Mine, Yours, Ours? Sharing Data on Human Genetic Variation

Abstract

The achievement of a robust, effective and responsible form of data sharing is currently regarded as a priority for biological and bio-medical research. Empirical evaluations of data sharing may be regarded as an indispensable first step in the identification of critical aspects and the development of strategies aimed at increasing availability of research data for the scientific community as a whole. Research concerning human genetic variation represents a potential forerunner in the establishment of widespread sharing of primary datasets. However, no specific analysis has been conducted to date in order to ascertain whether the sharing of primary datasets is common-practice in this research field. To this aim, we analyzed a total of 543 mitochondrial and Y chromosomal datasets reported in 508 papers indexed in the Pubmed database from 2008 to 2011. A substantial portion of datasets (21.9%) was found to have been withheld, while neither strong editorial policies nor high impact factor proved to be effective in increasing the sharing rate beyond the current figure of 80.5%. Disaggregating datasets for research fields, we could observe a substantially lower sharing in medical than evolutionary and forensic genetics, more evident for whole mtDNA sequences (15.0% vs 99.6%). The low rate of positive responses to e-mail requests sent to corresponding authors of withheld datasets (28.6%) suggests that sharing should be regarded as a prerequisite for final paper acceptance, while making authors deposit their results in open online databases which provide data quality control seems to provide the best-practice standard. Finally, we estimated that 29.8% to 32.9% of total resources are used to generate withheld datasets, implying that an important portion of research funding does not produce shared knowledge. By making the scientific community and the public aware of this important aspect, we may help popularize a more effective culture of data sharing.

What Drives Academic Data Sharing?

“…The 98 papers that made our final sample come from the following disciplines: Science, technology, engineering, and mathematics (60 papers), humanities (9), social sciences (6), law (1), interdisciplinary or no disciplinary focus (22). The distribution of the papers indicates that data sharing is an issue of relevance across all research areas, above all the STEM disciplines.…”

“…Enke et al [21] states that the legal framework concerning the ownership of research data before and after deposition in a database is complex and involves many uncertainties that deter data sharing (see also [34,97]). Eisenberg [98] even regards the absence of adequate intellectual property rights, especially in the case of patent-relevant research, as a barrier for data sharing and therefore innovation (see also [22,99]). Chandramohan et al [100] emphasize that data collection financed by tax money is or should be a public good.…”

“…Costello [34] encapsulates this issue: "If I release data, then I may be scooped by somebody else producing papers from them." Many other authors in our sample examine the issue of competitive misuse [5,22,23,46,48,[102][103][104]. Another issue regarding the recipient's use of data concerns a possible flawed interpretation (e.g., [21,59,89,105,106]).…”

To share or not to share? Expected pros and cons of data sharing in radiological research

“…To make datasets from medical research publicly available in a timely fashion requires regulations that maximize the benefits and minimize the risks [52,53]. Indeed, data sharing provides a potential for stimulating new ideas, avoiding duplication of trials, and enhance transparency [36,[54][55][56][57] as well as increasing collaboration and interdisciplinary research [1,58,59]. However, at the same time, sharing clinical data presents some risks, burdens and challenges such as the need to preserve the privacy of patients, to defend the legitimate economic interests of the sponsors, and to guard against invalid secondary analyses potentially undermining trust in clinical trials or otherwise harming public health [36,37,53,60].…”

Información bioantropológica publicada de Patagonia Austral. Un abordaje de la situación actual desde el data-sharing

“…Durante las últimas décadas, los avances tecnológicos han contribuido al aumento exponencial en la generación de nuevas investigaciones y datos científicos (Uhlir y Schröeder 2007;Kullmer 2008;Borgman 2012;Milia et al 2012;Torres-Salinas et al 2012;Reed et al 2015). La bioantropología no ha quedado al margen, haciendo uso de nuevos enfoques metodológicos como los estudios de ADN, isótopos estables (IE) o herramientas computacionales (Kullmer 2008); todos ellos son elementos que han ayudado a profundizar e incrementar la información que se puede obtener de una misma muestra.…”