This PIL sought directions for establishing newborn screening programs for Inborn Errors of Metabolism in India. The Court dismissed the petition due to the petitioner's lack of subject expertise and failure to prepare the case properly.
This page shows the compact analysis of this judgement. The full analysis — procedural history, issue-by-issue holdings with ratio and obiter, advocates, and paragraph-level evidence for every claim — is being added to the record in batches and will appear here when this judgement has been through it.
17-PIL-28-2019
Pdp
IN THE HIGH COURT OF JUDICATURE AT BOMBAY ORDINARY ORIGINAL CIVIL JURISDICTION
PUBLIC INTEREST LITIGATION NO. 28 OF 2019
| Joaquim Sebastian D’Costa | ) |
|---|---|
| Aged 63 years, Occupation: Social | ) |
| Worker, residing at Pavwalla | ) |
| Building No. 6, Room No.11 | ) |
| 1stFloor, Thakurdwar, | ) |
| Mumbai – 400 002 | ) .. Petitioner |
Versus
1
17-PIL-28-2019
Mr. Manmohan Amonkar for Petitioner.
Ms. P. H. Kantharia, Govt. Pleader with Mr. Abhay Patki, Addl. Govt. Pleader for Respondent Nos.2 and 3.
CORAM: NITIN JAMDAR, ACTING CJ. & ARIF S. DOCTOR, J.
DATE: 19 JULY 2023
JUDGMENT ( Per Acting Chief Justice) :
. The Petitioner has filed this Petition seeking a direction to frame independent regulation/policy and establish programs/ schemes for mandatory screening of Inborn Errors of Metabolism (IEM) in newborns in government hospitals in the State of Maharashtra and other States in India, creating awareness about IEM, establishing a newborn screening registry for IEM and expanding the Rashtriya Bal Swasthya Karyakram to include IEM. The Petitioner seeks to bring to the notice of this Court the absence of newborn screening programs for IEM in government hospitals in India (excepting few States.
2
17-PIL-28-2019
of Inborn Errors of Metabolism – use of Current and Future Technology in Indian Scenario. Abstract from a paper published in the Indian Journal of Psychological Medicine – Communication Impairments in Children with Inborn Errors of Metabolism: A Preliminary Study. Another paper titled "Newborn Screening in India" by the National President of the Indian Academy of Pediatrics. Then there are applications filed under the Right to Information Act, 2005, which are filed by the Petitioners Advocates and not by the Petitioner. A notice issued by the Petitioner's Advocate is annexed.
3
17-PIL-28-2019
“*****
Inborn errors of metabolism (IEM) individually are rare but collectively are common. In IEMs single gene defects are responsible for the abnormalities in the synthesis or catabolism of proteins, carbohydrates or fats by way of defective enzymes or transport proteins, resulting in a block of metabolic pathway. The male to female ratio is 1:1 for X-linked dominant if transmission is from mother to child (1). Effects are due to toxic accumulations of the substrates before block, intermediates from alternative metabolic pathways, defects in energy production and use caused by a deficiency of products beyond the block or a combination of these metabolic deviations. Figure I shows the theoretical consequences of metabolic disorders. Nearly every metabolic disease has several forms that vary in age of onset, clinical severity and often mode of inheritance. Proper history from parents has a role in suspecting IEM. Parental consanguinity increases the chance of autosomal recessive IEM (2).
For evaluating an IEM the following five important aspects should follow:
4
17-PIL-28-2019
long chain fatty acids, MPS separation and speciation, quantitation of amino acids, organic acids, carbohydrate and other metabolites.
The diagnosis of metabolic disorders is challenging because of: 1. The episodic nature of metabolic illness. 2. The wide range of clinical symptoms that is also associated with more common conditions. 3. The low incidence of these disorders. 4. The consequent lack of experience among the pediatric sub-specialties and 5. The need for specialty testing (3).
Individual IEM are rare disorders, most having an incidence of less than 1 per 100,000 births. However, when considered collectively, the incidence may approach 1 in 800 to 2500 births. In one review of cases of IEM diagnosed in British Columbia (a predominantly Caucasian population) between 1969 and 1996, estimates of incidence of various classes of disorders were as follows (4):
5
17-PIL-28-2019
• Mitochondrial diseases — 3.2 per 100,000
In another review of cases of IEM diagnosed in the West Midlands of the United Kingdom (where approximately 11 percent of the population is from black and ethnic minority groups), the frequency of selected IEM during 1999 to 2003 were as follows (5):
• Amino acid disorders (excluding phenylketonuria) — 18.7 per 100,000
Age for presentation of clinical symptoms varies for individual IEM and variant forms within the IEM. The of on timing presentation depends significant accumulation of toxic metabolites or on the deficiency of substrate. The disorders of carbohydrate or protein metabolism and disorders of energy production tend to present in the neonatal period or early infancy and tend to be unrelenting and rapidly progressive. Less severe variants of these diseases usually present later in infancy or childhood and tend to be episodic. Fatty acid oxidation, glycogen storage and lysosomal storage disorders tend to present insidiously in infancy or childhood. Disorders manifested by subtle neurologic
6
17-PIL-28-2019
or psychiatric features often go undiagnosed until adulthood (6).”
7
17-PIL-28-2019
Filing PILs without proper research or domain expertise or seeking assistance from experts in the issue can lead to the erroneous or inadequate presentation of facts and arguments. Such poorly presented petitions on complex subjects are detrimental to the cause they seek to espouse.
8
17-PIL-28-2019
is one of the steps in addressing a problem of public importance. It is equally vital for the petitioner to complement this legal recourse with on-the-ground work. Ground-level work may involve conducting research, engaging with affected communities, partnering with NGOs or civil society organizations, and advocating for policy changes.
(ARIF S. DOCTOR, J.) (ACTING CHIEF JUSTICE)
Digitally signed byPRAVIN PRAVIN DASHARATH DASHARATH PANDIT PANDIT Date: 2023.07.26 17:28:47 +0530
9
2 issues framed by the court
"Whether a PIL filed by a petitioner without domain expertise and mere reliance on public domain documents should be entertained."
"Whether petitioners have a duty to engage in research and ground-level work beyond merely filing a petition."
Joaquim Sebastian D’Costa
Union of India
State of Maharashtra
Nitin Jamdar
Arif S. Doctor
As recorded by the court registry
Litigation brought on behalf of the public interest rather than a personal grievance, relaxing the usual rule of locus standi.
Judgements on the same questions, provisions and authorities, from every court
