Open AccessLongitudinal Health Studies: Secondary Uses Serving the Future
Author(s) -
Alexander Bernier,
Bartha Maria Knoppers
Publication year - 2021
Publication title -
biopreservation and biobanking
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.545
H-Index - 34
eISSN - 1947-5535
pISSN - 1947-5543
DOI - 10.1089/bio.2020.0171
Subject(s) - pooling , dialog box , data sharing , reuse , population , data access , longitudinal study , longitudinal data , research ethics , computer science , data science , psychology , medicine , environmental health , database , data mining , alternative medicine , engineering , world wide web , pathology , artificial intelligence , psychiatry , waste management
Our research compares the ethical and institutional conditions that govern the sharing and secondary use of longitudinal population health data from multiple cohorts. The data use and data sharing conditions applicable to 27 population health cohorts were assessed. This assessment was performed in consulting the informed consent materials and institutional policies applicable to the use of data. Descriptions drawn from the research ethics consent materials were refined through dialog with the institutional staff responsible for overseeing access to data, where possible. Our results demonstrate that data of longitudinal population health cohorts assessed can generally be shared and used for secondary purposes. However, the purposes of secondary use and the preconditions applicable thereto are highly variable. Heterogeneous use conditions can also impede the storage of legacy research data and the pooling thereof for the purpose of common reuse.