The HEAP project is reaching out to data cohort “owners” across Europe to invite them to participate in a 20-minute on-line questionnaire, focusing on how cohorts manage participant health data and tissue samples. The questionnaire is part of a research project led by MLCF as part of the HEAP Ethics and Regulations work package and the Ethics and Law Working Group of the European Human Exposome Network.
The questionnaire focuses on two main areas:
- Participant consent, and how to ensure that any follow-on studies using cohort data or tissue follow data protection, ethics, and FAIR data principles.
- Governance of cohorts, and striking a balance between efficiently conducting biomedical research using cohort data, and safeguarding the interests of participants and wider society
The research will result in two papers, one presenting the results of the questionnaire, and the second providing reflections and recommendations on how cohort governance and data processing could be designed to meet both regulatory and social challenges, and fulfil their research mission.
Evert Ben van Veen said, There is considerable debate about the topics of broad and informed consent and governance of cohorts, but little empirical material on how cohorts currently approach them in practice. The questionnaire aims to provide that empirical material.”
The results of the questionnaire will be consultable by all participants, while preserving confidentiality (link to privacy statement) Cohorts will only be mentioned when the participants have authorised this, and respondents will only be quoted after giving informed consent.To complete the questionnaire, click here.
More detailed information on the questionnaire, and background information on the research topics is available here.