The first time I was introduced to the concept of research ethics was when I started my work as a research assistant at the Institute of Community and Public Health, Birzeit University (ICPH-BZU). I was fascinated by the concept and tried to read as much as I could. While reading the different guidelines and regulations, I felt they were prepared to be implemented in an ideal world without taking into account the local context. With time, the international institutions realised that “one size does not fit all.” Recently, context and topic specific guidelines have emerged.
We, at the Institute of Community and Public Health, Birzeit University, try to ensure high quality research taking into consideration research ethics and local context specificity. As described correctly by Dr Jafarey (
1), Palestinians face several challenges on a daily basis. The influence of the Israeli occupation on people’s freedom of movement, safety, security and lack of basic human rights poses great challenges for health professionals serving in the healthcare system and researchers working in fragile and unstable settings. The occupied Palestinian territory can be defined as such a setting.
Ethical challenges facing researchers in fragile and unstable settings were of concern for us, researchers working at ICPH –BZU and also the staff at the Department of Reproductive Health and Research at the World Health Organization. Together we decided to conduct a training workshop to discuss challenges facing research ethics in fragile settings with researchers from these settings. With the support of Dr Jafarey from Karachi and Dr Daher from Beirut, we conducted a most interesting and rich three-day workshop. The workshop targeted members of Ethics Review Committees from the occupied Palestinian territory in addition to countries with humanitarian crises and fragile conditions.
When preparing to invite these members to the workshop there was great difficulty in making contact with the ethical review committee members. After many weeks of searching for members’ contact information in different countries, we were able to reach a few in the region.
These included Jordan, Egypt, Libya, Afghanistan, Yemen, Syria and Sudan. Unfortunately, we could not reach all national committees in the targeted countries; and some participants could not attend for visa reasons. The Palestinian colleagues from Gaza could not join because of the many reasons already mentioned by Dr Jafarey.
The discussion during the workshop was exhaustingly interesting and rich. The challenges the ERC members face range from basic bioethics issues, lack of ethics guidelines in their local language, the need to build local expertise in the field of bioethics and research ethics, the need for context specific and flexible guidelines; in addition to other specific local challenges. The participants discussed the role and powers of ERCs in their countries and institutions and raised several ethical issues related to research conducted by international bodies and institutions in their countries. An important part of the discussion was allocated to the influence of political instability on the health professional’s daily practice and the research conducted on mainly vulnerable groups; as well as the role of the ERC. The members indicated that they are struggling to make bioethics and research ethics a priority in fragile and conflict settings, where safety and humanitarian issues are the priority. As mentioned by one participant, “this workshop allowed us to identify people who appreciate and understand the importance of research ethics ─ we are not talking to ourselves.”
The Palestinian case is very attractive for all types of researchers. They all want to understand not only how the Palestinian population has survived the occupation for more than seventy years, but also how they have the best health and education indicators (
2). Learning from the Palestinian experience is very important especially with the recent so-called Arab spring in the last decade. Several Arab countries are living in unstable conditions due to direct war and armed conflict and other Arab countries are experiencing fragile conditions due to hosting a large number of refugees from neighbouring countries. Even countries with supposedly “finished” wars such as Iraq and Afghanistan, or areas with a potential for war such as Kashmir; are all facing humanitarian challenges and unstable conditions. Lessons learnt should include how to protect people, provide the right health, social and economic intervention that are ethical, appropriate and preserve people’s identity and dignity.
Given all these challenges, the importance of investing in local national ethics review committee members and institutional review members is essential and should be a priority. These people will be the safe guards and whistleblowers who will try to prevent misuse or abuse of research in fragile and unstable settings. These members need to work together to prepare their own context specific adapted guidelines that encourage and promote research as well as protect their people, especially those considered to be vulnerable. It is also important to highlight the need to integrate bioethics into all university programmes and institutional trainings, especially in conflict zones and fragile settings.
Finally, I have lived all my life in the abnormal conditions of the Israeli occupation, thinking this is a normal life. I hope the new generation of Palestinians and people in fragile settings can live a normal life and feel the meaning of freedom.