The public’s understanding of forensic DNA databases remains undertheorized and few empirical studies have been produced. This article aims to address this omission by exploring the answers to an open-ended question taken from an online... more
The public’s understanding of forensic DNA databases remains undertheorized and few empirical studies have been produced. This article aims to address this omission by exploring the answers to an open-ended question taken from an online questionnaire regarding the reasons for individuals’ voluntarily accepting or refusing to allow their DNA profile to be included in the Portuguese forensic DNA database. The analysis is undertaken from the perspective of biological citizenship and the simultaneous empowering and disempowering effects of surveillance. The results indicate a pragmatic ethical framework that is linked to the cultural and emotional elements of altruism, resistance, stigma, and social representations of what is beneficial or harmful to the individual and to society. These subjectivities are anchored in commonplace images and metaphors for genetics, DNA, and forensic science that circulate in the messages transmitted by the media which pervade everyday life; hierarchies of trust in science and the justice system; and moral categories associated with the individual self-judgment in relation to crime, surveillance, and social order.
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This study aims to assess the quality of online health information about gamete donation based on a quantitative analysis of websites from fertility-clinics in Portugal. All websites providing information about gamete donation were... more
This study aims to assess the quality of online health information about gamete donation based on a quantitative analysis of websites from fertility-clinics in Portugal. All websites providing information about gamete donation were comprehensively screened in June 2017. The reliability and usability of 43 webpages were assessed through the Website Information Evaluation Instrument from the Office of Disease Prevention and Health Promotion (ODPHP). None of the webpages met the purpose, content development, and updating criteria set by the ODPHP. Several shortcomings were observed: limited accessibility for users with disabilities, lack of simplified user experiences and easy search functionality, and lack of users' interaction with content. The quality of online information on gamete donation in fertility-clinics' websites requires improvement to become user-friendly. The development of specific guidelines and periodic evaluations of these websites using sensitive instruments, merging quantitative and qualitative assessments, is required to guarantee the quality of information that aims to improve reproductive health literacy through people-centered communication.
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O DNA é visto por muitos como a “verdadeira” base da identidade humana, por se tratar de uma estrutura biológica, em princípio, única em cada indivíduo. Esta noção de “unicidade”, pilar fundamental da... more
O DNA é visto por muitos como a “verdadeira” base da identidade humana, por se tratar de uma estrutura biológica, em princípio, única em cada indivíduo. Esta noção de “unicidade”, pilar fundamental da investigação criminal e da genética forense, tem alimentado políticas de identidade da parte dos Estados modernos pela classificação e armazenamento de informação sobre “criminosos”. Neste artigo analisam-se estratégias médico-legais e burocrático-estatais de produção da identidade “genético-criminal” relacionadas com a criação, em Portugal, de uma base de dados forense de perfis de DNA. Discutem-se os impactos desta política de identidade na gestão, categorização e vigilância de indivíduos classificados como criminosos.
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In this article we aim to expand the traditional ethical issues related to the use and storage of genetic information in forensic DNA databases by exploring the Portuguese practices of informed consent in the context of DNA sample... more
In this article we aim to expand the traditional ethical issues related to the use and storage of genetic information in forensic DNA databases by exploring the Portuguese practices of informed consent in the context of DNA sample collection for forensic processing. This article focuses on three interrelated domains: the practice of volunteering to contribute to the Portuguese forensic DNA database; the portfolio of risks presented to DNA donors; and the ethical implications of requesting donors’ ethnic group among their personal data. We argue that the Portuguese forensic DNA database is an interesting case study to re-focus the ethical debate on the implications of collecting genetic information, elucidating how this activity reconfigures interpersonal relations and social hierarchy, the power of legal medicine and criminal justice, and the social construction of personal autonomy, privacy and individual rights. The practices of informed consent need to incorporate answers to risks and uncertainties posed by collecting DNA samples and DNA profiling in forensic genetic databases.
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Our aim is to contribute towards the debate about the processes through which knowledge and meanings regarding the status of human embryos circulate among experts and laymen in Portugal. Expectations and concerns expressed regarding the... more
Our aim is to contribute towards the debate about the processes through which knowledge and meanings regarding the status of human embryos circulate among experts and laymen in Portugal. Expectations and concerns expressed regarding the reliability, quality, safety and efficacy of medical technologies for assisted reproduction were assessed. This study is based on data from individual interviews that sought to explore the complexities, similarities and differences among the views and values of jurists, doctors and couples involved in in vitro fertilization treatments. It consists of a qualitative analysis on a case study. If jurists and doctors frame the status of embryos as categories of a biological, technical and/or legal nature, couples establish between themselves a variety of ontological relationships of a moral, affective and social nature. Through these, they can be represented as ethical beings, thus contrasting with the medical-legal biologization of the embryos.
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This text seeks to problematise the criteria that delimit a man and/or woman's ability to take advantage of medically assisted procreation in Portugal; it also seeks to reflect on the possibility that these elements boost the... more
This text seeks to problematise the criteria that delimit a man and/or woman's ability to take advantage of medically assisted procreation in Portugal; it also seeks to reflect on the possibility that these elements boost the (re)production of inequalities in access to reproductive health. The empirical basis of this discussion is an analysis of the legal/political and medical governance of appropriate patients, based on interviews with jurists and medical doctors. It is concluded that the main restrictions on access to these technologies are associated with a hierarchical construction of the political and social priorities that reflects the dominant ideological expectations and social relations, in particular regarding the following aspects: the privatisation and individualisation of reproductive health; the cultural imposition of heterosexuality; and the expansion in the fame of the effectiveness of techno-medicine.
Analisam-se os argumentos usados pelas organizações de ética portuguesas na regulação da investigação em embriões de origem humana. Recolheram-se documentos produzidos entre 2006 e 2010. Procedeu-se à análise temática de conteúdo, e as... more
Analisam-se os argumentos usados pelas organizações de ética portuguesas na regulação da investigação em embriões de origem humana. Recolheram-se documentos produzidos entre 2006 e 2010. Procedeu-se à análise temática de conteúdo, e as estratégias discursivas foram estudadas a partir de uma abordagem semântica da informação. Discutiram-se o estatuto do embrião abstrato (ser humano/pessoa ou artefato biológico/neoestrutura laboratorial) e os critérios que devem nortear as boas práticas e equilibrar expectativas e riscos na investigação em embriões, coexistindo argumentos heterogéneos oriundos da bioética principialista, laica e interventiva. Importa incorporar no debate as perspetivas de quem tem que decidir o destino de embriões concretos.
There is increasing emphasis in making healthcare governance participatory. Pressure to develop more sustainable and quality healthcare systems and innovative technologies is calling upon the development of policies and services centred... more
There is increasing emphasis in making healthcare governance participatory. Pressure to develop more sustainable and quality healthcare systems and innovative technologies is calling upon the development of policies and services centred on patients’ values, needs and preferences. As a result, efforts to implement patient-centred care have spurred the creation of participatory spaces where lay people are invited to have a voice on healthcare governance. This has implications for the social organisation of healthcare: managers, professionals and staff must adjust to working together with service users in planning, designing and implementing changes in healthcare. However, there has been little reflection upon the sociological conceptualisation of patient-centred care and on how public involvement can contribute to its development, as well as to the implementation of quality healthcare. This session invites contributions on these subjects, with particular attention to the evolving field of health technologies.
Research Interests: Sociology, Medical Sociology, Psychology, Health Sciences, Anthropology, and 12 moreCommunity Engagement & Participation, Health Care, Sociology of Health, Public Health, Public Participation In Governance, Health Care Management, Patient-Centered Care, Sociology of Health and Illness, Medical Sociology / Anthropology, Patient and Public Involvement/engagement, Health Technology Assessment, and Medicine and Health Sciences
In this paper we aim to discuss how Portuguese prisoners know and what they feel about surveillance mechanisms related to the inclusion and deletion of the DNA profiles of convicted criminals in the national forensic database. Through a... more
In this paper we aim to discuss how Portuguese prisoners know and what they feel about surveillance mechanisms related to the inclusion and deletion of the DNA profiles of convicted criminals in the national forensic database. Through a set of interviews with individuals currently imprisoned we focus on the ways this group perceives forensic DNA technologies. While the institutional and political discourses maintain that the restricted use and application of DNA profiles within the national forensic database protects individuals’ rights, the prisoners claim that police misuse of such technologies potentially makes it difficult to escape from surveillance and acts as a mean of reinforcing the stigma of delinquency. The prisoners also argue that additional intensive and extensive use of surveillance devices might be more protective of their own individual rights and might possibly increase potential for exoneration
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Objective This study assessed the influence of socioeconomic position at 12 years of age (SEP-12) on the variability in cesarean rates later in life. Methods As part of the Portuguese Generation XXI birth cohort we evaluated 7358 women... more
Objective This study assessed the influence of socioeconomic position at 12 years of age (SEP-12) on the variability in cesarean rates later in life. Methods As part of the Portuguese Generation XXI birth cohort we evaluated 7358 women with a sin-gleton pregnancy who delivered at five Portuguese public hospitals serving the region of Porto (April/2005–September/2006). Based on the twelve items that described socioeconomic circumstances at age 12, a latent class analysis was used to classify women's SEP-12 as high, intermediate and low. Multiple Poisson regression was used to estimate adjusted risk ratio (RR) and respective 95% confidence interval (95% CI). Results The cesarean rates in high, intermediate and low SEP-12 were, respectively, 40.9%, 37.5% and 40.5% (p = 0.100) among primiparous women; 14.2%, 11.6% and 15.5% (p = 0.04) among multiparous women with no previous cesarean and 78.6%, 72.2% and 70.0% (p = 0.08) among women with a previous cesarean. A low to moderate association between SEP-12 and cesarean rates was observed among multiparous women with a previous ce-sarean, illustrating that women from higher SEP-12 were more likely to have a surgical delivery (RR = 1.12;95%CI:1.01–1.24 comparing high with low SEP-12 and RR = 1.03:95% CI:0.94–1.14 comparing intermediate with low SEP-12) not explained by potential mediating factors. No such association was found either in primiparous or in multiparous women without a previous cesarean.
In this paper, we analyse the gender differences in the assessment of paternity testing ordered by courts of law in Portugal. A representative sample of 146 men and women who undergo paternity testing ordered by the... more
In this paper, we analyse the gender differences in the assessment of paternity testing ordered by courts of law in Portugal. A representative sample of 146 men and women who undergo paternity testing ordered by the courts per year was chosen. The results show that both women and men attributedhigh importance to the scientific evidence of paternity, although women ascribed less importance to paternity testing than men.With regard to the reasons justifying paternity tests, 98.5% of men valued their financial obligations while 90.5% of women emphasized the importance of proving to the father that they are not lying. Men were more likely to expect positive outcomes concerning the child-father relationship after learning the results of the paternity test.
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Información del artículo Direito, ciência eo corpo feminino: a prostituiçao como "objeto de fronteira".
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This article aims to analyze the characteristics in the creation and utilization of self-knowledge by physicians and... more
This article aims to analyze the characteristics in the creation and utilization of self-knowledge by physicians and "laypersons" involved in assisted reproductive technologies, based on a comparison of their respective discursive practices concerning expectations, uncertainties, and responsibilities associated with these techniques in Portugal. Physicians evaluate the (un)certainties in the application of these techniques based on naturalist and essentialist categories. However, such arguments are then used as an ideological instrument to disguise the lack of a "scientific" explanation for the failures, thereby reproducing the belief in the "miraculous" nature of scientific and technological progress. The lay understanding of the benefits and limitations of these techniques reflects a reverential attitude towards medicine and the rationalist paradigm of the biomedical perspective, although it is possible to glimpse some spaces for autonomy and resistance vis-à-vis the medical proposals. The uncertainties of these techniques are conceptualized as exceptional and intrinsic effects of medical practice, to which one is required to submit individually. Women are particularly identified as the main parties responsible for maximizing the probability of "success" with these techniques.
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In order to improve prenatal outcomes there has been a special emphasis on adequacy of prenatal care. Members of two-parent families' experience better physical and mental health than members of single-parent families. Thus, we aim... more
In order to improve prenatal outcomes there has been a special emphasis on adequacy of prenatal care. Members of two-parent families' experience better physical and mental health than members of single-parent families. Thus, we aim to evaluate the adequacy of prenatal care according to the family structure (single motherhood vs two-parent family) in a population with free universal access to prenatal care.It is based in 8001 mothers enrolled in the Portuguese birth cohort Geração XXI. Women were interviewed 24 to 72 h after delivery at public maternities in Porto, Portugal. Maternal data were collected, by questionnaire, between April 2005 and August 2006. Single mothers were single, divorced or widowed and had no partner at the delivery. Multivariate logistic regression models were fitted to quantify the association between adequate prenatal care and single motherhood.Overall, 5.5% (n=438) were single mothers, 20.1% (n=88) living solely with her children. Single mothers were more likely to have unplanned pregnancy (OR=4.55; 95%CI 1.02 to 1.76) and late care (after 12 gestational weeks, OR=1.51; 95%CI 1.15 to 2.00). Private prenatal care was significantly less frequent among single mothers (OR=0.57; 95%CI 0.42 to 0.79). The number of prenatal visits, an ultrasound in the first trimester and to take folic acid supplementation in the first trimester were not independently associated with single-motherhood.Single motherhood affects the uptake of prenatal care. Its long-term impact on children's and mother's health and well-being need to be evaluated.
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The ethical aspects of biobanks and forensic DNA databases are often treated as separate issues. As a reflection of this, public participation, or the involvement of citizens in genetic databases, has been approached differently in the... more
The ethical aspects of biobanks and forensic DNA databases are often treated as separate issues. As a reflection of this, public participation, or the involvement of citizens in genetic databases, has been approached differently in the fields of forensics and medicine. This paper aims to cross the boundaries between medicine and forensics by exploring the flows between the ethical issues presented in the two domains and the subsequent conceptualisation of public trust and legitimisation. We propose to introduce the concept of 'solidarity', traditionally applied only to medical and research biobanks, into a consideration of public engagement in medicine and forensics. Inclusion of a solidarity-based framework, in both medical biobanks and forensic DNA databases, raises new questions that should be included in the ethical debate, in relation to both health services/medical research and activities associated with the criminal justice system.
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Place of birth has a role on labour and delivery. In Portugal, the WHO guidelines regarding parents' choice of the place of birth coexists with an official hospital based public perinatal care system. This study aimed to assess the... more
Place of birth has a role on labour and delivery. In Portugal, the WHO guidelines regarding parents' choice of the place of birth coexists with an official hospital based public perinatal care system. This study aimed to assess the association of maternal demographic, social and obstetrical characteristics with the option for a place of birth outside the hospital catchment area,
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The objective of this study was to assess the quality of the contents related to screening in a sample of websites providing information on breast and prostate cancer in the Portuguese language. The first 200 results of each... more
The objective of this study was to assess the quality of the contents related to screening in a sample of websites providing information on breast and prostate cancer in the Portuguese language. The first 200 results of each cancer-specific Google search were considered. The accuracy of the screening contents was defined in accordance with the state of the art, and its readability was assessed. Most websites mentioned mammography as a method for breast cancer screening (80%), although only 28% referred to it as the only recommended method. Almost all websites mentioned PSA evaluation as a possible screening test, but correct information regarding its effectiveness was given in less than 10%. For both breast and prostate cancer screening contents, the potential for overdiagnosis and false positive results was seldom addressed, and the median readability index was approximately 70. There is ample margin for improving the quality of websites providing information on breast and prostate...
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ABSTRACT Personalized and regenerative medicine capitalizes on genomics and hope in order to sustain public support to embryo research. This paper analyses the scientific issues explored on embryo research projects funded by the... more
ABSTRACT Personalized and regenerative medicine capitalizes on genomics and hope in order to sustain public support to embryo research. This paper analyses the scientific issues explored on embryo research projects funded by the Foundation for Science and Technology between 2000 and 2009, based on the following criteria: year of application; scientific area; main contractor; participating institutions; allocated funding; and health issue studied. Funding was awarded for 34 embryo research projects, of which 65% were undertaken in health and biological sciences. The most studied health issues are concerned with phenomena and processes, anatomy and organisms. Embryo research uses human and public health as an argument to justify funding and the expectations regarding embryonic stem cell research and cell therapies.