Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations]
Background: The collection and sharing of genomic and health data underpins global efforts to develop genomic medicine services. ‘Your DNA, Your Say’ is a cross-sectional survey with the goal of gathering lay public attitudes toward the access and sharing of deoxyribonucleic acid (DNA) information a...
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| Format: | Article |
| Language: | English |
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Wellcome
2021-07-01
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| Series: | Wellcome Open Research |
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| Online Access: | https://wellcomeopenresearch.org/articles/6-180/v1 |
| _version_ | 1818138866350030848 |
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| author | Richard Milne Virginia Romano Deborah Mascalzoni |
| author_facet | Richard Milne Virginia Romano Deborah Mascalzoni |
| author_sort | Richard Milne |
| collection | DOAJ |
| description | Background: The collection and sharing of genomic and health data underpins global efforts to develop genomic medicine services. ‘Your DNA, Your Say’ is a cross-sectional survey with the goal of gathering lay public attitudes toward the access and sharing of deoxyribonucleic acid (DNA) information and medical information. It suggests significant international variation in the willingness to share information, and in trust in the actors associated with the collection and use of this information. This paper explores these questions in the Italian context. Methods: The Italian Your DNA, Your Say campaign led to the collection of 1229 valid questionnaires. The sample was analysed using standard descriptive statistics. We described the sample in terms of gender, age ranges and self-reported religiosity, and split the sample amongst the five typically studied Italian macro-areas to explore regional variation. We analysed the relationship between these factors and trust and willingness to share medical and DNA information. Results: The majority of the sample, across all socio-demographics, were willing to share DNA and health information with all entities considered except for-profit researchers. Respondents tended not to trust institutions beyond their own doctor. There was no difference between Italian regions. Conclusions: Despite the generally positive attitude towards sharing, we suggest that the lack of trust in non-profit researchers and the government needs to be better understood to inform public communication projects around genomics in the future and to enhance awareness of DNA and medical information in Italy. |
| first_indexed | 2024-12-11T10:19:00Z |
| format | Article |
| id | doaj.art-cd71420bb4994789b53597208027cb97 |
| institution | Directory Open Access Journal |
| issn | 2398-502X |
| language | English |
| last_indexed | 2024-12-11T10:19:00Z |
| publishDate | 2021-07-01 |
| publisher | Wellcome |
| record_format | Article |
| series | Wellcome Open Research |
| spelling | doaj.art-cd71420bb4994789b53597208027cb972022-12-22T01:11:32ZengWellcomeWellcome Open Research2398-502X2021-07-01618654Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations]Richard Milne0https://orcid.org/0000-0002-8770-2384Virginia Romano1https://orcid.org/0000-0002-6594-7284Deborah Mascalzoni2Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK, UKCenter for Research, Ethics and Bioethics, Uppsala University, Uppsala, Sweden, SE-751 05, SwedenCenter for Research, Ethics and Bioethics, Uppsala University, Uppsala, Sweden, SE-751 05, SwedenBackground: The collection and sharing of genomic and health data underpins global efforts to develop genomic medicine services. ‘Your DNA, Your Say’ is a cross-sectional survey with the goal of gathering lay public attitudes toward the access and sharing of deoxyribonucleic acid (DNA) information and medical information. It suggests significant international variation in the willingness to share information, and in trust in the actors associated with the collection and use of this information. This paper explores these questions in the Italian context. Methods: The Italian Your DNA, Your Say campaign led to the collection of 1229 valid questionnaires. The sample was analysed using standard descriptive statistics. We described the sample in terms of gender, age ranges and self-reported religiosity, and split the sample amongst the five typically studied Italian macro-areas to explore regional variation. We analysed the relationship between these factors and trust and willingness to share medical and DNA information. Results: The majority of the sample, across all socio-demographics, were willing to share DNA and health information with all entities considered except for-profit researchers. Respondents tended not to trust institutions beyond their own doctor. There was no difference between Italian regions. Conclusions: Despite the generally positive attitude towards sharing, we suggest that the lack of trust in non-profit researchers and the government needs to be better understood to inform public communication projects around genomics in the future and to enhance awareness of DNA and medical information in Italy.https://wellcomeopenresearch.org/articles/6-180/v1DNA sharing biobanks bioethics public attitudes data sharing Italyeng |
| spellingShingle | Richard Milne Virginia Romano Deborah Mascalzoni Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations] Wellcome Open Research DNA sharing biobanks bioethics public attitudes data sharing Italy eng |
| title | Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations] |
| title_full | Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations] |
| title_fullStr | Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations] |
| title_full_unstemmed | Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations] |
| title_short | Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study [version 1; peer review: 1 approved, 2 approved with reservations] |
| title_sort | italian public s views on sharing genetic information and medical information findings from the your dna your say study version 1 peer review 1 approved 2 approved with reservations |
| topic | DNA sharing biobanks bioethics public attitudes data sharing Italy eng |
| url | https://wellcomeopenresearch.org/articles/6-180/v1 |
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