Medical Privacy and Confidentiality: Bioethical Perspectives and Regional Challenges

1. Medical Privacy and Confidentiality: Bioethical Perspectives and Regional Challenges Pan American Health Organization Brown Bag Lunch, 11/27/12 Laura Guidry-Grimes, M.A. Georgetown University, Philosophy Ph.D. Candidate

2. Medical Privacy & Confidentiality What Are They? Why Do They Matter? PAHO Brown Bag Lunch 11/27/12

3. Medical Privacy • Definition from Institute of Medicine: • “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” “[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) PAHO Brown Bag Lunch 11/27/12

4. 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 PAHO Brown Bag Lunch 11/27/12

5. 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) PAHO Brown Bag Lunch 11/27/12

6. 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 PAHO Brown Bag Lunch 11/27/12

7. Representative Laws in Latin America and the Caribbean What Legal Protections Are Articulated for Patients? PAHO Brown Bag Lunch 11/27/12

8. 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 PAHO Brown Bag Lunch 11/27/12

9. Bolivian Constitutional Court (2004) Original Spanish English Translation PAHO Brown Bag Lunch 11/27/12 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.

10. Colombian Law: Enacting the Provisions of Human Resource in Health(2007) Original Spanish English Translation PAHO Brown Bag Lunch 11/27/12 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.

11. Dominican Republic: Law of General Health (2001) Original Spanish English Translation PAHO Brown Bag Lunch 11/27/12 Todas 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.

12. Tools of Bioethics What Is Distinctive and Useful about This Approach? PAHO Brown Bag Lunch 11/27/12

13. 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) PAHO Brown Bag Lunch 11/27/12

14. 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. PAHO Brown Bag Lunch 11/27/12

15. When Bioethical Values Conflict • Duty to protect privacy and confidentiality unless respecting privacy will cause significant harm to the patient or to others: Magnitude of Harm More permissible to override right to privacy Probability of Harm Less permissible to override right to privacy See Beauchamp & Childress, pg. 307 PAHO Brown Bag Lunch 11/27/12

16. Recommendations What Additional Measures and Safeguards Could Better Protect Patient Privacy & Confidentiality? PAHO Brown Bag Lunch 11/27/12

17. 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 PAHO Brown Bag Lunch 11/27/12

18. 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 PAHO Brown Bag Lunch 11/27/12

19. Discussion PAHO Brown Bag Lunch 11/27/12

20. 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? PAHO Brown Bag Lunch 11/27/12

21. Thank You! You can contact Laura at lkg8@georgetown.edu to discuss these issues further or to receive a draft of this paper. PAHO Brown Bag Lunch 11/27/12

22. 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. PAHO Brown Bag Lunch 11/27/12

23. 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. • BolivianConstitutionalCourt. § III.1.1 Therighttointimacyorprivacy. 2004. Web. • Colombia. Law 1164. EnactingtheProvisions of theHumanResource in Health. Chapter 6. Article 36. 2007. Web. • DominicanRepublic. Law of General Health, No. 42-01. FirstBook. 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. PAHO Brown Bag Lunch 11/27/12