Guest post by Paul Carlin from South Eastern Health and Social Care Trust
Ethics – Moral principles that govern a person’s behaviour or the conducting of an activity (Oxford English Dictionary, 2017)
The use of anonymised large volume data raises interesting questions, such as, how is the data accrued, how is it stored, how is quality maintained and controlled, how is the analysis carried out, how is it validated, how, how, how? Lots of questions, and potentially lots of answers, but perhaps, the most important question is why do this, why look at these datasets in the first place?
Again lots of answers, usually articulated as involving benefits, benefit to society, benefit to the individual, benefit to the economy (Deloitte, 2013). Yet, surely the initial starting point should be, what ethical framework is to be used and how does that inform how this process is carried out. The core principle is one, which acknowledges the need to work within constraints, not necessarily limited to legislation and regulation. Although these set the tone, they will not necessarily fully define the ethical domain to which they pertain.
But surely, legislation and regulation are enough to control and impose a system of ethics? Perhaps if we existed within a static system, one that allowed no innovation or change, then yes legislation and regulation might work, but we don’t, change happens, and legislation and regulation are usually playing catch up. Wedded to this is the consistent drive to maximise gain, with some ideologies driving de-regulation and self-control as a mechanism for economic growth and innovation (Van Ciss, 1966) (Kroszner & Strahan, 2014).
Even when ethical systems are entrenched, culture, history, individual choice and professional perception can lead to unacceptable ethical breech.
The Tuskegee Syphilis Study, a study that charted the course of untreated latent syphilis, was begun in 1932, there were a total of 600 participants, 400 in the test arm and 200 as a control. The first paper relating to the study was published in 1936, with subsequent papers every 4 to 6 years, the study continued uninterrupted until 1972, when public outrage fuelled by details appearing in the popular press halted the study. At this time 74 of the test arm were alive, a minimum of 28 with perhaps a 100 subjects had died from advanced syphilitic lesions during the course of the study, as well as some partners becoming infected as a consequence. What caused the outcry? All participants were black males, specifically selected, penicillin an effective treatment for syphilis became widely available in the 1950’s, treatment was withheld, with the United States Public Health service (USPHS) articulating this formally on a number of occasions. Added to this, the Centre for Disease Control (CDC), endorsed the study in 1969 (Brandt, 1978).
In light of the Nuremberg trials (Doctors) which the US participated as prosecutor and judge, in 1946, which heard specific details about the medical experiments and Euthanasia programs carried out by the Nazi’s (United States Holocaust Memoria Museuml, 2017)one wonders at the hypocrisy of a nation conducting a study designed along racial lines, with overt bias in offer of effective treatment who ignored the lessons from World War 2.
A common justification for this type of behaviour is that the data is essential for a broader population need, i.e. the needs of the many outweigh the needs of the one. There is a lesson here for those wishing to us large volume data, in that, there must be thought given to the potential and actual ethical issues that could impact both the individual and society.
Brandt, A. M. (1978). Racism and Researc: The Case of the Tuskegee Syphilis Study. Hastings Center Report, 8(6), 21-29.
Deloitte. (2013). The Analytics Advantage: We’re just getting started. Deloitte Touche Tohmatsu Limited.
Kroszner, R. S., & Strahan, E. P. (2014). Chapter Title: RegulaƟon and DeregulaƟon of the U.S. BankingIndustry: Causes, Consequences, and Implications for the Future. In N. L. Rose, Economic Regulation and Its Reform: What Have We Learned? (pp. 485 -543). Chicago: University of Chicago Press.
Oxford English Dictionary. (2017, September 30). Ethics Definition. Retrieved September 30, 2017, from Oxford English Dictionary: https://en.oxforddictionaries.com/definition/ethics
United States Holocaust Memoria Museuml, a. (2017). THE DOCTORS TRIAL: THE MEDICAL CASE OF THE SUBSEQUENT NUREMBERG PROCEEDINGS. Retrieved September 30th, 2017, from United States Holocaust Memorial Museum: https://www.ushmm.org/information/exhibitions/online-exhibitions/special-focus/doctors-trial
Van Ciss, J. G. (1966). Regulation – By Government or Business. Harvard Business Review.