Freedom of medical research and treatment around the globe
by Andrea Boggio, Mihai Romanciuc, Carmen Sorrentino and Marco Cappato
Expanding medical knowledge through research, enhancing patients’ well-being through medical treatment, and securing the best available treatment are universal aspirations shared by researchers, health care professionals and patients around the globe. Their freedom to translate these aspirations in actual results is contained by the regulatory environments in which researchers, health care professionals and patients live. Regulatory environments differ from nation to nation: some support freedom of researchers, health care professionals and patients; some limit it. Aiming to raise awareness of such differences and to foster an evidence-based dialogue between policymakers, patients, the medical community and society, this project monitors the degree of freedom that researchers, health care professionals and patients enjoy in each jurisdiction around the globe. Researching and measuring “freedom” is an important task as it allows understanding the context in which science and medicine advance.
Freedom is a powerful yet controversial concept from. In fact, there is no uncontested definition of “freedom.” The study is concerned with a descriptive notion of freedom, one that can be measured. In an effort to avoid theoretical traps—to the extent that is possible when dealing with controversial ideas— and to operate with a definition of freedom that can be operationalized and eventually measured, this study adopts Gerald MacCallum’s definition of freedom as a triadic relation. Ian Carter summarizes this view as follows: “Freedom is … a triadic relation—that is, a relation between three things: an agent, certain preventing conditions, and certain doings or becomings of the agent”.
In other words, freedom is determined by the conditions that constrain the action of (moral) agents. Absence of freedom is true only in limited circumstances, for instance with the conditions imposed on action are so limiting that no action is possible. Any agent who is not absolutely prohibited from choosing and pursuing a certain course of action is “free,” at least to some extent. Since radical restrictions are often not the norm, MacCallum’s view is that freedom is in the majority cases a matter of degree.
This study applies this definition of freedom to health research and treatment in these terms:
- biomedical researchers, health professionals and patients are the agents;
- conducting medical research, fostering patient well-being, and seeking medical treatment are the ‘doing’s; and
- regulation provides the conditions under which researchers, health professionals and patients can respectively conduct research, foster patients’ well-being, and access treatment.
Monitoring and measuring freedom
Thinking about freedom as a matter of degree facilitates measurement. Actions are thus “free” on a scale from absolute prohibition to complete absence of constraints. Since law and other regulatory instruments constitute key sources of constraints in modern societies, we can monitor and measure freedom by reviewing the regulatory environment in which researchers, health care professionals and patients do research, provide health care, and seek treatment. This review allows us determine the degree to which we can say that actors are “free” to pursue the aspirations to expanding medical knowledge, foster patients’ well being and choose the best treatment.
The study adopted a multi-step methodology, which is inspired by well known report on thefreedom of the press published yearly by Freedom House, a DC-based independent private organization supporting the expansion of freedom throughout the world. We tested the methodology in a pilot study on data from 10 countries (Brazil, India, Ireland, Australia, New Zealand, Panama, Canada, South Africa, Spain, and Sweden).
- Identification key areas of medical research and treatment that raise important questions of freedom
Four areas that raise important questions of freedom, and thus can lead to key insights as to the degree of freedom that researchers, health care professionals and patients enjoy, were selected. These four areas are:
- Assisted reproduction technologies (ART);
- Research with human embryonic stem cells (hESC);
- End-of-life decisions; and
- Abortion and contraception.
We plan to expand the project further by monitoring freedom of treatment in two policy areas: therapeutic use of narcotics and pain treatment.
- Operationalization of the meaning of “freedom” in each of these key areas
To operationalize ‘freedom’ in each of the four areas of medical research and treatment, key regulatory conditions that constrain actors to some degree were identified. Furthermore, a list of questions was prepared for each of the areas. These questions capture the nature of these conditions and the degree to which the regulatory framework limits actors’ freedom to pursue the proper goal of each area of inquiry
Points were assigned for each answer of each question.
The highest score is allotted to regulatory environments that are completely free (+2) or mildly free (+1). A progressively lower score is assigned to progressively less free environments. These are regulatory environments that limit freedom moderately (-1) and that limit freedom entirely or severely (-2). The score 0 was assigned to situations in which regulation is absent, which are thus considered to be neither free nor not-free.
- Data collection
To assign the points, each question needed to be answered. To this end, data were collected from various sources including primary sources (statutes and other regulatory documents) and secondary sources (scientific papers and policy reports). As of January 2011, we have completed data collection for 6 countries: Australia, Belgium, Canada, Italy, Netherlands, and Switzerland. In 2011, we aim to have a complete set of data for 50 countries.
Points were then added to a total. The result quantifies the degree of freedom that key actors enjoy while acting in each of the areas of medical research and treatment selected. The points of each area were then added and their total represents the score of each country. Countries were then ranked based on the overall score.
Ian Carter, “Positive and Negative Liberty”, The Stanford Encyclopedia of Philosophy (Winter 2003 Edition), Edward N. Zalta (ed.), http://plato.stanford.edu/entries/liberty-positive-negative/
Gerald MacCallum, “Negative and Positive Freedom”, Philosophical Review, Vol. 76 (1967), pp.312-34
Karin Deutsch Karlekar and Eleanor Marchant (eds.), Freedom of the press 2007: a global survey of media independence. New York: Freedom House; Lanham: Rowman & Littlefield, 2008