scholarly journals Co-designing genomics research with a large group of donor-conceived siblings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jack S. Nunn ◽  
Marilyn Crawshaw ◽  
Paul Lacaze
Keyword(s):  
Medical Research ◽  
Online Discussion ◽  
Research Process ◽  
Discussion Forum ◽  
Genomic Research ◽  
Future Research ◽  
Sperm Donor ◽  
Large Group ◽  
High Interest ◽  
Genomics Research

Abstract Background Human genomics research is growing rapidly. More effective methods are required for co-design and involving people, especially those sub-populations which are inherently high interest to medical research and thus at greater risk of being exploited. This case study documents how we worked with a large group of donor-conceived siblings who share the same sperm donor father, to explore how they might want to engage with and influence any future genomic research. Method A participatory action research process was used to explore the views of a group of 18 people who knew they are donor-conceived siblings. They are part of a larger group of up to 1000 people who share the same sperm donor father but the only ones in contact with each other; it is likely that many of the uncontacted siblings are unaware of their biological father, have been unable to trace others or have died. The discussion explored views about how the group would like to be involved in future research. Five members participated in co-design; 12 completed a pre-discussion online survey; and six participated in an online discussion forum and evaluation survey. The online discussion was led by one facilitator, supported by the study team. Results Of the 18 siblings approached in 2018, 14 participated in the co-design stages or the surveys and online discussion. Co-design informed the research process. Participants reported enjoying the overall experience of the surveys and discussion forum, which were perceived as inclusive and flexible. Most participants’ views regarding the value of involvement in research changed during the process, and ‘widened’ about who should be involved. Participants were supportive of future research being done with the siblings group. All who completed the final survey requested to remain part of the co-design process. Other themes in the online discussion included concerns about conflicting interests and a desire for research participation to improve the situation for people affected by assisted conception. The process informed later discussions in the sibling group about participating in a self-managed biobank and informed decision making about participating in genomics research. Conclusion Findings from this study help inform ways in which people from certain sub-populations can be involved in planning and defining their participation in genomic research, particularly those that are inherently high interest to medical research and thus at greater risk of exploitation. This process provides a replicable method of involving potential participants in co-designing genomics research using online discussions, with positive outcomes. Reporting this study using ‘Standardised data on initiatives (STARDIT)’ to report the process allows comparison with other studies.

Co-Designing Genomics Research With A Large Group of Donor-Conceived Siblings

2020 ◽  
Author(s):  
Jack Nunn ◽  
Marilyn Crawshaw ◽  
Paul Lacaze
Keyword(s):  
Online Survey ◽  
Online Discussion ◽  
Research Process ◽  
Discussion Forum ◽  
Genomic Research ◽  
Future Research ◽  
Large Group ◽  
High Interest ◽  
Online Discussion Forum ◽  
Genomics Research

Abstract Background: Human genomics research is growing rapidly. More effective methods are required for co-design and involving people, especially those from vulnerable sub-populations of inherently high interest to medical research. This case study documents how we worked with a large group of donor-conceived siblings who share the same sperm donor father, to explore how they might want to engage with and influence any future genomic research. Method: A participatory action research process was used to explore the views of a group of 18 known donor-conceived siblings; who are part of a larger group of up to 1000 people who share the same biological father. The discussion explored views about how the group would like to be involved in future research. Five members participated in co-design; 12 completed a pre-discussion online survey; and six participated in an online discussion forum and evaluation survey. The online discussion was led by one facilitator, supported by the study team. Results: Co-design informed the research process. Participants reported enjoying the overall experience of the surveys and discussion forum, which were perceived as inclusive and flexible. Most participants’ views regarding the value of involvement in research changed during the process, and ‘widened’ about who should be involved. Participants were supportive of future research being done with the siblings group. All who completed the final survey requested to remain part of the co-design process. Other themes in the online discussion included concerns about conflicting interests and a desire for research participation to improve the situation for people affected by assisted conception. The process informed later discussions in the sibling group about participating in a self-managed biobank and informed decision making about participating in genomics research. Conclusion: Findings from this study help inform how people from certain sub-populations should be involved in planning and defining their participation in genomic research; particularly those from more vulnerable or high-interest populations. This process provides a replicable and practical method of involving potential participants in co-designing genomics research using online discussions, with reported positive outcomes. Reporting this study using ‘Standardised data on initiatives (STARDIT)’ to report the process allows comparison with other studies.

scholarly journals Involving people affected by a rare condition in shaping future genomic research

2021 ◽  
Author(s):  
Jack Nunn ◽  
Kylie Gwynne ◽  
Sarah Gray ◽  
Paul Lacaze
Keyword(s):  
Study Design ◽  
Online Community ◽  
Online Survey ◽  
Online Discussion ◽  
Rare Condition ◽  
Research Process ◽  
Online Discussions ◽  
Genomic Research ◽  
Future Research ◽  
Learning Resources

Abstract Background There is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are not always clear. In this study we co-designed a way of involving people affected by a rare genomic disease in shaping future genomic research about the condition. The aim was to report the process, experiences and outcomes of involving people in genomic research in a standardised way, in order to inform future methods of involvement in research co-production. Method Participants were recruited from an online community hosted by an Australian-based rare disease charity and were over the age 18 years. Once people gave consent, we shared learning resources with participants and invited them to complete an online survey before joining a two-week facilitated online discussion, followed by a second online survey. We used the novel tool ‘Standardised Data on Initiatives - Alpha Version 0.1’ (STARDIT) to map preferences, plan involvement and report any outcomes from the process, with quantitative data analysed descriptively and qualitative data thematically analysed. Results Of the 26 people who gave consent and completed the initial survey, 15 participated in the online discussion and 12 completed the follow-up survey. STARDIT was used to report six outcomes from the process, including 60% of participants’ responses showing a change towards ‘widening’ their view of who should be involved in research to include more people. Outcomes also included an improved understanding of research and how to be involved. Participants enjoyed online discussions, found learning resources useful and asked to stay involved in the research process. The partner organisation reported that a similar online discussion will be used in future research prioritisation processes. Conclusion Involving people in co-designing the process improved the study design, ensuring it met the needs of participants. Whilst the study includes participants from only one disease group, using STARDIT allowed us to map people’s preferences and report the methods and outcomes from involving people, providing a way for learning from this case study to inform future research studies beyond the discipline of public health genomics.

scholarly journals Involving people affected by a rare condition in shaping future genomic research

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jack S. Nunn ◽  
Kylie Gwynne ◽  
Sarah Gray ◽  
Paul Lacaze
Keyword(s):  
Study Design ◽  
Online Community ◽  
Online Survey ◽  
Online Discussion ◽  
Rare Condition ◽  
Research Process ◽  
Online Discussions ◽  
Genomic Research ◽  
Future Research ◽  
Learning Resources

Abstract Background There is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are not always clear. In this study we co-designed a way of involving people affected by a rare genomic disease in shaping future genomic research about the condition. The aim was to report the process, experiences and outcomes of involving people in genomic research in a standardised way, in order to inform future methods of involvement in research co-production. Method Participants were recruited from an online community hosted by an Australian-based rare disease charity and were over the age 18 years. Once people gave consent, we shared learning resources with participants and invited them to complete an online survey before joining a two-week facilitated online discussion, followed by a second online survey. We used the novel tool ‘Standardised Data on Initiatives - Alpha Version 0.1’ (STARDIT) to map preferences, plan involvement and report any outcomes from the process, with quantitative data analysed descriptively and qualitative data thematically analysed. Results Of the 26 people who gave consent and completed the initial survey, 15 participated in the online discussion and 12 completed the follow-up survey. STARDIT was used to report six outcomes from the process, including 60% of participants’ responses showing a change towards ‘widening’ their view of who should be involved in research to include more people. Outcomes also included an improved understanding of research and how to be involved. Participants enjoyed online discussions, found learning resources useful and asked to stay involved in the research process. The partner organisation reported that a similar online discussion will be used in future research prioritisation processes. Conclusion Involving people in co-designing the process improved the study design, ensuring it met the needs of participants. Whilst the study includes participants from only one disease group, using STARDIT allowed us to map people’s preferences and report the methods and outcomes from involving people, providing a way for learning from this case study to inform future research studies beyond the discipline of public health genomics.

scholarly journals Involving People Affected by a Rare Condition in Shaping Future Genomic Research

2020 ◽  
Author(s):  
Kylie Gwynne ◽  
Sarah Gray ◽  
Paul Lacaze ◽  
Jack S Nunn
Keyword(s):  
Study Design ◽  
Online Community ◽  
Online Survey ◽  
Online Discussion ◽  
Rare Condition ◽  
Research Process ◽  
Online Discussions ◽  
Genomic Research ◽  
Future Research ◽  
Learning Resources

Abstract Background There is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are not always clear. In this study we co-designed a way of involving people affected by a rare genomic disease in shaping future genomic research about the condition. The aim was to report the process, experiences and outcomes of involving people in genomic research in a standardised way, in order to inform future methods of involvement in research co-production. Method Participants were recruited from an online community hosted by an Australian-based rare disease charity and were over the age 18 years. Once people gave consent, we shared learning resources with participants and invited them to complete an online survey before joining a two-week facilitated online discussion, followed by a second online survey. We used ‘Standardised Data on Initiatives (STARDIT)’ to map preferences, plan involvement and report any outcomes from the process, with quantitative data analysed descriptively and qualitative data thematically analysed. Results Of the 26 people who gave consent and completed the initial survey, 15 participated in the online discussion and 12 completed the follow-up survey. STARDIT was used to report six outcomes from the process, including 60% of participants’ responses showing a change towards ‘widening’ their view of who should be involved in research to include more people. Outcomes also included an improved understanding of research and how to be involved. Participants enjoyed online discussions, found learning resources useful and asked to stay involved in the research process. The partner organisation reported that a similar online discussion will be used in future research prioritisation processes. Conclusion Involving people in co-designing the process improved the study design, ensuring it met the needs of participants. Whilst the study includes participants from only one disease group, using STARDIT allowed us to map people’s preferences and report the methods and outcomes from involving people, providing a way for learning from this case study to inform future research studies beyond the discipline of public health genomics.

scholarly journals Primer in Genetics and Genomics, Article 2—Advancing Nursing Research With Genomic Approaches

2017 ◽  
Vol 19 (2) ◽  
pp. 229-239 ◽  
Author(s):  
Hyunhwa Lee ◽  
Jessica Gill ◽  
Taura Barr ◽  
Sijung Yun ◽  
Hyungsuk Kim
Keyword(s):  
Health Care Research ◽  
Critical Issue ◽  
Research Process ◽  
Individual Variability ◽  
Genomic Research ◽  
Future Research ◽  
Nursing Research ◽  
Genetics And Genomics ◽  
Patient Responses ◽  
Methodological Considerations

Purpose: Nurses investigate reasons for variable patient symptoms and responses to treatments to inform how best to improve outcomes. Genomics has the potential to guide nursing research exploring contributions to individual variability. This article is meant to serve as an introduction to the novel methods available through genomics for addressing this critical issue and includes a review of methodological considerations for selected genomic approaches. Approach: This review presents essential concepts in genetics and genomics that will allow readers to identify upcoming trends in genomics nursing research and improve research practice. It introduces general principles of genomic research and provides an overview of the research process. It also highlights selected nursing studies that serve as clinical examples of the use of genomic technologies. Finally, the authors provide suggestions about how to apply genomic technology in nursing research along with directions for future research. Conclusions: Using genomic approaches in nursing research can advance the understanding of the complex pathophysiology of disease susceptibility and different patient responses to interventions. Nurses should be incorporating genomics into education, clinical practice, and research as the influence of genomics in health-care research and practice continues to grow. Nurses are also well placed to translate genomic discoveries into improved methods for patient assessment and intervention.

Projecting a European Diploma in Psychology

2002 ◽  
Vol 7 (3) ◽  
pp. 221-224 ◽  
Author(s):  
Bernhard Wilpert
Keyword(s):  
Research Process ◽  
Project Team ◽  
Future Research ◽  
Research Results ◽  
External Constraints ◽  
Internal Procedures ◽  
The Eu

The paper presents an inside evaluation of the EuroPsyT project, funded by the EU Leonardo Program in 1999-2001. While standard research usually neglects to reflect on the internal and external constraints and opportunities under which research results are achieved, the paper stresses exactly those aspects: starting from a brief description of the overall objectives of the 11 countries project, the paper proceeds to describe the macro-context and the internal strengths and weaknesses of the project team, the internal procedures of cooperation,. and obstacles encountered during the research process. It winds up in noting some of the project's achievements and with a look towards future research.

A Literature Review of “ Parenting Styles and Emotional Intelligence of X Class Students”

2017 ◽  
Vol 4 (36) ◽  
Author(s):  
P. Bhavani ◽  
T. G. Amuthavally
Keyword(s):  
Emotional Intelligence ◽  
Literature Review ◽  
Parenting Styles ◽  
Research Programme ◽  
Research Process ◽  
Future Research ◽  
Review Of Literature ◽  
Related Literature

The research for the review of literature is one of the first and foremost important steps in the research process. The search for related literature is a time consuming but fruitful phase of any research programme. In this article, the researcher was made an attempt to present findings from the collected related literature on parenting styles and emotional intelligence of adolescents. The main motto behind this article is to review of related literature from 1990 to till date. The paper also summarizes the findings of the studies on Emotional Intelligence and Parenting Styles giving a direction for future research.

scholarly journals ‘CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research

2021 ◽  
Author(s):  
Matilda A. Haas ◽  
Harriet Teare ◽  
Megan Prictor ◽  
Gabi Ceregra ◽  
Miranda E. Vidgen ◽  
...  
Keyword(s):  
Large Scale ◽  
Genomic Medicine ◽  
International Standards ◽  
Security And Privacy ◽  
Genomic Research ◽  
Return Of Results ◽  
Future Research ◽  
Design And Development ◽  
Participant Engagement ◽  
Dynamic Consent

AbstractThe complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the opportunities for ongoing participant engagement it affords, we wanted to trial Dynamic Consent and to do so developed our own web-based application (web app) called CTRL (control). This paper documents the design and development of CTRL, for use in the Australian Genomics study: a health services research project building evidence to inform the integration of genomic medicine into mainstream healthcare. Australian Genomics brought together a multi-disciplinary team to develop CTRL. The design and development process considered user experience; security and privacy; the application of international standards in data sharing; IT, operational and ethical issues. The CTRL tool is now being offered to participants in the study, who can use CTRL to keep personal and contact details up to date; make consent choices (including indicate preferences for return of results and future research use of biological samples, genomic and health data); follow their progress through the study; complete surveys, contact the researchers and access study news and information. While there are remaining challenges to implementing Dynamic Consent in genomic research, this study demonstrates the feasibility of building such a tool, and its ongoing use will provide evidence about the value of Dynamic Consent in large-scale genomic research programs.

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