Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public
Abstract Background Understanding public attitudes to genomic data sharing is widely seen as key in shaping effective governance. However, empirical research in this area often fails to capture the contextual nuances of diverse sharing practices and regulatory concerns encountered in real-world geno...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-04-01
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| Series: | BMC Medical Genomics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12920-023-01452-8 |
| _version_ | 1797853537403666432 |
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| author | Vanessa Warren Christine Critchley Rebekah McWhirter Jarrod Walshe Dianne Nicol |
| author_facet | Vanessa Warren Christine Critchley Rebekah McWhirter Jarrod Walshe Dianne Nicol |
| author_sort | Vanessa Warren |
| collection | DOAJ |
| description | Abstract Background Understanding public attitudes to genomic data sharing is widely seen as key in shaping effective governance. However, empirical research in this area often fails to capture the contextual nuances of diverse sharing practices and regulatory concerns encountered in real-world genomic data sharing. This study aimed to investigate factors affecting public attitudes to data sharing through responses to diverse genomic data sharing scenarios. Methods A set of seven empirically validated genomic data sharing scenarios reflecting a range of current practices in Australia was used in an open-ended survey of a diverse sample of the Australian public (n = 243). Qualitative responses were obtained for each of the scenarios. Respondents were each allocated one scenario and asked five questions on: whether (and why/not) they would share data; what sharing would depend on; benefits and risks of sharing; risks they were willing to accept if sharing was certain to result in benefits; and what could increase their comfort about sharing and any potential risk. A thematic analysis was used to examine responses, coded and validated by two blinded coders. Results Participants indicated an overall high willingness to share genomic information, although this willingness varied considerably between different scenarios. A strong perception of benefits was reported as the foremost explanation for willingness to share across all scenarios. The high degree of convergence in the perception of benefits and the types of benefits identified by participants across all the scenarios suggests that the differentiation in intention to share may lie in perceptions of risk, which showed distinct patterns within and between the different scenarios. Some concerns were shared strongly across all scenarios, particularly benefit sharing, future use, and privacy. Conclusions Qualitative responses provide insight into popular assumptions regarding existing protections, conceptions of privacy, and which trade-offs are generally acceptable. Our results indicate that public attitudes and concerns are heterogeneous and influenced by the context in which sharing takes place. The convergence of key themes such as benefits and future uses point to core concerns that must be centred in regulatory responses to genomic data sharing. |
| first_indexed | 2024-04-09T19:52:14Z |
| format | Article |
| id | doaj.art-a56594c8bdbe486c93a40d7432bd320c |
| institution | Directory Open Access Journal |
| issn | 1755-8794 |
| language | English |
| last_indexed | 2024-04-09T19:52:14Z |
| publishDate | 2023-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Genomics |
| spelling | doaj.art-a56594c8bdbe486c93a40d7432bd320c2023-04-03T05:43:52ZengBMCBMC Medical Genomics1755-87942023-04-0115S311710.1186/s12920-023-01452-8Context matters in genomic data sharing: a qualitative investigation into responses from the Australian publicVanessa Warren0Christine Critchley1Rebekah McWhirter2Jarrod Walshe3Dianne Nicol4School of Law, University of TasmaniaSchool of Law, University of TasmaniaSchool of Law, University of TasmaniaSchool of Health Science, Swinburne University of TechnologySchool of Law, University of TasmaniaAbstract Background Understanding public attitudes to genomic data sharing is widely seen as key in shaping effective governance. However, empirical research in this area often fails to capture the contextual nuances of diverse sharing practices and regulatory concerns encountered in real-world genomic data sharing. This study aimed to investigate factors affecting public attitudes to data sharing through responses to diverse genomic data sharing scenarios. Methods A set of seven empirically validated genomic data sharing scenarios reflecting a range of current practices in Australia was used in an open-ended survey of a diverse sample of the Australian public (n = 243). Qualitative responses were obtained for each of the scenarios. Respondents were each allocated one scenario and asked five questions on: whether (and why/not) they would share data; what sharing would depend on; benefits and risks of sharing; risks they were willing to accept if sharing was certain to result in benefits; and what could increase their comfort about sharing and any potential risk. A thematic analysis was used to examine responses, coded and validated by two blinded coders. Results Participants indicated an overall high willingness to share genomic information, although this willingness varied considerably between different scenarios. A strong perception of benefits was reported as the foremost explanation for willingness to share across all scenarios. The high degree of convergence in the perception of benefits and the types of benefits identified by participants across all the scenarios suggests that the differentiation in intention to share may lie in perceptions of risk, which showed distinct patterns within and between the different scenarios. Some concerns were shared strongly across all scenarios, particularly benefit sharing, future use, and privacy. Conclusions Qualitative responses provide insight into popular assumptions regarding existing protections, conceptions of privacy, and which trade-offs are generally acceptable. Our results indicate that public attitudes and concerns are heterogeneous and influenced by the context in which sharing takes place. The convergence of key themes such as benefits and future uses point to core concerns that must be centred in regulatory responses to genomic data sharing.https://doi.org/10.1186/s12920-023-01452-8Genomic data sharingBenefit sharingFuture useCommercializationPublic attitudesGovernance |
| spellingShingle | Vanessa Warren Christine Critchley Rebekah McWhirter Jarrod Walshe Dianne Nicol Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public BMC Medical Genomics Genomic data sharing Benefit sharing Future use Commercialization Public attitudes Governance |
| title | Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public |
| title_full | Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public |
| title_fullStr | Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public |
| title_full_unstemmed | Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public |
| title_short | Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public |
| title_sort | context matters in genomic data sharing a qualitative investigation into responses from the australian public |
| topic | Genomic data sharing Benefit sharing Future use Commercialization Public attitudes Governance |
| url | https://doi.org/10.1186/s12920-023-01452-8 |
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