Generally speaking, the evolution of information technologies is giving rise to considerable repercussions on all levels: it is not only transforming society as a whole, but also organizations and institutions. It is also modifying all forms of social interaction, and even individuals. New challenges and conflicts have emerged.
According to technological determinism, NICT and Big Data are not neutral. They have an influence on their users; they condition them and modify their view of the world. An IS is mainly useful because of the relations that it creates: information is the symbol, the key and the condition of human interaction because it facilitate sex changes. Nevertheless, information can be a nuisance if it represents a vector of will to domination and becomes an obstacle to transparency. Technology and human in genuity always have a certain role in advance of legislation and human thinking. The gaps between NICT, legislation and ethics are growing ever larger. For this reason, information distributors must conform to certain ethical principles, values and virtues such as honesty, sincerity, veracity, reliability, equality and fairness, which requires equal distribution of informational resources for all citizens. In this context, data, information and knowledge necessitate an epistemological and ethical framework to produce decisive “practical wisdom” [RYA 07]. Thus, the challenge is to create conditions propitious for healthy interaction between moral, political and judicial standards, industrial strategies and protection of the healthcare users from potential deviations from the use of their own medical information by new technologies.
Computer technology in itself is not the problem. It is merely the automation of an existing, underlying process. It crystallizes and amplifies an existing problem like a revelation test. Its success heavily depends on the way in which it corresponds to clinical workflows, the way in which the technology is introduced into an organization, the quality of the information pertaining to training and support, and the motivation of the users and their use of the system [BER 99, POL 01]. Hence, it is important to clearly define the processes and establish a roadmap considering the possible deviances and detours in its use.
Proper use of NICT and big data requires a certain amount of maturity and savoir-vivre, which is contrary to the febrile anxiousness of certain neophytes. The culture of usages must accompany the implementation of these tools. This usage requires modesty, good sense, perseverant energy and a great deal of courage – because it is important to dare to take certain personal risks in order to advance the technology. Here, we see the classic precepts of the humanists in the Renaissance, namely taking time to reflect, sort and prune information; taking a step back to keep his or her own activity; and constructing overviews and techniques carefully. Frequently, these rules of simple good sense in the service of ethics of healthcare are swept aside in favor of the technicality of the IS. For this reason, these two totally opposing worlds – ethics and information technology – must learn to coexist.
The modeling of ethical behavior based on medical information represents a fundamental link between the digitization of the real world and the practical aspect of medicine. This “digitization”of ethics though does not mean that the techno-scientific system encompasses everything, including human freedom of thought, which would engender major problems of morality. Indeed, one of the major goals of our model is to provide a thought-support tool. This mathematical framework thus constitutes dynamic and changeable conditions conducive to free ethical reflection about medical information through the medium of NICT. As stressed by Galileo [GAL 00], “philosophy, written in the great book of the universe, is formulated in the language of mathematics. Without that language, it is humanly impossible to understand anything at all, and we can only stumble around in a darkened maze”. Therefore, our research offers readers a number of avenues for reflections designed to conceive, think, commission and use the IS from an ethical standpoint while considering the issues and fluctuations (political, strategic, technical, organizational, regulatory, relational or cultural) that such a system could cause. These avenues enable us to organize our ethical reflections about an IS from the time of its creation to its usage, via an ethical model based on the four universal ethical principles and on the “accepted contingence”.
Hence, this ethical model constitutes a tool for evaluating information systems in healthcare, which is based on a scoring device enabling us to translate and weight the technological requirements into ethical requirements and vice versa. The purpose here is to fit into a dynamic of evolution of the healthcare actors toward a socio-environmental quality of continuous improvements concerning these IS and medical Big Data.
In addition, in this book, we have laid the foundations of an ethical charter for the construction and implementation of an IS. The purpose of this is to facilitate medical informationin oncology. Beyond the simple satisfaction of technical or financial success, ethical questioning in IS projects can help evaluate the human and environmental success. This reflection was developed to ensure ethical practice and to defend the rights of patients in their relations with healthcare professionals in terms of all issues pertaining to medical information. Indeed, the actors who have access to that medical information will be likely to better know and apprehend the rules that govern that information and relate to the patients’ rights. The healthcare consumer and, more broadly, society in general, will become the final beneficiaries of the ethical practices and principles thus applied.
The main objective is to improve in terms of quality and efficiency the patients’ care. With this in mind, it is important to remove a series of barriers – structural, technological, and cultural – in order to fully make use of the potential offered by ICT.
In addition, the ethics of an IS, and more generally of a healthcare organization, may help it not only to have meaning but also to ensure longerterm survival. Thus, ethical practice is a tool of humanization that is used at all times and ultimately leads us to evaluate the transcendence and uniqueness of the doctor–patient–IS relationship. This ethical reflection is shared, and the values can be displayed and experienced differently from person to person. Certain goals may be common to several actors, and it allows men and women to work together in an organization with strong values. Hence, this reflection contributes to structure.
However, in the face of the requirement for ethics created by the vagaries of a new world, which are conditioned by NICT and, mainly, Big Data, we cannot avoid wondering about the counterweights, the corrections and regulations needing to be put in place. A priori, it seems absolutely crucial to have a set of rules in place. Such rules do not only pertain to a relational ethical problem but also to a technical necessity, which is essential so that a patient can form an opinion about the different possible options. As medicineis constantly evolving, we felt it important to revisit not only Hippocrates’ texts but also those of his successors, his translators and his commentators, from antiquity right up to the present day, in order to feel “the force of a train of thought resistant to facility and compromise, which is just as stringent in its restrictions as it is creative of ideas, knowledge, standards and behaviors” [SIC 11]. A model in itself! Ethics as a questioning process drives changes forward, enabling people and organizations to take the steps necessary for their own respective evolutions. Ideally based on efficiency and transparency, an IS must contribute to the germination of intelligence, in the context of pronounced human freedom. Is it not possible that this drive for transparency, in which the least confidentiality is rejected, will, in the long term, unwittingly turn against the patients’ interests, giving rise to a cold and dehumanized society in which the warmth and subtlety of human relations are no longer valued? We hope that our ethical reflection on the subject has contributed to preserving a place for confidentiality, and in particular, for trust – both of which are fundamental (particularly in the doctor–patient relationship). Without medical confidentiality, there can be no medicine. Such a remark leads us to wonder whether, under the auspices of defending patient intimacy, medical secrecy might not actually be the figure head for a terrifying medical paternalism that could arise in a new form.
As we have observed throughout the work, in addition to its individual dimension, medical decision-making has taken on an unavoidable collective aspect, and the ethical requirements have therefore become more complex. The ethical rules involved in “savoir-être” become more stringent in light of the technical pressure exerted by “savoir-faire” [GOM 01]. Therefore, it seems to be a matter of urgency to reintroduce the ethical aspects into initial medical and care training undergone by the users of such an IS, at the cost of uncomfortable questioning of the usefulness of techniques already developed and socially adopted as “norms”. By better mutual understanding of their respective disciplines, ethicists, jurists, sociologists, healthcare professionals and ICT experts can ensure that the IS of tomorrow will truly be respectful of, and will serve, the person in question. In the medium term, we are confident that our model will serve for the construction of an analysis table to help with the ethical labeling of IS in the field of healthcare.
Finally, the patient is at the crossroads between all these actors involved with the IS and Big Data. By nature, there is no collective responsibility; only individual responsibility. On the basis of this observation, we have the right to wonder whether it would not be better to give a greater degree of responsibility to the healthcare user himself or herself, by providing him or her with greater means, control and therefore power over the management of his or her own health? This will inevitably involve awareness-raising and education in the long term.