@incollection{,
	
					
					
					828967F59ECFF739CD9111D75827720A
				,
	author={{LilianaAcero}},
	journal={{Global Journal of Medical Research}},
	journal={{GJMR}}2249-46180975-588810.34257/GJMR,
	address={Cambridge, United States},
	publisher={Global Journals Organisation}214924
}

@incollection{b0,
	
	
		,
	title={{a) Debatendo as pesquisas com células-tronco no Brasil e no}}
		,
	author={{
			LAcero
		}}
	
	
		,
	journal={{Reino Unido Revista DADOS}}
		
			54
			4
			
			,
	year={2010}
		
	

}

@incollection{b1,
	
	
		,
	title={{b) Science, public policy and engagement: Debates on stem cell research in Brazil}}
		,
	author={{
			LAcero
		}}
	
	
		,
	journal={{Genomics, Society}}
		
			6
			3
			
			,
	year={2010}
		
	

}

@book{b2,
	
	
		,
	title={{Pesquisas e Terapias com Células-Tronco: Visões Sociais e o Debate no Brasil}}
		,
	author={{
			LAcero
		}}
		
			,
	year={2011a}
			,
	publisher={E-Papers}
			,
	address={Rio de Janeiro}
		
	

}

@book{b3,
	
	
		,
	title={{Pesquisas com Células-Tronco no Brasil: Perspectivas do Progresso Científico e dos}}
		,
	author={{
			LAcero
		}}
		
			,
	year={2011b}
		
	

}

@incollection{b4,
	
	
		,
	title={{}}
	
	
		,
	journal={{Conhecimentos Especializados e Leigos. Revista Brasileira de Ciência}}
		
			2
			2
			
		
	
	,
	note={Tecnologia e Sociedade}

}

@incollection{b5,
	
	
		,
	title={{Regulação internacional e governança na medicina regenerativa: trajetórias do Reino Unido e a União Europeia e repercussões para a saúde coletiva global}}
		,
	author={{
			LAcero
		}}
	
	
		,
	journal={{OIKOS}}
		
			18
			2
			
			,
	year={2019}
		
	

}

@incollection{b6,
	
	
		,
	title={{a) Uma análise de matérias televisivas em ciência: o caso da medicina regenerativa no Brasil}}
		,
	author={{
			LAcero
		}}
	
	
		,
	journal={{Revista Tecnologia e Sociedade}}
		
			16
			45
			
			,
	year={2020}
		
	

}

@incollection{b7,
	
	
		,
	title={{Enquadramentos na medicina regenerativa: os relatos recentes na imprensa brasileira Revista Electrônica de Comunicação}}
		,
	author={{
			LAcero
		}}
	
	
		,
	journal={{Informação e Inovação em Saúde (RECIIS)}}
		
			14
			4
			
			,
	year={2020 b}
		
	

}

@incollection{b8,
	
	
		,
	title={{Qualidade das notícias em ciência e medicina: a imprensa na medicina regenerativa no Brasil}}
		,
	author={{
			LAcero
		}}
	
	
		,
	journal={{Desenvolvimento em Debate}}
		
			8
			1
			
			,
	year={2020 c}
		
	

}

@incollection{b9,
	
	
		,
	title={{Atenção centrada no paciente na prática interprofissional colaborativa}}
		,
	author={{
			HAgreli
		} and {
			Peduzzi
		} and {
			MCSilva
		}}
		
		
	
	
		,
	journal={{Interface-Comunicação}}
		
			20
			,
	year={2016}
		
	

}

@book{b10,
	
	
		,
	title={{}}
		10.1590/1807-57622015.0511
		
	

}

@incollection{b11,
	
	
		,
	title={{Trajetórias Terapêuticas Familiares: doenças raras hereditárias como sofrimento de longa duração}}
		,
	author={{
			WAraujo Aureliano
		}}
		10.1590/1413-81232018232.21832017
		
	
	
		,
	journal={{Ciência e SaúdeColetiva}}
		
			23
			2
			,
	year={2018}
		
	

}

@incollection{b12,
	
	
		,
	title={{Snowball Sampling: Problems and techniques of Chain Referral Sampling}}
		,
	author={{
			PBiernack
		} and {
			DWaldorf
		}}
		
	
	
		,
	journal={{Sociological Methods & Research}}
		
			2
			
			,
	year={1981}
		
	

}

@incollection{b13,
	
	
		,
	title={{Exploring cochlear implantation in the Netherlands}}
		,
	author={{
			SBlume
		}}
	
	
		,
	journal={{Technology & HumanValues}}
		
			25
			2
			
			,
	year={2000}
		
	
	,
	note={Science}

}

@incollection{b14,
	
	
		,
	title={{A integralidade da atenção à saúde como eixo da organização tecnológica nos serviços}}
		,
	author={{
			DBonfada
		} and {
			JCavalcante
		} and {
			DAraujo
		} and {
			JGuimarães
		}}
		
		
		
	
	
		,
	journal={{Ciência e SaúdeColetiva}}
		
			17
			2
			
			,
	year={2012. 2012}
		
	

}

@incollection{b15,
	
	
		,
	title={{Next Steps for Citizen Science}}
		,
	author={{
			RBonnie
		} and {
			JShirk
		} and {
			TPhillips
		} and {
			AWiggins
		}}
		
		
		
	
	
		,
	journal={{Policy Forum. Science}}
		
			343
			
			,
	year={2014}
		
	

}

@incollection{b16,
	
	
		,
	title={{Experiential knowledge: A new concept for the analysis of self-help groups}}
		,
	author={{
			TBorkman
		}}
	
	
		,
	journal={{Social Science Review}}
		
			50
			
			,
	year={1976}
		
	

}

@book{b17,
	
	
		,
	title={{A selective look at self-help groups in the United States. Health and Social Care in the Community}}
		,
	author={{
			TBorkman
		}}
		
			,
	year={1997}
			5
			
		
	

}

@incollection{b18,
	
	
		,
	title={{Política Nacional de Atenção Integral às Pessoas com Doenças Raras, Portaria nº 199}}
		,
	author={{
			Brasil
		}}
	
	
		,
	journal={{Diário Oficial da União}}
		
			,
	year={2014. 12 February}
		
	

}

@book{b19,
	
	
		,
	author={{
			SBussu
		} and {
			HDavis
		} and {
			Pollard
		}}
		
		
		,
	title={{The best of Sciencewise reflections on public dialogue}}
				,
	editor={
			A
		}
		London
		
			,
	publisher={Sciencewise}
			,
	year={2014}
		
	

}

@book{b20,
	
	
		,
	title={{Agir dans un monde incertain. Essai sur la democratie technique !}}
		,
	author={{
			MCallon
		} and {
			PLascoumes
		} and {
			YBarthe
		}}
		
		
		
			,
	year={2001}
			,
	publisher={Seuil}
			,
	address={Paris}
		
	

}

@incollection{b21,
	
	
		,
	title={{The increasing involvement of concerned groups in R&D policies: What lessons for public powers}}
		,
	author={{
			MCallon
		}}
	
	
		,
	booktitle={{Science and innovation: Rethinking the rationales for funding and governance}}
				,
	editor={
			AGeuna
			ASalter
			ESteinmueller
		}
		Aldershot
		
			,
	publisher={Edward Elgar}
			,
	year={2003}
			
		
	

}

@book{b22,
	
	
		,
	title={{Acting in an Uncertain World: An Essay on Technical Democracy}}
		,
	author={{
			MCallon
		} and {
			PLascoumes
		} and {
			YBarthe
		}}
		
		
		
			,
	year={2011}
			,
	publisher={MIT Press}
			,
	address={Cambridge, MA}
		
	

}

@incollection{b23,
	
	
		,
	title={{Athletes´ use of unproven stem cell therapies: Adding to inappropriate media hype?}}
		,
	author={{
			TCaulfield
		} and {
			AMcguire
		}}
		
	
	
		,
	journal={{Molecular Therapy}}
		
			20
			5
			
			,
	year={2012}
		
	

}

@incollection{b24,
	
	
		,
	title={{ANÁLISE DE CONTEÚDO: considerações gerais, relações com a pergunta de pesquisa, possibilidades e limitações do método}}
		,
	author={{
			RCavalcante
		} and {
			PCalixto
		} and {
			MPinheiro
		}}
		
		
	
	
		,
	journal={{Informação & Sociedade}}
		
			24
			1
			
			,
	year={2014}
		
	

}

@incollection{b25,
	
	
		,
	title={{The Third Wave of Science Studies: Studies of Expertise and Experience}}
		,
	author={{
			HMCollins
		} and {
			REvans
		}}
		
	
	
		,
	journal={{Social Studies of Science}}
		
			32
			2
			
			,
	year={2002}
		
	

}

@incollection{b26,
	
	
		,
	title={{STS as science or politics?}}
		,
	author={{
			HMCollins
		} and {
			REvans
		} and {
			MWinel
		}}
		
		
	
	
		,
	journal={{Social Studies of Science}}
		
			47
			4
			
			,
	year={2017}
		
	

}

@book{b27,
	
	
		,
	title={{Involvement, Shared Decision-Making and Medicines}}
		,
	author={{
			ACribb
		}}
		
			,
	year={2011}
			,
	publisher={Royal Pharmaceutical Society}
			,
	address={London}
		
	

}

@incollection{b28,
	
	
		,
	title={{Did a permissive scientific culture encourage the 'CRISPR babies' experiment?}}
		,
	author={{
			DDickenson
		} and {
			MDarnovsky
		}}
		
	
	
		,
	journal={{Nature Biotechnology}}
		
			37
			
			,
	year={2019}
		
	

}

@book{b29,
	
	
		,
	author={{
			MDominguez De Lima
		} and {
			AGilbert
		} and {
			DAndhorovitz
		}}
		
		
		10.1590/1413-812320182310.14762018
		
		,
	title={{Redes de tratamento e as associações de pacientes com doenças raras Ciência e Saúde Coletiva}}
				
			,
	year={2018}
			23
		
	

}

@book{b30,
	
	
		,
	title={{When science offers salvation. Patient advocacy and ethics}}
		,
	author={{
			RDresser
		}}
		
			,
	year={2001}
			,
	publisher={Oxford University Press}
			,
	address={Oxford}
		
	

}

@incollection{b31,
	
	
		,
	title={{Cultural health capital and the interactional dynamics of patient-centered care}}
		,
	author={{
			LADubbin
		} and {
			JSChang
		} and {
			JKShim
		}}
		
		
	
	
		,
	journal={{Social Science & Medicine}}
		
			93
			
			,
	year={2013}
		
	

}

@incollection{b32,
	
	
		,
	title={{The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials}}
		,
	author={{
			SEpstein
		}}
	
	
		,
	journal={{Technology & Human Values}}
		
			20
			
			,
	year={1995}
		
	
	,
	note={Science}

}

@book{b33,
	
	
		,
	title={{The ethical implications of new health technologies and citizen participation Opinion 29}}
		,
	author={{
			Ege
		}}
		
			,
	year={2015}
			,
	publisher={European Union}
			,
	address={Bruselas}
		
	

}

@incollection{b34,
	
	
		,
	title={{Rare diseases: understanding this Public Health Priority}}
		
	
	
		,
	journal={{European Organization for Rare Disease -EORD}}
		
			,
	year={2005}
		
	

}

@book{b35,
	
	
		,
	title={{org/pt-pt/publication/rare-diseases-understandingpublic-health-priority}}
		
			,
	year={January 2021}
		
	

}

@book{b36,
	
	
		,
	title={{Pathologies of power: Health, Human Rights and the New War on the Poor}}
		,
	author={{
			PFarmer
		}}
		
			,
	year={2005}
			,
	publisher={University of California Press}
			,
	address={Berkeley}
		
	

}

@incollection{b37,
	
	
		,
	title={{Opening the gateways to market and adoption of regenerative medicine? The UK case in context}}
		,
	author={{
			AFaulkner
		}}
	
	
		,
	journal={{Journal of Regenerative Medicine and Tissue Engineering}}
		
			11
			3
			
			,
	year={2016}
		
	

}

@incollection{b38,
	
	
		,
	title={{Patient-centered medicine and the broad clinical gaze: Measuring outcomes in pediatric deep stimulation}}
		,
	author={{
			JGardner
		}}
	
	
		,
	journal={{BioSocieties}}
		
			12
			
			,
	year={2017}
		
	

}

@incollection{b39,
	
	
		,
	title={{Situated knowledges: the science question in feminism and the privilege of partial perspective}}
		,
	author={{
			DHaraway
		}}
		10.2307/3178066
		
	
	
		,
	journal={{Feminist Studies}}
		
			14
			3
			
			,
	year={1988. June 2019}
		
	

}

@incollection{b40,
	
	
		,
	title={{Genetic services and testing in Brazil}}
		,
	author={{
			DHorovitz
		}}
	
	
		,
	journal={{Journal of Community Genetics}}
		
			4
			3
			
			,
	year={2013}
		
	

}

@incollection{b41,
	
	
		,
	title={{On the shoulders of idiots: Re-thinking science communication as 'event'}}
		,
	author={{
			MHorst
		} and {
			MMichael
		}}
		
	
	
		,
	journal={{Science as Culture}}
		
			20
			3
			
			,
	year={2011}
		
	

}

@book{b42,
	
	
		,
	title={{Citizen Science: A Study of People, Expertise and Sustainable Development}}
		,
	author={{
			AIrwin
		}}
		
			,
	year={1995}
			,
	publisher={Routledge (Environment and Society}
			,
	address={Londres}
		
	

}

@incollection{b43,
	
	
		,
	title={{Misunderstanding Science?}}
	
	
		,
	booktitle={{The Public Reconstruction of Science and Technology Cambridge}}
				,
	editor={
			AIrwin
			BWynne
		}
		
			,
	publisher={Cambridge University Press}
			,
	year={2003}
		
	

}

@incollection{b44,
	
	
		,
	title={{The good, the bad and the perfect: Criticizing engagement practice}}
		,
	author={{
			AIrwin
		} and {
			TJensen
		} and {
			KJones
		}}
		
		
	
	
		,
	journal={{Social Studies of Science}}
		
			43
			
			,
	year={2013}
		
	

}

@book{b45,
	
	
		,
	title={{Biomedical Platforms. Realigning the Normal and the Pathological in Late-Twentieth-Century Medicine}}
		,
	author={{
			PKeating
		} and {
			ACambrosio
		}}
		
		
			,
	year={2003}
			,
	publisher={MIT Press}
			,
	address={Cambridge MA}
		
	

}

@incollection{b46,
	
	
		,
	title={{Rushing Citizen science: a new approach to advance ecology, education, and conservation}}
		,
	author={{
			HKobori
		} and {
			JDickinson
		} and {
			IWashitani
		} and {
			RSakurai
		}}
		
		
		
	
	
		,
	journal={{Ecological Research}}
		
			31
			
			,
	year={2016}
		
	

}

@book{b47,
	
	
		,
	author={{
			MLeach
		} and {
			IScoones
		} and {
			BWynne
		}}
		
		
		,
	title={{Science and Citizens: Globalization and the Challenge of engagement}}
				London
		
			,
	publisher={Zed Books}
			,
	year={2005}
		
	

}

@incollection{b48,
	
	
		,
	title={{Exploring the practice of patient centered care: The role of ethnography and reflexivity}}
		,
	author={{
			EGLiberati
		} and {
			MGorli
		} and {
			LMoja
		} and {
			LGaluppo
		}}
		
		
		
	
	
		,
	journal={{Social Science & Medicine}}
		
			133
			
			,
	year={2015}
		
	

}

@incollection{b49,
	
	
		,
	title={{Let's pull these technologies out of the ivory tower: The politics, ethos, and ironies of participant-driven genomic research}}
		,
	author={{
			MMacgowan
		} and {
			SChoudhury
		} and {
			EJuengst
		} and {
			MLambrix
		}}
		
		
		
	
	
		,
	journal={{BioSocieties}}
		
			12
			
			,
	year={2016}
		
	

}

@incollection{b50,
	
	
		,
	title={{The future of science governance: Publics, policies, practices}}
		,
	author={{
			PMacnaghten
		} and {
			JChilvers
		}}
		
		10.1068/c1245j
	
	
		,
	journal={{Environment and Planning C: Government and Policy}}
		
			32
			
			,
	year={2013}
		
	

}

@incollection{b51,
	
	
		,
	title={{From embodied risk to embodying hope: Therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis}}
		,
	author={{
			FMazanderani
		} and {
			JKelly
		} and {
			ADucey
		}}
		
		
		10.1007/s13770-013-1116-7.pdf
	
	
		,
	journal={{Biosocieties}}
		
			13
			1
			
			,
	year={2018}
		
	

}

@incollection{b52,
	
	
		,
	title={{The global industry for unproven stem cell interventions and stem cell tourism}}
		,
	author={{
			DMcmahon
		}}
		10.1007/s13770-013-1116-7.pdf
	
	
		,
	journal={{Tissue Engineering and Regenerative Medicine}}
		
			11
			
			,
	year={2014}
		
	

}

@incollection{b53,
	
	
		,
	title={{Patient-centredness: a conceptual framework and review of the empirical literature}}
		,
	author={{
			NMead
		} and {
			PBower
		}}
		
	
	
		,
	journal={{Social Science & Medicine}}
		
			51
			
			,
	year={2000}
		
	

}

@incollection{b54,
	
	
		,
	title={{Políticas de saúde pública aplicadas à genética médica no Brasil}}
		,
	author={{
			JMeira
		} and {
			AAcosta
		}}
		
	
	
		,
	journal={{Revista de Ciência médica e biológica}}
		
			8
			2
			
			,
	year={2009}
		
	

}

@book{b55,
	
	
		,
	title={{Política Nacional de Atenção Integral em Genética Clínica. Portaria nº 81, Diário Oficial da União}}
		,
	author={{
			SaúdeMinistério Da
		}}
		
			,
	year={2009. January}
			21
		
	

}

@book{b56,
	
	
		,
	title={{Priorização de Protocolos e Diretrizes Terapêuticas para Atenção Integral às Pessoas com Doenças Raras. Comissão Nacional de Incorporação Tecnologias no SUS. Relatório 142}}
		,
	author={{
			SaúdeMinistério Da
		}}
		
			,
	year={2015}
			,
	publisher={MS}
			,
	address={Brasília}
		
	

}

@incollection{b57,
	
	
		,
	title={{The NHS Constitution: The NHS Belongs to Us All}}
	
	
		,
	journal={{NHS}}
		
			,
	year={2013}
		
	

}

@incollection{b58,
	
	
		,
	title={{Patients, profits and values: myozyme as an exemplar of biosociality}}
		,
	author={{
			CNovas
		}}
	
	
		,
	booktitle={{Biosocialities, genetics and the social sciences.: making biologies and identities}}
				,
	editor={
			SGibbon
			CNovas
		}
		London
		
			,
	publisher={Routledge}
			,
	year={2008}
		
	

}

@book{b59,
	
	
		,
	title={{Orphan Drugs, Patient Activism and Contemporary Healthcare}}
		,
	author={{
			CNovas
		}}
		
		
			,
	year={2012. January 2021}
			68
			24
			,
	address={Quaderni}
		
	
	,
	note={online) Available at}

}

@book{b60,
	
	
		,
	title={{Rethinking science: Knowledge and the public in an age of uncertainty}}
		,
	author={{
			HNowotny
		} and {
			IScott
		} and {
			SGibbons
		}}
		
		
		
			,
	year={2001}
			,
	publisher={Blackwell Publishers}
			,
	address={Cambridge}
		
	

}

@incollection{b61,
	
	
		,
	title={{Quando ser raro se torna um valor: o ativismo político por direitos das pessoas com doenças raras no Sistema Único de Saúde}}
		,
	author={{
			.MNunez Moreira
		} and {
			MNascimento
		} and {
			DHorovitz
		} and {
			AMartins
		}}
		
		
		
		10.1590/0102-311X00058017
	
	
		,
	journal={{Cadernos de Saúde Pública}}
		
			34
			1
			5
			,
	year={2018}
		
	

}

@book{b62,
	
	
		,
	title={{}}
		10.1590/0102-311X00058017
		
		
	

}

@incollection{b63,
	
	
		,
	title={{The illness experience. State of knowledge and perspectives for research}}
		,
	author={{
			JPierret
		}}
	
	
		,
	journal={{Sociology of Health & Illness}}
		
			25
			3
			
			,
	year={2003}
		
	

}

@incollection{b64,
	
	
		,
	title={{Chasing cures: Rewards and risks for rare disease patient organizations involved in research}}
		,
	author={{
			DPinto
		}}
	
	
		,
	journal={{Biosocieties}}
		
			13
			1
			
			,
	year={2018}
		
	

}

@incollection{b65,
	
	
		,
	title={{The struggle against neuromuscular diseases in France and the emergence of the ''partnership model'' of patient organization}}
		,
	author={{
			VRabeharisoa
		}}
	
	
		,
	journal={{Social Science & Medicine}}
		
			57
			
			,
	year={2003}
		
	

}

@incollection{b66,
	
	
		,
	title={{Evidence-based activism: patients' organizations, users' and activist's groups in knowledge}}
		,
	author={{
			VRabeharisoa
		} and {
			TMoreira
		} and {
			MAkrich
		}}
		
		
	
	
		,
	journal={{BioSocieties}}
		
			9
			2
			
			,
	year={2014}
		
	

}

@incollection{b67,
	
	
		,
	title={{Artificiality and enlightenment: From sociobiology to biosociality}}
		,
	author={{
			PRabinow
		}}
	
	
		,
	booktitle={{Essays on the anthropology of reason}}
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	editor={
			PRabinow
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	year={1996}
		
	

}

@incollection{b68,
	
	
		,
	title={{Plurality in understandings of innovation, sociotechnical progress and sustainable development. analysis of OCDE expert narratives}}
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	author={{
			PSavaget
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			LAcero
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	journal={{Public Understanding of Science}}
		
			46
			
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	year={2017}
		
	

}

@incollection{b69,
	
	
		,
	title={{Hegemony in the marketplace of biomedical innovation: consumer demand and stem cell science}}
		,
	author={{
			BSalter
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			YZhou
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			SDatta
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	journal={{Social Science & Medicine}}
		
			131
			
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	year={2015}
		
	

}

@book{b70,
	
	
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	title={{Políticas públicas: uma revisão da literatura. Sociologias}}
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	author={{
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}

@incollection{b71,
	
	
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			AAnddeprá
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	booktitle={{Ligações perigosas: indústria farmacêutica, associações de pacientes e as batalhas judiciais por acesso a medicamentos Physis}}
				
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	year={2012}
			22
			
		
	

}

@incollection{b72,
	
	
		,
	title={{Opening up' and 'closing down': Power, participation, and pluralism in the social appraisal of technology}}
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	author={{
			AStirling
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			33
			
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@book{b73,
	
	
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	year={2005}
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	publisher={Oxford University Press}
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	address={Oxford}
		
	

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@book{b74,
	
	
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	editor={Webster, A. and Wyatt, S.}
		
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	publisher={Palgrave Macmillan}
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	address={Basingstoke}
		
	

}

@incollection{b75,
	
	
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	title={{Scaling Patients LikeMe via a "Generalized Platform" for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising}}
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	author={{
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			EThorley
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	year={2018}
		
	

}

@incollection{b76,
	
	
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	title={{The "Limits" of Medicalization?: Modern Medicine and the Lay Populace in " Late}}
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	author={{
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	year={1996}
		
	

}

@incollection{b77,
	
	
		,
	title={{Public uptake of science: A case for institutional reflexivity}}
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	author={{
			BWynne
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	journal={{Public Understanding of Science}}
		
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	year={1993}
		
	

}

@incollection{b78,
	
	
		,
	title={{Public Understanding of Science}}
		,
	author={{
			BWynne
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		,
	booktitle={{Handbook of Science and Technology Studies}}
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	editor={
			SJasanoff
			GMarkle
			JPerterson
			TPinch
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		Thousand Oakes, CA
		
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	publisher={Sage}
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	year={1995}
		
	

}