PAN AMERICAN HEALTH ORGANIZATIONBROWN BAG LUNCH, 11/27/12

LAURA GUIDRY-GRIMES, M.A.GEORGETOWN UNIVERSITY, PHILOSOPHY

PH.D. CANDIDATE

Medical Privacy and Confidentiality: Bioethical Perspectives and Regional

Challenges

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WHAT ARE THEY?WHY DO THEY MATTER?

Medical Privacy & Confidentiality

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Medical Privacy

Definition from Institute of Medicine:

“[The] concept of privacy is also context specific, and acquires a different meaning depending on

the stated reasons for the information being gathered, the intentions of the parties involved, as well as the politics, conventions and cultural

expectations” (pg. 76)

“Privacy is concerned with the collection, storage, and use of personal information, and

examines whether data can be collected in the first place, as well as the justifications, if

any, under which data collected for one purpose can be used for another (secondary)

purpose”

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Medical Privacy Types♦ Informational

(confidentiality, data security)

♦ Physical (bodily integrity, modesty)

♦ Associational (supports in decision-making, sharing within intimate relationships)

♦ Proprietary (protection of personal modifiers and genetic information)

♦ Decisional (autonomy)

A single breach in

privacy could have

ramifications for one or several of

these areas

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Medical Confidentiality

Definition from Institute of Medicine:

Information is shared voluntarily within a trusting relationship♦ Implicit or explicit assurance not to divulge under most

circumstances

As a subset of privacy concerns, confidentiality “addresses the issue of how to keep information exchanged in [an intimate]

relationship from being disclosed to third parties” (pg. 76)

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Why They Matter

Separation of public life and private life At least some control over types of relationships

and interactions we have♦ Ability to privilege some people with personal information

while excluding others Privacy necessary for basic freedoms Confidentiality necessary for trust between

persons and institutions Medical information is particularly sensitive♦ Breaches can easily result in discrimination, bias, stigma

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WHAT LEGAL PROTECTIONS ARE ARTICULATED FOR

PATIENTS?

Representative Laws in Latin America and the Caribbean

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Overview

Bolivia, Chile, Colombia, Venezuela, Mexico, Dominican Republic, and other countries in this region have carefully crafted legislation to address patients’ rights and privacy.

Laws highlight ethical underpinnings of right to privacy:♦ Respect for persons and human dignity♦ Free development of the person♦ Societal obligations to protect vulnerable

populations♦ Protections against discriminatory practices

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Original Spanish English Translation

El derecho a la intimidad o la privacidad, al ser inherente a otros derechos fundamentales como son el libre desarrollo de la personalidad y el derecho a la dignidad humana, goza de mecanismos de protección constitucional y legal; se entiende que la persona debe ser protegida de las molestias o angustias que le puedan ocasionar el que otros no respeten su intimidad, o busquen inmiscuirse en ella.

The right to intimacy or privacy, to be inherent to other fundamental rights such as the free development of the person and the right to human dignity, enjoys mechanisms of constitutional and legal protection; it means that the person must be protected from discomfort or distress that may be caused when others do not respect their privacy, or they seek to interfere in it.

Bolivian Constitutional Court (2004)

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Original Spanish English Translation

De los valores. El ejercicio de la profesión u ocupación se realizará teniendo en cuenta los siguientes valores: humanidad, dignidad, responsabilidad, prudencia y secreto, aplicándolos a sí mismo, a las otras personas, la comunidad, la profesión u ocupación, y las instituciones.[…]El secreto: Se debe mantener la confidencialidad, confiabilidad y credibilidad en el cumplimiento de los compromisos.

Of values. The exercise of the profession or occupation will take into account the following values: humanity, dignity, responsibility, prudence and secrecy, and applied himself to other people, the community, the profession or occupation, and institutions.[…]Secrecy: You must maintain confidentiality, reliability and credibility in fulfilling commitments.

Colombian Law: Enacting the Provisions of Human Resource in Health(2007)

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Original Spanish English TranslationTodas las personas tienen los siguientes derechos en relación a la salud: a) Al respeto a su personalidad, dignidad humana e intimidad, y a no ser discriminada por razones de etnia, edad, religión, condición social, política, sexo, estado legal, situación económica, limitaciones fisicas, intelectuales, sensoriales o cualquier otra; […] e) A la confidencialidad de toda la información relacionada con su expediente y con su estancia en instituciones prestadoras de servicios de salud pública o privada.

Everyone has the following rights related to health:a) Respect for their person, human dignity and privacy, and freedom from discrimination on grounds of ethnicity, age, religion, social status, politics, gender, legal status, economic status, physical limitations, intellectual, sensory or other; [...] e) The confidentiality of all information regarding your case and your stay in public health or private institutions.

Dominican Republic: Law of General Health (2001)

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WHAT IS DISTINCTIVE AND USEFUL ABOUT THIS

APPROACH?

Tools of Bioethics

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Distinction in Frameworks: Bioethics & Human Rights

Human rights articulate protections and entitlements that we all have merely in virtue of being human♦ Broad-based, broad-

spectrum coverage of basic needs for the decency and flourishing of individuals (in general) and peoples

♦ (Relatively) high bar for what counts as a human right otherwise, ‘human rights’ would become watered down and would not flag morally

urgent needs

Bioethics can address specifics within relationships and caveats of cases♦ Numerous, diverse, and

nuanced considerations

♦ Rich moral language to identify and evaluate numerous aspects of moral interests, obligations, claims, problems and dilemmas

♦ Reflection on case-by-case protections and entitlements that this patient/ subject/ medical professional has in this situation (as well as policy)

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Bioethical Import of Privacy & Confidentiality

Autonomy (duty to provide conditions necessary for uncoerced and authentic decision-making)♦ Enable individuals to determine the extent of what

information is disclosed to whom Nonmaleficence (duty not to harm)♦ Protect against discrimination, bias, stigma, loss of control

and boundaries Promoting responsible and socially beneficial medical

practices♦ Assurances of privacy can increase willingness to seek

medical treatment and participate in research

♦ Healthcare data should have fewer errors when patients are motivated to be open and truthful.

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When Bioethical Values Conflict

Duty to protect privacy and confidentiality unless respecting privacy will cause significant harm to the patient or to others:

Major Minor

High

Low

See Beauchamp & Childress, pg. 307

Magnitude of Harm

Prob

abilit

y o

f Har

m More permissible to override right to

privacy

Less permissible to override

right to privacy

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WHAT ADDITIONAL MEASURES AND SAFEGUARDS COULD BETTER PROTECT PATIENT

PRIVACY & CONFIDENTIALITY?

Recommendations

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Important First Steps

Supplement clinicians’ training with education on bioethical principles, prominent methods for handling dilemmas, picking out morally salient features of cases♦ Move away from language of mere compliance to regulations

Explore innovative ways to clearly and explicitly inform the public of their rights♦ Educational campaigns and easily accessible leaflets and posters

More concerted efforts to document the will of the patient during intake procedures♦ Minimize coercive pressures, identify potential surrogates, clarify

options throughout stay in clinic

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Further Safety Nets

Ethics committees♦ Enforce separation of powers within hospital to settle

issues related to privacy & confidentiality

♦ Need ethical training and clearly defined role Follow-up research on breaches in privacy and

confidentiality♦ Continually analyze and evaluate methods

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Discussion

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Questions to Consider

How should the moral claims to privacy and confidentiality be weighed against other interests, obligations, and values – especially given the resource limitations and cultural contexts of this area?

What additional measures and safeguards could feasibly, effectively, and responsibly protect patient privacy and confidentiality?

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Thank You!

You can contact Laura at lkg8@georgetown.eduto discuss these issues further or to receive a draft

of this paper.

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Acknowledgements

I am grateful to Carla Saenz in the Bioethics Office of GDR at PAHO for her

support and guidance in constructing this paper. I am also thankful to have been an

intern at PAHO during the summer of 2012.

Oscar Cabrera at the O’Neill Institute at Georgetown University also provided

helpful insights.

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References

Allen, Anita. “Privacy and Medicine.” The Stanford Encyclopedia of Philosophy (Spring 2011). Ed. Edward N. Zalta. Web.

Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics. 6th ed. New York: Oxford University Press, 2009.

Bolivian Constitutional Court. § III.1.1 The right to intimacy or privacy. 2004. Web.

Colombia. Law 1164. Enacting the Provisions of the Human Resource in Health. Chapter 6. Article 36. 2007. Web.

Dominican Republic. Law of General Health, No. 42-01. First Book. Chapter 4. Section 1. Article 28. 2001. Web.

Institute of Medicine. Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. Eds. Sharyl J. Nass, Laura A. Levit, and Lawrence O. Gostin. Committee on Health Research and the Privacy of Health Information. Washington, DC: National Academies Press, 2009. Web.