Patient privacy and economic interests: raising issues in Health Telematics

AUTHOR
Velia Mauro

ABSTRACT

Information and communication technologies are becoming increasingly important in health care, by helping to make accurate information more easily available to medical operators and improving the quality and lower the costs. The European Commission is supporting research projects for the development of telemedicine applications. One of these is MediMedia, intended to provide a common access to the various databases containing medical images and created by the existing projects within the 4th Framwork programme for Health Telematics. The use of Internet, through which clinical database are accessable, promotes, more than ever, the widespread dissemination of health-related information and strengthen the necessity to safeguard the patient right to privacy and data security. Protection of patient privacy is a long-standing issue in health care. Since the fourth century B.C., physicians have abided by the oath of Hippocrates, binding them to keep secret the information they learn from patients during the course of providing care. The growing use of information technology, within the health care sector, entails substantial changes in the management of the traditional patient-medical staff relationship. In the process of patient data flow, the interactions among the commonly known medical operators (physicians, nurses, technicians) are now widen to other participants of the health care management: administrative personnel, insurers, researchers and others. Besides the growing number of partecipants, the prospect of storing health information in electronic form raises concerns about:

  • patient privacy
  • economic interests

Both issues are based on the assumption that the access to health information, even if tried to be kept limited by the use of advanced technical mechanisms, is now widen to a great number of “users”.

This paper is intended to focus on those issues. The issue of privacy that information systems developers, handling with health information, have to face with are based on two considerations. The first is that individuals have a fundamental right to control the dissemination and use of information about themselves. Because privacy is a fundamental right, other organizations, that may wish to make claims on such information, should be obliged to respect the wishes of the individual and to obtain explicit authorization from the individual for each instance of information collection, processing, or further disclosure. In this context, the paper will enphasize the need for the consent of the person subject in various circumstances, with a particular reference to the one concerning research aims, governed by Directive 95/46/EC. The second concern is that information about an individual, revealed to some other party, not willingly designated by the individual, may be used to harm his or her interest. These interests may include economic interests.

The issue of economic implications is based on the consideration that the availability of a service by a telemedicine provider, as the rapid consultation of medical images provided by MediMedia, will raise a real “publishing business”. It is due to the considerable investments needed for the project exploitation in the market, and the perspective of a wide use, especially if the service is offered over Internet. In this context, in this paper will be carried out an analysis of the economic interests in perspective, with the ethical issues needed to limit the speculation on the publication of medical data.

Activity Report of IIS E-Commerce and Digital-Cash Committee

AUTHOR
Kanta Matsuura and Hideki Imai

ABSTRACT

The University of Tokyo has ten faculties and twelve institutes. Among them, Institute of Industrial Science (IIS) constantly explores to enhance its creative interactions with industry. In order to promote the interaction activities, the Foundation for the Promotion of Industrial Science (FPIS) was found in 1952. FPIS is supported by prominent scientists and engineers in representative industrial companies. In comparison with committees or forums directly under Japanese national universities, those under FPIS can provide more flexible joint activities between academic and commercial people.

As a project committee under FPIS, we started “IIS E-Commerce and Digital-Cash Committee (ECODIC)” in April, 1998. ECODIC is a unique academic-commercial joint forum and has piled up its first-year activities to produce an annual report. Our paper will first summarize these activities in a comprehensive way. We can find there a wide range of topics: example/ experience reports, legal aspects, political issues, specific technologies, and system evaluation/survey. Outline of monthly meetings will tell a lot. The invited speakers of the meetings were not only from software/hardware companies but also from the central bank, law offices, insurance companies, and so on. University professors gave excellent surveys and taxonomy.

The evaluation of the meetings would be given by averaging the percentage of attendance; approximately 80% for the first ten meetings. This suggests the committee members’ high interest in ECODIC activities. How to organize them will be also briefly introduced. One tip is NOT to restrict the presenters to senior researchers or business managers. Graduate students can give an excellent talk and actually two students contributed a lot to ECODIC activities of the first year. Another tip is observer assignment; the organizers allowed some of the invited speakers to participate not only in the ECODIC meeting where they gave a talk but also in the following ECODIC meetings. This system was not official but contributed to the activities via discussion of high quality and announcement to different communities.

The paper will then continue to focus on ethical issues discussed in the meetings. Aside from technological issues, the most difficult problem in general is on privacy of consumers. Since we have no final solution now, we did not list the term “privacy” in the glossary attached to the ECODIC annual report. The glossary lists 78 terms up. We hope that this will make a bridge among electronic-commerce people including manufacturers, software vendors, network engineers, bankers, lawyers, politicians, and consumers or users. The bridge would contribute to further discussion on ethical issues in electronic-commerce and digital-cash industry.

Payment system is an infrastructure related with both business and private life. Ethics is clearly a global subject of concern especially when we consider electronic-commerce and digital-cash systems. IT, ethics, and infrastructure in the future of the Information Society — ECODIC activities can provide a good seed for discussion in various perspectives; Work, Home and Leisure, and Regulation are of course included.

Normative aspects and responsibilities into the Virtual Enterprise model

AUTHOR
Antonio Marturano, Nicola Marturano and Roberto Tononi

ABSTRACT

In Italy, on national and EU funding, ENEA has launched Project ICIV (Concurrent Engineering for the Virtual Enterprise) to set up service centers for Small and Medium Enterprises (SME’s). These centers will be promoting aggregations of SME’s based on a Virtual Enterprise model, i.e. an organizational architecture and a set of operational mechanisms devised and tested within Project ICIV; in addition, the centers will be providing technological services in order for the grouped SME’s to implement concurrent engineering practices.

The Virtual Enterprise (VE) model applies to co-operations of firms which have their activities mainly in the field of complex goods and service productions. Within the aggregation, a firm performs the coordination function (called Control Unit), other firms have technical roles, such as the management of the information system, but most of the grouped enterprises are engaged in productive activities and may join or leave the VE depending on the current productive needs.

This paper analyses:

  • the normative definition of the VE; particularly when the VE is placed in the international context;
  • the responsibilities and ethical problems into the VE and customer relationship;
  • the responsibilities and ethical problems within VE partners and between these and the Control Unit.

The paper will expands on the solutions proposed within Project ICIV:

  1. a reference architecture of the aggregation of SME’s is described;
  2. an ethical and legal framework for civil, penal, financial and administrative responsibilities;
  3. an analysis of Intellectual Property Rights problems emerging from the relationship within all VE members.

Finally, the paper wraps up with a brief mention to some practical applications and case studies being foreseen in Italy.

Regulating Cyberspace – from a Kelsenian point of view

AUTHOR
Antonio Marturano

ABSTRACT

The actual problem of the regulation of the Internet is pretty similar to which Kelsen has faced when he studied the philosophical rooths of the International Law. In fact, International Law shares several features with the proposed cyberspace regulamentations and also it has analogies with the “ontology” of the cyberspace. Kelsen proposed an ethical (i.e. a non-juridical) background for the International Law. In fact, Kelsen compared it to a primitive juridical system within no coercions and no legal boundaries (strictly speaking) are present in it. For these reasons Kelsen argued International Law is like an ethical system.

The aim of this paper is to explain the reasons because exist an analogy between the International Law and the Internet. Secondly, to analyze Kelsen’s proposal and to understand if Kelsen’s suggestions hold good as a framework for the Cyberspace regulation. Thirdly, I will argue that Kelsen’s proposal is pretty similar to some liberal and autoregulamentative views for the governance of the Internet.

Terrorism and Civil Disobedience: Towards an International Ethic of Hacktivism

AUTHOR
Mark Manion and Abby Goodrum

ABSTRACT

The latest form of cyber warfare unites the talents of the computer hacker with the social consciousness of the political activist. Adapting a variation of civil disobedience, with its practices of “trespass” and “blockade” to the electronic age, millions of individuals can participate in virtual sit-ins without leaving the comfort of their computer terminals. Participants in electronic civil disobedience can attack the Web sites of any individual, corporation, or nation that is deemed responsible for oppressing the ethical, social, or political rights of others.

Hactivist groups such as the Electronic Disturbance Theater, the Cult of the Dead Cow, and the Hong Kong Blondes, among others, have used electronic civil disobedience to help advance the Zapatista rebellion in Mexico, protest nuclear testing at India’s Bhabba Atomic Research Center, attack Indonesian Government websites over the continued hostile occupation of East Timor, as well as protest the anti-democratic crackdown in China. In addition, hacktivism has been used to inveigh against the corporate domination of telecommunications and mass media, the rapid expansion of dataveillance, and the hegemonic intrusion of the “consumer culture” into the private lives of average citizens.

In fact, the advent of hacktivism may very well mark a critical threshold which could, with the aid of the new computer technologies, lead, on the one hand, to the rapid expansion of individual freedoms and the breaking of barriers to participatory democracy. Hence, hacktivism could play an active and constructive role in the overcoming of political injustice, to educate, inform and be a genuine agent of positive political and social change. On the on the other hand, there is the fear that cyber-activism could reduce to simply a more sophisticated and organized form of computer “cracking,” the breaking into sites for kicks or cash, or, even more disconcerting, to more radical and violent forms of cyber-terrorism. In any event, researchers concerned with ethical issues in computing, policy makers, and computer professionals must come to terms with the complex set of issues surrounding the potential power of hacktivism.

Through an investigation of hacktivism from an international perspective, this paper identifies and discusses four core issues in our understanding of computerization and its potential for advancing social justice around the world. Four proposals in defense of an ethic of hacktivism are developed in light of these issues. The first is that hacktivism, in its advocacy of civil disobedience, demonstrates the necessary relationship between ethics and politics. Second, establishing the validity of grass-roots activism reinforces the potential of computerization for civic empowerment. Third, the debate over control of intellectual property demands that we address issues of social justice such as wealth distribution and equality of opportunity. Fourth, hacktivism, with its focus on pluralism, relativism, and pubic control of information and technology, reinforces and legitimates a “social constructivist” reading of (future) technological progress.

Educating Information Professionals: A Comparative Approach to Codes of Ethics

AUTHOR
Cheryl Knott Malone

ABSTRACT

This paper will analyze the implications of having several ethical codes operating in an evolving system of library and information science (LIS) professions and suggest a comparative approach for introducing graduate students to the sometimes conflicting ethical expectations they will face as information professionals.

Master’s degree programs in LIS prepare students to work as professionals in public and private libraries, archives, museums, knowledge management divisions of corporations, and other information settings. The ethical issues LIS graduates confront as information professionals are rooted in their responsibilities to their employers, their clientele, their profession, to themselves and to the society in which they live. But those issues are complicated by the competitive terrain of the information professions in an era characterized by ever-evolving communications and information technologies.

The mutability of librarianship and of the information professions in general poses problems for LIS faculty. As preparation for students’ entry into the unwieldy information sector, the educational process involves challenging students to examine stereotypes, assumptions, and expectations about the vocation they think they have chosen. It also requires at least an introduction to ethically responsible professional behavior. One of the functions of professional schools is to socialize students, to introduce to them the values and practices that characterize people in the profession. But the LIS professions manifest values and practices that change as the occupations and the people in them change. The situation confounds the presentation of ethics in the LIS curriculum. It is perhaps not surprising that the American Library Association’s Committee on Professional Ethics tried to create a syllabus for a course in LIS ethics but gave up on the grounds that “the subject is too all-encompassing.”

According to Mark Alfino and Linda Pierce, “. . . the process of articulating professional values reveals professional identity. . . .” A parallel assertion would hold that a useful method for beginning to socialize students into LIS would be to introduce them to the professional code. A typical teaching tactic in professional schools relies on introducing and explicating the profession’s recognized code of ethics, often through the mechanism of case studies. In LIS, however, no single code can convey the ethical expectations of the LIS professions. To learn about professional identities, students need to learn about the variety of ethical codes that apply in the various LIS fields. Such an approach can reveal how the different fields within LIS delimit their domains and express their similarities and differences through their claims on ethical practice. In the process, students also learn about the behavior that will be expected of them as professionals in their own chosen specialties. The resulting reflection on the moral roles of professionals as professionals can shape not only the ways in which LIS graduates go about their business but also the ways in which they understand the business of LIS. Such an approach also can help students and new professionals comprehend the ethical standpoints from which their mentors give advice. An exploration of ethical codes representing the belief systems that the information specialties endorse thus can help students begin to appreciate the sometimes subtle distinctions among the LIS subfields while at the same time surveying the professional conduct expected of practitioners within those subfields. To address the issues involved in educating information professionals for a deeper understanding of ethics and identity, this paper will compare various professional codes of ethics adopted by different LIS associations. Further, the paper will report on the implementation and evaluation of an assignment requiring students in a required graduate course on information, libraries, and society to compare the ethical codes of different LIS associations.