Safeguard Confidentiality In Research

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40 % have mentioned difficulties in understanding the nature of study while 40 % found difficulties in understanding the Research objective. 30% of parents / guardians lack knowledge about autism and even if they are aware of a diagnosis, they have very marginal knowledge about autism. 100 % of parents / guardians have expressed the necessity for an adequate risk- benefit ratio which the research work must ensure. Though the consent form mentions about the research being observation based study, yet only 40% of the parents / guardians mentioned that it is an advantage. They are apprehensive of any negative impact of the research process on the child as a result of participation, thus believing in presumed harm. 60 % were apprehensive of signing…show more content…
The risk should not be more than routine medical or psychological examination of the child. Parents / guardians seek direct benefit and inconvenience to the autistic child may deter their participation. 4.6 Safeguarding confidentiality The investigator must establish secure safeguards of the confidentiality of subjects’ research data. Subjects should be told the limits, legal or other, to the investigators’ ability to safeguard confidentiality and the possible consequences of breaches of confidentiality (CIOMS, 1992). The confidentiality norms from the Indian perspective needs to be analyzed while safeguarding confidentiality of the autistic child. The multifaceted network of social stigma, apprehensions and denials need to be dealt with very sensitively by the researcher. The challenges that are faced while safeguarding confidentiality are: • Revealing identity like school/ village/ neighbourhood at the time of publication • Data archiving (where participant details are noted)…show more content…
A comprehensive effort by the special education centers and researchers would enable minimizing risks and maximizing benefits for autistic children. Some recommendations are: • Establishing parent counseling centers in schools / special education centers • The research sessions should not, in any manner risk the physical, social and/or psychological well being of the participants • Session duration and regularity should be individualized on a case-to-case basis • Understanding the individual needs of the child • Sessions should be held at comfortable environment which the child is well acquainted to (preferable at home or school / special education centre which the child
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