Assembling a Medical Condition. Adermatoglyphia Case.

• Název práce v češtině: Sestavení zdravotního stavu. Případ Adermatoglyfie.
• Název v anglickém jazyce: Assembling a Medical Condition. Adermatoglyphia Case.
• Klíčová slova: zdravotní stav; adermatoglyphia; vedení; mocí; tělo; standardizace; obyvatelstvo; byrokratický aparát
• Klíčová slova anglicky: medical condition; adermatoglyphia; knowledge; power; body; standartization; population; bureaucratic apparatus
• Akademický rok vypsání: 2020/2021
• Typ práce: bakalářská práce
• Jazyk práce: angličtina
• Ústav: Katedra sociologie (23-KS)
• Vedoucí / školitel: Mgr. Martin Tremčinský, Ph.D.
• Řešitel: skrytý - zadáno vedoucím/školitelem
• Datum přihlášení: 05.09.2021
• Datum zadání: 07.09.2021
• Datum a čas obhajoby: 06.06.2022 09:00
• Místo konání obhajoby: Pekařská 16, JPEK212, 212, Malá učebna, 2.patro
• Datum odevzdání elektronické podoby: 03.05.2022
• Datum proběhlé obhajoby: 06.06.2022
• Oponenti: Mgr. Jan Tesárek

Seznam odborné literatury

1. Arribas-Ayllon, M., and V. Walkerdine. 2017. “Foucauldian Discourse Analysis.” In The SAGE Handbook of Qualitative Research in Psychology, 2nd ed., edited by C. Willig, and W. Stainton-Rogers, 110–123. London: SAGE Publications Ltd. ISBN:9781526405555.
2. Anaïs, S. (2013). Genealogy and critical discourse analysis in conversation: texts, discourse, critique. Critical discourse studies, 10(2), 123-135.
3. Burger, B., Fuchs, D., Sprecher, E., & Itin, P. (2011). The immigration delay disease: Adermatoglyphia–inherited absence of epidermal ridges. Journal of the American Academy of Dermatology, 64(5), 974-980.
4. Canguilhem, G. (1966). 1989. The normal and the pathological.
5. Dawkins, R. (1982). The extended phenotype (Vol. 8). Oxford: Oxford University Press.
6. Foucault, M. (2007). Discipline and punish: The birth of the prison. Duke University Press.
7. Foucault, M. (2003). Madness and civilization. Routledge.
8. Foucault, M. (2007). Security, territory, population: lectures at the Collège de France, 1977-78. Springer.
9. Foucault, M. (2012). The birth of the clinic. Routledge.
10. Foucault, M., Davidson, A. I., & Burchell, G. (2008). The birth of biopolitics: lectures at the Collège de France, 1978-1979. Springer.
11. Latour, B. (2012). We have never been modern. Harvard university press.
12. Petryna, A. (2003). Science and citizenship under postsocialism. Social Research: An International Quarterly, 70(2), 551-577.
13. Rabinow, P. (2010). Artificiality and enlightenment: from sociobiology to biosociality. Politix, (2), 21-46.
14. Sarfraz, N. (2019). Adermatoglyphia: barriers to biometric identification and the need for a standardized alternative. Cureus, 11(2).
15. Starr, S. L. (1991). Power, technologies, and the phenomenology of standards: On being allergic to onions. A sociology of monsters: Power, technology, and the modern world.
16. Taussig, K. S., Rapp, R., & Heath, D. (2003). Flexible Eugenics. Genetic Nature/Culture: Anthropology and Science Beyond the Two-Culture Divide, 58.



17. MedlinePlus web-site. URL: https://medlineplus.gov/genetics/condition/adermatoglyphia/
Date of citing 25.06.2021


18. Bloch-Lainé, F. (1969). Etude du problème général de l'inadaptation des personnes handicapées: rapport présenté au Premier ministre. la Documentation française.

Předběžná náplň práce

The most precise term one can use to describe Adermatoglyphia is “medical condition”. Some experts attribute it to genetic disorders (e.g. Sarfraz, 2019) while other scientists call it an “Immigration delay disease” (Burger et all, 2011). This very rare medical condition supposes certain peculiarities of skin on fingers disabling the affected people to create fingerprints. It poses an interest for genetics, dermatology and further biological and medical disciplines whose scholars undertook some research in this area. Social sciences however seem to pay no attention to this medical condition. The thesis described in this proposal, is aimed to fill this void.

Several things made adermatoglyphia possible: contemporary medicine authorized to decide if a body or other considered object is normal or not, contemporary bureaucratic apparatus and governance techniques requiring the control over population and identification of particular individuals as well as various technologies designed for fingerprint identification widely accepted by authorities on different levels all over the world. Provided these factors had never existed, such peculiarities of skin constituting adermatoglyphia would either be considered normal or no judgements over normal/abnormal body could be produced by medicine. 

Adermatoglyphia is a medical condition which studying may be interesting for social sciences. Firstly, its study may give us a better understanding of  how doctors and scientists decide over normality or abnormality of the human body. Secondly, it may provide a better understanding of the interrelation of medicine, biology and bureaucratic apparatus in the identification of norms and production of knowledge. Finally, it may underscore the role of nonhumans (fingerprint identification technologies and maybe genes) as the factors affecting the normality or abnormality of human bodies.

Brief literature review

Relations between power, knowledge and the human body, questions of normality and abnormality, the emergence of population and its governance were thoroughly studied by Michele Foucault.

In “Madness and civilisation” (2003) Foucault  analyses how the concept of madness (and the corresponding discourse with subsequent practices, tactics and governmental solutions it entailed) was produced under the influence of rational/reason discourse and believes, fears of contagion disseminated by marginals as well as capitalism which induced the exclusion of unhealthy people unable to work and located them in certain places where they could be surveiled and analysed by scientists being the object of their studies. 

In “the birth of the clinic” (2012) he writes about the emergence of the clinic in revolutionary France. He analyses the shift of medical attention from patient to its body and disease which became the object of medical examination undertaken via medical gaze. He also writes about the interests of state and their role in the transformation of medical practices towards national healthcare and protection of population. Finally, he concerns how clinic and human (body) as its object made possible the emergence of social sciences partly because it made the human body the object of investigation and partly due to the wider concerns related with healthcare provision (such as poverty, hygiene, urbanism etc.). 

In “Discipline and punish. The birth of prison” (2007) Foucault analysis the transformation of punitive practices in the modern Europe. He pays much attention to the emergence and effects of ubiquitous and productive disciplinary practices aimed to increase the efficiency of organisations and individuals’ performance. This was achieved inter alia by the creation of analytical grids which differentiated individual people, made easier to gather data about them for their subsequent analysis. Another important mechanism was an exam which enabled to make a decision over the status of the examined individual (the act of knowledge production) to apply more appropriate practices to it. He writes about the emergence of new power-knowledge where the increase of power was achieved by the creation of infrastructure aimed to produce knowledge which could be used for the increase of power and efficiency. Focault shows how disciplinary practices inscribed power to peoples producing efficient and docile bodies which were able to abide laws and keep the order of the  unfolding capitalist world and to effectively enact material objects such as guns, machines and tools. 

Foucault has also read a number of lecture courses where he developed his ideas. In courses “Security, territory, population” (2007) and “The birth of  biopolitics” (2008) he narrated about the transformation of the mode of governance from medieval power of sovereign monarch to the realm of law and disciplinary practices dominating the liberal capitalist modernity. One of the crucial transformation was the shift from territory to population as the major object of application of state power. In order to increase the efficiency of governance techniques and policies authorities had to discover population and elaborate intellectual and institutional infrastructure for its studying. Thereby, emerged biopolitics -  a new mode (aggregation of techniques, practices, strategies and tactics) of governance which dealt with the living people and tried to maximise their efficiency. On the one hand it dealt with  population in general (the problems of population growth, famine, healthcare, literacy etc.) while on the other hand within its institutions and practiced of disciplinary power it distinguished, differentiated, analyzed, disciplined, punished, measured and normalised individual bodies and people. 

A number of later works related with Focault’s intellectual heritage worth mentioning. Firstly, I would like to address an essay written by Petryna (2003) where she analyses how the knowledge of the effects of Chernobyl nuclear disaster on ones body was produced in the context of regime transformation-induced poverty and limited abilities of social welfare system in Ukraine. Secondly, I would like to mention the paper by Tausig, Rapp and Heath (2003) where they write about the identity formation and practices of Americans with dwarfism who encounter various difficulties since their bodies are out of standard boundaries and thus lack necessary infrastructure. It also provides 2 valuable references I would study later: Starr (1991) and Canguihlem (1996). Finally, I would like to address an article by Beihl (2005). There she shows how the dissemination and performance of state institutions fighting against AIDS affected the chances of marginalised and affected by AIDS Salvadorian people to survive. Another useful concept I would like to invoke in the bc thesis is the concept of handicap. This concept suggests “any physical, mental or situational condition which produces a weakness or trouble in relation to what is considered normal; normal is defined as the mean of capacities and chances of most individuals in the same society.’’ (Bloch-Laine, 1969). 

ANT is another intellectual tradition I would invoke it in order to address the role of traditionally neglected nonhuman actants (Latour, 2012) in enabling adermatoglyphia. There are several ways of thinking of the relation between institutions and technologies (“society” and “technoscience”). In my thesis I would like to equalize them by addressing all of them as a particular case of extended phenotype. This concept was coined by Dawkins (1982) and refers to the effects of genes beyond their host organism. Both institutions and technologies can be considered shared and sometimes conventional extended phenotype.

 
 
 
 
Předpokládané metody zpracování
Vysvětlete, na jakých datech bude analýza založena (druh, vzorek, terén) a jaké postupy a techniky k jejich analýze použijete. U teoretické práce popište analytický popř. syntetický postup.   
Adermatoglyphia is a very rare medical condition, therefore there is a limited scope of information on it. Hence the research design and particular methods will depend on the availability of sources. As the major sources I am planning to use scientific (medical and biological) publications concerning adermatoglyphia. I also intend to use bureaucratic documents concerning both adermatoglyphia (provided I would be able to find such) and fingerprint-based personality identification. Media and popular science publications may also be analysed.

As the main method I am going to use discourse analysis. I anticipate that I would combine Foucauldian discourse analysis (FDA) and critical discourse analysis (CDA). In the former discourse “approximates the concept of ‘discipline’ in two ways: it specifies the kind of institutional partitioning of knowledge we find in medicine, science, psychiatry, biology, economics, etc. But it also refers to techniques and practices through which objects, concepts, and strategies are formed” (Arribas-Ayllon, Walkerdine (2017)) while the latter understands discourse as “a methodological approach that focuses primarily on texts (whether written or spoken), on the rhetorical and technical use of language, and on questions of how social categories, knowledges, and relations are shaped by discourse” (Anaïs, 2013).

If the sources would allow me, I would also use genealogical analysis (Ibid) in order to understand the dynamics of adermatoglyphia construction over time.




Etické souvislosti zvažovaného projektu
Je realizace projektu spojena s etickými riziky? Pokud ano, jak na ně budete v projektu reagovat. Jak bude zajištěna ochrana osobních údajů účastníků výzkumu?
No ethical issues are anticipated as the research design suggests the use of secondary sources and publically available official documents only.

Předběžná náplň práce v anglickém jazyce

The most precise term one can use to describe Adermatoglyphia is “medical condition”. Some experts attribute it to genetic disorders (e.g. Sarfraz, 2019) while other scientists call it an “Immigration delay disease” (Burger et all, 2011). This very rare medical condition supposes certain peculiarities of skin on fingers disabling the affected people to create fingerprints. It poses an interest for genetics, dermatology and further biological and medical disciplines whose scholars undertook some research in this area. Social sciences however seem to pay no attention to this medical condition. The thesis described in this proposal, is aimed to fill this void.

Several things made adermatoglyphia possible: contemporary medicine authorized to decide if a body or other considered object is normal or not, contemporary bureaucratic apparatus and governance techniques requiring the control over population and identification of particular individuals as well as various technologies designed for fingerprint identification widely accepted by authorities on different levels all over the world. Provided these factors had never existed, such peculiarities of skin constituting adermatoglyphia would either be considered normal or no judgements over normal/abnormal body could be produced by medicine. 

Adermatoglyphia is a medical condition which studying may be interesting for social sciences. Firstly, its study may give us a better understanding of  how doctors and scientists decide over normality or abnormality of the human body. Secondly, it may provide a better understanding of the interrelation of medicine, biology and bureaucratic apparatus in the identification of norms and production of knowledge. Finally, it may underscore the role of nonhumans (fingerprint identification technologies and maybe genes) as the factors affecting the normality or abnormality of human bodies.

Brief literature review

Relations between power, knowledge and the human body, questions of normality and abnormality, the emergence of population and its governance were thoroughly studied by Michele Foucault.

In “Madness and civilisation” (2003) Foucault  analyses how the concept of madness (and the corresponding discourse with subsequent practices, tactics and governmental solutions it entailed) was produced under the influence of rational/reason discourse and believes, fears of contagion disseminated by marginals as well as capitalism which induced the exclusion of unhealthy people unable to work and located them in certain places where they could be surveiled and analysed by scientists being the object of their studies. 

In “the birth of the clinic” (2012) he writes about the emergence of the clinic in revolutionary France. He analyses the shift of medical attention from patient to its body and disease which became the object of medical examination undertaken via medical gaze. He also writes about the interests of state and their role in the transformation of medical practices towards national healthcare and protection of population. Finally, he concerns how clinic and human (body) as its object made possible the emergence of social sciences partly because it made the human body the object of investigation and partly due to the wider concerns related with healthcare provision (such as poverty, hygiene, urbanism etc.). 

In “Discipline and punish. The birth of prison” (2007) Foucault analysis the transformation of punitive practices in the modern Europe. He pays much attention to the emergence and effects of ubiquitous and productive disciplinary practices aimed to increase the efficiency of organisations and individuals’ performance. This was achieved inter alia by the creation of analytical grids which differentiated individual people, made easier to gather data about them for their subsequent analysis. Another important mechanism was an exam which enabled to make a decision over the status of the examined individual (the act of knowledge production) to apply more appropriate practices to it. He writes about the emergence of new power-knowledge where the increase of power was achieved by the creation of infrastructure aimed to produce knowledge which could be used for the increase of power and efficiency. Focault shows how disciplinary practices inscribed power to peoples producing efficient and docile bodies which were able to abide laws and keep the order of the  unfolding capitalist world and to effectively enact material objects such as guns, machines and tools. 

Foucault has also read a number of lecture courses where he developed his ideas. In courses “Security, territory, population” (2007) and “The birth of  biopolitics” (2008) he narrated about the transformation of the mode of governance from medieval power of sovereign monarch to the realm of law and disciplinary practices dominating the liberal capitalist modernity. One of the crucial transformation was the shift from territory to population as the major object of application of state power. In order to increase the efficiency of governance techniques and policies authorities had to discover population and elaborate intellectual and institutional infrastructure for its studying. Thereby, emerged biopolitics -  a new mode (aggregation of techniques, practices, strategies and tactics) of governance which dealt with the living people and tried to maximise their efficiency. On the one hand it dealt with  population in general (the problems of population growth, famine, healthcare, literacy etc.) while on the other hand within its institutions and practiced of disciplinary power it distinguished, differentiated, analyzed, disciplined, punished, measured and normalised individual bodies and people. 

A number of later works related with Focault’s intellectual heritage worth mentioning. Firstly, I would like to address an essay written by Petryna (2003) where she analyses how the knowledge of the effects of Chernobyl nuclear disaster on ones body was produced in the context of regime transformation-induced poverty and limited abilities of social welfare system in Ukraine. Secondly, I would like to mention the paper by Tausig, Rapp and Heath (2003) where they write about the identity formation and practices of Americans with dwarfism who encounter various difficulties since their bodies are out of standard boundaries and thus lack necessary infrastructure. It also provides 2 valuable references I would study later: Starr (1991) and Canguihlem (1996). Finally, I would like to address an article by Beihl (2005). There she shows how the dissemination and performance of state institutions fighting against AIDS affected the chances of marginalised and affected by AIDS Salvadorian people to survive. Another useful concept I would like to invoke in the bc thesis is the concept of handicap. This concept suggests “any physical, mental or situational condition which produces a weakness or trouble in relation to what is considered normal; normal is defined as the mean of capacities and chances of most individuals in the same society.’’ (Bloch-Laine, 1969). 

ANT is another intellectual tradition I would invoke it in order to address the role of traditionally neglected nonhuman actants (Latour, 2012) in enabling adermatoglyphia. There are several ways of thinking of the relation between institutions and technologies (“society” and “technoscience”). In my thesis I would like to equalize them by addressing all of them as a particular case of extended phenotype. This concept was coined by Dawkins (1982) and refers to the effects of genes beyond their host organism. Both institutions and technologies can be considered shared and sometimes conventional extended phenotype.

 
 
 
 
Předpokládané metody zpracování
Vysvětlete, na jakých datech bude analýza založena (druh, vzorek, terén) a jaké postupy a techniky k jejich analýze použijete. U teoretické práce popište analytický popř. syntetický postup.   
Adermatoglyphia is a very rare medical condition, therefore there is a limited scope of information on it. Hence the research design and particular methods will depend on the availability of sources. As the major sources I am planning to use scientific (medical and biological) publications concerning adermatoglyphia. I also intend to use bureaucratic documents concerning both adermatoglyphia (provided I would be able to find such) and fingerprint-based personality identification. Media and popular science publications may also be analysed.

As the main method I am going to use discourse analysis. I anticipate that I would combine Foucauldian discourse analysis (FDA) and critical discourse analysis (CDA). In the former discourse “approximates the concept of ‘discipline’ in two ways: it specifies the kind of institutional partitioning of knowledge we find in medicine, science, psychiatry, biology, economics, etc. But it also refers to techniques and practices through which objects, concepts, and strategies are formed” (Arribas-Ayllon, Walkerdine (2017)) while the latter understands discourse as “a methodological approach that focuses primarily on texts (whether written or spoken), on the rhetorical and technical use of language, and on questions of how social categories, knowledges, and relations are shaped by discourse” (Anaïs, 2013).

If the sources would allow me, I would also use genealogical analysis (Ibid) in order to understand the dynamics of adermatoglyphia construction over time.




Etické souvislosti zvažovaného projektu
Je realizace projektu spojena s etickými riziky? Pokud ano, jak na ně budete v projektu reagovat. Jak bude zajištěna ochrana osobních údajů účastníků výzkumu?
No ethical issues are anticipated as the research design suggests the use of secondary sources and publically available official documents only.