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A corpus-based comparison of stance markers in materials science research article abstracts by Chinese and English L1 authors.

Authors: Xie S, Guo L, Zhang W
Journal: PloS one
mental health psychology open access

Abstract

Data sharing is the practice of making research outputs available to other researchers by adding or combining research participants’ data into larger repositories []. The nuances between genomic data sharing and transfer include: data sharing involves making genomic information, such as DNA sequences, available to a wider scientific community to promote collaboration and scientific discovery. It also refers to making data accessible for use by others beyond the research team, often through controlled or open-access repositories, collaborative platforms, or federated systems. Data sharing emphasizes enabling research, reproducibility, and collaboration while considering privacy, consent, and governance frameworks. In contrast, data transfer refers to the act of moving genomic data from one location to another, such as between servers, institutions, or individuals, with the goal of facilitating data for analysis or interpretation []. In addition, data transfer entails the point-to-point movement of data which could be the physical or digital movement of data from one entity or jurisdiction to another. Formal agreements and adherence to data protection laws may be required to enable this process, which is often subject to legal and regulatory scrutiny particularly in cross-border contexts. Such agreements typically define the parties involved, the specific systems, and the operational purposes (for example, data storage, processing, or analysis) without granting broader access rights. An increasing number of government departments, research communities, funding agencies and scholarly journals are developing initiatives and policies to promote data sharing and greater access to data, recognizing their enormous potential for scientific, social, and economic growth [–]. Open data policies from European countries [,] and the United states of America Wheeland [] increasingly require custodians of human genomic data to make it as widely available as feasible []. Data sharing is regarded as essential for enabling and promoting genomic research in a way that will maximize the benefits to public health []. Additionally, several frameworks guiding the sharing of genomic data have been developed some of which are: the Genomic Data Sharing Policy [], International Declaration on Human Genetic Data [], International code of conduct for genomic and health related data sharing [] and the Framework for Responsible Sharing of Genomic and Health Related Data []. The frameworks indicate that the rights of participants and their communities should be protected, they emphasize the importance of informed consent, de-identification of the shared data, privacy and confidentiality, sharing benefits from the study with the community where the participants were recruited from and ensuring everyone has access to the shared data, placing mechanisms in place to ensure that the shared data is not used to discriminate and stigmatize the individuals. They further indicate that transparency and trust are key components in the sharing of genomic data. Genomic research is increasingly becoming common with researchers participating in different projects required to share details of their participant data. The sharing of genomic data promises to increase research efficiency, expedite translation of research results, and ensure the traceability and transparency of published studies and maximize the utility of results [–]. Research funders and sponsors demand that genomic sequences be deposited on public data repositories unless there are justifiable reasons why this should not be so []. The need for broad access to genomic data brings along a host of ethical concerns, including those related to privacy, confidentiality as well as fairness and equity []. The risk of re-identifiability remains a major ethical concern in genomic data sharing, even with the implementation of technical safeguards such as controlled-access repositories, encryption, pseudonymisation, and secure data transfer protocols [–]. Challenges of effective data sharing include: 1) absence of established standards for data users, 2) researchers from low and middle income countries (LMICs) often experience inequities in collaborative research, including not being appropriately credited for their contributions, 3) loss of intellectual property rights, 4) misuse of data [,] and 5) absence of benefit sharing frameworks [,]. These rooted disparities highlight the need to decolonize research ethics by promoting fair authorship practices, shared governance, and more equitable participation in global health research [,]. An analysis of genomic guidelines, policies, and procedures from LMICs by Ali et al 2021 [] and de Vries [] revealed significant weaknesses and gaps in the governance of genomic research and biobanking [,]. Several LMICs have enacted legislation through Data Protection Acts to protect personal data, however these laws often lack sector-specific provisions and detailed guida