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. These aspirations are recognized and protected as basic rights by various international instruments.

The Right to Health

Article 25 of the Universal Declaration of Human Rights states that “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services.” The WHO Constitution enshrines “…the highest attainable standard of health as a fundamental right of every human being.” WHO further clarifies that “the right to health includes both freedoms and entitlements. Freedoms include the right to control one’s health and body (e.g. sexual and reproductive rights) and to be free from interference (e.g. free from torture and from non-consensual medical treatment and experimentation). Entitlements include the right to a system of health protection that gives everyone an equal opportunity to enjoy the highest attainable level of health.

The Right to Science

Article 27 of the Universal Declaration of Human Rights and Article 15(b) of the International Covenant on Economic, Social and Cultural Rights recognize, among other things, the right to benefit from science and technology and the duty of member states to respect the freedom indispensable for scientific research and creative activity. The pursuit of scientific knowledge and the ability to benefit from the advancement of science and its applications are thus recognized as human rights by

The Research and Self Determination Index (RSDI)

To full realize these human rights, states must set up legal and regulatory environments to protect researchers’, health care professionals’ and patients’ freedom to research and access treatment. The Research and Self Determination Index (RSDI) is a research and policy tool for comparative assessment of the degree to which researchers, health care professionals and patients enjoy the right to health and the right science around the globe. Based on analysis of data on domestic legislation, the RSDI documents cross-national variation of legal regimes and ranks countries based on the degree to which the rights of researchers, health care professionals and patients are recognized. The RSDI allows readers to better understand the context in which science and medicine advance so that we can further expand the right to science. The intent is to raise awareness of such differences and to foster an evidence-based dialogue among policymakers, scientists, patients, and society.

Research and Self Determination Index

Approach:

We conceptualize the right to health and the right to science as a matter of degree. These two rights can in fact be fully realized, partially realized, or denied. This approach, which is consistent with both human rights theory and practice, facilitates measurement. In fact, human rights can be measured by identifying indicators of the degree to which the freedoms and entitlements that constitutes the normative content of human rights are recognized. We found these indicators in key provisions of domestic laws. The analysis of laws and other regulatory instruments enables us to measure the extent to which certain actions are “free” (on a scale from absolute prohibition to complete absence of constraints) and certain entitlements are recognized. By converting data on legal instruments into points, we can generate scores that represents the degree to which the right to health and the right to science are realized.

Measurement questions:

The RSDI is based on a five-step process, which 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):

1. Selection of areas of scientific research and medical treatment

We identified areas of policy that raise important questions that affect the enjoyment of the right to health and the right to science. Then we selected areas that have the potential to generate insights as to the degree to which researchers, health care professionals and patients enjoy their rights. These four areas are:

  • Assisted reproduction technologies (ART);
  • Research with human embryonic stem cells (hESC);
  • End-of-life decisions; and
  • Abortion and contraception

2. Identification of legal and regulatory indicators

We identified key regulatory conditions that permit measurement of the degree to which actors can enjoy their rights. For each indicator, we generated a list of questions and answers that capture the degree to which the regulatory framework recognizes, protects, or limits actors’ ability to engage in a certain conduct or enjoy a certain entitlement.

3. Point allocation

We assigned points (from 0 to 12) to each answer pertaining to indicators. We allotted the highest score to the higher degree of enjoyment of the right. Progressively lower scores were assigned to legal environments that guarantee less freedoms and entitlements. The score 0 was assigned to blank prohibitions. If data are not available, the answer is not included in the calculation Data may not be available for two reasons: either we were not able to find relevant data or the legal system is silent on the point.

4. Data collection

Data were collected from various sources including primary sources (statutes and other regulatory documents) and secondary sources (scientific papers and policy reports). For each country, we report the level of completion of data collection.

5. Visualization of results and ranking

Points were then added to a total thus generating area scores and an overall score. The overall score results from adding the points of each area. These scores quantify the degree of freedom and entitles in each of the areas are protected under domestic law. Countries were then ranked based on the area scores and the overall score. The countries that appear on the Index are countries for which we have collected at least 80% of the data. The total of countries appearing in the Index are 46. Initially, the Index included 42 countries. Three countries were added in 2015. One was added in 2017.

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 Netherlands 164 95
2 Belgium 163 95
3 United States 151 92
4 Canada 150 92
5 Sweden 143 90
6 Iceland 139 89
7 Denmark 137 88
8 Greece 135 88
10 China 129 86
10 India 129 86
12 France 127 86
12 Spain 127 86
13 Australia 126 86
14 Singapore 125 85
16 New Zealand 124 85
16 South Africa 124 85
17 Hungary 121 84
18 Israel 120 84
20 Argentina 115 83
20 Vietnam 115 83
21 United Kingdom 113 82
23 Mexico 112 82
23 Switzerland 112 82
24 Portugal 109 81
25 Germany 105 80
27 Japan 104 80
27 South Korea 104 80
28 Czech Republic 101 79
29 Norway 99 79
30 Italy 98 79
32 Austria 96 78
32 Taiwan 96 78
33 Colombia 95 78
34 Latvia 94 78
35 Turkey 91 77
36 Brazil 88 76
37 Chile 79 74
38 Thailand 74 73
39 Croatia 72 72
40 Iran 66 71
41 Tunisia 56 68
44 Egypt 38 64
44 Morocco 38 64
44 Philippines 38 64
45 Dominican Republic 31 62
46 Kenya 12 57