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Ethics & Rights as a meaningful relationship:
6th Annual A. David Kline Symposium
on Public Philosophy: Exploring the Synergy between Pediatric Bio Ethics and Child Rights
March 6th, 2014 In Collaboration With:
University of Florida College of Medicine-Jacksonville
Florida Blue Center of Ethics College of Arts and Sciences
A Latin America view
Irene Melamed MD, MSc.
Pediatric and
Adolescent Care
Pillars of the presentation
Briefly describe the history of bioethics.
Analyze Latin America’s view and its context.
Share some concerns, challenges and ideas.
Recognize the importance of building bridges between ethics & rights.
Bioethics: History
Latin America: Bioethics is a boom in the region: Frequent conferences, Master Degree Programs. Coexistence of a secular and a religious approach. Emerging local biomedical laws recognize health as a human right.
US: Bioethics perspectives of the law, medicine, public policy, philosophy, sociology and anthropology.
A Latin American View ?
The South.
Developing countries.
Non industrialized countries.
Latin America.
A Latin America view: The Context
A Latin America view: The Context
Bioethics is rooted in reality.
Specific regions and cultures perspectives.
Ethical issues: health technologies/lack of access.
Approaches to vulnerability: a broader concept (Florencia Luna, layers vs labels*) address people’s situation (impoverishment, helplessness, oppression).
Failure to approach the social determinants of health.
* Luna F. Elucidating the concept of vulnerability. Layers not labels. IJFAB. 2009; 2(1):121-135
The Context
Heterogeneity.
Great variety in size and natural resources.
Composition of their populations is quite different.
Ethnic, cultural, historical and social diversity.
Social class and power inequalities.
Coexistence of wealth and pervasive poverty.
High-grade healthcare vs lack of basic public
services (no drinking water and sewer
system).
Health sector: Fragmentation and
Segmentation.
The Context: Common features
Health Sector
Health Sector
"… Equity is an Ethical Imperative …”
Halfdan Malher
Buenos Aires, Argentina 2007
Rights-based Equity Policies
Child Health
Margaret Whitehead; Göran Dahlgren Concepts and principles for tackling social inequities in health: Levelling up Part 1
Child Health
Worse off
Better off
Child Health
Child Health
Worse off
Better off
Ch
ild
Healt
h im
pro
vem
en
t
… in this regard
Need to construct a moral/rights language
Build bridges between ethics and rights.
to fit the reality of
multiculturalism and diversity.
The “rights” language
Used in different but overlapping ways.
Set of entitlements under international laws.
Aspirational or rhetorical qualities.
Gostin Lawrence O. PUBLIC HEALTH ETHICS: TRADITION, PROFESSION, AND VALUES. Acta bioeth. [revista en la Internet]. 2003 [citado 2014 Feb 22] ; 9( 2 ): 177-188. Disponible en: http://www.scielo.cl/scielo.php?script=sci_arttext&pid=S1726-
569X2003000200004&lng=es. http://dx.doi.org/10.4067/S1726-569X2003000200004
When “rights” language is invoked to
Convey the fundamental importance of the claim.
“Rights” symbol reverence and respect.
Adhering to certain standards or services by the
government.
Gostin Lawrence O. PUBLIC HEALTH ETHICS: TRADITION, PROFESSION, AND VALUES. Acta bioeth. [revista en la Internet]. 2003 [citado 2014 Feb 22] ; 9( 2 ): 177-188. Disponible en: http://www.scielo.cl/scielo.php?script=sci_arttext&pid=S1726-
569X2003000200004&lng=es. http://dx.doi.org/10.4067/S1726-569X2003000200004
Pillars of the presentation
Briefly describe the history of bioethics.
Analyze Latin America’s view and its context.
Share some concerns, challenges and ideas.
Recognize the importance of building bridges between ethics & rights.
Is this effort an attempt to build strong connections between moral values and rights?
Is this link ethics & rights source of additional commitment and enforceability?
There is a clear need to incorporate the “rights” perspective on child health care daily issues…
Is this approach a good starting point?
Bridges between Ethics & Rights
Ethics & Rights Common Aspects
Subjective construct it is hard to conceptualize.
Valued and respected.
Importance not only of “having rights” but also its perception.
Legal frameworks in both cases are in need of an ethical interpretation.
* Required
#1. 5/8 Neither disagree or agree International Declarations on Human Rights, such as the CRC do not consider, in particularly, medical bioethic principles. (2/8 Disagree, 1/8 Agree)
#2. 3/8 Neither disagree or agree Medical bioethics has its own standards and they seldom mention or refer to either Rights of the Child’s principles and/or to the Convention text. (2 Disagree, 1/8 Do not know, 2/8 Agree)
#3. 7/8 There are many connections between the Medical Bioethic principles and those of the International Convention on the Rights of the Child. (1/8 Do not know)
Answers
Answers
#4. 7/8 As a member of a Clinical Ethics Committee or Pediatric Research Ethics Committee, do you think you apply the Right of the Child’s perspective when conducting the analysis and/or ethical review? “It is possible I do”. (1/8 If I do, it would be imperceptibly)
#7. 5/8 Absolutely Establishing a strong connection between Bioethics and Rights’ perspectives will give the latter more legitimacy an enforceability. (2/8 I do not think so, 1/8 “I think that Rights’ perspective is more relevant as the mandate to Rights fulfillment”)
#8. Professional background Philosophy:1 Health Sciences:8 Law Other Acknowledgments to the colleagues from FLACEIS that kindly answer the questions.
In summary: Bridges between Ethics & Rights
Avoid options White and Black
…contribute Gray area
to understand the reality.
… The gray area
• What is the gray area?
• Complexity due to the number of variables involved.
• Dilemma: pros and cons of both options.
• Where are the limits and/or frontiers of the gray area*?
*Dominic Wilkinson, Shedding Light on the Gray Zone, 6th Annual Pediatric Bioethics Conference, Seattle, 2010
… Gray areas Dominic Wilkinson, Nuffield Medical Research
Shedding Light on the Gray Zone, 6th Annual Pediatric Bioethics Conference, Seattle, 2010
0
0
0
Challenges/Ideas
1. Moral Value of Actions
Vulnerability
Act
ion
s
Ethics of Omissions
2. Integrating paradigms for moral reasoning
Morality of rights
Morality of care takes care of others (real world conflicts & contexts).
Deepen the ethical discussion.
Produce more nuanced strategies.
Identify and reinforce a more responsive professional
viewpoint to health disparities and changing needs.
3. Challenges/Ideas
Mainstream the ethics/rights perspective.
Pose new questions:
Which are the rights that are not acknowledged?
Which are the ethical principles that are not visualized?
How do I gather evidence that allows a better understanding of the children’s best interest?
4. Challenges/Ideas
Clarifying Myths:
The speech of rights is associated in the wrong way with that of responsibility.
Children’s rights ARE NOT consequent to the exercise of responsibilities. The responsibilities are being gradually
acquired while they develop greater abilities. (Article 5, 12, CRC)
5. Challenges/Ideas
(1) María Casado, Observatory of Bioethics, University of Barcelona
To bring to the debate the flexible and pluralist (1)
Bioethics.
Reduce gaps between words and actions (Implementation research)
Ethics committees?
Are they fulfilling the duties expected from them?
To conclude ...
Acknowledging the stories, the wills, the contexts…
…to enlighten the “gray area”
Ethics & Rights
