Time, DNA and documents in family reckonings

Fonseca, Cláudia

doi:10.1590/1809-43412015v12n1p075

Cited by 7 publications

(3 citation statements)

References 20 publications

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“… 3. We are grateful to the anonymous reviewer for highlighting the limits of ‘patient organisations’ as an analytical category particularly in relation to rare genetic disease in Brazil where activism may be ‘family orientated’ (see Fonseca 2015 )and individualised models of patient activism may not be relevant. …”

Section: Notesmentioning

confidence: 99%

Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil

Gibbon

Aureliano

2018

Anthropology & Medicine

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Within the context of a globalising agenda for genetic research where ‘global health’ is increasingly seen as necessarily informed by and having to account for genomics, the focus on rare genetic diseases is becoming prominent. Drawing from ethnographic research carried out separately by both authors in Brazil, this paper examines how an emerging focus on two different arenas of rare genetic disease, cancer genetics and a class of degenerative neurological diseases known as Ataxias, is subject to and a product of the dynamics of inclusion and exclusion as this concerns participation in research and access to health care. It examines how in these different cases ‘rarenesss’ has been diversely situated and differently politicised and how clinicians, patients and their families grapple with the slippery boundaries between research, rights to health and the limits of care, therapy or prevention. It illustrates how attention to rare genetic disease in Brazil emerges at the intersection of a particular history of genetic research and public health infrastructure, densely complicated feedback loops between clinical care and research, patient mobilisation around the ‘judicialisation’ of health and recent state legislation regarding rare disease in Brazil. It highlights the relevance of local configurations in the way rare genetic disease is being made relevant for and by different communities.

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Section: Notesmentioning

confidence: 99%

Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil

Gibbon

Aureliano

2018

Anthropology & Medicine

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“…Or again, in the intriguing paths taken by the political movement seeking legal reparation for the human rights violations perpetrated by the Brazilian government against children of the compulsorily institutionalized patients of Hansen's disease, who were separately involuntarily and raised by other families or the State. Starting out from a stigmatized condition, they attained public recognition of the traumatic experience of forced separation from their mother and/or father after forty years of activism (Fonseca 2015).…”

Section: Final Considerationsmentioning

confidence: 99%

Deserving victimhood: kinship, emotions and morality in contemporary politics

Vecchioli

2018

Vibrant, Virtual Braz. Anthr.

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This paper is about the place of family values, kinship relations and feelings of compassion for victims in national public space. Setting out from a description of various public affairs concerning the relatives of disappeared in Argentina, I show the key role played by blood ties and family values in forming a legitimate political representation. While the claim of blood ties with victims had been instituted as a legitimate form of political representation ever since the return to democracy, over the last decade or so sentiments towards victims have become incorporated into the State, enabling the latter to be imagined as a victim too. Here I explore diverse assessments of these affective dispositions, the critical place attributed to suffering in forging forms of governmentality, and the significant role played by the State in the unequal distribution of feelings of compassion.

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“…xima a las personas (Fonseca 2015). En los casos estudiados, esto suele suceder antes de la primera entrevista.…”

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Perspectivas, motivaciones e intereses en la búsqueda de ancestrías genéticas en Buenos Aires, Argentina

Rocca

Smietniansky

Spina

et al. 2020

rev.colomb.antropol.

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Este artículo propone una aproximación etnográfica al estudio de las perspectivas, motivaciones e intereses de los individuos participantes en el proyecto “Ancestría genética e identidad”. Basados en un corpus de entrevistas y en un marco teórico que utiliza los conceptos de genealogía y pedigrí, indagamos la significación que el dato genético adquiere en la recreación de las historias e identidades personales y familiares, así como el modo en que el test de ancestría genética se articula y entra en negociación con otras experiencias y registros de tipo oral o escrito. En el marco de las investigaciones desarrolladas en este campo, también señalamos la importancia de considerar los contextos sociales, jurídicos y políticos para comprender el impacto de estas nuevas tecnologías.

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Time, DNA and documents in family reckonings

Cited by 7 publications

References 20 publications

Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil

Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil

Deserving victimhood: kinship, emotions and morality in contemporary politics

Perspectivas, motivaciones e intereses en la búsqueda de ancestrías genéticas en Buenos Aires, Argentina

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