Abstract
Epidemiology is an essential tool of public health, which largely relies on collection, collation, analysis and interpretation of data and actions based on the information gleaned from the data. Such data-intensive processes lead to unique ethical issues relating to autonomy of the data generator, privacy, confidentiality and justice. In this chapter, we attempt to describe the ethical issues in data handling in epidemiology using two examples, public health surveillance and Big Data analytics in digital epidemiology. One of the unique ethical issues that arises in public health surveillance is the difficulty in operationalizing autonomy, as any individual refusing to share surveillance data will compromise the effectiveness of the surveillance. The need to balance the benefits of health security with the risks of infringement into individual privacy and confidentiality lies as the undercurrent of the ethics of public health surveillance. Big Data analytics is becoming increasingly popular in public health. The rich variety of the data, while offering chances of multilevel, multivariate analysis of disease models, also raises concern of biases in data collection due to huge variations in the sources of the data. The high velocity of the data also throws open opportunities for rapid analysis and interventions to improve population health. The power of Big Data analytics needs to be harnessed with the important ethical principles of public health in mind.
The original version of this chapter was revised. A correction to this chapter is available at https://doi.org/10.1007/978-981-13-2450-5_11
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Change history
30 October 2018
The original version of Chapter 7 was inadvertently published with incorrect surname of the second author. The surname of the second author was presented incorrectly as Elang.
Notes
- 1.
The auxiliary nurse midwife is the backbone of the public health function in India. Her primary responsibilities include registering pregnancies, issuing antenatal card, performing antenatal visits and visiting the mother at her home, dispensing iron and folic acid tablets, giving her tetanus toxoid injections during pregnancy and motivating her for institutional delivery. She does home visits immediately after delivery, initiates breastfeeding, monitors the baby, immunizes the children till 2 years of age, advises on contraception and provides contraceptive methods to the eligible couple. In addition, she also maintains meticulous records of all the maternal and child health activities in numerous registers. She is also often required to perform additional duties like communicable and non-communicable disease prevention and control activities. She is in charge of a total population of 5000–10,000.
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Gopichandran, V., Elango, V. (2018). Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice. In: Mishra, A., Subbiah, K. (eds) Ethics in Public Health Practice in India. Springer, Singapore. https://doi.org/10.1007/978-981-13-2450-5_7
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