Views on data use, confidentiality and consent in a predictive screening involving children
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1Unit for Bioethics, Department of LIME, Karolinska Institutet, Berzelius väg 3, SE-171 77 Stockholm, Sweden. gert.helgesson@ki.se
Insights
Families in the ABIS study trust researchers but want control over their data use and prefer receiving high-risk information about their child, even without available treatments.
Area of Science:
- Pediatric Endocrinology
- Clinical Research Ethics
- Public Health
Background:
- The ABIS study is a prospective screening initiative in Sweden focused on identifying children at risk for Type 1 diabetes.
- Understanding participant perspectives is crucial for the ethical and successful execution of long-term pediatric research.
- Previous research has explored parental consent and data sharing preferences in genetic studies.
Purpose of the Study:
- To assess parental trust and data usage preferences in the context of the ABIS study.
- To understand parental desires regarding the communication of high-risk genetic information.
- To compare findings with similar studies conducted in the UK.
Main Methods:
- Analysis of data from the 5-6 year control questionnaire of the ABIS study.
- Quantitative assessment of parental attitudes towards data sharing and information disclosure.
- Comparative analysis with existing UK-based research on parental preferences.
Main Results:
- Participating families expressed high trust in researchers, with minimal concerns about participation.
- A majority of families desire renewed consent for data use beyond the initial agreement.
- Most families want to be informed of high-risk findings, irrespective of treatment availability.
Conclusions:
- Swedish parents in the ABIS study demonstrate significant trust but emphasize the need for explicit consent for secondary data use.
- Parental desire for information disclosure, even for high-risk findings, is strong.
- Findings highlight the importance of clear communication and consent protocols in pediatric research, with potential cross-cultural relevance when compared to UK studies.
Abstract:
Data from the 5-6 year control questionnaire of the ABIS study, a Swedish prospective screening of children for Type 1 diabetes, indicates a genuine trust in the researchers--very few participating families expressed concern about their participation. Nevertheless, a majority do not want their research data to be used beyond the agreement of the original consent. They want to be asked for renewed consent in such cases. A vast majority also want potential high-risk information about their child to be communicated to them. Most participating families want this regardless of whether any preventive treatment is available. Although potential benefits for their child is a motivation for participation for a majority of the respondents, they also claim to be motivated by altruistic reasons. These results are compared to results from two similar studies in the UK.
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