ETHICAL ISSUES: INFORMATION AND CONFIDENTIALITY
This article deals with the ethical issues that arise in the practice of occupational health activities, including occupational health research, with respect to the handling of information on individual employees, not in terms of practicality or efficiency but by referring to what may be regarded as right or wrong. It does not provide a universal formula for decisions on whether or not practices in handling information or in dealing with issues of confidentiality are ethically justified or defensible. It describes the cornerstone ethical principles of autonomy, beneficence, non-maleficence and equity and their implications for these human rights issues.
The basic principles used in ethical analyses can be used in examining the ethical implications in the generation, communication and utilization of other types of information as well as, for example, the conduct of occupational health research. Since this article is an overview, specific applications will not be discussed in great detail.
On the labour market, in an enterprise, or at a workplace, health issues involve, first and foremost, free-living and economically active people. They may be healthy or experience health disturbances which are, in their causation, manifestation and consequences, more or less related to work and workplace conditions. Furthermore, a broad range of professionals and persons with various roles and responsibilities may become involved in the health issues concerning individuals or groups at the workplace, such as:
· employers and their representatives
· trade unions and their representatives
· health professionals
· social security and insurance administrators
· media representatives.
Information arising in the practice or science of occupational health and the issues of need-to-know involve all these groups and their interaction. This means that the question of openness or confidentiality of information with regard to human rights, individual workers’ rights and the needs of employers or the needs of society at large is of broad scope. It may also be of high complexity. It is, in reality, an area of core importance in occupational health ethics.
The underlying assumption of this article is that people have a need and also a prima facie right to privacy. This means a need, and a right, to conceal and to reveal, to know as well as to be left in ignorance on various aspects of life in society and one’s own relations with the outer world. Likewise a collective, or a society, needs to know some things about individual citizens. With regard to other things there may be no such need. At the workplace or on the enterprise level, the issues of productivity and health involve the employer and those employed, both as a collective and as individuals. There are also situations where public interests are involved, represented by government agencies or other institutions claiming a legitimate need to know.
The question which immediately arises is how these needs are to be reconciled and what conditions should be satisfied before the needs to know of the enterprise or society can legitimately override the individual’s right to privacy. There are ethical conflicts needing to be resolved in this reconciliation process. If the needs to know of the enterprise or employer are not compatible with the needs to protect the privacy of the employees, a decision has to be made as to which need, or right to information, is paramount. The ethical conflict arises from the fact that the employer is usually responsible for taking preventive action against occupational health hazards. To exercise this responsibility the employer needs information on both working conditions and the health of the employees. The employees may wish some types of information about themselves to be kept confidential or secret, even while accepting the need for preventive measures.
The ethical issues and conflicts in the occupational health sphere may be approached using the two classical ethical paradigms-consequentialist ethics or deontological ethics. Consequentialist ethics focuses on what is good or bad, harmful or useful in its consequences. As an example, the social ambition expressed as the principle of maximizing benefits for the greatest number in a community is a reflection of consequentialist ethics. The distinctive feature of deontological ethics is to regard certain actions or human behaviour as obligatory, such as for example the principle of always telling the truth-the principle of veracity-regardless of its consequences. The deontologist holds moral principles to be absolute, and that they impose an absolute duty on us to obey them. Both these paradigms of basic moral philosophy, separately or in combination, may be used in ethical assessments of activities or behaviours of humans.
When discussing ethics in occupational health, the impact of ethical principles on human relationships and the questions of needs to know at the workplace, it is necessary to clarify the main underlying principles. These can be found in international human rights documents and in recommendations and guidelines stemming from decisions adopted by international organizations. They are also reflected in professional codes of ethics and conduct.
Both individual and social human rights play a role in health care. The right to life, the right to physical integrity, and the right to privacy are of particular relevance. These rights are included in:
· the 1948 Universal Declaration of Human Rights adopted by the United Nations
· the European Convention for the Protection of Human Rights and Fundamental Freedoms (Council of Europe 1950)
· the 1966 United Nations International Covenant on Civil and Political Rights
Of particular relevance for occupational health service personnel are the codes of conduct formulated and adopted by the World Medical Association. These are:
· International Code of Medical Ethics (1949-1968) and Declaration of Geneva (1948-1968)
· Declaration of Helsinki: Recommendation Guiding Medical Doctors in Biomedical Research Involving Human Subjects (1964-1975-1983)
Individual human rights are in principle unrelated to economic conditions. Their foundation lies in the right of self determination, which involves human autonomy as well as human liberty.
The principle of autonomy focuses on the individual’s right to self-determination. According to this principle all human beings have a moral obligation to respect the human right to self- determination so long as it does not infringe on the rights of others to determine their own actions on matters concerning themselves. One important consequence of this principle for the practice of occupational health is the moral duty to regard some types of information on individuals as confidential.
The second principle, the principle of care, is a combination of two ethical principles-the non-maleficence principle and the beneficence principle. The first prescribes a moral obligation for all humans not to cause human suffering. The beneficence principle is the duty to do good. It dictates that all humans are under a moral obligation to prevent and to eliminate suffering or harm and also to some extent to promote well-being. One practical consequence of this in the practice of occupational health is the obligation to seek in a systematic way to identify health risks at the workplace, or instances where health or life quality are disturbed as a result of workplace conditions, and to take preventive or remedial action wherever such risks or risk factors are found. The beneficence principle may also be evoked as a basis for occupational health research.
The principle of equity implies the moral obligation of all human beings to respect each other’s rights in an impartial way and to contribute to a distribution of burdens and benefits in such a way that the least privileged members of the community or the collective are given particular attention. The important practical consequences of this principle lie in the obligation to respect the right to self-determination of everyone concerned, with the implication that priority should be given to groups or individuals at the workplace or in the labour market who are most vulnerable or most exposed to health risks at the workplace.
In considering these three principles it is proper to re-emphasize that in the health services the autonomy principle has in the course of time largely superseded beneficence as the first principle of medical ethics. This in fact constitutes one of the most radical re-orientations in the long history of the Hippocratic tradition. The emergence of autonomy as a sociopolitical, legal and moral concept has profoundly influenced medical ethics. It has shifted the centre of decision-making from the physician to the patient and thereby re-oriented the whole physician-patient relationship in a revolutionary way. This trend has obvious implications for the whole field of occupational health. Within the health services and biomedical research it is related to a range of factors which have an impact on the labour market and industrial relations. Among these should be mentioned the attention given to participatory approaches involving workers in decision processes in many countries, the expansion and advance of public education, the emergence of civil rights movements of many types and the rapidly accelerating technological changes in production techniques and work organization.
These trends have supported the emergence of the concept of integrity as an important value, intimately related to autonomy. Integrity in its ethical meaning signifies the moral value of wholeness, constituting all human beings as persons and ends in themselves, independent in all functions and demanding respect for their dignity and moral value.
The concepts of autonomy and integrity are related in the sense that the integrity is expressing a fundamental value equivalent to the dignity of the human person. The concept of autonomy rather expresses the principle of freedom of action directed towards safeguarding and promoting this integrity. There is an important difference between these concepts in that the value of integrity admits no degrees. It may be either intact or violated or even lost. Autonomy has degrees and is variable. In that sense autonomy can be more or less restricted, or, conversely, expanded.
Privacy and Confidentiality
Respect for the privacy and confidentiality of persons follows from the principle of autonomy. Privacy may be invaded and confidentiality violated by revealing or releasing information that can be used to identify or expose a person to unwanted or even hostile reactions or responses from others. This means that there is a need to protect such information from being disseminated. On the other hand, in the event the information is essential to discover or prevent health risks at the workplace, there is a need to protect the health of individual employees and indeed sometimes the health of a larger collective of employees who are exposed to the same workplace risks.
It is important to examine whether the need to protect information on individuals and the need to protect the health of the employee collective and to improve working conditions are compatible. It is a question of weighing the needs of the individual versus the benefits of the collective. Conflicts may therefore arise between the principles of autonomy and beneficence, respectively. In such situations it is necessary to examine the questions of who should be authorized to know what and for what purposes.
It is important to explore both these aspects. If information derived from the individual employees could be used to improve working conditions for the benefit of the whole collective, there are good ethical reasons to examine the case in depth.
Procedures have to be found to deny unauthorized access to information and to use of the information for purposes other than those stated and agreed on in advance.
In an ethical analysis it is essential to proceed step by step in identifying, clarifying and solving ethical conflicts. As has been mentioned earlier, vested interests of various kinds, and of various actors at the workplace or in the labour market, can present themselves as ethical interests or stakeholders. The first elementary step is therefore to identify the main parties involved and to describe their rational interests and to locate potential and manifest conflicts of interests. It is an essential prerequisite that such conflicts of interests between the different stakeholders are made visible and are explained instead of being denied. It is also important to accept that such conflicts are quite common. In every ethical conflict there are one or several agents and one or several subjects concerned by the action undertaken by the agent or agents.
The second step is to identify the relevant ethical principles of autonomy, beneficence, non-maleficence and equity. The third step consists in identifying ethical advantages or benefits and costs or disadvantages for those persons or bodies who are involved in or affected by the problem or the occupational health issue. The expressions ethical gains or ethical costs are here given a rather broad meaning. Anything which may reasonably be judged to be beneficial or to have a positive impact from an ethical point of view is a gain. Anything which may affect the group in a negative way is in an analogous way an ethical cost.
These basic principles of ethics (autonomy, beneficence and equity) and associated steps of analysis apply both for handling of information in the day-to-day practice of professional occupational health work and for handling and communication of scientific information. Seen in this perspective, the confidentiality of medical records or results of occupational health research projects may be analysed on the principal grounds outlined above.
Such information may for instance concern suspected or potential health hazards at work, and it may be of varying quality and practical value. Obviously the use of such information involves ethical issues.
It is to be emphasized that this model for ethical analyses is intended primarily for structuring of a complex pattern of relationships involving the individual employee, the employees at the enterprise as a collective and vested interests at the workplace and in the community at large. Basically, in the present context, it is a pedagogic exercise. It is fundamentally based on the assumption, from some quarters regarded as controversial in moral philosophy, that the objective and correct solution in an ethical conflict simply does not exist. To cite Bertrand Russell:
(We) are ourselves the ultimate and irrefutable arbiters of values and in the world of value nature is only a part. Thus, in this world we are greater than Nature. In the world of values, nature itself is neutral, neither good nor bad, deser- ving neither admiration nor censure. It is we who create values and our desires which confer value. In this realm we are kings, and we debase kingship if we bow down to Na- ture. It is for us to determine the good life, not for Nature-not even nature personified as God (Russell 1979).
This is another way of saying that the authority of ethical principles, as referred to earlier in this text, is determined by the individual person or group of persons, who may or may not agree as to what is intellectually or emotionally acceptable.
This means that in solving ethical conflicts and problems the dialogue between the different interests involved assumes significant importance. It is essential to create a possibility for everyone concerned to exchange views with the others involved in mutual respect. If it is accepted as a fact of life that there are no objectively correct solutions for ethical conflicts, it does not follow that the definition of ethical positioning is entirely based on subjective and unprincipled thinking. It is important to keep in mind that issues related to confidentiality and integrity may be approached by various groups or individuals with points of departure based on widely differing norms and values. One of the important steps in an ethical analysis is therefore to design the procedure for contacts with and between the persons and collective interests concerned, and the steps to be taken to initiate the process ending in agreement or disagreement with respect to the handling or transfer of sensitive information.
Lastly, it is emphasized that ethical analysis is a tool for examination of practices and optional strategies of action. It does not provide blueprint answers to what is right or wrong, or to what is thought to be acceptable or not acceptable from an ethical point of view. It provides a framework for decisions in situations involving the basic ethical principles of autonomy, beneficence, maleficence and equity.
Ethics and Information in Occupational Health
The ethical questions and dilemmas arising in the practice and science of occupational health derive from the collection, storage, analyses and use of information about individual persons. Such processes may be carried out on a routine or ad hoc basis with the objective of improving the health and life quality of employees or the working conditions at the workplace. These are, in themselves, motives which are of fundamental importance in all occupational health work. The information may, however, also be used for selective practices, even of a discriminatory nature, if used for instance in hiring or making work assignments. Information collected from health records or personnel files has, therefore, in principle a potential to be used against the individual in a way which may be unacceptable or regarded as a violation of basic ethical principles.
The information may consist of data and recorded observations from pre-employment medical examinations or periodic screening or health monitoring programmes. Such programmes or routines are often initiated by the employer. They may also be motivated by legal requirements. It may also include information collected at medical consultations initiated by the person concerned. One data source of particular relevance in the occupational health field is the biological monitoring of workplace exposures.
In occupational health practice and in occupational health research many different types of data and observations are collected, documented and, to varying extents, eventually used. The information may concern past health conditions and health-related behaviours, such as absence due to sickness. It may also include observations of symptoms and findings at clinical examinations or results of laboratory examinations of many kinds. The latter type of information may concern functional capacity, muscle strength, physical stamina, cognitive or intellectual abilities, or it may include judgements of performance in various regards. The information may also contain, at the opposite end of the health spectrum, information on health deficiencies; handicaps; extremes of lifestyle; use of alcohol, drugs and other toxicants; and so on. Even if many single items of information of this kind are in themselves relatively trivial or innocuous, combinations of them and the continuous collection of them over time may provide a very detailed and comprehensive description of the characteristics of a person.
The information may be recorded and stored in various forms. Manual records are most common in files containing information on individual persons. Computer databases may also be used with information carriers such as magnetic tapes and floppy discs. Since the memory capacity of such computerized personnel files commonly is of huge dimensions, the databases constitute in themselves potential threats to personal integrity. The information in such data banks and registers and files may, in the hands of less scrupulous persons, constitute a tool of power, which may be used contrary to the interests of the person concerned.
It is beyond the scope of this article to define what type of information is sensitive and what is not. Nor is it the intention in this context to give an operational definition of the concept of personal integrity or to provide a blueprint for judgements on what information is to be regarded as more or less sensitive with respect to basic ethical principles. This is simply not possible. The sensitivity of information in this regard is contextually determined and dependent on many factors. The important consideration lies in applying basic ethical principles in dealing with questions of how, by whom and under what circumstances such data and information are handled.
Risk Analysis and Research Information
In explaining the principles of an ethical analysis the focus has been set on health information and health-related information in individual records such as health records and personnel files. There are, however, both in the practice and in the science of occupational health, other types of information which may, in their generation, processing and use, involve ethical considerations and even conflicts of ethical principles. Such information can, however, usually be analysed using the ethical principles of autonomy, beneficence and equity as points of departure. This applies, for example, in hazard assessments and risk analysis. In a situation where, for instance, relevant information on a health hazard at work is deliberately withheld from the employees, it is to be expected that ethical analysis will demonstrate clearly that all three basic ethical principles are violated. This applies regardless of whether or not the information is judged to be confidential by one of the stakeholding partners involved. The difficulty arises when the information involved is uncertain, insufficient or even inaccurate. Widely differing judgements may also be at hand concerning the strength of the evidence. This, however, does not alter the fundamental structure of the ethical issues involved.
In occupational health research it is quite common to have situations where information on past, present or future research projects is to be communicated to employees. If research is undertaken involving employees as research subjects without explaining the motives and full implications of the project and without seeking proper informed consent by everyone concerned, ethical analysis will demonstrate that the basic tenets of autonomy, beneficence and equity have been violated.
Obviously, the technical and complex nature of the subject matter may cause practical difficulties in the communication between researchers and others concerned. This, in itself, does not change the structuring of the analysis and the ethical issues involved.
There are various administrative safeguards which may be applied to protect sensitive information. Common methods are:
1. Secrecy and confidentiality. Contents of medical records and other items labelled as health information may be regarded as confidential or secret, in legal terms. It is to be observed though that not all contents of such documents are necessarily of a sensitive nature. They also contain items of information which could be communicated freely without causing harm to anyone.
Another aspect is the obligation imposed on members of selected professional groups to keep secret the information given them in confidence. This may be the case in consultations in the types of relationship which may be referred to as fiduciary. This may for instance apply to health information or other information dealt with in a physician-patient relationship. Such information may be protected in legislation, in collective-bargaining agreements or in professional codes.
It should, however, be observed that the concept of health information has-just as the concept of health-no practical operational definition. This means that the term may be given different interpretations.
2. Authorization for access to information. This requirement may for instance apply to researchers seeking information in health records or in social security files of individual citizens.
3. Informed consent as a condition for data collection and access to records containing information on individual persons. The principle of informed consent, implying right to co-decision by the person concerned, is a legally established practice in many countries in all questions regarding collection and access to personal information.
The principle of informed consent is being increasingly recognized as important in handling of personal information. It implies that the concerned subject has a prima facie right to decide what information is acceptable or permissible to be collected, for what purposes, by whom, by using what methods, on what conditions and with which administrative or technical safeguards against unauthorized or unwanted access.
4. Technical safeguards to protect computerized information. This may for instance concern introduction of coding and ciphering routines for prevention of unauthorized access to records containing information on persons or-if access is legitimate-prevention of identification of persons in the data base (protection of anonymity). It should however be observed that anonymity, meaning coding or concealment of name and other identity particulars, such as social security numbers, may not provide reliable protection against identification. The other information contained in the personal file may often be sufficient to allow individual persons to be identified.
5. Legal regulation, including prohibition, authorization and control for establishing and operating computerized data sources containing personnel files or records.
6. Professional ethical code. Principles of ethical standards in professional performance may be adopted by professional bodies and organizations in the form of codes of professional ethics. Such documents exist both on the national level in many countries and also on the international level. For further reference the following international documents are recommended:
· International Code of Ethics for Occupational Health Professionals, adopted by the International Commission on Occupational Health in 1992
· Ethical Guidelines, adopted by the International Epidemiological Association
· International Guidelines for Ethical Review of Epidemiological Studies, adopted by the Council for International Organizations of Medical Sciences (CIOMS)
In concluding this section it is appropriate to emphasize that an elementary principle in planning or establishing practices for data collection is to avoid collection of data without a carefully considered motive and occupational health relevance. The ethical hazards inherent in collecting information which is not utilized for the benefit, including health benefit, of the employee or person concerned, are obvious. In principle, the options and strategies at hand in planning for collection and processing of information on employees are amenable to ethical analyses in terms of autonomy, beneficence and equity.
Computerized Personnel Files
The development of computer technology has created possibilities for employers to collect, store and process information about employees on many diverse aspects relevant to their behaviour and functioning at the workplace. The use of such advanced computer systems has increased significantly during recent years and has led to concerns for the risks of intrusion into individual integrity. It is reasonable to predict that such risks will be still more common in the future. There will be a growing need to use data protection and various measures to guard against violations of integrity.
At the same time it is obvious that new technology brings significant benefits for production in an enterprise or in the public sector, as well as providing means to improve work organization or eliminate such problems as monotonous and short-cycled work tasks. The fundamental question is how to achieve reasonable balance between the benefits in the use of computer techniques and the legitimate rights and needs of the employees to be protected against intrusions into their personal integrity.
The Council of Europe has in 1981 adopted a recommendation (No. R 81-1) on medical databases and a convention on Protection of Individuals with Regard to Automatic Processing of Personal Data. The Council of the European Union has in a directive (95/46/EC)-On the Protection of Individuals with Regard to the Processing of Personal Data and on the Free Movement of such Data dealt with these issues. It should be observed that the implementation of such regulations on computerized personal data is in many countries regarded as issues of industrial relations.
Practical situations involving handling of information in occupational health involve judgements by occupational health professionals and many others. Questions regarding what is right or wrong, or more or less acceptable, arise in the practice of occupational health in many contextually and culturally differing circumstances. Ethical analysis is a tool providing the basis of judgements and decisions, by using ethical principles and sets of values to help evaluate and choose between different courses of action.