CONCLUSION
Our participants expressed very clear information needs and a strong desire to be actively engaged in future data sharing decisions. Given that many researchers collaborate with commercial parties and/or pharmaceutical companies, building public confidence in these institutions may be of benefit. Illustrative examples addressing privacy concerns and clarifying difficult terms would facilitate consent decision‐making. Although our participants displayed great altruism in sharing their data and accepted that broad consent would ultimately facilitate future research, broad consent did not reflect their ideal situation. Dynamic consent may be an option but warrants further feasibility research.