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

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