ArticleHealth research policy and systems2025
Ethical and regulatory requirements for conducting researcher-driven large-scale multinational genetic haematological studies: the INHERENT experience.
Article in Health research policy and systems, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
- Non-Invasive Prenatal Testing (NIPT): A Paradigm Shift in Prenatal Care.International journal of preventive medicine · 2025Review
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe International Hemoglobinopathy Research Network (INHERENT) focuses on studying genetic modifiers through large, multi-ethnic genome-wide association studies involving paediatric and adult patients with haemoglobinopathies. The growing integration of genetics and genomics into global healthcare has highlighted the need for standardized policies on biospecimen and data handling. This study describes the necessary ethical and regulatory framework for conducting multinational, researcher-driven genetic studies on humans.
methodsKey areas related to the INHERENT study were identified through collaborative research. A review of the grey literature was performed, consulting official sources. An online survey was conducted to identify the local rules.
resultsDespite the availability of 33 international documents applicable to the three key areas of our investigation, i.e. personal data processing, clinical research and biospecimen management, there is no unique reference for genetic studies without investigational drugs, i.e. outside the scope of good clinical practice. Specific laws and guidelines/recommendations governing the processing of personal data and privacy have been released in most of the 32 surveyed countries. As an example, discordances were found regarding the requirement to get approval from the ethics committees.
conclusionsSuch heterogeneity challenges the scientific community in conducting these genetic studies. This study calls for further efforts to harmonize international standards for genetic research.
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Registered trials
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