Additionally, substantial efforts are needed for efficient and ethical international sample and data sharing. This is an issue under active debate, as countries have different approaches to weighing concerns about the privacy of individuals against the collective benefits of science, and the regulatory landscape of individual-level genotype data has been uneven. For example, while the UK allows open access of individual-level genotype data with a valid scientific proposal, other countries, such as Denmark, Iceland, and China, tightly regulate the sharing of such data. Some GWAS consortia, including the Enhancing NeuroImaging Genetics through Meta-Analysis (ENIGMA) and Social Science Genetic Association Consortium (SSGAC), overcame these regulatory challenges using essentially a “federated sharing model” (Fiume et al., 2019). Without sharing individual-level genotype data, a study in these consortia follows the prespecified analytic protocol and contributes its summary statistics to the meta-analysis, allowing the participation of studies that do not have permission to share individual-level data. Researchers should be aware of such options and restrictions, and we recommend regular review of policies as scientific advances may change the ground on which they are based.
