We invite abstracts to the following panel for the 2018 AAA meetings in San Jose, California – November 14-18:
What Does it Mean to ‘Care for Rare’? Anthropological Interventions and Imagination in Rare Disease
Marlee McGuire, PhD Candidate
CIHR Douglas Kinsella Doctoral Researcher in Bioethics
Department of Anthropology, University of British Columbia, Canada
Małgorzata Rajtar, PhD
Assistant Professor, Department of Ethnology and Cultural Anthropology
Adam Mickiewicz University in Poznań, Poland
Mara Buchbinder, PhD
Associate Professor, Department of Social Medicine
University of North Carolina at Chapel Hill
A daily tablespoon of corn starch, a low protein diet, carnitine supplements, Omega 3 fish oil pills, a biologic enzyme replacement therapy that costs $500,000 per year: what links these different substances and practices is that they are all treatments for rare genetic metabolic disease. The conditions that get labeled ‘rare’ or ‘orphan’ constitute a diverse and growing group of up to 8000 genetic conditions that are chronic, disabling, and sometimes fatal. Biomedical care practices in rare disease have been substantially altered in recent years—from a clinical practice of testing and tinkering with different dosages of vitamins and therapeutic diets to one that also includes prescribing and monitoring the use of controversial expensive therapies. Newborn genetic screening programs facilitate earlier treatment of the afflicted, but they equally raise new ethical questions and introduce new inequalities in terms of access and money. In all contexts, patients and their families grapple with being ‘rare,’ particularly as these interventions and technologies open new moral frames for cultural projects of belonging and care.
Following the 1983 United States Orphan Drug Act and similar incentivizing legislations worldwide, recent years have witnessed an expansion of pharmacological, biomedical, and biotechnological interventions in the field of rare diseases. This has infused rare disease care with massive flows of capital and industry funding, making them impossible to ignore. Public and private systems worldwide have responded in variable ways. The Council of the European Union instituted a rare disease policy in 2009 but only some member states have followed through on developing national plans or strategies. In a very different policy direction, Canada has adopted a ‘policy of non-policy’—efforts to develop one stalled by multi-stakeholder negotiations between those who profit from rare diseases and those who pay for them. As higher-income Western states struggle to find a way to reconcile how to ‘care for rare’ within existing political frameworks, private industry actors take the opportunity to profoundly reshape health care systems, regulatory agencies, and resource allocation mechanisms. States not within the global economic core are left to figure out whether and how to integrate these treatments and practices into their own health care systems, amidst other pressing public health concerns.
Against this background of biomedical and political interventions, this panel calls for anthropological attention to sociocultural, institutional, economic, and medical entanglements of rare diseases. Rare disease urges us all to ask deeper theoretical questions about the dichotomies that structure ethics and policy more generally: the few versus the many, equity versus equality, evidence versus hope. Specifically, we ask what tensions the notion of “rarity” presents at the individual/collective and population/global health levels; what ethical theories inform the discourse about rare diseases and structure access to treatment and/or care globally; how power structures are appropriated as well as how biomedical and biotechnological inequalities are handled by different actors in the field of rare diseases. Finally, we are interested in an analysis of care practices employed in the field of rare diseases, broadly defined.
Call for Abstracts:
We invite ethnographically grounded and theoretically inspiring paper abstracts (of up to 250 words) that attend to the above-mentioned issues. Please send your abstracts to both Marlee McGuire (at: [email protected]) and Malgorzata Rajtar (at: [email protected]) by March 31st 2018 at 5pm PST. Decisions about acceptance for this panel will be emailed by April 4th 2018.
2018 AAA Annual Meeting information:
Thank you and best regards,
Marlee & Malgorzata