World Congress

for freedom of scientific research

Research and Self Determination Index

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, we created the Research and Self Determination Index as a tool for comparative assessment of the degree of freedom that researchers, health care professionals and patients enjoy around the globe. Researching and measuring “freedom” is an important task as it allows understanding the context in which science and medicine advance so that we can further expand freedom.

Research and Self Determination Index

Approach:

To truly advance freedom of research and treatment, we must learn how to measure it comprehensively and rigorously. In this spirit we build a multi-dimension grid of issues and sub-issues that enabled us to clarify and operationalized freedom in particularly contested areas of policy.

Measurement questions:

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.

Methodology

We adopted a multi-step methodology that is inspired by other efforts to build indexes and ranking in other domains of social life (human development, freedom of press, social progress, happiness, corruption, and economic freedoms).

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:

  1. Assisted reproduction technologies (ART);
  2. Research with human embryonic stem cells (hESC);
  3. End-of-life decisions; and
  4. Abortion and contraception.

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

Measurement

Points (from 0 to 12) are assigned for each answer of each question. The highest score is allotted to the regulation that recognizes the highest degree of freedom. Progressively lower scores are assigned to less free environments, that is, regulatory environments that limit freedom moderately, severely, or entirely. The score 0 was assigned to blank prohibitions. If data are not available, the answer is not included in the calculation. For each country, we report the level of completion of data collection.

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 March 2014, we have completed data collection for 42 countries.

Ranking

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.

Data sources:

Literature

  • 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

Selected Indexes (Organization, Source):

rank Total (out of 194) POINTS ON 100 SCALE
1 Belgium 163 95
2 Netherlands 159 94
3 United States 151 92
4 Sweden 143 90
5 Iceland 139 89
6 Canada 138 89
7 Denmark 137 88
8 Greece 135 88
10 China 129 86
10 India 129 86
11 Spain 127 86
12 Australia 126 86
14 France 125 85
14 Singapore 125 85
16 New Zealand 124 85
16 South Africa 124 85
17 Hungary 121 84
18 Israel 120 84
19 Argentina 115 83
20 United Kingdom 113 82
22 Mexico 112 82
22 Switzerland 112 82
23 Vietnam 111 82
24 Portugal 109 81
26 Japan 104 80
26 South Korea 104 80
27 Czech Republic 101 79
29 Germany 99 79
29 Norway 99 79
30 Italy 98 79
32 Austria 96 78
32 Taiwan 96 78
33 Latvia 94 78
34 Turkey 91 77
36 Brazil 83 75
36 Colombia 83 75
37 Thailand 74 73
38 Croatia 72 72
39 Iran 66 71
40 Tunisia 56 68
41 Chile 55 68
44 Egypt 38 64
44 Morocco 38 64
44 Philippines 38 64
45 Dominican Republic 31 62