keywords
STARDIT
genomics
research
donor-conceived
siblings
shared-ancestry
participatory action research
co-design
Category
research

Inputs

individual

Jack Nunn (link)



ID: 0000-0003-0316-3254
Task: Led research project, involved in co-designing every stage of the process, leading participatory action research process, leading co-design of online surveys, leading co-design of online discussions, analysing feedback from co-design process, leading data analysis
Method: leading participatory action research process, leading co-design of online surveys, leading co-design of online discussions, analysing feedback from co-design process, leading data analysis
Communication: face to face meetings, telecommunications, online text-based discussions, email
Compensation: other(La Trobe University Postgraduate Research Scholarship)
Competing interests: biologically related to research participants


Research lead
individual

Marilyn Crawshaw (link)



ID: 0000-0002-2870-0506
Task: Involved in co-designing every stage of the process, critically appraising research plan, analysing data
Method: Member of research team
Recruitment: personal introduction from members of sibling group
Communication: email, telecommunications, online text-based discussions
Competing interests: Previous research with members of sibling group, professional interest in research with donor-conceived people
individual

Paul Lacaze (link)



ID: 0000-0002-0902-6798
Task: Involved in co-designing every stage of the process, critically appraising research plan, analysing data
Competing interests: PhD co-supervisor of Jack Nunn
group of individuals

Members of the sibling group who did not participate in online discussion (2)



Task: refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing)
Method: participated in co-design process | Clear communication about the intention of involving people
Recruitment: email invitation shared by member of sibling group with all known members of sibling group
Communication: email, commenting on shared documents, telecommunications
Competing interests: biologically related to other members of sibling group and lead researcher (Jack Nunn)


Members of the sibling group who did not participate in online discussion gave feedback on the planned research, including planned co-design process
group of individuals

Members of the sibling group who did participate in online discussion (3)



Task: refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing). Members of this group were also sent the article and additional files to check the analysis and content and were invited to be authors of the Alpha version STARDIT report.
Method: participated in co-design process
Recruitment: email invitation shared by member of sibling group with all known members of sibling group
Communication: email, commenting on shared documents, telecommunications
Competing interests: biologically related to other members of sibling group and lead researcher (Jack Nunn)


Members of the sibling group who did participate in online discussion gave feedback on the planned research
funding


0 (AUD)
time


25 hours


volunteering

Outputs and impacts

change
Stage: recruitment
Start: 2018-10-01
End 2018-11-01
Improved participant information resources

Impact: Improved understandability of resources
change

improved wording that was culturally appropriate (using terminology preferred by the sibling group to describe biological relations)



Impact: wording more appropriate and acceptable
other

improved online discussion design



Impact: online discussion design was improved by making questions more focussed and clear, thus improving quality of online discussions
change

improved learning resources for participants



Impact: learning and development resources were reported as helpful and useful
other

improved co-design process



Impact: language to describe the recruitment to the co-design process was made more comprehensible, helping people understand it was distinct from participating in the research project
learning item

Involving potential participants in co-defining language used to describe the sibling group helped ensure that language was acceptable and appropriate.


learning item

The co-design process took longer than expected owing to ethical ‘grey areas’ with no clear instruction on whether ethics approval was required to involve people in co-design. As a result an ethics application was made and subsequent feedback from the co-design process was integrated using modifications to the ethics application.


learning item

limitations in the ethics process affected the extent of how the sibling group could be involved in the study




The entire study team agreed that limitations in the ethics process affected the extent of how the sibling group could be involved in the study. Internationally, confusion still surrounds what ethical approval is required before involving potential participants in co-designing research. On the advice of the La Trobe University Human Research Ethics Committee, the study team did not approach potential participants about co-designing the study until after ethics approval had been granted, with feedback from participants being incorporated by a number of subsequent modifications to the original ethics application. As a result of the complex process of modifications, the timeline for feedback was shorter than the study team had anticipated, although the process did provide useful feedback.
learning item

Ambiguous policies for the ethical involvement of people in co-designing research can hamper the degree of control potential participants have in research and further clarity from ethics committees will enhance power sharing at this crucial stage of research.


learning item

Involving people in online discussions about involvement in research changes people’s views about who should be involved in research, including participants ‘widening’ their views about who should be involved in research to include more people.


change

Co-design changed study design




Feedback from participants resulted in changes to the study design including improving language used in recruitment, improving the online discussions and learning resources.
change

The process improved participants understanding about genomics and research.




Participants had an improved understanding of genomics. While participants showed a good-baseline level understanding of genomics, three reported their understanding about genomics and research increased as a result of participating in the study. However, some participants demonstrated a lack of self-confidence in their understanding, in spite of demonstrating a good understanding of the principles of genomic research, citing relevant peer-reviewed literature in discussions and discussing the nuances of ethical oversight.
other

Participants’ improved understanding about genomics and research helped them make informed decisions about invitations to join genomics research studies,




Invitations were shared with members of the sibling group after the process by researchers unconnected with this study.
other

Learning from this process informed subsequent discussions in the sibling group about participation in research, including a proposed self-managed biobank.




Method for future research co-design established. By co-creating methods of involving participants in proposed future genomics research, this process has demonstrated a practical and well-evaluated method of involving potential participants in co-designing research. Participants stated that the methods used in this process could be helpful when co-designing future stages of proposed genomic research with the sibling group.
change

Participants reported finding the learning resources useful (including infographics and videos).


change

Participants changed views and perspectives about genomics research as a result of participating




Four out of the six participants who completed the follow up survey noted their views and perspectives changed as a result of participating. One participant stated ‘I now realise how fast the field of genomics is changing and there are all kinds of implications especially in the field of precision medicine’ [P5]. One participant also indicated that involvement in research might help people make sense of their personal experience and added joining an online discussion ‘let me think beyond my emotion’ [P6]. Another stated ‘involving people in genomic research is crucial’ as it has ‘unknown consequences and needs as wider discussion as possible’[P4]. A number of participants had views about ‘leaving research to the qualified’ challenged by other participants [P9], with follow-up survey data suggesting that those challenged changed their views about who should be involved, towards widening. The changed views of the participants involved can be viewed as an impact of ‘transformative learning’.
other

Participants asked to stay involved in the research.



Impact: All participants who completed the follow-up survey requested to stay involved in the research process, including in analysing data and being co-authors on the paper
other

Participants enjoyed the online discussions




Participants stated the experience of participating was ‘interesting’ and they ‘enjoyed thinking about the questions posed and reading the responses of others’ and the ‘perceptive comments’ of the Facilitator [P7] [P4]. Another participant added that it ‘worked well’ as a way of involving people [P7].
dataset (open)

It will be published open access in peer reviewed journals with identifying information removed in order to anonymise it as much as possible. (link)



Findability: It will be shared on a public domain repository. It will be shared with participants of the research and also other members of the sibling group who have joined it since the study commenced. Learning from this process has been presented at conferences, and will be shared on social media and through other channels. Preliminary learning was shared in a UK Genetics Society podcast.
Accessibility: It will be shared on a public domain repository.
Accessibility (URL): https://doi.org/10.21203/rs.3.rs-100595/v1
Interoperability (format): STARDIT report
Interoperability (methods): We used case study methodology to describe our experience involving participants in the co-design of the proposed study. We collected and analysed both qualitative and quantitative data during the involvement activities. We analysed data from online surveys and online discussions with participants. In addition, data from the study team communications was included, such as meeting notes, emails, reflexive diary entries and survey responses of study investigators. Coding and thematic analysis of qualitative data was carried out by two authors independently and checked by other authors.
Reusability (license): Creative Commons Attribution 4.0 International License
Reusability (attribution): The authors maintain ‘ownership’ of the data in the paper and is shared under the Creative Commons license used by the publishing journal.
dataset (sensitive)

Research data with identifying information will be stored by La Trobe University in line with ethical policies



Method: Contact La Trobe University
Ownership: Confidential data collected as part of the study is stored according to laws and the data access plan approved by La Trobe University. The authors maintain ‘ownership’ of the data in the paper and is shared under the Creative Commons license used by the publishing journal.
Steward: La Trobe University
Location: La Trobe University
Access status: Managed by La Trobe University
Access method: Contact La Trobe University

Knowledge translation: 1. Knowledge from this process will inform the design of a future genomic research 2. Learning from this process can inform future involvement activities 3. Learning from this co-design process can inform future ways of involving people in genomic research including co-designing self-governed biobanks. 4. Learning from this process was shared in a Genetics Society UK podcast2, with the recording shared with all participants before dissemination to ensure the content was accurate and acceptable.