Demand raised for Central Committee for Research on Disability as mandated under RPWD Act

Well over three years after the Rights of Persons with Disabilities Act came into force, key provisions remain on paper. This is true not just for States but even the Centre. Now, Doctors with Disabilities has demanded that the Centre’s nodal body set up a committee before 14 December 2019.

One of the key provisions of the Rights of Persons with Disabilities (RPWD) Act 2016 is Section 6(2) which states that no person with disability can be the subject of any medical research without his/her free, informed consent obtained through accessible means of communication. It also mandates that all states/union territories set up a committee for research on disability, half the members of which will be disabled people or from an organisation as specified in the Act.

Over three years after the Act came into effect, this key provision is yet to see the light in any other states barring Delhi. Worse, even the Department of Empowerment of People with Disabilities (DEPwD) mandated to protect the rights of India’s disabled community has failed to set up a Central Committee for Research on Disability (CCRD).

Ahead of World Disability Day on 3 December, Doctors with Disabilities, a group which is fighting against discrimination against people with disabilities in the field of medicine, has written to the DEPwD asking that a central committee be set up immediately.

The nodal body mandated under law to protect rights of persons with disabilities has not yet constituted Central Committee for Research on Disability (CCRD). Considering that Indian Council of Medical Research guidelines are not detailed on research among protected participants, it is necessary to maintain high ethical research standards and competencies. – Dr Satendra Singh, Founder, Doctors with Disabilities

The letter to the DEPwD comes soon after the 21 November notification of the Delhi government announcing the setting up of such a committee. This is made up of a member of the Doctors with Disabilities group as well as NGOs working for the welfare of disabled people. Prior permission of this committee will have to be taken before carrying out any research involving a disabled person. “As this is a statutory body constituted under RPWD Act 2016, it shall be over and above Institutional Ethics Committees”, said Dr Singh.

This will cover research on people with locomotor disabilities, vision and hearing disabilities, Down syndrome, autism, thalassemia, among others.

The letter has demanded that the DEPwD set up a central committee by 14 December 2019. It has also asked that a separate government order be issued to states and union territories by 15 December in this regard.