Ethical standards are critical in projects like MyGenom because they ensure the responsibility and fair use of genomic data that is highly sensitive and personal are met. Ethical standards refer to principles and guidelines that govern the behaviour to ensure respect for individuals’ rights, privacy, and autonomy, along with the equitable treatment of all participants. In MyGenom, maintaining high ethical standards is crucial to build trust, protect participants’ privacy, and ensure that genetic information is handled transparently and securely. By adhering to these standards, MyGenom can help prevent misuse of data, promote public trust, and foster a culture of responsibility and integrity in genetic research.
Firstly, this project will ensure the ethical standards are met by following the ethical principles outlined in the Declaration of Helsinki and Malaysian Good Clinical Practice, strictly following the confidentiality legislation and requirements in the handling of personal information.
Secondly, the participant’s consent would be obtained prior to participation. There will be a total of two informed written consents to be used for enrolment; one for the current study and another for biobanking.
Thirdly, the project has been registered with the National Medical Research Register (NMRR) and has received approval from the Medical Research and Ethics Committee (MREC). The MREC is responsible for evaluating and approving the project’s ethical aspects and ensuring compliance with relevant regulations throughout its implementation.
If unexpected findings occur during the analysis of genomics data, medical doctors will assess if further tests or steps are needed for confirmation and decide on the approach to share results with participants.