2.3 AMR surveillance and the ethics of privacy and confidentiality
Protecting the privacy and confidentiality of the personal information of the patient or individual participating in research is an important ethical consideration. Central databases that hold large amounts of personal data carry the risk of privacy violation. This is especially the case as more institutions embrace ‘big data’ technologies in healthcare. The use of
Public health programmes can complicate the privacy of patient records. Ethical principles such as the right to privacy may conflict with the need to rapidly share
In surveillance, ethical lines can be blurred. Individuals have the right to expect that their information will not be shared or used other than directly for their care, but this may be overridden in the interests of the broader population.
Ethical guidance on the use of big data in healthcare is sparse. The WHO is leading an international effort to develop ethical guidance on the use of big data in public health, although guidelines are yet to be published (WHO, 2017b).
Activity 8: What would you do regarding historical blood specimens from patients?
Imagine you are a researcher investigating resistance profiles in bacterial species commonly found in bloodstream infections. You work in a hospital and have access to the pathology laboratory, where many blood specimens from affected patients over the past five years are stored. Would you access the patient records and stored blood specimens without first seeking permission from the individuals?
Discussion
In justifying whether to use the blood specimen, did you consider everything you have so far learned in the module about the ethics of healthcare and medical research, the medical code of ethics, and the Declaration of Helsinki? You have learned that informed consent is an important aspect of research on human subjects, and that individuals have a right to privacy.
However, in some cases, routinely collected data can be used for research without seeking individual consent, especially when the research is of high public health importance. Many hospitals and research institutions will have ethical frameworks to help researchers determine whether they need patient consent before accessing the stored specimens and patient records.
2.2 Global impacts of AMR
