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Operationalizing the Use of Existing Data in Support of Biomedical Research and Innovation: An Inclusive and Sustainable Approach

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The Law and Ethics of Data Sharing in Health Sciences

Part of the book series: Perspectives in Law, Business and Innovation ((PLBI))

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Abstract

Advancements in science and technology has created an expectation and demand on research and innovation to address some of the greatest societal challenges, particularly in the health and biomedical fields. There is an inherent promise associated with the potential of breakthrough technologies, particularly when combined with quality health-related data, to deliver significant improved health outcomes globally. However, science and innovation alone are not sufficient to achieve societal transformation towards global health. There is an observed reluctance to operationalize the use of existing data, mainly due to privacy and security concerns, as well as a palpable apprehension around how, for what purpose, and by whom data will be used. Research and innovation need to be supported by behavior and attitude change in order to foster inclusive participation and effective societal uptake of the resulting solutions. This chapter explores how the principles of Responsible Research and Innovation can be applied to provide a legally supported, inclusive, and sustainable approach to operationalizing the use of existing data in support of health-related innovations. By incorporating a deliberative and responsive process to citizen science practices, the root causes underlying this observed reluctance can be identified and addressed. The overall aim is to gain a fundamental understanding of the real and perceived barriers to utilizing data for research and innovation purposes, which can then be used to proffer solutions to create a responsive and inclusive culture to sustainably support the ongoing responsible use of data.

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Notes

  1. 1.

    See, e.g., Vos et al. (2020), pp. 1204–1222; Goldman et al. (2005), pp. W5–R5.

  2. 2.

    Murray et al. (2020), pp. 1135–1159.

  3. 3.

    World Health Organization (2022).

  4. 4.

    Florent (2020), p. 1129.

  5. 5.

    See, e.g., Abegunde et al. (2007), pp. 1929–1938; Proksch et al. (2019), pp. 169–179.

  6. 6.

    See, e.g., Coorevits et al. (2013), pp. 547–560; Groves et al. (2016), pp. 1–20; Adibuzzaman et al. (2017), p. 384. American Medical Informatics Association; Bonander and Gates (2010), p. e1346.

  7. 7.

    See e.g., World Health Organization (2015); World Health Organization (2020b).

  8. 8.

    O’Neill (2016).

  9. 9.

    See, e.g., Bax et al. (2001), pp. 316–325; Thakur et al. (2012), pp. 562–569; Jirotka et al. (2005), pp. 369–398.

  10. 10.

    See, e.g., Kalra et al. (2017), pp. 1–8; Issa, Byers and Dakshanamurthy (2014), pp. 293–298; Hemerly (2013), pp. 25–31.

  11. 11.

    See, e.g., Kalra et al. (2017), pp. 1–8; Issa, Byers and Dakshanamurthy (2014), pp. 293–298; Hemerly (2013), pp. 25–31.

  12. 12.

    Yu (2016), pp. 611–635.

  13. 13.

    World Health Organization (2020a).

  14. 14.

    Houe (2019), pp. 1–8.

  15. 15.

    Yu (2016), pp. 611–635.

  16. 16.

    Yu (2016), pp. 611–635.

  17. 17.

    Kaye and Hawkins (2014), pp. 1–8.

  18. 18.

    Dias and Duarte (2015), pp. 230–236.

  19. 19.

    See, e.g., Den Broeder et al. (2018), pp. 505–514; Ciasullo et al. (2022), pp. 365–392; Heyen et al. (2022), pp. 1–24.

  20. 20.

    Dunn et al. (2018), pp. 429–448.

  21. 21.

    Piwek et al. (2016), pp. 1–9.

  22. 22.

    See, e.g., Saura et al. (2021), pp. 1–13; Pisani and AbouZahr (2010), pp. 462–466; Van Panhuis et al. (2014), pp. 1–9.

  23. 23.

    Hemerly (2013), pp. 25–31.

  24. 24.

    Hemingway et al. (2018), pp. 1481–1495.

  25. 25.

    See, e.g., Seh et al. (2020), p. 133.

  26. 26.

    NEJM Catalyst (2018).

  27. 27.

    Hemerly (2013), pp. 25–31.

  28. 28.

    European Commission (2018).

  29. 29.

    See, e.g., Appari and Johnson (2010), pp. 279–314; Malin et al. (2013), pp. 2–6; Haas et al. (2011), pp. 26–31; Kruse et al. (2017), pp.1–9; Chhanabhai and Holt (2007), p. 8; Barrows and Clayton (1996), pp. 139–148; OECD (2021).

  30. 30.

    See, e.g., European Commission (2020); European Commission (2017); Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation); Directive (EU) 2019/790 of the European Parliament and of the Council of 17 April 2019 on copyright and related rights in the Digital Single Market and amending Directives 96/9/EC and 2001/29/EC (Text with EEA relevance.) PE/51/2019/REV/1; Proposal for a Regulation of the European Parliament and of the Council on harmonised rules on fair access to and use of data (Data Act) CON/2022/68 final.

  31. 31.

    European Commission (2022a).

  32. 32.

    European Commission (2022b).

  33. 33.

    Johnston (2006), pp. 1–32; Hickey and King (2016), pp. 1225–1240.

  34. 34.

    Joshi (2017), pp. 160–172; Boydell et al. (2019), pp. 1–6.

  35. 35.

    Stockdale et al. (2018), pp. 1–25; Howe et al. (2018), pp. 123–133.

  36. 36.

    Halperin (2011), pp. 45–76.

  37. 37.

    Visschers and Siegrist (2008), pp. 156–167.

  38. 38.

    Strasser et al. (2019), pp. 52–76.

  39. 39.

    RRI Tools, https://www.rri-tools.eu/about-rri. Accessed 4 September 2022.

  40. 40.

    Macq et al. (2020), pp. 489–512.

  41. 41.

    Zwart et al. (2014), p. 11.

  42. 42.

    Von Schomberg and Blok (2021), pp. 309–323.

  43. 43.

    See, e.g., Blok and Lemmens (2015), pp. 19–35; Åm (2019), pp. 163–178; Owen and Pansera (2019), pp. 26–48.

  44. 44.

    Smallman (2018), pp. 241–253.

  45. 45.

    Stilgoe et al. (2013), pp. 1568–1580.

  46. 46.

    Novitzky et al. (2020), pp. 39–41.

  47. 47.

    Brown and Wyatt (2010), pp. 29–43; Roberts et al. (2016), pp. 11–14.

  48. 48.

    Park and Kim (2014), pp. 376–385; Jelsma (2006).

  49. 49.

    Miller and Sim (2004), pp. 116–126.

  50. 50.

    Jakku et al. (2019), pp. 1–13; Holden and Karsh (2009), pp. 21–38.

  51. 51.

    Dryzek et al. (2019), pp. 1144–1146.

  52. 52.

    OECD (2020).

  53. 53.

    Bächtiger et al. (2018).

  54. 54.

    Ercan et al. (2019), pp. 19–36.

  55. 55.

    Von Schomberg (2013), pp. 51–74.

  56. 56.

    Irwin (2006), pp. 299–320.

  57. 57.

    World Health Organization (2020a, b).

  58. 58.

    Shay and Lafata (2015), pp. 114–131; Elwyn et al. (2015), pp. 1–10.

  59. 59.

    Hahn et al. (2017), pp. 290–295.

  60. 60.

    Frahm et al. (2022), pp. 174–216; Domecq et al. (2014), pp. 1–9.

  61. 61.

    Irwin (2001), pp. 1–18; van Oudheusden (2014), pp. 67–86; Owen et al. (2021), pp. 217–233.

  62. 62.

    Yu (2016), pp. 611–635; Lehoux et al. (2008), pp. 251–254.

  63. 63.

    Ribeiro et al. (2018), pp. 316–331.

  64. 64.

    Griggs et al. (2014).

  65. 65.

    Yu (2016), pp. 611–635; Lehoux et al. (2008), pp. 251–254.

  66. 66.

    Bajmócy and Pataki (2019).

  67. 67.

    Hartley et al. (2017), pp. 361–377.

  68. 68.

    Hartley et al. (2017), pp. 361–377.

  69. 69.

    Van Panhuis et al. (2014), pp. 1–9.

  70. 70.

    Andanda (2013), pp. 140–177.

  71. 71.

    Günther et al. (2017), pp. 191–209.

  72. 72.

    Hulsen (2020), p. 3046.

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Acknowledgements

This research was supported by a Novo Nordisk Foundation grant for a scientifically independent Collaborative Research Program in Biomedical Innovation Law (grant agreement number NNF17SA0027784) and by a grant from the Center for Digital Life Norway and the Research Council of Norway (grant agreement number 294594).

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  1. Value-Based Health and Care Academy, Swansea University, Swansea, Wales

    Helen Yu

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  1. Helen Yu
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  1. CeBIL, University of Copenhagen, København S, Denmark

    Marcelo Corrales Compagnucci

  2. CeBIL, University of Copenhagen, Copenhagen K, Denmark

    Timo Minssen

  3. Kyushu University, Fukuoka, Japan

    Mark Fenwick

  4. University of Cambridge, Cambridge, UK

    Mateo Aboy

  5. University of Cambridge, Cambridge, UK

    Kathleen Liddell

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Yu, H. (2024). Operationalizing the Use of Existing Data in Support of Biomedical Research and Innovation: An Inclusive and Sustainable Approach. In: Corrales Compagnucci, M., Minssen, T., Fenwick, M., Aboy, M., Liddell, K. (eds) The Law and Ethics of Data Sharing in Health Sciences. Perspectives in Law, Business and Innovation. Springer, Singapore. https://doi.org/10.1007/978-981-99-6540-3_5

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  • DOI: https://doi.org/10.1007/978-981-99-6540-3_5

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