Research opportunities in precision oncology: perspectives on biospecimen and genomic data sharing from adults with cancer in Ireland.

Abstract

Background: Although surveys of people living with cancer in other nations have generally found a high degree of willingness to donate to research services such as genomic databases and biobanks, results may vary between countries. Additional questions also remain surrounding issues such as preferred model of consent, reporting of findings and concerns surrounding potential commercial application of health data.

Methods: Data was gathered from 176 adults living with and beyond cancer in Ireland over a 16-month period, utilising an online survey platform. Descriptive statistics were used to characterise the survey cohort, with relationships between variables tested using the Spearman correlation or chi-square analysis.

Results: Twenty-eight percent of respondents had previously donated a biological sample to research, while all those who had not previously donated indicated they would do so if given the opportunity. There was a strong preference for total transparency with personal health data, with the vast majority wanting to know of any risk factors identified in their genome, even if these risks were not medically actionable. Respondents held a high degree of trust in both the clinical and scientific community, with most indicating that this played a major role in influencing their decision to donate. Finally, while most did not have issues with commercial involvement in the donation process, 26% did express some reservations.

Conclusion: Our results indicate a high degree of receptiveness to biological sample donation amongst people living with cancer in Ireland, suggesting that further efforts to recruit individuals could yield substantial improvements in sample donation rates.