Research and Self Determination Index – World Congress for Freedom of scientific research

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.

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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
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.

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