Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations

Janssens, A. Cecile J.W.; Kraft, P.

doi:10.1371/journal.pmed.1001328

Cited by 64 publications

(52 citation statements)

References 17 publications

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“…McGuire (1984) En ce concerne la méthodologie des recherches intégrant des informations obtenues sur Facebook, l'analyse révèle la piètre validité des informations relatives à l'âge des plus jeunes internautes. Nos observations suggèrent une interprétation prudente des données personnelles et conirme l'intérêt d'étudier la reproductibilité des phénomènes observés en ligne (Janssens et Kraft, 2012). L'analyse présentée repose sur des données colligées lors de recherches commandées par des décideurs gouvernementaux et instrumentalisée par une entreprise commerciale de recherches et sondages.…”

Section: Resultsunclassified

Utilisation du réseau Facebook dans une campagne de prévention pour jeunes adolescents : analyse secondaire des données d’une étude postcampagne

Giroux¹

2013

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Section: Resultsunclassified

Utilisation du réseau Facebook dans une campagne de prévention pour jeunes adolescents : analyse secondaire des données d’une étude postcampagne

Giroux¹

2013

ricsp

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“…These include biases related to self-selection of those who participate via social media, social desirability in the reporting of health states and information (e.g. under-reporting of substance abuse), and use of selfreported phenotypic data that would, in other contexts, be observed and collected by a third party (Janssens & Kraft, 2012).…”

Section: Designmentioning

confidence: 99%

Ethical issues when using social media for health outside professional relationships

DeCamp

2015

International Review of Psychiatry

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Social media have the potential to revolutionize health and healthcare, but fulfilling this potential requires attention to the ethical issues social media may raise. This article reviews the major ethical issues arising when social media are used for research, public health, mobile health applications, and global health. It focuses on social media use outside fiduciary relationships between healthcare professionals and patients. Emphasis is given to the potential of social media in these contexts, the ethical issues relatively unique to each, and where possible how existing ethical principles and frameworks could help navigate these issues. In some cases social media create the circumstance for particular ethical issues but also facilitate managing them, such as in informed consent for research. In other cases, disagreement exists about whether social media - despite their potential - should be used for certain purposes, such as in public health surveillance (where confidentiality represents a significant ethical concern). In still others, ethical uncertainty exists about how social media will affect ethical issues, such as inequality in global health. As social media technologies continue to develop, identifying and managing the ethical issues they raise will be critical to their success in improving health while preserving fundamental ethical values.

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“…35,[38][39][40][41] The research community needs to be aware of the implicit expectations of the citizen scientists and making sure that data collection is not the only goal of the project. While moderating the high expectations of the citizen scientist, the researchers need to ensure the proper use of the collected data to help improve the health and knowledge of, for example, the human subjects.…”

Section: Citizen Scientist Crowdsourced Research and The Microbiomementioning

confidence: 99%

“…Because of selection bias, information bias, and confounding effects, the findings of research using self-selected participants requires cautious interpretation. 40 It requires the implementation of the proper analytical methodology to identify and possibly compensate for those biases and confounding effects. 40 This type of collection efforts require the full awareness of the participants that the observed correlation or associations might lack accuracy or generality because of those methodological limitations.…”

Section: Citizen Scientist Crowdsourced Research and The Microbiomementioning

confidence: 99%

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Promises and Prospects of Microbiome Studies

Rivera¹,

Izard

2015

Metagenomics for Microbiology

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Since Anthony van Leeuwenhoek, first microscopic observations of the unseen microbiota and the more recent realization that little of the microbes in the biosphere are known, humans have developed a deep curiosity to fully understand the inner workings of the microbial realm. Our ability to characterize the complexity of microbial communities in their natural habitats has dramatically improved over the past decade thanks to advances in high-throughput methodologies. By eliminating the need to isolate and culture individual species, metagenomics approaches have removed many of the obstacles that hindered research in the ecology of mixed microbial consortia, providing valuable information about the diversity, composition, function, and metabolic capability of the community.Microbes are the unseen majority with the capability to colonize every environment, including our bodies. The establishment and composition of a stable human microbiome is determined by the host genetics, immunocompetence, and life-style choices. Our life-style choices determine our exposure to many external and internal environmental factors that permanently or temporarily can influence our microbiome composition. Figure 10.1 illustrates some of the life-style-related factors that might influence the microbiota of the skin, mouth, and gut. It is not limited to what we carry, touch, breath, and eat. Other dispersal vectors include secretion, excretions, aerosols, air flow, animals, moving surfaces, water, beverages, food, contact, wind, tools, toiletry, and others. These influence the microbiome membership, who are present, and they have the ability to participate in the microbiome dynamic within an environment. The establishment of a microbial community is dependent on many environmental factors, including pH, temperature, altitude, weather, soil type, nutrient availability, relative humidity, air quality, pollutants, microbial competitors, and others. In other words, we are superorganisms interconnected with other living forms on this Earth. 146 Metagenomics for MicrobiologyFig. 10.1. Microbiome of modern humans is influenced by life-style choices.During everyday life, humans are exposed to many external and internal environmental factors that can influence the composition of their microbiome. The human microbiome is here represented by the microbiota of the skin, mouth, and gut, and next to each body site a series of environmental modifiers. Some of these modifiers, such as general health, diet, medications, and stress, can affect the microbiota of more than one body site, but others, such as toothbrush and toothpaste, can directly modify the microbiota of only one body site. Promises and Prospects of Microbiome Studies 147The exploration of the microbial worlds uncovered the extreme microbial diversity throughout the biosphere, from hydrothermal vents on the ocean floor to the intestinal tract of animals. In addition to metagenomics, other technologies including metatranscriptomics, metaproteomics, metabolomics, and metalipidomics can provide...

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Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations

Abstract: An Essay by A. Cecile Janssens and Peter Kraft discusses the limitations inherent in research involving collection of self-reported data by self-selected participants, and makes proposals for upfront communication of such limitations to study participants.

Cited by 64 publications

References 17 publications

Utilisation du réseau Facebook dans une campagne de prévention pour jeunes adolescents : analyse secondaire des données d’une étude postcampagne

Utilisation du réseau Facebook dans une campagne de prévention pour jeunes adolescents : analyse secondaire des données d’une étude postcampagne

Ethical issues when using social media for health outside professional relationships

Promises and Prospects of Microbiome Studies

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