SC Order: A Portal for Individuals with Autism to Avoid Illegal Use of Stem Cell Therapy

The Supreme Court of India has directed the Central government to create a portal for patients with autism spectrum disorder (ASD) who may require stem cell therapy. The centre has to set clear guidelines explaining the rules regarding clinical trials and research. This move follows an order by the top court in January discouraging the use of stem cell therapy as a routine service to prevent it from being illegally used and administered. The SC has said it can only be done under a monitored and approved clinical trial or research setting, but not as a routine protocol for patients with ASD. 

The order came after the centre had informed the court that a multi-centre randomised controlled trial (RCT) was to be set up in north and south India, funded by the Indian Council for Medical Research (ICMR). It was while reviewing this that the court found a lack of eligibility criteria for ASD patients opting for such therapy. It also found no valid platform for patients and caregivers to register their information. The court has also made it compulsory for patients with ASD, their parents, guardians, caregivers and medical staff and clinics to maintain a thorough database. 

A Database To Prevent Misuse

The database has to be completely detailed about several factors, including medical records of the patients, details of the medical practitioners, details of the manner of the intervention used and other clinical specifications on the portal. The court has also asked that all procedures be followed to ensure the confidentiality and security of the patients’ medical information. The Ministry of Health was also directed to put this information in an easy and clear manner on their website.

The Dangers of Malpractice

The court noted that several clinics and practitioners were conducting such treatment outside a legal framework and with no legitimate guidelines or setting. This puts both patients and their families at financial and other health risks given that there is a lack of awareness about the same. The court order also stated that many clinics are rising all over the country promising a miraculous cure for ASD but operating outside of the legal framework. 

Autism Spectrum Disorder (ASD)

Autism or Autism Spectrum Disorder refers to lifelong neurodevelopmental conditions that arise from a combination of genetic or environmental factors. It occurs within the first three years of life and is the third most common disorder. Autism usually shows up with differences in the development of verbal or non-verbal communication, social interactions and imagination. It is known as a spectrum disorder because the severity of symptoms can differ from mild hearing and social disability to multiple difficulties and unusual behaviour. A person with autism will not develop according to their age, so skill development differs as compared to a non-autistic individual.

Common Conditions under Autism Spectrum Disorder

Autism varies in effect according to different individuals and can either occur alone or with another disorder. Conditions that commonly happen along with autism include

• Attention Deficit Hyperactivity Disorder
• Intellectual Disability
• Anxiety Disorders
• Depression
• Sleeping Disorders
• Seizures and Epilepsy
• Learning Disorder
• Cerebral Palsy
• Fragile X Syndrome
• Hearing Impairment
• Visual Impairment

Conclusion

The Supreme Court has made an empathetic decision that takes into account many individuals who do not have awareness and may opt for something as expensive and risky as stem cell therapy. Illegal institutions prioritise gains over health and life, and such a move ensures that accountability and awareness exist about the same.