Molly Beutz Land, Associate Professor at New York Law School, spoke about access to health information as a human right.
A Yale Law School graduate, former Bernstein Fellow and Lowenstein Clinical Fellow, Molly Beutz Land has experience as an IP litigator and writes extensively on access to knowledge themes from a human rights perspective.
She shared with us the preliminary results of a research project hosted at New York Law School. The work examines what international human rights law has to say about state responsibilities to provide health information to citizens, with special attention to professional and lay caregivers.
The project is being developed in partnership with Health Information For All 2015. Research indicated that a lack of health information - the common symptoms of serious illness, when to see a doctor - was an important cause of preventable death. So the question arose: what does international human rights law have to say about the responsibility to diffuse accurate health information to both professional and lay caregivers?
According to Beutz Land, much work has already been done saying that states have an obligation to collect information about disease and accidents to plan public health services. Additionally, the obligation of states to protect the privacy of individual health information is well established.
So this project is particularly interested in the obligations of state to provide and diffuse health information to the public. The team looked significantly to the guidance of UN Committee on Economic, Social and Cultural Rights. On this basis, they concluded that access to health information is a critical component of securing the rights to health, education, and to exchange and impart information.
This suggests that States have important positive and negative obligations to ensure access to quality health information. They must refrain from censorship and from spreading misleading health information. They must regulate the marketing of medicines, including traditional medicine. States also have a particular obligation to diffuse access to health information about the risks of cigarettes, domestic violence, and other key public health risks.
The speaker continued by saying that States should also ensure that everyone has access to an informed health care provider. This might be professional caregivers, but front-line caregivers such as parents are also essential. Good quality health care begins at home; so this creates a responsibility to educate the real caregivers.
A next step is to look carefully at barriers to the realization of these responsibilities, and prioritize them. What role is intellectual property really playing in access to health information? Research in medical journals is probably not where most caregivers would look to get valuable information. Basic, reliable, good quality health reference and educational materials are probably the most important.
The training of lay health givers empirically is a powerful force in increasing access to health information. There has been research here about the success in increasing the practice of breastfeeding, and awareness of oral rehydration therapy to avoid infant mortality. What would a village health information center look like?
This project offers a chance to examine what constitutes a working definition of access to knowledge. To what extent should we focus on removing barriers, versus building capacity? The risk is that we would look only at the former (censorship, IP) to the exclusion of the latter.
Molly Beutz Land suggested a broader framework for thinking about access to knowledge. Historically and rhetorically, the A2K movement has emphasized IP barriers. But we should also look more broadly, to building human and institutional capacity for cultural and knowledge production and diffusion.