Last Update:  March 14, 2005 

 

Issue Papers

Demystifying Research and Development (R & D): Research by all and in all development programs. Topic: 13. - Issue Papers

1. Moderator: Dr. Indira Shrestha, Senior Consultant Pediatrician and Honorary Member Secretary/Executive Director, ENHR Nepal.
     

2. Overview
   Research is, and should always be, integral part of any service or development program related to people, their life and environment. Historically, research has been a mere tool to validate preordained theories or prescriptive options, programs or services within provider’s perspectives with so called benefits or outcomes targeted to the people as beneficiaries, clients or consumers. Cost-effectiveness became the key concern in shaping R & D to satisfy policy makers and management. The purpose of research to critique, inquire or investigate the total domain and holistic development of human life and living including biophysical and psychosocial environment of the people or target groups remained masked or neglected. Fragmented and techno-centric scenario produced by traditional research became irrelevant or mismatch soon after they were generated. Similarly, traditional paradigms of development are heavily masked by development and/or income statistics or indices arbitrarily set as per capita or stratified. Demystification of R & D is necessary and should begin by questioning the justification and ethics of traditional research methodology and development practices. Only with such demystification the people including the poor, exploited and deprived would be able to participate in research and development as prime movers. Experts, researchers, technicians and professionals including health professionals should sub-serve the people and use R & D in people’s perspectives rather than becoming the tools or agents to technology, market, bureaucrats or systems. Research and development should enhance people’s autonomy and freedom of choices in dignity and self-reliant manner. R & D should give them confidence and trust in their potentialities rather than serve to ‘adapt, integrate, tame and dominate’ people (Illich I, Verne E, 1976). Misuse of statistics and research findings have tarnished the image of researchers. Likewise, research to justify preconceived options and convenient data, and research just for research must be discouraged and even condemned. Transparency, accountability and participatory democracy should be keywords in R & D. Research and development should be liberated from secrecy (except personal confidentiality), hidden agenda and motives to accentuate violence of all shorts including wars, torture, hate and exploitation of humans and nature.
    

3. Objectives

   1. To make research essential and integral part of all development programs and human services.

   2. To make research participatory involving all concerned persons especially the people based civil societies and activists, and the people as prime movers.

   3. To liberate research from the monopoly of research councils, universities, academies, research institutions and business houses.

   4. To demystify research and development in order to render research and its outcomes for common human good and humane development.

   5. To liberate research and its benefits from profit motives and bonds of Intellectual Property Rights (IPR).

   6. To banish secret, unethical and commercialized or profit-intensive R & D programs.
      

   7. To prevent misuse of health and related statistics.

   8. To resist strongly the tendency of making research as a tool to biopiracy.
       

4. Process and procedures:

   1. The moderator will deliberate, for 10 minutes, the objectives and procedures of the WS

   2. Election of one or two rapporteur(s) from among the participants.

   3. Presentation of testimonies - one from Nepal or South Asia and the second from other Regions (10 minutes each). Nepal’s testimony is included as an appendix. This is however subjected to acceptance by PHA Secretariat. The other testimony is to be generated by communicating through email and Internet.

   4. Generation of main/critical issues related to the topic from among the participants - 15 minutes.

   5. Interaction - Comments, sharing, reflections, questions and answers, and deliberations - 30 minutes.

   6. Short documentation or visual presentation (If any) - 10 minutes.

   7. Generation of a list of recommendations and conclusion by interactive participation - 10 Minutes.

   8. Key strategic actions for implementation of recommendations and follow-ups.
       

Summary Proceeding:
Preparation of one-page summary proceedings which will be submitted to the Coordinator of the PHA Secretariat on the same evening.
 
  

Appendix 1

 

TESTIMONY - A ( Nepal)
 
The field trial of Hepatitis E vaccine was authorized by NHRC and MOH in a community of Lalitpur Sub-metropolis recently. But the local-self government (Sub-metropolis) authority, local civil societies and community activists objected the trial of a multinational pharmaceutical company with following reasons:

1. The trial, if at all allowed, should be restricted to healthy educated adults, with no other risk including pregnancy, as illiteracy is a condition of social deprivation and at risk of giving consent without understanding the risk (or benefit) of participation.

2. Nepal should not have been chosen as the only country for the mass trial. Several countries including the developed countries should be involved by participating on such trials simultaneously with a mechanism of shared and prompt information exchanges among the subjects or their representatives on related risks.

3. Development of safe water supply systems should be key objective of preventive strategy rather than vaccine trial (HvE).

4. The conditions of compensation in case of harm or death should be transparent and the subject or guardians should know how to get entitlement to the compensation. Blanket insurance for the treatment of any health problems, which may not be related to vaccine administration directly or indirectly should also be instituted as diagnostic competency in Nepal, is doubtful.

5. The drug company should commit to provide the vaccine, if found effective, free of cost to the people of Nepal or other participating countries in the trial.

6. The company should also commit some portion of the profit to be made in future for the development of safe water supply in Nepal, in areas where risk of the virus is there.

In spite of aggressive promotion for the trial the local authority, civil societies and activists resisted and the company had to withdraw the trial.
 
Moral of the testimony:

• People are not duds. People are concerned on being guinea pigs for the vaccine or drug trials for the benefit foreign multinational companies.

• People understand the holistic preventive strategy and are able to take actions if necessary. Safe water supply would prevent many other diseases including HVE.

• People do not want to be dictated by councils or government authorities in matters of their health development.

• People are sensitive to their rights and may unite to assert their rights.

[This concept paper is open for comments, criticism and suggestions from any persons or quarters nationally and internationally. The paper is already put for international discussion in email networks nationally and internationally. Pls send your comments to Mathura Shresta at enhrn@mos.com.np]

Updated: October 7, 2000

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