Global Bioethics and Global Epidemics: The Case of HIV Surveillance?
The History: Van Ransselaer Potter’s book “Bioethics: Bridge to Future” from 1970 was not only creation of a new discipline. It was an attempt to overcome disciplinary boundaries and build “bridge between two cultures”. Medical ethics focused only on new technologies, robots, organs, clinical techniques and medical procedures, was interesting and attractive discipline. Documents like UNESCO “Universal Declaration on Bioethics and Human Rights” are an attempt to overcome the growing gap between human rights, social equality, health law and implementation of new technologies. We are answering the new but old questions like “When does life begin, when does it end, when should it end”? But also new questions related to the increasing cost of medical care – “Who should receive a heart transplant, should medical resources be allocated on the basis of age”. It is an attempt to integrate bioethics with economy. “What should doctors tell and not tell patients, how much confidentiality should be protected by the doctor/patient relationship” was a step towards behavioral sciences. Emphasis on the principle of autonomy and individual responsibility, free and informed consent was initiated by a widespread movement to restore the centrality of individual rights.
The Global Bioethics: Disappointed by a predominant focus on individual and medical issues Van R. Potter introduced the new term “global bioethics,” meant to transcend ethics specialties from clinical settings. The transition from an individual to a more complex social and ecological approach calls for a reflection on the ethical principles involved. Can the criteria typically applied in bioethics also be considered valid for public health ethics? This wake-up question was partly triggered by the fact of emergence of AIDS in the 1980s. No condition has pushed us to think about how individual rights relate to public health more than HIV/AIDS because of the nature of the HIV epidemic and its linkage to sexual and drug-using behaviours These include sometimes vunerable groups of people like sex workers (SW), men who have sex with men (MSM, including gay men, transvestites, transsexuals, and bisexual men), and injecting drug users (IDU).
The Case of HIV/AIDS: To understand not only biological or epidemiological but also behavioral and social aspects of the HIV epidemic, national programes needed to understand the modes of transmission using social and behavioral data including relations to other infectious diseases/coinfections such as HIV/HAV, HIV/HBV, HIV/HCV. HIV surveillance is good tool and important technique to return focus from individual and maybe behavioral to social, cultural and ecological understanding to the “global bioethics”. It faces complexity while measuring the populations’ experiences with HIV epidemics in different cultures and regions of the world.
Learning outcomes: The UNAIDS/WHO working group prepared a publication about the ethical issues in HIV Surveillance and selected the following questions and ethical challenges to which students will be capable to answer after the lecture: “What role should individual consent and community approval play in surveillance activities? What right do individuals have to know that they have been the subject of public health surveillance? What circumstances justify surveillance measures that will intrude upon privacy? How ought the benefits of surveillance among those most at risk be balanced against the risk that such efforts will increase the social burden of those already marginalized? How should the confidentiality of data obtained be assured and, when the confidentiality of such data cannot be guaranteed, what ought to be the impact on surveillance activities? How can the ethical challenges posed by the duties to disseminate data be met? What lessons and insights can be drawn from the history of the ethical review of research for the potential role of ethical oversight of the practice of public health surveillance?”
- Henk A. M. J. ten Have. Potter’s Notion of Bioethics. Kennedy Institute of Ethics Journal . Volume 22, Number 1, March 2012 pp. 59-82 | 10.1353/ken.2012.0003.
- Amy L. Fairchild, Lance Gable, Lawrence O. Gostin, Ronald Bayer, Patricia Sweeney, Robert S. Janssen. Public Goods, Private Data: HIV and the History, Ethics, and Uses of Identifiable Public Health Information. Public Health Reports. 2007;122(Suppl1)715.PMCID: PMC1804110http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1804110/
- G.F. Pyle, S. Oreskovic, J. Begovac, C. Thompson. Hepatitis B and HIV/AIDS in Zagreb: a district level analysis. European Journal of Epidemiology. 02/2000; 16(10):927-36. DOI: 10.1023/A:1011010602831.
- UNAIDS, World Health Organization. Guiding principles of Ethical issues in HIV Surveillance. UNAIDS/WHO Working Group on Global HIV/AIDS and STI Surveillance. World Health Organization. 2013. ISBN 978 92 4 150559 http://apps.who.int/iris/bitstream/10665/90448/1/9789241505598_eng.pdf
- UNESCO. Universal Declaration on Bioethics and Human Rights. 19.10.2005. http://portal.unesco.org/en/ev.phpURL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html having productive and