{"title":"On conducting a study among institutionalised adolescents in Kerala, India: legal and ethical challenges.","authors":"T S Sumitha, Ravi Prasad Varma","doi":"10.20529/IJME.2022.087","DOIUrl":null,"url":null,"abstract":"<p><p>We report the dilemmas faced by the investigators while conducting a study on the social and environmental factors for protection of the mental health of adolescents placed under State protection in Kerala, India. The proposal received counsel and directives from the Integrated Child Protection Scheme authorities, under the Social Justice Department of Kerala state and the Institutional Ethics Committee of the host institution. The investigator faced and had to reconcile conflicting directives and antithetical field realities, with respect to seeking informed consent from the study participants. The physical act of adolescents signing the consent form, rather than the actual process of assent, received disproportionately more scrutiny. The authorities also questioned the privacy and confidentiality requirements raised by the researchers. Of the 248 eligible adolescents, 26 chose to dissent from participating in the study, demonstrating that choices would be made if they are offered. There is a need for more discourse on achieving steadfast adherence to the principles of informed consent, particularly in research on vulnerable groups such as institutionalised children.</p>","PeriodicalId":35523,"journal":{"name":"Indian journal of medical ethics","volume":"VIII 3","pages":"216-220"},"PeriodicalIF":0.0000,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Indian journal of medical ethics","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.20529/IJME.2022.087","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/11/23 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"Medicine","Score":null,"Total":0}
引用次数: 0
Abstract
We report the dilemmas faced by the investigators while conducting a study on the social and environmental factors for protection of the mental health of adolescents placed under State protection in Kerala, India. The proposal received counsel and directives from the Integrated Child Protection Scheme authorities, under the Social Justice Department of Kerala state and the Institutional Ethics Committee of the host institution. The investigator faced and had to reconcile conflicting directives and antithetical field realities, with respect to seeking informed consent from the study participants. The physical act of adolescents signing the consent form, rather than the actual process of assent, received disproportionately more scrutiny. The authorities also questioned the privacy and confidentiality requirements raised by the researchers. Of the 248 eligible adolescents, 26 chose to dissent from participating in the study, demonstrating that choices would be made if they are offered. There is a need for more discourse on achieving steadfast adherence to the principles of informed consent, particularly in research on vulnerable groups such as institutionalised children.
期刊介绍:
The Indian Journal of Medical Ethics (formerly Issues in Medical Ethics) is a platform for discussion on health care ethics with special reference to the problems of developing countries like India. It hopes to involve all cadres of, and beneficiaries from, this system, and strengthen the hands of those with ethical values and concern for the under-privileged. The journal is owned and published by the Forum for Medical Ethics Society, a not-for-profit, voluntary organisation. The FMES was born out of an effort by a group of concerned doctors to focus attention on the need for ethical norms and practices in health care.