Italian public's views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study

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Italian public's views on sharing genetic information and medical information : findings from the ‘Your DNA, Your Say’ study

Romano, Virginia (author): Uppsala University,Lunds universitet,Uppsala universitet,Centrum för forsknings- och bioetik,Lund University,Medicinsk etik,Sektion II,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Medical Ethics,Section II,Department of Clinical Sciences, Lund,Faculty of Medicine

Milne, Richard (author): Wellcome Trust,University of Cambridge

Mascalzoni, Deborah, 1973- (author): Uppsala University,Uppsala universitet,Centrum för forsknings- och bioetik,EURAC Research, Institute for Biomedicine

(creator_code:org_t)

2021-07-12
2021
English.
In: Wellcome Open Research. - : F1000 Research Ltd. - 2398-502X. ; 6

Related links:: https://doi.org/10.1...; show more...; https://uu.diva-port... (primary) (Raw object); https://doi.org/10.1...; http://dx.doi.org/10... (free); https://urn.kb.se/re...; https://doi.org/10.1...; https://lup.lub.lu.s...; show less...

Journal article (peer-reviewed)

Abstract Subject headings

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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP -- Medicinska och farmaceutiska grundvetenskaper -- Medicinsk genetik (hsv//swe)
MEDICAL AND HEALTH SCIENCES -- Basic Medicine -- Medical Genetics (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)
MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)

Keyword

DNA sharing
biobanks
bioethics
public attitudes
data sharing
Italy
Biobanks
Bioethics
Data sharing
DNA sharing
Italy
Public attitudes

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