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Table 1 Overview of the main domains and sub-domains of the patient information in research on iPSCs

From: Donor information in research and drug evaluation with induced pluripotent stem cells (iPSCs)

Domains Topic of information
1. General information for the donor
 Study’s background information The aim and method of the study
Collection of donor’s personal data
Biospecimen’s collection
Contact information
 Genetic modification Genetic modification of the biomaterial in the course of the study
 Commercial potential of the research Property of body tissues
Financial compensation for the donor
Commercial result of the research
Individual and commercial interests of the researchers
2. Storage of the cell lines and protection of privacy and confidentiality
 Storage of cells and cell lines Information on the possibility of indefinite storage
Destruction of the biomaterial
Storage in repositories
 Protection of privacy and confidentiality Association of biomaterial with particular individuals
Possibility of reidentification
Data sharing
Measures for the protection of donor’s privacy
 Incidental findings Possibility of acquisition of incidental medical findings
Procedures for the return of incidental findings
3. Research with the use of biospecimen
 Future research Use of biomaterial in other studies
Acquisition of the consent for other studies
 Reproductive research Use of biomaterial for creation of gametes and embryos
Use of biomaterial for the creation of human clones
 Transplantation of cells and organs Use of biomaterial in regenerative medicine
Use of biomaterial for growing human organs
 Research on animals Grafting of iPSCs into non-human animals
Creation of human-animal chimeras
4. Process of donor information
 Provision of information Methods of donor information
 Clarification of information Evaluation of donor’s understanding of provided information