Second International Convention on Ethics in Research on Human Subjects: Evolving Norms

“Second International Convention on Ethics in Research on Human Participants: Evolving norms and guidelines for the Indian context”

2nd to 4th Sept 2014 Convention Centre, Jawaharlal Nehru University

Tentative Program Day 1: 2nd Sept, 2014 Registration 9:00 am – 10:00 am

Session 1 Inaugural Session 10:00am to 11: 40 am

Rapporteur 1: Shahnaz Rapporteur 2: Neelu Rapporteur 3: Garima Rapporteur 4: Ranjan An Introduction 10:00 – 10:15 Prof. Vaishna Narang, Convener,

Welcome Address 10:15 – 10:30 Prof. S K Sopory, Vice Chancellor, JNU

Ethical Concerns in Clinical Research 10:30 – 10:45 Keynote Address Prof. Ranjit Roy Chaudhury, Emeritus Scientist

Address by The Chief Guest 10:45 -11:00 Prof. V. M. Katoch, DG ICMR

Inauguration of the Conference 11:00 – 11:15 Dr Nata Menabde, WHO Representative

Chairperson’s Comments 11:15 – 11:30 Prof. Shiv K Sarin, Chairperson, IERB

Vote of Thanks 11:30 – 11:40 Prof. Amita Singh, CSLG, JNU

High Tea 11:40 – 12:00 Session 2 Plenary I 12: 00 noon to 01:00 pm

Chairperson: Prof. Madhuri Behari, Dept. of Neurology, AIIMS, New Delhi

Speaker: Prof Ranjit Roy Chaudhury, Emeritus Scientist.

Title: “Clinical Trials in India - Vision 2020”

Rapporteur 1: Deepshikha Misra

Rapporteur 2: Saad Ahmad

Rapporteur 3: Neelu

Lunch at JNU Cafeteria 01:00 pm to 02:00 pm

Session 3 Plenary II ______0 2 :00 pm to 0 3 :00 p m

Chairperson- Prof. S. K. Sopory/

Speaker: Dr. S. K. Sarin, Chairperson IERB

Title: "Rights and responsibilities of Patients”

Rapporteur 1: Shreya Barbara

Rapporteur 2: Shahnaz Samantara

Rapporteur 3: Decha

Tea 03:00 pm to 03:30 pm

Parallel Sessions 4&5

Session 4 Lecture Hall 3 3:30 pm to 05:00 pm

Chairperson: Prof. R. Gargesh

Rapporteur 1: Salonee Priya

Rapporteur 2: Sandesha

Rapporteur 3:Ranjan

S.No Name Title 4.1 Abhay The Ideal of Equality: an analysis Indian institute of technology Kanwar towards Capability Approach Bombay Povai Mumbai Maharastra 4.2 (a)Afzal Respect for Dignity of Unborn Human University of Delhi Ahmad Being and Universal Declaration on Department of Philosophy (Doctoral Bioethics and Human Rights : An Researcher) Analysis

(b)Shilpi Srivastava 4.3 Arpana Jha Ethical issues and dilemmas of Centre for Linguistics/JNU teachers: research with children and young teenage students as participants 4.4 Dr. Anup Ethical Dimensions in the Biomedical Jawaharlal Nehru University Kumar Das Innovations in India: Mapping of (CSSP/SSS) National Bioethics Frameworks 4.5 Prof Ethics and Research on Hyderabad Panchanan Ethnic/Endangered Languages Mohanty

Session 5 Committee Room 03:30 pm to 05:00 pm

Chairperson: Prof. Imtiaz Hasnain, AMU Aligarh

Rapporteur 1: Nishant

Rapporteur 2: Agniva

S.No. Name Title 5.1 Ashima Need and Relevance of Population Department of Education, Srivastava Education at school level in the New Delhi Present Indian Contex 5.2 Asher Ethics in Data Collection-Research in Centre for Linguistics/JNU Jesudoss ELT Curricula Planning 5.3 Bidisha Som Perspective on the changing status of Department of Humanities and Human subjects in linguistic Social Sciences Indian Institute of Technology Guwathi Assam 781039 5.4 Dr. Chintala A Buddhist Perspective on Greed and School of Buddhist Studies Venkatasivasa Globalization with special reference to and Civilization , Gautam Buddhist Ethics Buddha University 5.5 Chitta Ranjan Ethics in Social Research Japanese Studies Malik Division/Center for East Asian Studies/JNU

Day 2: 3rd Sept, 2014 Parallel sessions 6 & 7

Session 6 Committee Room 0 9 : 3 0 am to 10 :30 a m

Chairperson: Prof. Renu Saxena

Rapporteur 1: Ranjan

Rapporteur 2: Arpana Jha

S.No. Name Title 6.1 Sangeeta Legal Issues Arising out of Research Department of Sharma for medically Unfit Population Neuropsychopharmacology Institute of Human Behaviour & Allied Sciences (IHBAS) Delhi - 110095, INDIA 6.2 Dr. Ramesh Ethics issues in Psycholinguistic Center for Neural and Kumar Research Cognitive Sciences Mishra Science Complex University of Hyderabad 6.3 Ramya Ethical concerns involving human Department of Humanities, Dwivedi participation in Behavioral Research BBDNIIT, Lucknow

6.4 Dr. Senthil Ethics in Psychiatric Research: Issues Department of NMR and MRI Kumaran and Guidelines (AIIMS) New Delhi

Session 7 Lecture Hall 3 9 :30 am to 10: 30 am

Chairperson: Dr. Ramesh Kr. Mishra

Rapporteur 2: Ritu/Shahnaz

S.No. Name Title 7.1 Dr. Divya Exploring a Child’s Mind through Clinical Psychologist child Prasad Children’s Apperception Test: A and Adolscence Guidance Case Report Centre Nur Manzil Psychiatric Centre, Lucknow

7.2 Amita Singh Ethics: Beyond Anthropogenic Special entre for the Study of Suffering Law and Governance, JNU

7.3 Dr. Lily Clinical Research Law, Ethics and S.J.N.P.G. College Lucknow Srivastava Techno- Science 7.4 Sushil K. Jha Can we say no to “Ethics” in Sushil K. Jha, School of Life biomedical Research? Sciences, Jawaharlal Nehru University, New Delhi- 110067, India.

Session 8 Plenary Session III ______10 : 3 0 am to 11 : 3 0 a m

Chairperson- Prof Ranjit Roy Chaudhury

Speaker: Prof Vijay Kumar, ICGEB

Title: "Standards and Operational Guidelines for Ethics Review of Research with Human Participants"

Rapporteur 2: Sandesha/Decha

Tea 11:30 pm to 12:00 pm

Session 9 Plenary IV- Committee Room ______12 : 0 0 noon to 01 : 00 p m

Chairperson- Prof R.C. Sharma, Delhi University

Speaker: Shibani Chaudhury

Title: “Vulnerability Issues or Exploitation of Semiliterate /Rural/Tribal Populations in Research or any Related Issues”

Rapporteur 1: Garima

Rapporteur 2: Neelu/Shahnaz

Parallel sessions 10, 11 & 12

Session 10 Committee Room 0 2:0 0 pm to 3 :30 p m

Chairperson: Prof Tariq Rahman / Prof P.K. Das

Rapporteur 2: Shreya S.No. Name Title 10.1 Dawa Evaluating the political economy of CESP/SSS//JNU Sherpa unethical clinical trials on tribals and economically poor in India in post- liberalisation era: Deciphering the logic of Market Ethics 10.2 Dr. Divya A study on change in Economic Rukmini Devi Institute of Chowdhry Empowerment of Employed Women Advance Studies New Delhi in India

10.3 Dr. Deepa Ethical issues in conducting Department of English Moni linguistics research on endangered Language Indira Gandhi Boruah language National Tribal University, Madhya Pradesh

10.4 Dr. Gurpyari Respect for Individuality: Rising Sharda University Bhatnagar above the Scintillating Portrayals

10.5 Jyothsna Ethical Research Practice in Associate Professor Latha Fieldwork: Some Reflections on Azim Premji University Belliappa Teaching Research

Session 11 Lecture Hall 3 0 2 : 0 0pm to 03 :30pm

Chairperson: Dr. Arvind Agrawal

Rapporteur 1: Asher

Rapporteur 2: Saad

S.No. Name Title 11.1 Sabina Terminal Illness, Pain and Euthanasia: University of Hyderabad Shamim A case for moral framework and public debate 11.2 Neha Chauhan Human Subject: Indian Case Vs World Jawaharlal Nehru University Standards (SSS) 11.3 Ketaki dwivedi Trust as an Ethical Imperative: A study University of Delhi of Victims of Displacement 11.4 Dr. Suhas Awareness and Practice of Research SOSS,IGNOU Shetgovekar New Delhi Ethics amongst Psychologystudents 11.5 Dr. Sunita Reproductive Ethics in Commercial Center for Social Medicine, Reddy Surrogacy: Informed Consent and Community Health/SSS/JNU Decision making in IVF clinics in Hyderabad and New Delhi, India

Sessions 12 Lecture Hall 1 0 2 : 0 0pm to 03 :30pm Chairperson: Dr. P. K. Gulati

Rapporteur 1: Nishant

Rapporteur 2: Deepshikha

S.No. Name Title 12.1 Dr. Nayantarra Of risks and benefits: Everyday ethics Geneva Sheoran in stem cell research and therapies in PO Box 136 India CH1211 Geneva21- Switzerland 12.2 Sangeeta Paul Recognization of Risk benefit Analysis PhD Pharmacology Scholar, for Human subject during Clinical Banasthali University, Trials Rajasthan 12.3 Sakshi Chopra Ethical Dilemmas of Clinicians dealing Clinical Neuropsychology, with Malingering Patients AIIMS, New Delhi

12.4 Gopal Ram How Sensitive We are as Fieldworkers Department of Translation Parihar for the rights of Research Participants: Technology, School of Issues of Ethics in Research Translation & Interpretation, Mahatma Gandhi Antarrashtriya Hindi Vishwavidyalaya, Wardha, MH 12.5 Ashima Nehra The Ethical Angle of Geriatric Care: A Clinical Neuropsychology, Practioner's View AIIMS, New Delhi Tea 03:30 pm to 03:45 pm

Session 13 Plenary Session V ______03:45 pm to 04.30 p m

Chairperson: Dr. Tripti Khanna

Speaker: Arvind Agrawal

Title: “Issues and Challenges of Ethics in Social Research: A critical sociological Analysis”

Rapporteur 2: Sandesha /Ritu

Chairperson: Dr. Sonja Eisenbeiss, Essex University, UK

Rapporteur 1: Asher

Rapporteur 2: Ritu Yadav S.No. Name Title 14.1 Gao Wei Researching Disability: Ethical Program Manager, Wuhan Considerations University Public interest and Development Law Institute China

14.2 Dr. Kavita Images, Realities and Knowledge Arora Generation: Challenges of University of Delhi Department conducting research on aboriginal of Geography Shaheed Bhagat tribes of Andaman and Nicobar Singh College) Islands, India 14.3 Prof Imtiaz Covering Informants and Exclusive Department of Linguistics, Hasnain Social Research: Bringing Discourse AMU, Aligarh of Disillusionment from Remote to Centre 14.4 Dr. Compromising Teaching for NC College of Engineering, Varalakshmi Research: Syllabus Design for Israna (Panipat) Chaudhury Autonomous Learners

Session 15 Committee Room 004:30 pm to 06:00 pm

Chairperson: Dr. Sushil Kumar Jha, SLS, JNU

Rapporteur 1: Shahnaz

Rapporteur 2: Salonee/Sandesha

S.No. Name Title 15.1 Garima Dalal Ethics of research involving young Centre for Linguistics/JNU children: An Indian case study 15.2 Dr. Stellina Ethical Guidelines for Biomedical Faculty of Legal Studies South Jolly Research on Human Subjects: Asian University Opportunities, obligations, challenges New Delhi and solutions 15.3 Dr. Surinder Deaf Communities and Research Senior Consultant BAASLS- Randhawa Ethics NCDS IGNOU New Delhi 15.4 Ankeeta Ethical Issues and MR safety Department of N.M.R. and Saxena and Dr. Involved during fMRI R.P.C. AIIMS Senthil Kumaran

Sessions 16 Lecture Hall 1 04:30 pm to 06:00 pm

Chairperson: Dr. Sangeeta Sharma

Rapporteur 1: Deshari Rapporteur 2: Nishant

S.No. Name Title 16.1 Shreya Recommendations for Evolving Centre for Linguistics/JNU Barbara Ethical Norma and Guidlines for Autistic Children in the India Context 16.2 Dr. Punit Global Competitiveness-The Krishna Prestige Institute of Kumar Model Management and Research Dwivedi (PIMR), Indore, (M.P) India 16.3 Harsimarpreet Ethical considerations for Patients with Clinical Neuropsychology, Kaur Receptive Aphasia AIIMS, New Delhi

16.4 Reena Is Embryo A Person? A Moral and Delhi University Department Kannojiya Religious Dilemm of Philosophy Miranda House

Day 3: 4th Sept, 2014 Parallel Sessions 17 & 18

Session 17 Committee Room 09:30am to 10:30am Chairperson: Prof. G.K. Das/H.C. Narang

Rapporteur 1: Neelu

S.No. Name Title 17.1 Dr. V. N. “Protecting the Participants in Andhra University Varma Human Research Norms and Guidelines for the Indian Context”

17.2 Sonja Extending Experimental Linguistics Department of Language and Eisenbeiss to Under-Researched Language and Linguistics, University of Essex, Populations-The Principle of Justice Colchester, U.K. and New Ethical Challenges 17.3 Dr. Madhubala Intrinsic Value and the Good Life Z.A. Islamia College Siwan Kumari Under J.P. University Chapra Bihar 17.4 Salonee Priya Ethics in Tribal Research Centre for Linguistics/JNU

17.5 Dr. Syed Siraj Building Up an Ecologically Professor, Hindustan University, Sustainable Society by Inculcating Chennai Environmental Ethics and Values in Children.

Session 18 Lecture Hall 3 09:30am to 10:30am

Chairperson: Dr. Sunita Reddy

Rapporteur 1: Sahnaz

S. No. Name Title 18.1 Vikash Kumar Ethics of Research in Humanitarian Indian Council of World Affairs Emergencies: A study of Chin (ICWA) Sapru House, Refugees in India Barakhambha Road, New Delhi 18.2 Swati Bajpai Clinical Neuropsychology, Difference in the Ideal & Practiced AIIMS, New Delhi Ethical Frame of Reference In Dementia Diagnosis: A Neuropsychological Approach 18.3 Prof Pradeep Ubiquitous boundaries of ethical Centre for Linguistics/JNU K Das concerns in social sciences 18.4 K.P. Deepak Theory of Individuality Against Jawaharlal Nehru University Ethics Session 19 Plenary Session VI Committee Room 10:30am to 11:30am

Chairperson- Vibhuti Sharma

Speaker: Dr. Ravinder Singh

Title: “Ethical Issues Related to Health Research in India"

Rapporteur 1: Garima Dalal

Rapporteur 2: Asher

Tea 11:30 am to 12:00 noon

Session 20 Plenary Session VII Lecture Hall 3 12:00 noon to 01:00pm

Chairperson: Dr. Senthil Kumaran

Speaker: Dr. P.K. Gulati

Title: “Covering the Ethical Issues in Radiological Investigations”

Rapporteur 1: Varalakshmi / Neelu

Session 21 Committee Room 02:00 pm to 03:30pm

Chairperson: Dr Ashima Nehra

Rapporteur 1: Deepshikha

Rapporteur 2: Saad

S.No. Name Title 21.1 Tripti Khanna Building Up an Ecologically Professor, Hindustan Sustainable Society by Inculcating University, Chennai. Environmental Ethics and Values in Children. 21.2 Shahnaz Ethical Issues in Working with Deaf Samantara Population 21.3 Sulaganya Ethical Guidelines for Research on Faculty of Liberal Arts, Punyayodhin Human Subjects in Thailand: Rajmangala University of Informed Consent Process Technology Thanyaburi, 39 Muh 1, Nakhonnayok Rd Thailand 21.4 Mr. Umesh Aspects of researches on Tribes of JNU (CHS/SSS) Kumar Kute central India: Past and present. 21.5 Deepshikha Ethical and Legal Concerns for a Centre for Linguistics/JNU Misra Highly Vulnerable Population of 70+ Cases of Dementia: A Qualitative Study in Indian Context

Chairperson: Prof. Panchanan Mohanty

Rapporteur 2: Dishari

S.No. Name Title 23.1 Poonam Natrajan 23.2 23.3 Rajiv Khanna 23.4 Rukhsana Chaudhury 23.5 Abha Yadav Tea 03:30 pm to 04:00 pm

SESSION 24 Committee Room 04:00 pm to 05:30 pm_____

 Panel Discussion

 Valedictory Address

 Distribution of Certificates

Panelists:

Prof S.K. Sopory

Prof Shiv Kumar Sarin

Prof. V. M. Katoch DG, ICMR

Prof Madhuri Behari, Dept. of Neurology, AIIMS

Prof Amita Singh & Prof. Vaishna Narang, JNU The panel discussion will be moderated by Prof. Shiv K. Sarin, Chairperson, IERB.

Distribution of certificates by Dr.V.N.Katoch.

Summing up and vote of thanks by Prof.Vaishna Narang.

Rapporteur 1: Shahnaz

Rapporteur 2: Salonee

Rapporteur 3: Neelu