Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 6 de 6
Filtrar
Mais filtros











Base de dados
Intervalo de ano de publicação
1.
Sociol Health Illn ; 42(3): 496-509, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31657032

RESUMO

This article presents results from a Finnish focus group's study conducted among participants of a project called GeneRISK, in which the participants received a personal risk score for having a cardiovascular event based on genetic analysis, lifestyle and laboratory results. In the discussions, interpretations of the genetic risk score and its meaning were incorporated into personal narratives of health and illness. We argue that instead of serving as an explanation for health and illness, which can help guide people's lives and choices, the genetic risk information became an object of explanation. Therefore, the risk information did not create new conceptions of personal risk, nor did it generate enough power to push people to change their lifestyles. Instead, the risk information was used to strengthen the existing impression of personal risk and the narrative of personal health and illness.


Assuntos
Predisposição Genética para Doença , Narração , Finlândia , Grupos Focais , Humanos , Medição de Risco
2.
Eur J Hum Genet ; 27(11): 1659-1667, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31147625

RESUMO

Modern biomedical and genetic studies require large study cohorts; blood donors have been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood Service Biobank (BSB) in Finland was recently established to recruit blood donors willing to give broad biobank consent. The aim of the present study is to understand how the blood bank context influences views on donating samples and health data. We organised 61 interviews and 10 group discussions with current and potential blood donors. Using qualitative content analysis, we identified three discussion frameworks that summarise the results. We found that frequent blood donors associated the voluntary act of donation with caring for patients. The blood donation experience was considered to accommodate biobank participation, but also allowed critical observations on the integration of research data collection into blood donation. Research participants identified an important difference between the blood bank and biobank contexts. In the biobank context, the focus shifts from donating blood to patients into donating personal and genetic data for research use. Blood donors' anxiety over data use was balanced with their experience of the trustworthiness of the Blood Service. These experiences indicated that the new biobanking activity could be trusted to a familiar organisation. To build donors' trust, biobanks should invest in their institutional reputation, donor experience and dialogue with donors. These findings can be applied to other institutions that are considering setting up biobanks with broad consent for personal data use.


Assuntos
Bancos de Espécimes Biológicos/ética , Doadores de Sangue/ética , Conhecimentos, Atitudes e Prática em Saúde , Comportamento , Pesquisa Biomédica/ética , Finlândia , Humanos , Consentimento Livre e Esclarecido/ética , Direitos do Paciente/ética , Inquéritos e Questionários
3.
Transfusion ; 58(7): 1640-1646, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29572859

RESUMO

BACKGROUND: Increasing numbers of blood donors are recruited to participate in biomedical research. As blood services depend on voluntary donors, successful recruitment calls for a better understanding of donors' expectations and attitudes toward the use of samples in research. STUDY DESIGN AND METHODS: Sixty-one semistructured interviews were conducted with blood donors at eight Finnish Red Cross Blood Service donation sites in Finland. The 10- to 30-minute interviews included open-ended questions about donors' views on blood donation for patients and for biomedical research. Central motives to donate blood for patients were identified against which views on research use were compared to see how these reflections differed. RESULTS: Six central motives for donating blood for patients were identified among donors. The interviewees were, in general, willing to donate blood for research, but considered research donation more likely if it could be easily integrated into their usual blood donation habits. Biomedical research was perceived as important but its social benefits were more abstract than a direct help to patients. CONCLUSIONS: Familiarity and reciprocity were key to the relationship between the blood service and blood donors. Donation for research introduces a new, more complex context to blood donation. Challenge to recognize concrete outcomes and benefits of donation may affect willingness to donate for research. Transparent communication of the role of the blood service in research and of the beneficiaries of the research is essential in maintaining trust. These results will help blood services in their planning to recruit blood donors for research projects.


Assuntos
Pesquisa Biomédica , Doadores de Sangue/psicologia , Doadores de Sangue/estatística & dados numéricos , Adolescente , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Inquéritos e Questionários , Adulto Jovem
4.
Duodecim ; 133(8): 801-7, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29240350

RESUMO

Introduction of genomic data into health care requires willingness from physicians to adopt decision support systems as well as genomic information as part of their work. In the interview study, doctors' expectations about data systems and genomic data, as well as challenges for their utilization, are brought into light. Besides technical functionality, linking of data systems and the new knowledge mediated by them for clinicians also requires that doctors understand them as part of their professional expertise and thus useful.


Assuntos
Competência Clínica , Predisposição Genética para Doença , Genômica , Sistemas de Informação , Tomada de Decisões , Testes Genéticos , Terapia Genética , Genoma Humano , Humanos , Medicina de Precisão , Medição de Risco , Fatores de Risco
5.
Eur J Hum Genet ; 21(1): 14-20, 2013 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-22669414

RESUMO

This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people's engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of these factors if they are to successfully develop and integrate biobanks at a pan-European level.


Assuntos
Bancos de Espécimes Biológicos , Opinião Pública , Bancos de Espécimes Biológicos/organização & administração , Segurança Computacional , Termos de Consentimento , Coleta de Dados , Europa (Continente) , Humanos , Privacidade
6.
J Med Humanit ; 28(3): 149-72, 2007 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-17551812

RESUMO

The subject of this paper is the problematisation of depression in today's mental health care. It is based on a study of the professional discussion on depression in Finland from the mid-1980s to the 1990s. The ways in which Finnish mental health experts define the object of depression treatment bring out an ambivalence that stems from the discrepancy between two parallel but incongruent notions of what depression is: the psychopharmacological and the psychotherapeutic. The analysis of the discussion demonstrates how clinical and practical rationales of today's mental health care are formed in the space between the two poles. Two tendencies of these rationales are also pointed out: first, the DSM paradigm of depressive illness inclines to become problematic and to dissolve in the actual practices. Second, they insinuate emphasis on antidepressant medication and overall neuropsychiatric approach in the treatment of depressive disorders, although in an ambivalent way.


Assuntos
Afeto , Depressão/prevenção & controle , Nível de Saúde , Saúde Mental , Antidepressivos , Depressão/tratamento farmacológico , Depressão/terapia , Finlândia , Humanos , Psicofarmacologia , Psicoterapia
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA