Fadda Marta, Sykora Martin, Elayan Suzanne, Puhan Milo A, Naslund John A, Mooney Stephen J, Albanese Emiliano, Morese Rosalba, Gruebner Oliver
Institute of Public Health, Faculty of Biomedical Sciences della Svizzera italiana, Lugano, Switzerland.
Centre for Information Management, Loughborough University, Loughborough, UK.
Digit Health. 2022 Apr 12;8:20552076221092539. doi: 10.1177/20552076221092539. eCollection 2022 Jan-Dec.
Spatial approaches to epidemiological research with big social media data provide tremendous opportunities to study the relationship between the socio-ecological context where these data are generated and health indicators of interest. Such research poses a number of ethical challenges, particularly in relation to issues such as privacy, informed consent, data security, and storage. While these issues have received considerable attention by researchers in relation to research for physical health purposes in the past 10 years, there have been few efforts to consider the ethical challenges of conducting mental health research, particularly with geo-referenced social media data. The aim of this article is to identify strengths and limitations of current recommendations to address the specific ethical issues of geo-referenced tweets for mental health research. We contribute to the ongoing debate on the ethical implications of big data research and also provide recommendations to researchers and stakeholders alike on how to tackle them, with a specific focus on the use of geo-referenced data for mental health research purposes. With increasing awareness of data privacy and confidentiality issues (even for non-spatial social media data) it becomes crucial to establish professional standards of conduct so that compliance with ethical standards of conducting research with health-related social media data can be prioritized and easily assessed.
利用大型社交媒体数据进行流行病学研究的空间方法,为研究这些数据产生的社会生态背景与感兴趣的健康指标之间的关系提供了巨大机遇。此类研究带来了一些伦理挑战,尤其是在隐私、知情同意、数据安全和存储等问题方面。虽然在过去十年中,这些问题在以身体健康为目的的研究中受到了研究人员的相当关注,但对于开展心理健康研究的伦理挑战,尤其是利用地理定位社交媒体数据开展研究的伦理挑战,却很少有人去考虑。本文旨在确定当前针对心理健康研究中地理定位推文的特定伦理问题所提建议的优势与局限性。我们参与了关于大数据研究伦理影响的持续辩论,并就如何应对这些问题向研究人员和利益相关者提供建议,特别关注将地理定位数据用于心理健康研究目的的情况。随着对数据隐私和保密问题(即使是非空间社交媒体数据)的认识不断提高,制定专业行为标准变得至关重要,以便能够优先考虑并轻松评估与健康相关的社交媒体数据研究中对伦理标准的遵守情况。