Committee will oversee ethicality in med studies
NEWDELHI:THE Delhi government has constituted a 10-member committee to oversee the ethicality of practices being followed in research projects, involving all the 21 categories of disabilities, carried out by the state hospitals and various colleges. The committee is a statutory body created under Rule 4 of Rights of Persons with Disability Act.
Delhi is the first state in India to have created such a committee.
“Research projects are evaluated as per the Indian Council of Medical Research guidelines by the institute ethics committees. But these guidelines do not have legal backing. Neither do they specifically look at protecting those living with disabilities. This body will be over and above the institutional ethics committee and evaluate research projects to ensure that the rights of people with disability are protected. For example, if the consent of a blind person is being sought, the document either has to be in Braille or electronically recorded,” said Dr Satendra Singh, a physiologist, a disability activist and a member of the newly formed committee.
The dean of Maulana Azad Medical College will be the ex-officio chairman of the committee, while other members will include ex-officio the Directorgeneral
of Health Services and the deputy director of the disability branch of Delhi’s department of social welfare. Five members from various non-government organisations will also be part of the committee. The nominated members will have a term of three years and can be renominated for another term.
Dr MG Jahanara, head of the department of psychiatric social work at the Institute of Human Behaviour and Allied Sciences (IHBAS) said, “We need to ensure that persons with disabilities can decide for themselves, independent of their families or doctors, as to whether they want to participate in a study or not. We also need to ensure that all research is done upholding the dignity of the disabled person.”
The body will develop guidelines and standard operating procedures for the approval of projects and create awareness about the necessary permissions needed.