Bioethics Initiative
Awareness Raising, Educational Activities and Capacity Building
Strategy:
To train a critical mass of mid career faculty to take a lead role to cultivate interest among wider community.
Activities:
The first intensive course was held on 14th and 15th August, 13th and 14th of September and 24, 25, 26th of October 2003. Collaboration with the WHO non-communicable disease initiative and human genetics programme, Kings College, University of London and Centre for the study of human Rights, University of Colombo was very popular and competitive with applications from 150 people for 30 vacancies. Therefore, we trained 50 professionals from 6 Universities and other academic institutions.
A Basic & Advanced Courses in Bioethics was held on 13th January 2007 at Sri Lanka Foundation Institute, Colombo 7 from 9.00am to 12.00noon.
Experts from India, Pakistan, Philippines, Bangladesh, Indonesia, Thailand and Sri Lanka were resource persons for this meeting. We trained 100 professionals from 6 Universities and other academic institutions.
Research Methods Training Workshop series
The IRD organized a series of training workshops in research methods as a capacity building initiative in conducting empirical research into ethics. The series consisted of 05 workshops held from December 2009 to March 2010
The aims were; knowledge and skill development to, enhance core-group capacity on theoretical aspects of ethics, research methodologies, analyses, publication and other relevant components. Special emphasis was placed on research methodology relevant to research in ethics.
Expert academics from around the globe will participate in these workshops as resource persons. Dr Anant Bhan, Prof. Clare Williams, Prof. Steven Wainwright and Dr Robert Stewart were among the resource persons of academic eminence.
The workshops are organized in collaboration with the School of Social Science and Public Policy of King’s College London and the Institute of Psychiatry of King’s College London. The Wellcome Trust funded the event.
Promotion of bioethics among school children by working with the National Institute of Education.
Advocacy, Policy and Guidelines Development from a Developing World Perspective
Strategy:
Initiating and contributing to activities that will have impact of policy locally and internationally that will convert philosophy to action.
Activities:
Published a book titled Research ethics from a developing world perspective’, circulated locally and internationally among interested academics, and organisations. This document was published after incorporating the suggestions received.
Research Ethics from a Developing World Perspective.
Review 1. Review 2. Review 3. Download the e-book.
Contributed to the follow-up discussion paper by Nuffield Council of Bioethics, 2005 (www.nuffieldbioethics.org): ‘the user perspective from the researchers point’ on the new developments and revisions to guidelines on the ethics of research in developing countries.
The ethics of research related to healthcare in developing countries: a follow-up discussion paper.
Contributed to the discussion on ‘ Pharmacogenetics ethical issues ‘ published by Nuffield Council of Bioethics (2003).
Consensus Generation Meeting on disaster research and ethics from a developing world perspective was held on 13th January 2007 at Sri Lanka Foundation Institute, Colombo 7 from 9.00am to 12.00noon.
Similarly, in parallel bioethics initiatives had taken place in other core-group countries. Networking among them existed but in a limited scale. Faced with the aftermath of the Asian tsunami, earthquakes, volcanic eruptions, recurrent floods, cyclones, droughts, conflicts, and other disasters that devastate communities in the South and South-East Asian Region, the group came together as a multidisciplinary group to form the ‘Working Group on Disaster Research and Ethics (WGDRE) in 2007, through a Wellcome Trust conference Grant.
The group produced a draft guideline for disaster research and ethics covering 12 important areas (i) relevance of research to disaster situations, (ii) informed consent and voluntariness, (iii) role of Community consultation and participation (iv) exploitation (v) dignity, privacy and confidentiality (vi) risk minimization, (vii) professional competence (viii) public interest and distributive justice (ix) dissemination of results, (x) ethics review, (xi) international collaborative research (xii) institutional responsibilities and arrangements.
Even though there is overlap with existing guidelines, the group agreed that greater vigilance is necessary in disaster-related research to ensure that the general ethical principles are adhered to and participants are protected.
The initial group consisted of Athula Sumathipala, Prof Aamir Jafarey (University of Karachi, Pakistan), Prof Aasim Ahmad (Aga Khan University, Pakistan), Prof Leonardo de Castro (University of Philippines), Prof Darryl Mercer (UNESCO Thailand), Prof Omar Rahman (Independent University of Bangladesh), Dr Nandani Kumar (Indian Council for Medical Research) and Dr Anant Bhan (India), Dr Sisira Siribaddana (Sri Lanka), Dr Sriyani Beneragama, The group has experts in ethics as well as research in different fields.
Presentations on the draft has been made on behalf on behalf of the group (dissemination opportunities were restricted due to limited funding available) in various fora including at the 8th Asian bioethics conference in 2007 (Bangkok) and the 2nd National Bioethics Conference (India) in 2007. A seminar was also done on disaster research ethics at the Shaukat Khanum Memorial Hospital and Cancer Research Centre, Lahore. The Centre for Biomedical Ethics and Culture (CBEC), Pakistan is including a section on disaster ethics in its Masters in Bioethics program starting this year. Further dissemination work is planned. Guidelines are now published in Asian Bioethics Review.
Carrying out Empirical Research in Ethics
Strategy:
Initiate multidisciplinary research on ethical issues related to the developing world and to generate evidence based information. Such data will help national and international scientific community to take locally appropriate informed decisions, particularly during international research collaborations.
Activities:
Research project on ethics titled ‘Informed consent in Sri Lanka; current practices, quality of the information leaflets, consent forms and participants understanding of the process’. (Funded by the Wellcome Trust). The aim of this study was to provide a comprehensive review of consent practices in research carried out in Sri Lanka over the last five years. The study also aims to capture the perspectives of researchers, research participants and those involved with ethical review. It also aims to ascertain the level of understanding of scientific research and the concept of voluntary informed consent among research participants. This research is now completed.
Global Networking
Strategy:
To establish local, regional and international networks with individuals and organisations involved in ethics.
Activities:
We have successfully established collaborations with academics in South Africa, India, Pakistan, Bangladesh, Vietnam, USA, Australia, Canada and with the WHO.
SAARC Team
(This network has grown since then)
Disaster Ethics
2004 Tsunami disaster was followed by a huge influx of foreign organisations and individuals offering humanitarian aid, including counselling to Sri Lankan survivors. When research is combined with humanitarian aid, and at times clinical care (therapeutic misconception), there can be undue inducement for participation, in this vulnerable population. It might not be explicit to the tsunami survivors that what they are participating in is research. Issues get more complicated because researchers might rush to collect data, without adequate planning and under the disguise of “needs assessments”. Research can include clinical care but it should be made explicit to the participants because clinical care is something routine whereas research is not, particularly in the developing world. Otherwise survivors are at risk of exploitation for research disguised as clinical care. Anticipating this situation, we in advanced launched a campaign under the title ‘prevent, re-traumatisation of traumatized’. This included local, regional and international work (Sumathipala & Siribaddana, 2005).
Symposium on forensic genetic services held in February 2005.
Considering the importance of disaster related research ethics and its particular relevance to international collaborations and huge potentials for exploitation, and inadequacy of work in this area, we wish to place a special emphasis on this topic.
Held a workshop on 28th January 2005 under the title of ‘Ethics of trauma research; Lets prevent re-traumatising the traumatised’. This was held immediately after the Tsunami because we foresaw exploitation of the survivors of tsunami for easy and cheap research.
Intensive course in Bioethics in Sri Lanka
In 2003 the Wellcome Trust bioethics Programme funded us to carryout an intensive course in Bioethics in Sri Lanka.
Thorough this initiative we consolidated our collaborative links with South African Research Ethics Training Initiative (SARETI), I nternational Research Ethics Network for Southern Africa (IRENSA), International Programme for Ethics, Public Health and Human Rights (IPEPH), Pakistan Bioethics Training Initiative, Joint Centre for Bioethics in Canada and Policy Ethics and Life Science Research Institute (PEALS) Centre for Life Newcastle, Durham Institute of Comparative Ethics, Department of Anthropology, University of Durham, Centre for the Study of Human Rights, University of Colombo, and the WHO.
The intensive course in bioethics was held over 3-weekends (7 days) within 3 months. Initially we planned for 30 participants but 135 from across various disciplines applied, so we increased the number to 50. They were a diverse group with medical and non-medical academics, lawyers, journalists, nurses, and ethics committee members.
The inauguration of the initiative was held as a public seminar in keeping with our aim of public engagement and dialogue. The programme was evaluated and endorsed by WHO Human Genetics Programme of the NCD section and a representative from the WHO participated for the inauguration.
International faculty were, Dr D R Wassenaar University of Natal, South Africa; Co-PI South African Research Ethics Training Initiative (SARETI); Dr. Theodore Fleischer, Deputy Director, Bioethics Centre, International Research Ethics Network for Southern Africa, University of Cape Town, Dr. R Simpson, Senior Lecturer, Policy Ethics and Life Science Research Institute (PEALS) Centre for Life Newcastle, Durham Institute of Comparative Ethics Department of Anthropology, University of Durham.
Total numbers of applicants were 135 . Because of this unexpected demand number of places were increased from 30 to 50 . They were an impressive group from diverse background. The group consisted of 28 males and 22 females. The composition was:
- Members of the existing ethics review bodies: There were participants from 7 out of the existing 8 ethical review bodies at Universities/academic institutions, including the Chair of the ethics committee at the Faculty of Medicine, University of Ruhuna, Secretary of the of the ethics committee at University of Peradeniya, founding Secretary of the ethics committee of the Sri Lanka Medical Association.
- Academics: 15 University academics, another 5 from other academic and research institutions, 15 were from clinical background but some were actively involved in research. 2 were nurses. Then Dean of the Faculty of Medicine Galle, Professor of Paediatrics, Faculty of Medical Sciences University of Sri Jayewardenepura who was later appointed Vice-Chancellor attended some of the sessions attended some of the sessions.
- Non-medical background: There were 7 lawyers, 3 senior journalists, 3 from community-based organisations (non governmental).
Attendance was very satisfactory as 42 of the 50 participants (94%) had good attendance and only 5 (6%) dropped out. 3 people attended only 14% of the training and dropped out after and 3 of them were from Media. This suggested to us that they need a separate course from others.
International Conferences and Workshops
- A Fellowship awarded by Medical Research Council (UK) for 3rd Global Forum on Bio Ethics. Cape Town South Africa. 21st -23rd February, 2002.
- Two fellowship were awarded by WHO/PAHO for 4th Global Forum in Bio Ethics, on ‘Genomic and Ethics’ Brasilia, Brazil. 29th -30th October 2002.
- Two fellowships were awarded by the Wellcome Trust for 6th Global Forum in Bio Ethics, on ‘after completion of research’ Malawi 17th to 20th March 2005
- A fellowship was awarded by the Fogarty International Center of the National Institutes of Health, USA to attend the Grant Writing Workshop on Bioethics, held at the University of Toronto. 5th -6th, November, 2001
- A felowship was awarded by he Wellcome Trust for summer school in Genomic, Ethics and Society. Cambridge, UK 9th -13th September 2002.
- Dr. Sumathipala, Dr. Siribaddana and Dr. Jayasingha was awarded for fellwoships for 7th Global Forum held at Aga Khan University, Karachchi, Pakistan.
- Dr. Sumathipala, also had a short fellowship awarded by Wellcome Trust for summer school in Genomic-Ethics and Society. Cambridge, UK 2002.
- A short fellowship for the workshop on Ethical Issues in International Health Research”, Havard School of Public Health in Boston, June 13-17, 2005.Monash University Australia.
- Two of the ethics committee members completed full fellowships at Monash University Australia, leading to a MSC in Bioethics, which is a Fogarty funded programme.
Invited as resource persons in international meetings and training workshops
- Prof Sumathipala was invited as a resource person for the following meetings. 2nd Symposium and workshop on “Ethical Issues of Health Research in Developing Countries”, The Aga Khan University, Karachi, Pakistan, 2003, a bioethics training programme funded by the Fogarty.
- Prof Sumathipala was an invited speaker at the workshop on the ethics of research related to healthcare in developing countries, held from 12 – 14 February 2004, Cape Town, South Africa which was co-hosted by the South African MRC and the Nuffield Council on Bioethics. This meeting brought together researchers who are actively involved in research related to healthcare in developing countries.
- Prof Sumathipala was an invited speaker at the First National Bioethics Conference organized by the Indian Journal of Medical Ethics held in Mumbai, India, at the symposium on Post disaster research and ethics.
- Prof Sumathipala was an invited resource person at International Research Ethics Workshop held in Karachi Pakistan on 28th and 29th November 2005.
- Prof Sumathipala invited as speaker at the workshop; ‘Global to local, conflict and disaster – Ethical post-tsunami research’. Organised by the Transcultural Special Interest Group Conference, Royal College of Psychiatrists, UK 25th October 2005.
- Prof Sumathipala invited as an international advisor to the initiative was an invited resource person at International Research Ethics Workshop held in India from 6th to 10th February 2006, organized by the Indian research Council and funded by the Fogarty. He was invited to talk on disaster related research ethics including a presentation of a real case study related to tsunami ethics. Two members of the IRD, Dr V.Murali and Dr Clifford Perera also participated as trainees.