Coming Out to Play: Privacy, Data Protection, Children's Health, and COVID-19 Research.
| Title: | Coming Out to Play: Privacy, Data Protection, Children's Health, and COVID-19 Research. |
|---|---|
| Authors: | Beauvais MJS; Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada.; Knoppers BM; Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada.; Canada Research Chair in Law and Medicine, Montreal, QC, Canada. |
| Source: | Frontiers in genetics [Front Genet] 2021 Apr 14; Vol. 12, pp. 659027. Date of Electronic Publication: 2021 Apr 14 (Print Publication: 2021). |
| Publication Type: | Journal Article |
| Language: | English |
| Journal Info: | Publisher: Frontiers Research Foundation Country of Publication: Switzerland NLM ID: 101560621 Publication Model: eCollection Cited Medium: Print ISSN: 1664-8021 (Print) Linking ISSN: 16648021 NLM ISO Abbreviation: Front Genet Subsets: PubMed not MEDLINE |
| Imprint Name(s): | Original Publication: Lausanne : Frontiers Research Foundation. |
| Abstract: | The COVID-19 pandemic has underscored the need for new ways of thinking about data protection. This is especially so in the case of health research with children. The responsible use of children's data plays a key role in promoting children's well-being and securing their right to health and to privacy. In this article, we contend that a contextual approach that appropriately balances children's legal and moral rights and interests is needed when thinking about data protection issues with children. We examine three issues in health research through a child-focused lens: consent to data processing, data retention, and data protection impact assessments. We show that these issues present distinctive concerns for children and that the General Data Protection Regulation provides few bright-line rules. We contend that there is an opportunity for creative approaches to children's data protection when child-specific principles, such as the best interests of the child and the child's right to be heard, are put into dialogue with the structure and logic of data protection law.; (Copyright © 2021 Beauvais and Knoppers.) |
| Competing Interests: | The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. |
| References: | J Med Internet Res. 2020 Aug 27;22(8):e19799. (PMID: 32784191); J Med Ethics. 2020 Aug;46(8):508-509. (PMID: 32503924); BMJ. 2020 Sep 17;370:m3614. (PMID: 32943385); Cell. 2020 Nov 12;183(4):968-981.e7. (PMID: 32966765); Arch Dis Child. 2020 Jul;105(7):618-619. (PMID: 32371442); Acta Paediatr. 2020 Nov;109(11):2187-2188. (PMID: 32799388); Hosp Pediatr. 2020 Jun;10(6):537-540. (PMID: 32265235); Front Genet. 2019 Apr 05;10:289. (PMID: 31024616); Clin Infect Dis. 2021 Jul 15;73(2):336-340. (PMID: 32945335); Med Law Rev. 2018 Aug 1;26(3):369-391. (PMID: 29140477); Med J Aust. 2020 Nov;213(10):444-446.e1. (PMID: 33099775); JAMA. 2013 Nov 27;310(20):2191-4. (PMID: 24141714); Arch Dis Child. 2019 Apr;104(4):389-394. (PMID: 30266876); J Law Biosci. 2020 May 08;7(1):lsaa020. (PMID: 32728465); Can J Public Health. 2002 Mar-Apr;93(2):101-3. (PMID: 11968179); Ann Intern Med. 2021 Mar;174(3):415-416. (PMID: 33315470); J Paediatr Child Health. 2020 Jun;56(6):981-983. (PMID: 32567783); Lancet. 2020 Jun 6;395(10239):1771-1778. (PMID: 32410760); Lancet Infect Dis. 2020 Nov;20(11):e276-e288. (PMID: 32818434); JAMA Pediatr. 2018 May 1;172(5):476-481. (PMID: 29554172); EMBO Mol Med. 2020 Jun 8;12(6):e12634. (PMID: 32375201); Science. 2020 Oct 2;370(6512):40-42. (PMID: 33004505); Annu Rev Popul Law. 1988;15:149. (PMID: 12289232) |
| Contributed Indexing: | Keywords: children; data protection; health research; pediatrics; privacy; research ethics |
| Entry Date(s): | Date Created: 20210503 Latest Revision: 20231111 |
| Update Code: | 20260130 |
| PubMed Central ID: | PMC8080022 |
| DOI: | 10.3389/fgene.2021.659027 |
| PMID: | 33936177 |
| Database: | MEDLINE |
Journal Article