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

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, these results can vary from country to country. Additional questions also remain surrounding issues such as preferred model of consent, reporting of findings and concerns surrounding potential commercial application of health data. To address some of these gaps in our current knowledge, we collected responses from 176 people living with and beyond cancer in Ireland over a 16-month period. Twenty-eight percent of our survey respondents had previously donated a biological sample to research, with the majority indicating that they did so for altruistic reasons. We found that the vast majority of those who had not previously donated samples would do so if given the opportunity, suggesting that there is a significant untapped pool of potential sample donors, and increased efforts by researchers and clinicians to recruit these individuals, in an ethically acceptable way, could yield a substantial improvement in the availability of biological samples and data for research. There was also a strong preference among respondents 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. A strong level of trust in both the clinical and scientific community was also observed in the responses, with most indicating that this played a major role in influencing their decision to donate. Finally, we found that although most respondents did not have issues with the involvement of a commercial entity in the donation process, there was still a sizeable percentage (26%) who did have some reservations.