دورية أكاديمية
Towards trust-based governance of health data research.
العنوان: | Towards trust-based governance of health data research. |
---|---|
المؤلفون: | Bak MAR; Department of Ethics, Law and Humanities, Amsterdam UMC (Location AMC), University of Amsterdam, Meibergdreef 15, 1105 AZ, Amsterdam, The Netherlands. marieke.bak@amsterdamumc.nl., Ploem MC; Department of Ethics, Law and Humanities, Amsterdam UMC (Location AMC), University of Amsterdam, Meibergdreef 15, 1105 AZ, Amsterdam, The Netherlands., Tan HL; Department of Cardiology, Amsterdam UMC (Location AMC), University of Amsterdam, Amsterdam, The Netherlands.; Netherlands Heart Institute, Utrecht, The Netherlands., Blom MT; Department of Cardiology, Amsterdam UMC (Location AMC), University of Amsterdam, Amsterdam, The Netherlands., Willems DL; Department of Ethics, Law and Humanities, Amsterdam UMC (Location AMC), University of Amsterdam, Meibergdreef 15, 1105 AZ, Amsterdam, The Netherlands. |
المصدر: | Medicine, health care, and philosophy [Med Health Care Philos] 2023 Jun; Vol. 26 (2), pp. 185-200. Date of Electronic Publication: 2023 Jan 12. |
نوع المنشور: | Journal Article |
اللغة: | English |
بيانات الدورية: | Publisher: Kluwer Academic Publishers Country of Publication: Netherlands NLM ID: 9815900 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1572-8633 (Electronic) Linking ISSN: 13867423 NLM ISO Abbreviation: Med Health Care Philos Subsets: MEDLINE |
أسماء مطبوعة: | Original Publication: Dordrecht ; Boston : Kluwer Academic Publishers, c1998- |
مواضيع طبية MeSH: | Trust*, Humans ; Europe ; Privacy |
مستخلص: | Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research-among researchers and with data subjects-is grounded in trust, which should be more explicitly recognised in the governance of health data research. (© 2023. The Author(s).) |
References: | Eur J Hum Genet. 2020 Apr;28(4):403-416. (PMID: 31527854) BMC Med Ethics. 2020 Nov 3;21(1):110. (PMID: 33143692) Acad Med. 2009 Apr;84(4):472-7. (PMID: 19318781) Circ Cardiovasc Genet. 2017 Jan;10(1):. (PMID: 28119333) Med Health Care Philos. 2018 Jun;21(2):169-179. (PMID: 28875227) J Contemp Health Law Policy. 1987 Spring;3:23-46. (PMID: 11645600) Theor Med Bioeth. 2016 Dec;37(6):441-446. (PMID: 27921208) Eur J Cancer. 2018 Nov;104:70-80. (PMID: 30336359) Bioethics. 2019 May;33(4):502-510. (PMID: 30657596) Eur J Health Law. 2006 Apr;13(1):41-63. (PMID: 16838749) Med Health Care Philos. 2019 Mar;22(1):41-52. (PMID: 29740744) Philos Trans A Math Phys Eng Sci. 2016 Dec 28;374(2083):. (PMID: 28336803) Am J Bioeth. 2018 Apr;18(4):3-20. (PMID: 29621457) Eur J Hum Genet. 2014 Mar;22(3):317-21. (PMID: 23778872) Eur J Hum Genet. 2020 Jun;28(6):697-705. (PMID: 32123329) Med Health Care Philos. 2015 Feb;18(1):81-90. (PMID: 25023945) J Bioeth Inq. 2020 Dec;17(4):809-814. (PMID: 32840859) BMJ. 2014 Apr 22;348:g2831. (PMID: 24755982) Proc Natl Acad Sci U S A. 2020 Apr 7;117(14):7672-7683. (PMID: 32205438) Found Sci. 2017;22(2):411-419. (PMID: 28603445) Ann Epidemiol. 2006 Apr;16(4):281-4. (PMID: 15949954) Med Health Care Philos. 2016 Jun;19(2):177-90. (PMID: 26280642) BMC Med Ethics. 2021 Apr 30;22(1):51. (PMID: 33931049) J Med Ethics. 2018 Jun;44(6):392-396. (PMID: 29358219) Sci Eng Ethics. 1995 Oct;1(4):403-16. (PMID: 11657785) Hastings Cent Rep. 1996 Sep-Oct;26(5):25-9. (PMID: 8891706) Eur J Hum Genet. 2016 Jul;24(7):956-60. (PMID: 26554881) Science. 2016 Mar 25;351(6280):1399-400. (PMID: 27013718) J Law Med Ethics. 2015 Winter;43(4):690-702. (PMID: 26711410) Risk Anal. 2003 Oct;23(5):961-72. (PMID: 12969411) J Med Ethics. 2020 May 18;:. (PMID: 32424061) Am J Bioeth. 2009;9(6-7):59-65. (PMID: 19998120) Camb Q Healthc Ethics. 2011 Oct;20(4):546-53. (PMID: 21843385) J Med Ethics. 2023 Oct;49(10):670-673. (PMID: 35999038) Found Sci. 2017;22(2):425-428. (PMID: 28603447) Nat Med. 2019 Jan;25(1):37-43. (PMID: 30617331) Eur J Cancer. 2015 Jun;51(9):1028-38. (PMID: 24120502) Clin Nurs Res. 2019 Jan;28(1):30-51. (PMID: 28745067) Theor Med Bioeth. 2016 Dec;37(6):489-501. (PMID: 27933474) Crit Care. 2018 Sep 13;22(1):212. (PMID: 30208954) Nat Cell Biol. 2018 Jun;20(6):642-645. (PMID: 29784910) BMC Med Ethics. 2014 Aug 13;15:62. (PMID: 25124199) Health Inf Sci Syst. 2014 Feb 07;2:3. (PMID: 25825667) Eur J Hum Genet. 2010 Feb;18(2):251-3. (PMID: 19672285) Eur J Public Health. 2018 Nov 1;28(suppl_3):19-25. (PMID: 30383254) J Med Ethics. 2017 Nov;43(11):741-743. (PMID: 28483804) J Med Ethics. 2015 May;41(5):404-9. (PMID: 25617016) Bioethics. 2019 May;33(4):495-501. (PMID: 30480821) BMC Med Ethics. 2019 Jun 3;20(1):39. (PMID: 31159853) Arch Public Health. 2020 Jun 10;78:55. (PMID: 32537143) Cancer. 2008 Jan 15;112(2):228-42. (PMID: 18008363) J Law Biosci. 2014 Jun 1;1(2):137-182. (PMID: 25937932) Biopreserv Biobank. 2016 Jun;14(3):224-30. (PMID: 27219861) Soc Sci Med. 2007 Jan;64(1):223-35. (PMID: 17045717) Sci Eng Ethics. 2016 Apr;22(2):303-41. (PMID: 26002496) J Bioeth Inq. 2017 Dec;14(4):501-513. (PMID: 28983835) Neth Heart J. 2021 Apr;29(4):179-185. (PMID: 33052579) Sci Context. 2014 Jun;27(2):187-213. (PMID: 24941789) PLoS One. 2018 Apr 5;13(4):e0195171. (PMID: 29621313) Resuscitation. 2018 Mar;124:7-13. (PMID: 29246744) Hum Genet. 2011 Sep;130(3):377-82. (PMID: 21785980) J Med Ethics. 2013 Apr;39(4):214-8. (PMID: 23222145) Life Sci Soc Policy. 2020 Aug 25;16(1):8. (PMID: 32839878) BMJ. 2000 Oct 28;321(7268):1031-2. (PMID: 11053151) BMC Med Ethics. 2021 Jan 28;22(1):7. (PMID: 33509184) Int J Med Inform. 2017 Jan;97:43-51. (PMID: 27919394) Theor Med Bioeth. 2016 Dec;37(6):473-487. (PMID: 27915459) Clin Epidemiol. 2015 Nov 23;7:491-508. (PMID: 26648756) Open Public Health J. 2008 Jan 1;1:8-16. (PMID: 20072707) |
معلومات مُعتمدة: | 733381 horizon 2020 framework programme |
فهرسة مساهمة: | Keywords: Big data; Data sharing; ESCAPE-NET; GDPR; Governance; Privacy; Research ethics; Solidarity; Trust |
تواريخ الأحداث: | Date Created: 20230112 Date Completed: 20230516 Latest Revision: 20231101 |
رمز التحديث: | 20231101 |
مُعرف محوري في PubMed: | PMC9835739 |
DOI: | 10.1007/s11019-022-10134-8 |
PMID: | 36633724 |
قاعدة البيانات: | MEDLINE |
كن أول من يترك تعليقا!