Rogeer Hoedemaekers

Justice and solidarity in priority setting in health care.

During the last decade a “technical” approach has become increasingly influential in health care priority setting. The various country reports illustrate, however, that non-technical considerations cannot be avoided. As they often remain implicit in health care package decisions, this paper aims to make these normative judgements an explicit part of the procedure. More specifically, it aims to integrate different models of distributive justice as well as the principle of solidarity in four different phases of a decision-making procedure, and to identify important moral choices which present themselves. First four important justice models are discussed, then a justification is given for their inclusion in a four-step decision making procedure. This is followed by a discussion of different justice and solidarity problems—with their inherent conceptual difficulties in each of these stages. The paper concludes with a summary of the major moral choices that are to be made in health care package decisions.

Key Concepts in Health Care Priority Setting

In decisions about inclusion (or exclusion) of health care services in the benefit package, different interpretations of notions like health, health risk, disease, quality of life or necessary care often remain implicit. Yet they can lead to different benefit package decisions. After a brief discussion of these concepts in definitions of the goals of medicine, the various value-judgements implicit in interpretations of key notions in health care are analysed and conclusions are drawn with regard to the composition of decision making bodies at various levels. It is further argued that such a body needs to discuss the various interpretations of key-notions explicitly in the various phases of a priority-setting procedure so that more consistent choices can be made in health care priority setting.

Genetic screening: a comparative analysis of three recent reports.

Three recent reports on genetic screening published in the United Kingdom, Denmark and the Netherlands are discussed. Comparison of the Dutch report with the Danish and the Nuffield reports reveals that the Dutch report focuses on the aim of enlarging the scope for action, emphasising protection of autonomy and self-determination of the screenee more than the other two reports. The three reports have in common that the main concern is with concrete issue such as stigmatisation, discrimination, protection of the private sphere and issues linked with labour and insurance. Some potential long term consequences, however, tend to be neglected or underestimated. These omissions are pointed out.

Problematic Notions in Dutch Health Care Package Decisions

This paper discusses the problematic and sometimes implicit nature of some central notions and criteria used in debates about inclusion (or exclusion) of health care services in the health care benefit package. An analysis of discussions about four health care services—lungtransplantation, statins, (sildenafil (viagra) and rivastigmine—illustrates a case-by-case approach and inconsistent use of criteria, which present a challenge to develop a decision-making procedure in which important criteria or central notions can be discussed explicitly.

Introduction: Towards Better Integration of Normative Judgements in Health Care Package Decisions

In many countries attempts have been made to limit the rapidly increasing costs of health care through reduction of the health care benefit package, reduction of hospital budgets or patient selection. For this purpose committees have been formed and procedures have been developed in many European countries. Also in the Netherlands various proposals were made to reduce health care costs, but determination of what should be excluded from the basic health care package proved to be politically difficult. Therefore major changes were delayed. Instead, a policy of small scale changes was adopted. During the last ten years Health Technology Assessments have become increasingly influential in health care package decisions. Choices began to be based on “hard evidence,” “technical” criteria like effectiveness and cost-effectiveness of health care services. Scarcity of health care resources also led to wide support for the utilitarian principle of value for money. At the same time awareness has grown that implicit normative judgements are often hidden in technical criteria. They are seldom discussed explicitly at health policy level, however. Currently insight is growing that “technical” criteria alone cannot be decisive. Explicit normative considerations of justice and solidarity as well as normative judgements implicit in interpretations of concepts like health, disease, disease burden and quality of life also have an influence on the final decision. Their role and influence often remains hidden or unclear, however. Conscious of the need for better understanding of the manner in which actual choices are being made and better understanding of the often implicit normative judgements in actual package decisions, the Netherlands Organisation for Health Research and Development, (ZonMw) which funds policyand practice-oriented health research, started a research programme “Choices in Health Care,” which aimed to analyse actual priority setting procedures. In one of the research programmes implicit and explicit normative judgements were the exclusive subject of research. In this research project, titled “Necessity and accessibility of four health care services in international perspective; a normative-ethical analysis,” the

Is There a Unique Moral Status of Human DNA That Prevents Patenting

The gene patenting debate, which proved to be a focal point for divergent moral concerns about recent developments in genome research and biotechnology, has revealed that the moral status of DNA is not clear. One of the arguments used to stop undesirable developments was that DNA possesses a unique status, which renders it unfit for patenting. This paper investigates the allegedly unique (moral) status of genetic material and the information it holds from different perspectives. Several properties of DNA prove to be unique. We examine the relevance of these for patentability of genes and conclude that only the unique symbolic meaning of DNA is a relevant factor, which should be taken into account but weighed against other interests involved.

Human gene patents: core issues in a multi-layered debate.

After ten years of debate Directive 98/44/EG on the legal protection of biotechnological inventions was adopted in 1998. This directive takes decisions on some controversial bioethical and legal issues and offers the European biotech industries more space to develop their inventions, but leaves a number of philosophical and moral issues unresolved. This paper distinguishes between different layers in the debate and maps its modes of argumentation. Major philosophical, ethical and conceptual issues are located. It is argued that further analysis of these issues can help resolve further ethical and legal difficulties as regards patenting of human DNA. As the allegedly special status of genetic material remains unclear, the status of (human) DNA and its relation to the human body and personal identity should be further explored.

Genetic screening in the Netherlands

The Health Council of the Netherlands has repeatedly given attention to issues related to genetic screening and testing. In 1977 a first report on this subject was published with recommendations for screening for congenital metabolic disorders (Gezondheidsraad, 1977). In 1979 and 1980 two other reports appeared which also discussed genetic screening issues (Gezondheidsraad, 1979; Gezondheidsraad, 1980). These reports dealt mainly with issues concerning individual testing and counselling. In 1988 a report on the social consequences of genetic screening and testing was published, discussing the use of genetic information by insurers and employers, patient rights and the role of public authorities (de Wert and de Wachter 1990). In 1989 The Health Council of the Netherlands published a new report, Heredity: Society and Science which covered the most important issues concerning the ethical, social and legal implications of genetic screening and testing (Gezondheidsraad, 1989). At the end of 1994 the Health Council issued a report presenting its stance on issues related to large-scale genetic screening (Gezondheidsraad, 1994).

Euroscreen 2: Zu einer gemeinsamen Versicherungs- und Kommerzialisierungspolitik und zu einer Politik des öffentlichen Bewusstseins über Genetik

Einige Staaten sowohl in Europa als auch in Nordamerika haben bereits Gesetze eingeführt oder schlagen zumindest vor, dass den Versicherungen der Zugang zu molekular-genetischer Information verwehrt bleiben solle. Die Rechtfertigung für dieses Verbot wird gewöhnlich mit einer oder mit beiden der folgenden Behauptungen untermauert: 1. Genetische Information ist nicht vergleichbar mit anderen medizinischen Informationen, und man kann deshalb auch nicht in gleicher Weise mit ihr umgehen. 2. Das Wesen von Versicherung gründet auf dem Ideal der Solidarität. Während die erste Frage viel diskutiert wurde, schenkte man der zweiten weniger Aufmerksamkeit, obwohl sich hier offensichtlich unterschiedliche Konzepte von Solidarität verbergen. Das Solidaritätsargument wurde dementsprechend von der Versicherungsindustrie stark kritisiert. Sie befürchtet, dass durch das Verbot der Offenlegung von genetischer Information im Namen der Solidarität ein Grundprinzip von Versicherungen angegriffen wird: nämlich deren Form von Solidarität. Hilfreich ist deshalb eine Unterscheidung zwischen communal solidarity, einer allgemein menschlichen, sozialen Solidarität, und constitutive solidarity, einer konstituierten Solidarität. Communal solidarity ist eine Solidarität, die in einer Gruppe von Menschen gilt, die ein allgemeinmenschliches Interesse teilen. Constitutive solidarity dagegen wird in einer Gruppe von Menschen entwickelt, die allenfalls ein spezielles Interesse oder Ziel miteinander gemeinsam haben. Nach dem Konzept der communal solidarity könnte das gemeinsame Interesse durch eine Tätigkeit definiert sein, z.B. in Berufsgruppen, oder auch durch die Wahrnehmung einer gewissen Übereinkunft zwischen Individuen, die eine moralische Verantwortung begründet, wie dies z.B. in der humanistischen Solidarität gefordert wird. Die Geschichte der Krankenversicherungen in vielen europäischen Ländern illustriert dieses Konzept. Hier besteht jedoch ein großer Unterschied zur constitutive solidarity, bei der Individuen ein Interesse miteinander teilen. Um dieses zu verfolgen und zu schützen, bilden sie eine Gruppe, um ein Versicherungsprogramm zu erstellen. Einer der wichtigsten Unterschiede zur communal solidarity zeigt sich in der Regelung der individuellen Beiträge zum Gemeinschaftsunternehmen, die anhand des Risikos ermittelt werden. Solidarität meint hier, dass die Gruppenmitglieder gleichen Anteil an Nutzen und Kosten haben. Das Fairnessprinzip impliziert, dass der individuelle Beitrag mit den bekannten Risiken übereinstimmen sollte. Ethik Med (2000) 12:269–273

Genetic screening and testing

At a time when mapping of the human genome is considered an important objective in scientific research, mapping of the moral debates in the domain of genetic screening and testing in a health care setting may also be a worthwhile pursuit. A descriptive analysis of moral arguments as well as an inventory of the most important pragmatic considerations should give greater insight in the moral dimension of this medical practice. This kind of research seems worthwhile before a critical moral assessment of the practice of the genetic screening and development of a normative framework for this domain is undertaken. Such an inventory of moral and pragmatic arguments will also facilitate location and further exploration of possible underlying complicating factors, issues or disagreements which may prevent (further) growth towards consensus.