Placeboes Research Foundation (“Placeboes”, “Foundation”, “we”, “our”, or “us”) is committed to advancing scientific knowledge through responsible collaboration, transparency, reproducibility, and appropriate sharing of research and institutional data.
This Data Sharing Policy establishes the principles governing the sharing, access, transfer, publication, reuse, and protection of data generated, collected, received, processed, or maintained by Placeboes Research Foundation.
The Policy applies, as appropriate, to research data, scientific datasets, participant-derived data, collaborative data, technical and computational data, and other information for which Placeboes has responsibility or stewardship.
Data sharing must remain consistent with applicable law, research ethics, informed consent, privacy and confidentiality requirements, contractual obligations, intellectual-property rights, and the legitimate interests of research participants, collaborators, and the Foundation.
Placeboes supports data sharing where it can advance scientific knowledge, enable verification and reproducibility, facilitate responsible secondary research, encourage collaboration, or otherwise contribute to societal benefit.
Data sharing will be guided by the following principles:
The principle of openness does not imply that all data should be made publicly accessible.
Data governed by this Policy may include:
Research Data
Data generated, collected, observed, measured, derived, or analysed during scientific research, including experimental, clinical, behavioural, physiological, imaging, survey, computational, laboratory, or other research data.
Participant-Derived Data
Information obtained from or concerning research participants, patients, volunteers, community participants, or other individuals involved in research.
Derived and Analytical Data
Processed datasets, statistical outputs, computational representations, annotations, classifications, models, features, or other information derived from primary data.
Collaborative Data
Data received from or generated jointly with universities, hospitals, research institutions, investigators, industry partners, community organizations, or other collaborators.
Technical and Technology Data
Data arising from software, prototypes, devices, digital platforms, algorithms, simulations, artificial intelligence systems, or technology-development programmes.
Institutional Data
Operational, administrative, programme-related, or organizational information generated or maintained by Placeboes.
Different categories of data may require different levels of protection and access.
Where appropriate, Placeboes may classify shareable research data into different access levels.
Open Access Data
Data may be made publicly available where there are no material privacy, confidentiality, ethical, contractual, security, or intellectual-property restrictions.
Controlled Access Data
Data may be made available to qualified applicants following review of the proposed use and subject to appropriate agreements and safeguards.
Restricted Data
Data presenting greater privacy, confidentiality, ethical, commercial, security, or re-identification concerns may be accessible only to specifically authorized individuals or collaborators.
Non-Shareable Data
Certain data may not be shared where sharing would conflict with law, consent, ethical approval, confidentiality, contractual obligations, intellectual-property protection, participant interests, security considerations, or other legitimate restrictions.
Protection of research participants takes precedence over the objective of maximizing data availability.
Participant-derived data may be shared only where sharing is consistent with:
Where required, data should be de-identified, anonymized, pseudonymized, aggregated, or otherwise appropriately protected before sharing.
Removal of direct identifiers does not necessarily eliminate the possibility that an individual could be re-identified.
Placeboes may therefore consider the nature of the dataset, combinations of variables, rarity of characteristics, sample size, availability of external information, technological developments, and other relevant factors when assessing re-identification risk.
Additional safeguards or controlled-access arrangements may be required where de-identified data retain a meaningful possibility of re-identification.
Recipients of data must not attempt to re-identify individuals from de-identified or pseudonymized datasets unless expressly authorized for a legitimate and ethically approved purpose.
Only data reasonably necessary for the approved scientific, collaborative, or institutional purpose should be shared.
Where a legitimate purpose can be achieved using aggregated, anonymized, summarized, or otherwise less sensitive information, such forms of data should ordinarily be preferred.
Requests for non-public research data should ordinarily identify:
Placeboes may request additional information where necessary to evaluate a data-access request.
Submission of a request does not create an entitlement to receive data.
Data-sharing requests may be evaluated according to factors including:
Placeboes reserves the right to approve, condition, defer, or decline a request where appropriate.
Where appropriate, access to non-public data may require a Data Sharing Agreement, Data Use Agreement, Material Transfer Agreement, collaboration agreement, confidentiality agreement, or other suitable instrument.
Such agreements may specify:
Recipients of non-public data must implement security measures appropriate to the nature and sensitivity of the information.
Such measures may include access controls, authentication, encryption, secure storage, restricted copying or downloading, audit mechanisms, secure transfer procedures, and organizational safeguards.
Data must not be stored or transferred using systems that provide inadequate protection for the applicable level of sensitivity.
Confidential, sensitive, proprietary, or otherwise restricted information must not be publicly released merely in the interest of openness.
Additional safeguards may be required for data involving identifiable individuals, health information, confidential collaborator information, unpublished discoveries, proprietary technologies, commercially sensitive information, security-sensitive information, or information subject to contractual restrictions.
Data generated through collaborative research will be governed by the applicable research protocol, ethics approvals, collaboration agreements, funding conditions, institutional policies, intellectual-property arrangements, and other agreed terms.
No collaborator should independently disclose jointly governed data where such disclosure would violate an applicable agreement, participant commitment, or legitimate right of another party.
Data stewardship responsibilities should, where practical, be established at the beginning of collaborative projects.
Placeboes supports responsible availability of data underlying scientific publications where doing so is ethically, legally, scientifically, and practically appropriate.
Supporting datasets may be:
The form of sharing should reflect the nature and sensitivity of the data.
Where research data are deposited in external repositories, repositories should be selected with consideration of scientific appropriateness, sustainability, access controls, metadata standards, security, preservation, participant consent, and applicable legal or contractual requirements.
Repository deposition does not remove obligations relating to privacy, ethics, intellectual property, or responsible stewardship.
Data originally collected for one research purpose may be used for secondary research only where such use is ethically and legally permissible and consistent with the applicable consent, research approvals, agreements, and governance requirements.
Where required, additional ethics review, authorization, consent, or other safeguards must be obtained before secondary use.
Research data must not be uploaded to external artificial intelligence systems, generative AI services, machine-learning platforms, or other computational services where doing so could compromise confidentiality, privacy, intellectual property, research integrity, contractual obligations, or participant protections.
Identifiable participant data and confidential research information should not be entered into general-purpose public AI systems.
Where AI or machine-learning methods form part of an approved research programme, the use of data should be governed by the applicable research protocol, ethics approval, data-management arrangements, security requirements, and relevant Placeboes policies.
Sharing data does not automatically transfer ownership, copyright, database rights, patent rights, know-how, or other intellectual-property rights.
Where datasets contain or relate to potentially patentable inventions, proprietary technology, software, algorithms, commercially sensitive information, or other protectable intellectual property, disclosure may be delayed or restricted where reasonably necessary to protect legitimate rights.
Recipients should appropriately acknowledge the origin of shared datasets and recognize the contributions of researchers, participants, collaborators, institutions, and funding organizations where applicable.
Citation, acknowledgement, or authorship expectations should be determined according to applicable scientific standards and the nature of the contribution.
Provision of a dataset alone does not automatically establish entitlement to authorship, nor does access to data eliminate obligations to provide appropriate attribution.
Recipients must not transfer, disclose, publish, sell, sublicense, redistribute, or otherwise make restricted data available to another individual or organization unless such sharing is expressly permitted.
Where additional investigators require access, appropriate authorization should be obtained before access is provided.
Data shared for scientific, educational, or non-commercial purposes must not be subsequently used for commercial purposes unless such use is expressly authorized.
Commercial access may require separate review, licensing, contractual arrangements, or intellectual-property agreements.
Shared data should be retained only for as long as reasonably required for the authorized purpose or as required by applicable legal, ethical, scientific, contractual, or institutional requirements.
Where required by an agreement or authorization, recipients must securely delete, destroy, or return data at the end of the approved access period and confirm such action when requested.
Any suspected or confirmed unauthorized access, disclosure, loss, alteration, re-identification, misuse, or security breach involving data shared by Placeboes should be reported promptly to the Foundation.
Recipients are expected to cooperate with reasonable measures to investigate, contain, mitigate, and remediate such incidents.
Placeboes may suspend or terminate access where data are used contrary to the approved purpose, applicable agreement, or this Policy.
Placeboes may restrict, suspend, or withdraw access to shared data where necessary because of:
Where data are transferred across national jurisdictions, Placeboes and recipients should consider applicable data-protection laws, ethical requirements, contractual safeguards, transfer restrictions, and security requirements.
International collaboration does not remove the obligation to protect research participants and other individuals whose information may be contained in shared datasets.
Researchers and project leads responsible for data should take reasonable measures to ensure that data are appropriately documented, stored, protected, retained, and shared throughout the research lifecycle.
Where appropriate, research projects should establish data-management and sharing arrangements before data collection begins.
Responsibility for data stewardship continues after publication where datasets remain under the control of Placeboes.
This Policy should be read together with applicable Placeboes policies and governance documents, including the:
Where a research protocol, informed-consent document, ethics approval, collaboration agreement, funding condition, data-sharing agreement, or applicable law imposes more specific requirements, those requirements apply to the relevant data and activity.
Placeboes may revise this Data Sharing Policy periodically to reflect developments in research practices, technology, ethical standards, institutional requirements, or applicable law.
Revisions will be published on the Foundation's website together with an updated effective date.
Questions concerning this Data Sharing Policy or requests relating to access to Placeboes research data may be directed to:
Placeboes Research Foundation
Email: info@placeboes.org
Website: www.placeboes.org