This document summarizes a presentation on democracy and bioethics in developing countries. It finds that bioethics is less developed in regions with less democracy and freedom, as measured by factors like independent media and thinkers. Democracy is important for bioethics because it enables freedom, rights, accountability and empowerment. Informed consent is discussed as a micro-democratic process that can empower people in non-democratic countries by giving them information, the right to choose, and freedom to refuse. The presentation concludes that without democracy, bioethics is just an academic discipline and that informed consent practiced well could promote positive change.

1. 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
ghaiathme@gmail.com

2. 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

3. Democracy in my country… 2
stories!
• Story no. 1: The golden pen story
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

4. 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

5. 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

6. What about bioethics?

7. Affiliation of research ethics committees/boards
800
700
600
500
400
300
200
100
0
Source: https://www.HealthResearchWeb.org/en/result
Government
Hospital
globally
Research
institution
University
Total
50
10 17
78
155
16
297
49
372
734
No. of registered RECs/REBs/IRBs
Africa, Asia, and Caribbean (N=157/178)
Americas and the EU (N=734/955)

8. Why is it the case for bioethics in
LMICs?
Part of the overall
reduced contribution to
scientific publication
Lack of trained
personnel,
infrastructure,
resources, etc.. (e.g. Abou-
Zeid et al. 2009, Kass et al. 2007)
Racist editors!!!
(Chattopadhyay et al., 2013)
Democrac
y
Complicate
d care
Philosoph
y

9. It is not a coincidence…
• The countries with least Freedom of press and least
democratic are the least in bioethics structures &
publications
THE ECONOMIST DEMOCRACY INDEX
Sources: www.rsf.org/index2014/en-index2014.php and
http://en.wikipedia.org/wiki/Democracy_Index#External_links
(2012)

10. 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
Accounta
bility
• All is responsible
• Doctors are not untouchable half-gods
• Politicians are not untouchable gods
Empower
ment
• Make informed decisions about their lives after being fully
informed and fully involved

11. How to survive? Example of Informed
consent
• Informed consent as an empowering micro-democratic
process
• Practitioners and researchers can empower the
Gives the
participant/pt.
the right to
know
Gives her the
right to ask
questions &
understand
oppressed by: Disclosure
Voluntariness
Gives the
participant/pt.
the right to
choose freely
from different
choices
Gives her the
freedom to
refuse
Empowerment
People will
know that they
have the right to
be informed, to
discuss, and to
choose freely
Generational
mind-shift 
?macro-democracy

12. 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

13. Democracy in my country… 2 stories!
• Story no. 2: The ‘stability’ story
George Bush Bill Clinton G. W. Bush Obama

14. • 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.