Stem Cell Research: CIC asks ICMR to share draft guideline details

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Disclosing the information could result in its misuse since it revolved around various medico legal issues on a continuously evolving and dynamic field of research and in many instances patients were likely to be misguided about the benefits from the use of technology by misunderstanding the facts that it would act as a panacea for all ills and that unscientific or unethical stem cell therapy continued to pose a threat to the well-being of patients and other vulnerable individuals. – ICMR

New Delhi: Keeping in view the sensitivities and criticalities involved in the Stem Cell Research, the Central Information Commission today passed an order instructing Indian Council of Medical Research to provide full information regarding the draft guidelines, including comments, suggestions and objections received for the National Stem Cell Research to the Appellant through the law firm – Fortis India Law and also suo motu disclose the information on their website in the larger public interest of all the concerned stakeholders within15 days.

ICMR submitted that the information sought by Dr. Hemangi Sane, through Fortis India Law, regarding the draft guidelines for the National Stem Cell Research – 2017, being sensitive and confidential and related to various comments, objections and suggestions received from Third Party Individuals, Institutions, Organizations, could not be disclosed in compliance with the instructions of the higher authorities. Regarding the information relating to the criteria for selection of Non-Government Members of Committee for drafting the National Guideline for Stem Cell Research, 2017, ICMR has disclosed that members were appointed at the discretion of the Secretary, Bio Technology and Secretary, Health Research, Health and Family Welfare Ministry.

On being queried by the Commission regarding disclosing the information held and available with ICMR in the Public Domain, the Respondent submitted that disclosing the information could result in its misuse since it revolved around various medico legal issues on a continuously evolving and dynamic field of research and in many instances patients were likely to be misguided about the benefits from the use of technology by misunderstanding the facts that it would act as a panacea for all ills and that unscientific or unethical stem cell therapy continued to pose a threat to the well-being of patients and other vulnerable individuals. It was also emphasized that at the time of finalization of the guidelines the views of various independent organization, research think tanks, individuals/ representatives of various Government Institutions Organization Bodies and other stakeholders were taken into consideration. On being queried regarding the suo motu disclosure of minutes of meeting where comments, objections, suggestions on guidelines were taken into consideration and minutes regarding criteria for selection of Non-Government Members of the Committee for drafting the impugned guidelines, in the public domain, ICMR failed to provide a satisfactory response.

Through a written submission to the Commission dated 20 May 2019, it was submitted by ICMR that all the norms of drafting and finalizing the National Guidelines for Stem Cell Research had been followed and the Final Draft was placed in the public domain for the stakeholders to respond.

Regarding the disclosure of information regarding the comments, suggestions objections received on the draft guidelines for National Stem Cell Research 2017, the Commission observed that these should be disclosed proactively in the public domain to ensure openness and transparency in the working of the authority as also to ensure that the “real purpose of a multi-stakeholder model which harps on participatory and inclusive decision making is achieved”.

It is categorically noted in the order passed by Central Information Commissioner Bimal Julka that a voluntary disclosure of all information that ought to be displayed in the public domain should be the rule and members of public being forced to seek information (through RTI) should be an exception. An open government, which is the cherished objective of the RTI Act, can be realised only if all public offices comply with proactive disclosure norms. Section 4(2) of the RTI Act mandates every public authority to provide as much information suo-motu to the public at regular intervals through various means of communications, including the Internet, so that the public need not resort to the use of RTI Act.

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