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Democracy and Bioethics in the ‘Developing’
Countries: Who has the X-Factor?(ESPMH Conference, Debrecen 28.08.2014)
Ghaiath Hussein, MBBS, MHSc.(Bioethics)
Doctoral researcher, University of Birmingham, UK
Disclosure
• I am a holder of a PhD studentship grant from Wellcome Trust
• The costs of my participation in this conference are covered by this grant
• I have no conflict of interests • The opinions expressed in this presentation
are solely mine and do not represent anyone or any institution
Democracy in my country… 2 stories!
President phoning chief of intelligence President: I’m missing my golden pen. Indeed, someone stole it!Chief of intelligence: No worries Sir, I will take care of that.Few hours later… President on the phone again
President: It’s OK, I’ve found my golden pen. Chief of intelligence: Weird! we have arrested 14 –four of them already signed confessions of stealing it
• Story no. 1: The golden pen story
Outline of my talk
• How is bioethics ‘performing’ in different regions of the world?
• Why do I think this the case?• Democracy (whatever that means!) as bioethics’
X-factor• What can we do to help the field in ‘our’
countries without being sent to jail ?! (the example of informed consent)
• Take home messages
Regions on diet…Territory size shows the proportion of all scientific papers published in 2001 written by authors living there.Source: http://www.worldmapper.org/display.php?selected=205
Where did the authors of the scientific papers live?
What about bioethics?
GovernmentHospital
Research institutionUniversity
Total
0
100
200
300
400
500
600
700
800
50
10 1778
155
16
297
49
372
734Africa, Asia, and Caribbean (N=157/178)Americas and the EU (N=734/955)
No.
of r
egist
ered
REC
s/RE
Bs/I
RBs
Affiliation of research ethics committees/boards globally
Source: https://www.HealthResearchWeb.org/en/result
Why is it the case for bioethics in LMICs?Part of the overall reduced contribution to scientific publicationLack of trained personnel, infrastructure, resources, etc.. (e.g. Abou-Zeid et al. 2009, Kass et al. 2007)
Racist editors!!! (Chattopadhyay et al., 2013)
Democracy
Complicated care
Philosophy
It is not a coincidence…
• The countries with least Freedom of press and least democratic are the least in bioethics structures & publications
Sources: www.rsf.org/index2014/en-index2014.php and http://en.wikipedia.org/wiki/Democracy_Index#External_links
THE ECONOMIST DEMOCRACY INDEX (2012)
Why is democracy important to bioethics?
Freedom
• Free media• Free thinkers (philosophers?)• Free public (debates, gatherings,
lobbying, advocacy)
Rights
• Right to know - Right to ask - Right to be answered satisfactorily
• Rights are protected by laws
Accountability
• All is responsible• Doctors are not untouchable half-
gods• Politicians are not untouchable gods
Empowerment
• Make informed decisions about their lives after being fully informed and fully involved
How to survive? Example of Informed consent• Informed consent as an empowering micro-
democratic process• Practitioners and researchers can empower
the oppressed by:Disclosure
Gives the participant/pt. the right to knowGives her the right to ask questions & understand
Vol
untari
ness
Gives the participant/pt. the right to choose freely from different choicesGives her the freedom to refuse
Empowerment
People will know that they have the right to be informed, to discuss, and to choose freelyGenerational mind-shift ?macro-democracy
Conclusions
• Without democracy, bioethics in nothing more an academic discipline known and practiced selectively by practitioners and researchers
• Proper education and practice of bioethics will give the field the potential to be a tool of empowerment and positive change
• Informed consent, as a shared decision making process, is a micro-democratic process that can empower the oppressed in non-democratic countries
Democracy in my country… 2 stories!
• Story no. 2: The ‘stability’ story
George Bush Bill Clinton G. W. Bush Obama
• References • Abou-Zeid, A., Afzal, M., & Silverman, H. 2009. Capacity mapping
of national ethics committees in the Eastern Mediterranean Region. BMC Medical Ethics, 10, (1) 8 available from: http://www.biomedcentral.com/1472-6939/10/8
• Esayed, D. E. & Kass, N. E. Assessment of the Ethical Review Process in Sudan. Developing World Bioethics 7[3], 143-148. 2007.
• Kass, N.E., Hyder, A.A., Ajuwon, A., ppiah-Poku, J., Barsdorf, N., Elsayed, D.E., Mokhachane, M., Mupenda, B., Ndebele, P., Ndossi, G., Sikateyo, B., Tangwa, G., & Tindana, P. 2007. The Structure and Function of Research Ethics Committees in Africa: A Case Study. PLoS Med, 4, (1) e3 available from: http://dx.doi.org/10.1371%2Fjournal.pmed.0040003
• Chattopadhyay, Subrata, Catherine Myser, and Raymond De Vries. "Bioethics and its gatekeepers: does institutional racism exist in leading bioethics journals?." Journal of bioethical inquiry 10.1 (2013): 7-9.
THANKS FOR YOUR ATTENTION