Biotechnology offers new hope for people with disabilities - Ras Adiba

Ras Adiba, who is OKU Sentral president, said biotechnology in healthcare and wellness - one of the three thrusts of the policy - was an important segment for PWDs.

"From next-generation prenatal tests, to virtual children, to the genome-editing tool, new biotechnologies grant us unprecedented power to predict and shape future people. I hope new application of biotechnology is accompanied by persuasive steps that minimise downsides and promise enormous benefits," she said in a statement.

Ras Adiba said national guidelines that align with international needs are urgently needed and that the voices of people living with illness and impairment need to be heard.

She urged the Ministry of Science, Technology and Innovation (MOSTI), together with other relevant ministries, to:

o Establish genome sequencing and a genome bank in order to support Genomic Medical Services (GMS) especially for the rare disease community.

o Explore the legal and policy context surrounding germline genome editing.

o Look into the opportunities of germline genome editing with regard to rare disease while advocating for the need to more actively engage with the community in the search for public engagement.

o Facilitate collection and dissemination of disability-related data via blockchain technology.

o Create publicly funding genome-wide sequencing (including whole exome and whole genome sequencing) programmes for PWDs, people with unexplained developmental disabilities or multiple congenital anomalies as part of the MyGenome programme by the Malaysia Genome and Vaccine Institute.

Ras Adiba said about seven million of the 130 million babies born worldwide each year have serious inherited genetic disorders and that some 80 per cent of these disorders are caused by a single gene mutation and "effective therapies for these diseases are themselves comparatively rare".

"Disability inclusion is critical to achieving better health and well-being because persons with disabilities are four to 10 times more likely to experience challenges in daily life," she said.

The two other thrusts of the National Biotechnology Policy 2.0, launched by Prime Minister Datuk Seri Ismail Sabri Yaakob, are agricultural biotechnology and food security, and biotechnology in industrialisation and the circular economy.