0202109070341: Difference between revisions

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{{item
{{item
|description_parameter=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.
|title=Co-designing genomics research with donor-conceived siblings
|type_parameter=research
|description_parameter=This report is about the peer-reviewed article which describes 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.
|aim_parameter={{aim parameter|involve members of a sibling group co-designing online discussions}}{{aim parameter|involve members of a sibling group in online discussions}}
|aim_parameter={{aim parameter|involve members of a sibling group co-designing online discussions}}{{aim parameter|involve members of a sibling group in online discussions}}
|keyword_parameter={{keyword parameter|STARDIT}}{{keyword parameter|genomics}}{{keyword parameter|research}}{{keyword parameter|donor-conceived}}{{keyword parameter|siblings}}{{keyword parameter|shared-ancestry}}{{keyword parameter|participatory action research}}{{keyword parameter|co-design}}
|keyword_parameter={{keyword parameter|STARDIT}}{{keyword parameter|genomics}}{{keyword parameter|research}}{{keyword parameter|donor-conceived}}{{keyword parameter|siblings}}{{keyword parameter|shared-ancestry}}{{keyword parameter|participatory action research}}{{keyword parameter|co-design}}
|state_parameter=ongoing
|state_parameter=ongoing
|start_date_parameter=2018-10-01
|start_date_parameter=2018-10-01
|start_date_parameter=2018-10-01
|start_date_parameter=2018-10-01
|location_parameter=Australia
|location_parameter=Australia
|location_link=No
|location_link=No
|URL_parameter=https://web.archive.org/web/20210907033145/https://assets.researchsquare.com/files/rs-100595/v1/9512e607c918314317ab8f0b.pdf
|URL_parameter=https://doi.org/10.1186/s40900-021-00325-7
|ID_parameter={{ID parameter
|ID_parameter={{ID parameter
|id_typ=HEC18256
|id_typ=La Trobe University Human Ethics Committee
|id_val=La Trobe University Human Ethics Committee
|id_val=HEC18256
}}{{ID parameter
}}{{ID parameter
|id_typ=10.21203/rs.3.rs-100595/v1
|id_typ=DOI
|id_val=DOI
|id_val=10.1186/s40900-021-00325-7
}}
}}{{ID parameter}}
|author_parameter={{author parameter
|author_parameter={{author parameter
|aut_nam=Jack Nunn
|aut_nam=Jack Nunn
Line 65: Line 65:
|con_cot=La Trobe University Postgraduate Research Scholarship
|con_cot=La Trobe University Postgraduate Research Scholarship
|con_int=biologically related to research participants
|con_int=biologically related to research participants
|con_sta=2017-01-01
|con_dates=No
|con_des=Research lead
|con_des=Research lead
}}{{contributor parameter
}}{{contributor parameter
Line 77: Line 77:
|con_rec=personal introduction from members of sibling group
|con_rec=personal introduction from members of sibling group
|con_int=Previous research with members of sibling group, professional interest in research with donor-conceived people
|con_int=Previous research with members of sibling group, professional interest in research with donor-conceived people
|con_sta=2018-08-01
|con_dates=No
}}{{contributor parameter
}}{{contributor parameter
|con_typ=individual
|con_typ=individual
Line 85: Line 85:
|con_ids=0000-0002-0902-6798
|con_ids=0000-0002-0902-6798
|con_int=PhD co-supervisor of Jack Nunn
|con_int=PhD co-supervisor of Jack Nunn
|con_sta=2017-01-01
|con_dates=No
}}{{contributor parameter
}}{{contributor parameter
|con_typ=group of individuals
|con_typ=group of individuals
Line 91: Line 91:
|con_num=2
|con_num=2
|con_tas=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)
|con_tas=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)
|con_met=participated in co-design process
|con_met=participated in co-design process;  Clear communication about the intention of involving people
|con_com=email, commenting on shared documents, telecommunications
|con_com=email, commenting on shared documents, telecommunications
|con_rec=email invitation shared by member of sibling group with all known members of sibling group
|con_rec=email invitation shared by member of sibling group with all known members of sibling group
|con_int=biologically related to other members of sibling group and lead researcher (Jack Nunn)
|con_int=biologically related to other members of sibling group and lead researcher (Jack Nunn)
|con_sta=2018-10-14
|con_dates=No
|con_end=2018-10-31
|con_des=Members of the sibling group who did not participate in online discussion gave feedback on the planned research, including planned co-design process
|con_des=Members of the sibling group who did not participate in online discussion gave feedback on the planned research, including planned co-design process
}}{{contributor parameter
}}{{contributor parameter
Line 107: Line 106:
|con_rec=email invitation shared by member of sibling group with all known members of sibling group
|con_rec=email invitation shared by member of sibling group with all known members of sibling group
|con_int=biologically related to other members of sibling group and lead researcher (Jack Nunn)
|con_int=biologically related to other members of sibling group and lead researcher (Jack Nunn)
|con_sta=2018-10-14
|con_dates=No
|con_end=2018-10-31
|con_des=Members of the sibling group who did participate in online discussion gave feedback on the planned research
|con_des=Members of the sibling group who did participate in online discussion gave feedback on the planned research
}}
}}
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}}{{input parameter
}}{{input parameter
|inp_typ=time
|inp_typ=time
|inp_inp=volunteering
|inp_inp=25
|inp_timespan=hours
|inp_timespan=hours
|inp_des=25
|inp_des=volunteering
}}
}}
|ethics_parameter={{ethics parameter
|ethics_parameter={{ethics parameter
Line 130: Line 128:
|out_typ=change
|out_typ=change
|out_out=Improved participant information resources
|out_out=Improved participant information resources
|out_imp=Improved understandability of resources
|out_typ3=No
|out_stg=recruitment
|out_stg=recruitment
|out_dates=Yes
|out_dates=Yes
|out_sta=2018-10-01
|out_sta=2018-10-01
|out_end=2018-11-01
|out_end=2018-11-01
|out_imp=Improved understandability of resources
}}{{output parameter
}}{{output parameter
|out_typ=change
|out_typ=change
|out_out=improved wording that was culturally appropriate (using terminology preferred by the sibling group to describe biological relations)
|out_out=improved wording that was culturally appropriate (using terminology preferred by the sibling group to describe biological relations)
|out_dates=No
|out_imp=wording more appropriate and acceptable
|out_imp=wording more appropriate and acceptable
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=other
|out_typ=other
|out_out=improved online discussion design
|out_out=improved online discussion design
|out_dates=No
|out_imp=online discussion design was improved by making questions more focussed and clear, thus improving quality of online discussions
|out_imp=online discussion design was improved by making questions more focussed and clear, thus improving quality of online discussions
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=change
|out_typ=change
|out_out=improved learning resources for participants
|out_out=improved learning resources for participants
|out_dates=No
|out_imp=learning and development resources were reported as helpful and useful
|out_imp=learning and development resources were reported as helpful and useful
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=other
|out_typ=other
|out_out=improved co-design process
|out_out=improved co-design process
|out_dates=No
|out_imp=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
|out_imp=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
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=learning item
|out_typ=learning item
|out_out=Involving potential participants in co-defining language used to describe the sibling group helped ensure that language was acceptable and appropriate.
|out_out=Involving potential participants in co-defining language used to describe the sibling group helped ensure that language was acceptable and appropriate.
|out_typ3=No
|out_dates=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=learning item
|out_typ=learning item
|out_out=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.
|out_out=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.
|out_typ3=No
|out_dates=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=learning item
|out_typ=learning item
|out_out=limitations in the ethics process affected the extent of how the sibling group could be involved in the study
|out_out=limitations in the ethics process affected the extent of how the sibling group could be involved in the study
|out_dates=No
|out_des=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.
|out_des=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.
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=learning item
|out_typ=learning item
|out_out=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.
|out_out=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.
|out_typ3=No
|out_dates=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=learning item
|out_typ=learning item
|out_out=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.
|out_out=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.
|out_typ3=No
|out_dates=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=change
|out_typ=change
|out_out=Co-design changed study design
|out_out=Co-design changed study design
|out_dates=No
|out_des=Feedback from participants resulted in changes to the study design including improving language used in recruitment, improving the online discussions and learning resources.
|out_des=Feedback from participants resulted in changes to the study design including improving language used in recruitment, improving the online discussions and learning resources.
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=change
|out_typ=change
|out_out=The process improved participants understanding about genomics and research.
|out_out=The process improved participants understanding about genomics and research.
|out_dates=No
|out_des=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.
|out_des=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.
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=other
|out_typ=other
|out_out=Participants’ improved understanding about genomics and research helped them make informed decisions about invitations to join genomics research studies,
|out_out=Participants’ improved understanding about genomics and research helped them make informed decisions about invitations to join genomics research studies,
|out_dates=No
|out_des=Invitations were shared with members of the sibling group after the process by researchers unconnected with this study.
|out_des=Invitations were shared with members of the sibling group after the process by researchers unconnected with this study.
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=other
|out_typ=other
|out_out=Learning from this process informed subsequent discussions in the sibling group about participation in research, including a proposed self-managed biobank.
|out_out=Learning from this process informed subsequent discussions in the sibling group about participation in research, including a proposed self-managed biobank.
|out_dates=No
|out_des=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.
|out_des=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.
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=change
|out_typ=change
|out_out=Participants reported finding the learning resources useful (including infographics and videos).
|out_out=Participants reported finding the learning resources useful (including infographics and videos).
|out_typ3=No
|out_dates=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=change
|out_typ=change
|out_out=Participants changed views and perspectives about genomics research as a result of participating
|out_out=Participants changed views and perspectives about genomics research as a result of participating
|out_dates=No
|out_des=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’.
|out_des=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’.
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=other
|out_typ=other
|out_out=Participants asked to stay involved in the research.
|out_out=Participants asked to stay involved in the research.
|out_dates=No
|out_imp=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
|out_imp=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
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=other
|out_typ=other
|out_out=Participants enjoyed the online discussions
|out_out=Participants enjoyed the online discussions
|out_dates=No
|out_des=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].
|out_des=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].
|out_typ3=No
|out_dates=No
}}{{output parameter
}}{{output parameter
|out_typ=dataset
|out_typ=dataset
|out_out=It will be published open access in peer reviewed journals with identifying information removed in order to anonymise it as much as possible.
|out_out=It will be published open access in peer reviewed journals with identifying information removed in order to anonymise it as much as possible.
|out_dates=No
|out_typ2=open
|out_typ2=open
|out_typ3=No
|out_typ3=No
|out_dates=No
|fair=No
|out_url=https://doi.org/10.21203/rs.3.rs-100595/v1
|out_fin=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.
|out_fin=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.
|out_acc=It will be shared on a public domain repository.
|out_acc=It will be shared on a public domain repository.
Line 247: Line 227:
|out_reu=Creative Commons Attribution 4.0 International License
|out_reu=Creative Commons Attribution 4.0 International License
|out_atr=The authors maintain ‘ownership’ of the data in the paper and is shared under the Creative Commons license used by the publishing journal.
|out_atr=The authors maintain ‘ownership’ of the data in the paper and is shared under the Creative Commons license used by the publishing journal.
|out_int=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.
}}{{output parameter
}}{{output parameter
|out_typ=dataset
|out_typ=dataset
|out_out=Research data with identifying information will be stored by La Trobe University in line with ethical policies
|out_out=Research data with identifying information will be stored by La Trobe University in line with ethical policies
|out_dates=No
|out_typ2=sensitive
|out_typ2=sensitive
|out_typ3=No
|out_typ3=No
|out_dates=No
|secure=No
|out_own=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.
|out_own=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.
|out_ste=La Trobe University
|out_ste=La Trobe University
Line 258: Line 240:
|out_acs=Managed by La Trobe University
|out_acs=Managed by La Trobe University
|out_met=Contact La Trobe University
|out_met=Contact La Trobe University
}}{{output parameter
|out_typ=publication/report/document
|out_out=Guardian online article
|out_dates=No
|out_url_oth=https://www.theguardian.com/australia-news/2023/feb/26/strange-but-ultimately-positive-genetic-discovery-reveals-up-to-1000-relatives-linked-to-prolific-sperm-donor
|out_imp=highly read article globally
}}
}}
}}
}}
Enablers of involvement:
{{Qlink|108618394}}
 
<div class="plainlinks" style="clear:both;float: right; text-align: center; background:#eee; padding:2px 4px; margin:0px 4px; font-size:9pt">[[file:Standardised Data on Initiatives (STARDIT) Beta Version Logo 0.2 SVG.svg|frameless|80px|link=STARDIT]]<br>'''([https://osf.io/w5xj6 beta version])'''</div>
Giving people time to read resources.
[[Category:STARDIT reports]]
 
[[Category:STARDIT version beta reports]]
Clear communication about the intention of involving people.
 
One participant noted that being ‘highly educated’ was an enabler for involvement and that having a ‘bit of time on their hands’ was also an enabler [P4]. Being ‘respectful’ when involving ‘those affected by genomic research’ will facilitate research as the ‘more brains applied to research, the more likely answer to puzzles will be found’ [P11]. Similarly, another participant stated ‘the more diverse the debate, the more dilute the effect of irrational preconception and ethical incompetence should become’ [P8]. One participant stated that whatever model was chosen, it should be ‘as flexible as possible’ [P5].
 
Four participants reported specific things about the way this study was conducted that enabled their involvement. One participant said the entire process was ‘assiduous’ and that the ‘intent of this project’ was ‘obviously thoughtful and interesting’[P9]. One participant said the ‘system seemed to work well’ [P7]. Another added that being used to online platforms like Loomio, or having previous experience of similar platforms and ‘used to’ that way of communicating might facilitate involvement using that communication mode. One participant suggested an alternative discussion format where the participants discussed a thread for 2 days and then had a 3-day break before coming to another thread [P7].
 
The Facilitator (MC) noted that regular contact with the study team and timely support was essential and they ‘could not have done it without this’.
 
Barriers of involvement:
 
Face-to-face meetings were difficult to organise. The study team was located in both Australia and the UK, so face-to-face meetings were not possible. Unclear communication about intentions and purpose of the involvement contributed to confusion (explaining how involvement is distinct from participation was challenging). Ensuring those involved had enough time to give feedback was also a challenge.
 
Barriers to involvement in research identified by participants included public fear and ‘hysteria’ caused by a lack of understanding, which may ‘hamper’ research, involvement, and general public support for research [P5]. Synchronous discussion was highlighted as another barrier if participants ‘are across time zones’ [P4]. One participant mentioned that they felt that their emotional response to some issues made it difficult to get involved in some ways [P6]. Being required to watch lengthy videos was identified as a barrier by one participant. One-to-one interviews were mentioned as being ‘quite straight-jacketed with circumscribed questions’ compared to more open online discussions [P4]. They also stated ‘I don't think that a group discussion would work as there are too many voices and some would be drowned out’ [P4]
 
Four participants reported specific things about the way this study was conducted that were barriers to their involvement. A discussion about boundaries revealed that some participants felt ‘avoiding topics which might trigger emotions which are stressful or unpleasant’ could be viewed as ‘restrictive, even censorious’ [P7]. The pace of the discussions was mentioned as moving ‘too quickly’ with another adding ‘more time’ was needed and study team should ‘reconsider the pace of the research’ [P7] [P4] [P5]. Updates from the discussion were sent to participants according to their preferences, and one stated they ‘lost track of emails’ and were sometimes unsure if they were ‘responding to the right part’ [P6]. Two participants stated the ‘platform presented technical difficulties’ [P4] and that it was ‘complicated’ [P5]. One participant stated the ‘premise and the purpose of the study could be clearer’ and that the various discussion threads were ‘difficult to untangle sometimes’ [P7]. They also mentioned it was ‘hard to be able to guarantee to do this every day for a period’ and that not doing so meant they ‘got lost’ [P7].
 
Another participant added that ‘it’s a difficult subject to discuss in a vacuum, without real life examples’ [P4]. One participant expressed ‘trepidation’ at sharing views about research and compared the feeling to getting an answer wrong in an ‘exam’ [P6].


The Facilitator (MC) stated that they felt more time was required in the co-design process.


Knowledge translation:
Knowledge translation:

Latest revision as of 02:22, 1 November 2024

Co-designing genomics research with donor-conceived siblings Description: This report is about the peer-reviewed article which describes 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.
STARDIT ID: 0202109070341
Dates

State ongoing
Start 2018-10-01
Form updated 2024-11-01

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)
Declared 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
Declared 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
Declared 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
Declared 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
Declared 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
publication/report/document

Guardian online article (link)


Impact: highly read article globally


Q108618394


(beta version)


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.

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