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Abstract

The Health Self Determination Index (HSDI) is a tool to measure the degree to which legal systems allow a person is able to make choices and decisions based on their own preferences and interests with regard to their health. The HSDI measures the degree to which a given regulatory environment recognize, guarantees and protects a self-determination with regard decisions affecting a person's health. The HSDI is intended to be global in scope, that is, to measure all countries around the world. The HSDI is empirically-based, that is, is based on data representing the state of affairs of health laws and regulations. Data come from four strategic areas – Abortion and contraception; – End-of-life; – Reproductive choices; – Access to regenerative medicine. The goal of the Index is to: – Provide an up-to -date tools to assess the degree of health self-determination – Raise awareness of how self-determination is treated differently around the world – Foster an evidence-based dialogue between policymakers, patients, the medical community and society on key issues affecting a person's life Current state of implementation – Complete dataset for 43 countries – Partial data set for over 100 countries – Available to the public at www.freedomofresearch.org – Preliminary data published Management – The Project is currently directed by Andrea Boggio, Associate Professor of Legal Studies at Bryant University (USA) – Structural is currently provided by the Associazione Luca Coscioni, a not-for-profit organization based in Rome (Italy) – Various activists, policymakers and academics are assisting the project as advisors – No person is currently remunerated for contributing to the Project Future directions – Expand the dataset to all countries around the world – Expand the Index to new areas of policy. Areas identified as priority are (1) medical use of marijuana and other illicit drugs, and (2) access to palliative care and pain management drugs – Maintain the current dataset up-to-date – Create a network of collaborators and advisors who guarantee the quality and growth of the project – Publish annual reports on the state of affairs of health self-determination Need for funding – Hire personnel to assist project development – Publishing annual report – Collecting data – Website and other structural costs – 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: Assisted reproduction technologies (ART); Research with human embryonic stem cells (hESC); End-of-life decisions; 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.

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/content/papers/10.5339/qfarc.2016.SSHAPP2116
2016-03-21
2020-10-20
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