Researchers’ Duty to Share Pre-publication Data: From the Prima Facie Duty to Practice
The purpose of this chapter is to offer an ethical investigation into whether researchers have a duty to share pre-published bio-medical data with the scientific community. The central questions of the chapter are the following: do researchers have a prima facie duty to share pre-published data? And if so, what stakes and aspects of a concrete situation need to be taken into consideration in order to assess whether and to what extent researchers’ prima facie duty to share data applies? We will argue that based upon their basic duties to benefit society and to promote scientific knowledge, researchers have a prima facie duty to share data. We will also argue that in order to determine whether the prima facie duty applies in practice it is indispensable to take into account the stakes of the persons concerned as well as context dependent aspects. The chapter’s overall goal is to build an analytical and ethical framework that helps to assess with regard to concrete situations whether researchers’ duty to share data applies. To this end we analyse the concept of data sharing and clarify what data sharing might imply in practice. To offer an overview of the different stakeholders’ concerns we will analyse the normative-informational environment in which data producing researchers (to whom the prima facie duty to share data applies) are usually situated. In the last step we focus on the ethically relevant context dependent aspects and illustrate how they affect researchers’ prima facie duty to share data and stakeholders’ potentially conflicting stakes.
- Beauchamp, T.L., and J.F. Childress. 2009. Principles of biomedical ethics. Oxford/New York: Oxford Univ. Press.Google Scholar
- Brakewood, Beth, and Russell A. Poldrack. 2013. The ethics of secondary data analysis: Considering the application of Belmont principles to the sharing of neuroimaging data. NeuroImage 82: 671–676. doi:http://dx.doi.org/10.1016/j.neuroimage.2013.02.040.CrossRefGoogle Scholar
- Campbell, Eric G., and Eran Bendavid. 2003. Data-sharing and data-withholding in the genetics and the life sciences: Results of a national survey of technology transfer officers. Journal of Health Care Law and Policy 6(2): 241–255.Google Scholar
- Court of Justice of the European Union: Press Release 117/15. 2015. Judgement in Case C-362/14 Maximillian Schrems v Data Protection Commissioner, October 6. http://curia.europa.eu/jcms/upload/docs/application/pdf/2015-10/cp150117en.pdf. Accessed 18 Nov 2015.
- DFG. 2013. Sicherung guter wissenschaftlicher Praxis. Denkschrift. Empfehlungen der Kommission “Selbstkontrolle in der Wissenschaft”, 2nd ed. Weinheim: WILEY‐VCH.Google Scholar
- EURAT (Ethical and Legal Aspects of Whole Human Genome Sequencing). 2013. Position Paper. Cornerstones for an ethically and legally informed practice of Whole Genome Sequencing: Code of Conduct and Patient Consent Models. http://www.uni-heidelberg.de/md/totalsequenzierung/informationen/mk_eurat_position_paper.pdf. Accessed 07 Nov 2015.
- First International Strategy Meeting on Human Genome Sequencing. 1996. Bermuda principles. http://web.ornl.gov/sci/techresources/Human_Genome/research/bermuda.shtml#1. Accessed 02 Nov 2015.
- Floridi, Luciano. 2008. Foundations of information ethics. In The handbook of information and computer ethics, ed. Kenneth E. Himma and Herman T. Tavani, 3–23. Hoboken: Wiley.Google Scholar
- Fort Lauderdale Agreement. 2003. Sharing data from large-scale biological research projects: A system of tripartite responsibility. http://www.genome.gov/Pages/Research/WellcomeReport0303.pdf. Accessed 04 Nov 2015.
- Global Alliance for Genomics and Health. 2014. Framework for responsible sharing of genomic and health-related data. https://genomicsandhealth.org/about-the-global-alliance/key-documents/framework-responsible-sharing-genomic-and-health-related-data. Accessed 02 Nov 2015.
- Heinemann, Thomas. 2010. Forschung und Gesellschaft. In Forschungsethik. Eine Einführung, ed. Michael Fuchs, Thomas Heinemann, Bert Heinrichs, Dietmar Hübner, Jens Kipper, Kathrin Rottländer, Thomas Runkel, Tade Matthias Spranger, Verena Vermeulen, and Moritz Völker-Albert, 98–119. Stuttgart/Weimar: J.B. Metzler.Google Scholar
- Homer, Nils, Szabolcs Szelinger, Margot Redman, David Duggan, Waibhav Tembe, Jill Muehling, John V. Pearson, Dietrich A. Stephan, Stanley F. Nelson, and David W. Craig. 2008. Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genetics 4(8), e1000167. doi:10.1371/journal.pgen.1000167.CrossRefGoogle Scholar
- Joly, Yann, Edward S. Dove, Bartha M. Knoppers, Martin Bobrow, and Don Chalmers. 2012. Data sharing in the post-genomic world: The experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Computational Biology 8(7): e1002549. doi:10.1371/journal.pcbi.1002549.CrossRefGoogle Scholar
- Locke, John. 1960. Two treatises of government. Cambridge: Univ. Press.Google Scholar
- Mauthner, Natasha. 2013. Open access data sharing policies: Implications for academic roles, practices and identities. Society for Research into Higher Education.Google Scholar
- Merton, Robert K. 1961. Social theory and social structure. Glencoe/Illinois: The Free Press.Google Scholar
- Mittelstadt, Brent Daniel, and Luciano Floridi. 2016. The ethics of big data: Current and foreseeable issues in biomedical contexts. Science and Engineering Ethics 22(2): 303–341. doi:10.1007/s11948-015-9652-2.
- Nida-Rümelin, Julian. 2005. Wissenschaftsethik. In Julian Nida-Rümelin, ed. Angewandte Ethik, 835–860. Stuttgart: Alfred Kröner.Google Scholar
- Rössler, Beate. 2001. Der Wert des Privaten. Originalausg., 1. Aufl. Aufl. Suhrkamp-Taschenbuch Wissenschaft; 1530, vol. 1530. Frankfurt am Main: Suhrkamp.Google Scholar
- Sane, Jussi, and Michael Edelstein. 2015. Overcoming barriers to data sharing in public health. A global perspective, ed. Centre on Global Health Security. Chatham House.Google Scholar
- Simpson, Claire L., Aaron J. Goldenberg, Rob Culverhouse, Denise Daley, Robert P. Igo, Gail P.Jarvik, Diptasri M. Mandal, et al. 2014. Practical barriers and ethical challenges in genetic data sharing. International Journal of Environmental Research and Public Health 11(8): 8383–8398. doi:10.3390/ijerph110808383.
- Wellcome Trust. 2013. Impact of the draft European Data Protection Regulation and proposed amendments from the rapporteur of the LIBE committee on scientific research. http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/wtvm054713.pdf. Accessed 28 Nov 2015.