Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study
Abstract Background The South African legal framework requires mandatory parental/legal guardian consent for all research with children. Ethics guidelines provide some reprieve by allowing RECs to grant waivers of parental or guardianship consent in certain defined circumstances. In the first instan...
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| Format: | Article |
| Language: | English |
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BMC
2022-09-01
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| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12910-022-00833-5 |
| _version_ | 1811208839798718464 |
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| author | Ann Strode Zaynab Essack |
| author_facet | Ann Strode Zaynab Essack |
| author_sort | Ann Strode |
| collection | DOAJ |
| description | Abstract Background The South African legal framework requires mandatory parental/legal guardian consent for all research with children. Ethics guidelines provide some reprieve by allowing RECs to grant waivers of parental or guardianship consent in certain defined circumstances. In the first instance, consent may be provided by a proxy when parents or guardians are unavailable, for example with orphaned children. In the second instance, guidelines permit adolescent self-consent when the nature of the study justifies this approach, for example, research on sensitive issues like sexual behaviour or substance use. Discussion South African guidelines set several conditions that must be met for waivers to be granted. These norms overlap with those in international guidelines. However, the ethical norms, especially related to self-consent are sometimes vague. This article critically evaluates the consent norms in the national ethics guidelines and makes recommendations for reform to ethics guidelines in a way that recognises the value of child participation in research, their evolving decision-making capacity and their best interests. Conclusion Recommendations are made to harmonise ethics guidelines and law in a way that promotes child participation in research, to ensure additional protections for adolescents when self-consent is allowed, and to withdraw procedural requirements for the community endorsement of self-consent strategies. |
| first_indexed | 2024-04-12T04:28:29Z |
| format | Article |
| id | doaj.art-004c94ea086d4a6a947f52571ee55171 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-04-12T04:28:29Z |
| publishDate | 2022-09-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-004c94ea086d4a6a947f52571ee551712022-12-22T03:47:59ZengBMCBMC Medical Ethics1472-69392022-09-012311610.1186/s12910-022-00833-5Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case studyAnn Strode0Zaynab Essack1School of Law, University of KwaZulu-NatalSchool of Law, University of KwaZulu-NatalAbstract Background The South African legal framework requires mandatory parental/legal guardian consent for all research with children. Ethics guidelines provide some reprieve by allowing RECs to grant waivers of parental or guardianship consent in certain defined circumstances. In the first instance, consent may be provided by a proxy when parents or guardians are unavailable, for example with orphaned children. In the second instance, guidelines permit adolescent self-consent when the nature of the study justifies this approach, for example, research on sensitive issues like sexual behaviour or substance use. Discussion South African guidelines set several conditions that must be met for waivers to be granted. These norms overlap with those in international guidelines. However, the ethical norms, especially related to self-consent are sometimes vague. This article critically evaluates the consent norms in the national ethics guidelines and makes recommendations for reform to ethics guidelines in a way that recognises the value of child participation in research, their evolving decision-making capacity and their best interests. Conclusion Recommendations are made to harmonise ethics guidelines and law in a way that promotes child participation in research, to ensure additional protections for adolescents when self-consent is allowed, and to withdraw procedural requirements for the community endorsement of self-consent strategies.https://doi.org/10.1186/s12910-022-00833-5Parental consentWaiversAdolescent researchCIOMSSouth AfricaEthics guidelines |
| spellingShingle | Ann Strode Zaynab Essack Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study BMC Medical Ethics Parental consent Waivers Adolescent research CIOMS South Africa Ethics guidelines |
| title | Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study |
| title_full | Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study |
| title_fullStr | Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study |
| title_full_unstemmed | Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study |
| title_short | Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study |
| title_sort | parental waivers to enable adolescent participation in certain forms of health research lessons from a south african case study |
| topic | Parental consent Waivers Adolescent research CIOMS South Africa Ethics guidelines |
| url | https://doi.org/10.1186/s12910-022-00833-5 |
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