Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
KAP of Principal Investigators Perception On Genetic Data Reuse for Future Research
ABSTRACT
Background:
It is the responsibility of the principal investigator to safeguard study participants' privacy and prevent the disclosure of any research findings, among other things. The investigator should aware the before involved in any clinical trial or genetic research activities. Obtaining consent, sample collection, storage, post-research access, and benefits of sharing and coding belong to general ethical considerations in genetic research or clinical trials.
Objective:
To Assess the KAP of the principal investigator perception on Genetic data re-use for future research
Methods:
Meeting of the Institutional Review Board on Human Subjects for Research Projects for the KLE Academy of Higher Education and Research was held on June 7 and 8, 2021 and approved the study proposal with Ref: KAHER/EC/ 21-22-022 dated: 29-Jul-2021
Results:
The current study primarily focused on the Knowledge, attitude and practices of the principal investigators (n=50) with regarding genetics and the reuse of its data in future research. The exchange or return of participant-specific genetic research data in an encrypted form. Encryption refers to the process of converting data into a code to prevent unauthorized access. The responses show that 15 participants (30%) strongly agree, 35 (70%) agree, and none disagree or strongly disagree.
Conclusions:
There are ICMR data standards guidelines are available but the ethics in research is related globe and need of uniform guidelines to get train the investigators or those who are going to involve in any research. Genetic data re-uses are integral part of clinical trials. As the study revealed that while many principal investigators were unaware of the potential benefits of the sharing information and concerns around the confidentiality and ethical/legal issues remained prevalent. There is a lack of Knowledge and understanding of genetic consent, reuse of genetic data, and ethical issues surrounding genetic research. But there is an uncertainty around the forms of consent required for re-use in the research. There is a commercialization of collected genetic data to third parties i.e. biobanks. Particularly in genomic research analysis or data uses bioethics is involved and evolved recently Clinical Trial: CTRI/2021/11/038211 [Registered on: 23/11/2021] - Trial Registered Prospectively
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.