title: Human rights responsibilities of pharmaceutical companies in relation to access to medicines

authors: Lee, Joo-Young

abstract: Although access to medicines is a vital feature of the right to the highest attainable standard of health (“right to health”), almost two billion people lack access to essential medicines, leading to immense avoidable suffering. While the human rights responsibility to provide access to medicines lies mainly with States, pharmaceutical companies also have human rights responsibilities in relation to access to medicines. This article provides an introduction to these responsibilities. It briefly outlines the new UN Guiding Principles on Business and Human Rights and places the human rights responsibilities of pharmaceutical companies in this context. The authors draw from the work of the first UN Special Rapporteur on the right to the highest attainable standard of health, in particular the Human Rights Guidelines for Pharmaceutical Companies in Relation to Access to Medicines that he presented to the UN General Assembly in 2008, and his UN report on GlaxoSmithKline (GSK). While the Guiding Principles on Business and Human Rights are general human rights standards applicable to all business entities, the Human Rights Guidelines for Pharmaceutical Companies consider the specific human rights responsibilities of one sector (pharmaceutical companies) in relation to one area of activity (access to medicines). The article signals the human rights responsibilities of all pharmaceutical companies, with particular attention to patent-holding pharmaceutical companies. Adopting a right-to-health “lens,” the article discusses GSK and accountability. The authors argue that human rights should shape pharmaceutical companies' policies, and provide standards in relation to which pharmaceutical companies could, and should, be held accountable. They conclude that it is now crucial to devise independent, accessible, transparent, and effective mechanisms to monitor pharmaceutical companies and hold them publicly accountable for their human rights responsibilities.

text: Human rights responsibilities of pharmaceutical companies in relation to access to medicines Although access to medicines is a vital feature of the right to the highest attainable standard of health (“right to health”), almost two billion people lack access to essential medicines, leading to immense avoidable suffering. While the human rights responsibility to provide access to medicines lies mainly with States, pharmaceutical companies also have human rights responsibilities in relation to access to medicines. This article provides an introduction to these responsibilities. It briefly outlines the new UN Guiding Principles on Business and Human Rights and places the human rights responsibilities of pharmaceutical companies in this context. The authors draw from the work of the first UN Special Rapporteur on the right to the highest attainable standard of health, in particular the Human Rights Guidelines for Pharmaceutical Companies in Relation to Access to Medicines that he presented to the UN General Assembly in 2008, and his UN report on GlaxoSmithKline (GSK). While the Guiding Principles on Business and Human Rights are general human rights standards applicable to all business entities, the Human Rights Guidelines for Pharmaceutical Companies consider the specific human rights responsibilities of one sector (pharmaceutical companies) in relation to one area of activity (access to medicines). The article signals the human rights responsibilities of all pharmaceutical companies, with particular attention to patent-holding pharmaceutical companies. Adopting a right-to-health “lens,” the article discusses GSK and accountability. The authors argue that human rights should shape pharmaceutical companies' policies, and provide standards in relation to which pharmaceutical companies could, and should, be held accountable. They conclude that it is now crucial to devise independent, accessible, transparent, and effective mechanisms to monitor pharmaceutical companies and hold them publicly accountable for their human rights responsibilities.

year: 2012

title: Dominant words rise to the top by positive frequency-dependent selection.

authors: Pagel, Mark

subjects: approximate Bayesian computation

abstract: A puzzle of language is how speakers come to use the same words for particular meanings, given that there are often many competing alternatives (e.g., "sofa," "couch," "settee"), and there is seldom a necessary connection between a word and its meaning. The well-known process of random drift-roughly corresponding in this context to "say what you hear"-can cause the frequencies of alternative words to fluctuate over time, and it is even possible for one of the words to replace all others, without any form of selection being involved. However, is drift alone an adequate explanation of a shared vocabulary? Darwin thought not. Here, we apply models of neutral drift, directional selection, and positive frequency-dependent selection to explain over 417,000 word-use choices for 418 meanings in two natural populations of speakers. We find that neutral drift does not in general explain word use. Instead, some form of selection governs word choice in over 91% of the meanings we studied. In cases where one word dominates all others for a particular meaning-such as is typical of the words in the core lexicon of a language-word choice is guided by positive frequency-dependent selection-a bias that makes speakers disproportionately likely to use the words that most others use. This bias grants an increasing advantage to the common form as it becomes more popular and provides a mechanism to explain how a shared vocabulary can spontaneously self-organize and then be maintained for centuries or even millennia, despite new words continually entering the lexicon.

text: Dominant words rise to the top by positive frequency-dependent selection. A puzzle of language is how speakers come to use the same words for particular meanings, given that there are often many competing alternatives (e.g., "sofa," "couch," "settee"), and there is seldom a necessary connection between a word and its meaning. The well-known process of random drift-roughly corresponding in this context to "say what you hear"-can cause the frequencies of alternative words to fluctuate over time, and it is even possible for one of the words to replace all others, without any form of selection being involved. However, is drift alone an adequate explanation of a shared vocabulary? Darwin thought not. Here, we apply models of neutral drift, directional selection, and positive frequency-dependent selection to explain over 417,000 word-use choices for 418 meanings in two natural populations of speakers. We find that neutral drift does not in general explain word use. Instead, some form of selection governs word choice in over 91% of the meanings we studied. In cases where one word dominates all others for a particular meaning-such as is typical of the words in the core lexicon of a language-word choice is guided by positive frequency-dependent selection-a bias that makes speakers disproportionately likely to use the words that most others use. This bias grants an increasing advantage to the common form as it becomes more popular and provides a mechanism to explain how a shared vocabulary can spontaneously self-organize and then be maintained for centuries or even millennia, despite new words continually entering the lexicon.

year: 2019

title: Using inclusive research with participants with learning (intellectual) disability to better inform adult literacy policies in Aotearoa New Zealand

authors: Newcombe, Nicolina

abstract: Western ideas about disability and literacy were developed in tandem during the Industrial Revolution and subsequently brought to Aotearoa New Zealand via colonisation. These ideas inform and reinforce educator attitudes, which are the leading factor impeding adults with learning [intellectual] disability from their educational pathways of choice. People without learning disability need to hear the voices of people with learning disability to counteract these attitudes and move towards transformational equality.

There is a paucity of information about the access to and accessibility of adult literacy education for people with learning disability in Aotearoa New Zealand. However, anecdotal evidence reports their exclusion, even from foundational adult learning. There was a gap in knowledge where collaborative research that conveys the experiences of adults with learning disability was needed to gain greater insight to these issues in our bicultural context. My original contribution to knowledge is to present the voices of adults with learning disability as they discuss and demonstrate their literacy practices, and to use their perspectives to make recommendations for adult literacy policies in Aotearoa New Zealand.

I undertook a thematic analysis of current adult literacy policies in Aotearoa New Zealand and found that they target “most” adult learners, while positioning disabled people as needing specialised, and by inference optional to provide, education and resources. These policies also prescribe a linear and progressive andragogy that may not meet the needs of all adults with learning disability, while measuring literacy skills in a way that does not foreground their strengths or value their purposes for engagement.

Then, I conducted Inclusive Participatory Action Research with five adults with learning disability to gather information about their literacy practices and perspectives. Participants in this research decided to call themselves the Passioners. We met for 10 research meetings, preceded by at least two home visits, and interspersed by reflective meetings with individual participants. All research information was presented in easy read and key information was distributed audiovisually.

The Passioners added value to this research by providing unique opportunities that are only available through doing inclusive research with them, prompting research improvements, innovation, and my efforts towards acculturation in their worlds. I evaluated my inclusive approach in this research to learn more about how people with learning disability do research as people with learning disability, and what dispositions, resources, and skills people without learning disability need to do research with them.

Using reflexive thematic analysis, I constructed six themes from our research meetings data: learning disability cultural literacies, Māori (Indigenous peoples of Aotearoa New Zealand) cultural literacies, Pākehā (New Zealanders of European descent) cultural literacies, encoding, decoding, and social media, which extends the narrow definition of literacy in our adult literacy policies. These findings, and those from my policy analysis, were used to inform policy recommendations. Policy recommendations in this research may support implementation of the United Nations Convention on the Rights of Persons with Disabilities, particularly access to lifelong learning on an equal basis with others.

text: Using inclusive research with participants with learning (intellectual) disability to better inform adult literacy policies in Aotearoa New Zealand Western ideas about disability and literacy were developed in tandem during the Industrial Revolution and subsequently brought to Aotearoa New Zealand via colonisation. These ideas inform and reinforce educator attitudes, which are the leading factor impeding adults with learning [intellectual] disability from their educational pathways of choice. People without learning disability need to hear the voices of people with learning disability to counteract these attitudes and move towards transformational equality.

There is a paucity of information about the access to and accessibility of adult literacy education for people with learning disability in Aotearoa New Zealand. However, anecdotal evidence reports their exclusion, even from foundational adult learning. There was a gap in knowledge where collaborative research that conveys the experiences of adults with learning disability was needed to gain greater insight to these issues in our bicultural context. My original contribution to knowledge is to present the voices of adults with learning disability as they discuss and demonstrate their literacy practices, and to use their perspectives to make recommendations for adult literacy policies in Aotearoa New Zealand.

I undertook a thematic analysis of current adult literacy policies in Aotearoa New Zealand and found that they target “most” adult learners, while positioning disabled people as needing specialised, and by inference optional to provide, education and resources. These policies also prescribe a linear and progressive andragogy that may not meet the needs of all adults with learning disability, while measuring literacy skills in a way that does not foreground their strengths or value their purposes for engagement.

Then, I conducted Inclusive Participatory Action Research with five adults with learning disability to gather information about their literacy practices and perspectives. Participants in this research decided to call themselves the Passioners. We met for 10 research meetings, preceded by at least two home visits, and interspersed by reflective meetings with individual participants. All research information was presented in easy read and key information was distributed audiovisually.

The Passioners added value to this research by providing unique opportunities that are only available through doing inclusive research with them, prompting research improvements, innovation, and my efforts towards acculturation in their worlds. I evaluated my inclusive approach in this research to learn more about how people with learning disability do research as people with learning disability, and what dispositions, resources, and skills people without learning disability need to do research with them.

Using reflexive thematic analysis, I constructed six themes from our research meetings data: learning disability cultural literacies, Māori (Indigenous peoples of Aotearoa New Zealand) cultural literacies, Pākehā (New Zealanders of European descent) cultural literacies, encoding, decoding, and social media, which extends the narrow definition of literacy in our adult literacy policies. These findings, and those from my policy analysis, were used to inform policy recommendations. Policy recommendations in this research may support implementation of the United Nations Convention on the Rights of Persons with Disabilities, particularly access to lifelong learning on an equal basis with others.

year: 2024-09