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Information and Communication Technologies, Genes, and Peer-Production of Knowledge to Empower Citizens’ Health

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Abstract

The different and seemingly unrelated practices of Information and Communication Technologies (ICT) used to collect and share personal and scientific data within networked communities, and the organized storage of human genetic samples and information—namely biobanking—have merged with another recent epistemic and social phenomenon, namely scientists and citizens collaborating as “peers” in creating knowledge (or peer-production of knowledge). These different dimensions can be found in joint initiatives where scientists-and-citizens use genetic information and ICT as powerful ways to gain more control over their health and the environment. While this kind of initiative usually takes place only after rights have been infringed (or are put at risk)—as the two cases presented in the paper show—collaborative scientists-and-citizens’ knowledge should be institutionally allowed to complement and corroborate official knowledge-supporting policies.

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Notes

  1. Moore v. Regents of University of California (Cal. App. 2 Dist. 1988; Regents of University of California v. Moore 51 Cal. 3d 1990); Greenberg v. Miami Children’s Hospital (264 F. 10 Supp. 2d 1064 S.D. Fla. 2003); Washington University v. Catalona (437 F. Supp. 2d 985 E.D. Missouri 2006).

  2. Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, Oviedo, 4.4.1997, “Article 21—Prohibition of financial gain: The human body and its parts shall not, as such, give rise to financial gain.”

  3. European Commission, Proposal for a Regulation of the Parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation), Brussels, 25.1.2012, COM(2012) 11 final, 2012/0011 (COD).

  4. EUROCOURSE and ENCR Working Party, Position paper on the Commission’s proposal for a General Data Protection Regulation, September 2012, http://ieaweb.org/wp-content/uploads/2012/12/2012-10-5-ENCR-EUROCOURSE-Position-paper-on-the-proposed-EU-Data-Protection-Regulation.pdf. Accessed July 16, 2015.

  5. See D. Fagin, Toms River: A Story of Science and Salvation, Island Press, Washington DC (reprint edition) 2015. In Italy some communities have used the cancer reimbursement data from the National Health Institution as an indicator for the number of tumors (see Codice 048: cosa ne dicono gli epidemiologi, http://www.epiprev.it/codice-048-cosa-ne-dicono-gli-epidemiologi#epidemiologi, online preview. Accessed July 17, 2015).

  6. Such as the Personal Genome Project, http://www.personalgenomes.org. Accessed February 26, 2015.

  7. Namely, the Municipality of Sarroch (about 60 % of the total investment); the Ministry of Welfare, project RF-SAR-2006-387926, and the Ministry of Education, University and Scientific Research, projects 2006131039 and 2007252HT8 (for the remaining 40 %).

  8. More precisely, the trends in sulfur dioxide were 18 μg/cm annual average in 2008, 8 μg/cm in 2009, 6 μg/cm in 2010, 7 μg/cm in 2011, 6 μg/cm in 2012, 5 μg/cm in 2013, 4 μg/cm in 2014, with exceeding over the limit of 350 μg/cm hourly max of 68 μg/cm in 2008 and zero in the following years. The prevalence of asthma, according to hospital records, was above the regional average about 25 % (males and females) in the period 2001–2005, and was similar to the regional average in the period 2006–2010.

  9. See http://www.fondazionebioteca.it. Accessed February 26, 2015.

  10. F. Forastiere,C.A., M. Davoli, Letter. Quale valutazione epidemiologica per i siti inquinati in Italia? Epidemiol Prev 2014, 38, 1. More information can be found at http://atlanteitaliano.cdca.it/conflitto/conversione-della-centrale-termoelettrica-di-torrevaldaliga-nord-di-civitavecchia. Accessed July 17, 2015.

  11. See http://atlanteitaliano.cdca.it/conflitto/centrale-termoelettrica-a-carbone-federico-ii-brindisi. Accessed July 17, 2015.

  12. See, for instance: Centralina di Milazzo, http://www.incendiomilazzo.it. Accessed February 26, 2015; Centralina di Manfredonia, http://www.ambientesalutemanfredonia.it. Accessed July 17, 2015; Biomonitoraggio Civitavecchia, for information: c.ancona@deplazio.it.

  13. EpiAir2 Project, funded by the Italian Ministry of Health, for the period 2006–2010.

  14. A. Biggeri, The Epidemiologists and the participant-led science, Epidemiol Prev 2014, 38 (3–4), 151–152; D. Grechi, Who is monitoring air pollution in Florence? Epidemiol Prev 2014; 38 (3–4), 154–158.

  15. See http://www.pm2.5firenze.it. Accessed February 26, 2015.

  16. Editorial. (2014). The smog trial in Florence. Epidemiol Prev, 38 (3–4), 153.

  17. M. Tallacchini, Science and Law in Courts, Epidemiol Prev 2014; 38 (3–4), 159–163.

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Acknowledgements

Many citizens, scientists, public officers, and professionals are involved in this ongoing initiative. We wish to warmly thank them. A special thank you to Bruna De Marchi, Monica De Paoli, Daniele Grechi, Maria Luisa Clementi, Ângela Pereira, Silvio Funtowicz, Dolores Catelan and Hal Levin.

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Authors and Affiliations

  1. Dipartimento di Statistica, Informatica, Applicazioni “G. Parenti”, Università di Firenze, Viale Morgagni 59, 50134, Florence, Italy

    Annibale Biggeri

  2. Istituto Scientifico Romagnolo per lo Studio e la Cura dei Tumori (I.R.S.T.), Via Piero Maroncelli 40, 47014, Meldola, FC, Italy

    Annibale Biggeri

  3. Facoltà di Economia e Giurisprudenza, Università Cattolica S.C., Via Emilia Parmense 84, 29100, Piacenza, Italy

    Mariachiara Tallacchini

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  1. Annibale Biggeri
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  2. Mariachiara Tallacchini
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Correspondence to Mariachiara Tallacchini.

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Biggeri, A., Tallacchini, M. Information and Communication Technologies, Genes, and Peer-Production of Knowledge to Empower Citizens’ Health. Sci Eng Ethics 24, 871–885 (2018). https://doi.org/10.1007/s11948-015-9686-5

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