Helena Machado

• PhD and Habilitation
• Professor (Full) at University of Minho

The Forensic Databases Advisory Board (FDAB), an independent board that assists the International Society for Forensic Genetics (ISFG), has presented a First Report on ethical aspects of the following Forensic Genetic Frequency Databases (FGFD): EMPOP, STRidER and YHRD. The FDAB designed an ethical framework to evaluate the content of these FGFD, a...

Background: As the SARS-CoV-2 virus created a global pandemic and rapidly became an imminent threat to the health and lives of people worldwide, the need for a vaccine and its quick distribution among the population was evident. Due to the urgency, and on the back of international collaboration, vaccines were developed rapidly. However, vaccination...

Research about science and publics in the COVID-19 pandemic often focuses on public trust and on identifying and correcting public attitudes. Drawing on qualitative interviews with 209 residents in six countries—Austria, Bolivia, Germany, Italy, Mexico, and Portugal—this article uses the concept of performativity to explore how participants underst...

This scoping review examines the research landscape about publics’ views on the ethical challenges of AI. To elucidate how the concerns voiced by the publics are translated within the research domain, this study scrutinizes 64 publications sourced from PubMed® and Web of Science™. The central inquiry revolves around discerning the motivations, stak...

The promotion of health literacy was a key public health strategy during the COVID-19 pandemic. However, the role of social networks and relationships for support with health literacy-related tasks in the context of the COVID-19 pandemic is scarcely understood. Moving beyond traditional notions of health literacy, which focus on individual skills a...

There is a growing tendency toward the introduction of Big Data in police departments to improve the prevention and investigation of crime. However, there is little systematic knowledge about the perspectives of professionals in police forces regarding this technology. This article fills this gap by presenting a scoping review that systematizes emp...

As narrativas em torno da aplicação de técnicas de Big Data no turismo prometem proporcionar um mapeamento mais rigoroso de tendências turísticas e possibilitar uma resposta mais eficaz às necessidades dos turistas. Contudo, o tecno-otimismo que rodeia esta prática tecnológica tende a comprometer a capacidade de avaliar riscos e implicações sociais...

BACKGROUND Vaccination has been successful tool in the fight against infectious diseases for a long time. Since SARS-CoV-2 virus created global pandemic and has become imminent threat to health and lives of people, the need for creation of vaccine and its implementation among population was evident. Due to the urgent matter and joint forces of expe...

Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefit...

The tourism sector has been significantly impacted by the COVID-19 pandemic, making it one of the most affected economic areas worldwide. Simultaneously, the pandemic created contexts for the expansion and consolidation of trends already experienced in the recent past, namely the increasing adaptation of tourism to the digital society. One prominen...

Objectives The aim of this study was to explore concerns and coping mechanisms during the first national COVID-19 lockdown in Portugal. The general population provided statements via an open comment box as part of an online prospective study. Study design Internet-based open cohort study. Methods Individuals aged ≥16 years were eligible to partic...

Big Data na previsão criminal e o seu potencial para desencadear efeitos de desempoderamento, entendidos como consequências sociais negativas sobre indivíduos, grupos e sociedades. Considerando as linhas orientadoras da inovação responsável, argumentamos sobre a necessidade de promover um debate interdisciplinar e colaborativo sobre a implementação...

O presente capítulo aborda as tendências gerais dos impactos provocados no setor do turismo através de tecnologias que permitem a acumulação e utilização de grandes volumes de dados, comumente, conhecida por “Big Data”. Um mapeamento das principais linhas do debate académico sobre Big Data no turismo permite constatar a prevalência de três temática...

Open Access resource available for research purposes. The data collected in this dataset are narratives exploring public policies, attitudes, individual behaviors, and the collective experiences of the involved communities regarding vaccination during the COVID-19 pandemic. The narratives were written by the members of the interdisciplinary resear...

Investigative genetic genealogy (IGG) is a technique for identifying criminal suspects that involves uploading a crime scene DNA profile to one or more genetic genealogy databases to identify a criminal offender’s genetic relatives and, eventually, locating the offender within the family tree in both cold and active law enforcement cases. Law enfor...

In the summer of 2021, European governments removed most NPIs after experiencing prolonged second and third waves of the COVID-19 pandemic. Most countries failed to achieve immunization rates high enough to avoid resurgence of the virus. Public health strategies for autumn and winter 2021 have ranged from countries aiming at low incidence by re-int...

Big Data is seen as an increasingly important tool to support policing activities, define security governance policies and assist criminal investigations. Although significant literature has explored the predictive capabilities of Big Data, there has been less focus on the uses of Big Data in criminal investigations, focused on detection and appreh...

The SARS-CoV-2 omicron variant is spreading rapidly in Europe, even in countries with high levels of vaccination, including those that have moved quickly with booster vaccinations. We write as health professionals and researchers from across Europe to call for concerted European action to address the immediate threat and to move rapidly to develop...

The so-called Prüm system made mandatory for all EU Member States to join the pan-European network for the exchange of fingerprints, DNA profiles and motor vehicle information for stepping up on cross-border cooperation, particularly in combating terrorism and cross-border crime. Taking into consideration the number of DNA profiles archived in the...

Por via de uma análise interpretativa e compreensiva do Regulamento Geral da Proteção de Dados 2016/679 e da Diretiva 2016/680, complementada por uma análise de discursos da Comissão Europeia que enquadram esta legislação, este texto reflete sobre o "Imaginário Europeu" em torno de Big Data, tecnologias e proteção de dados no contexto da investigaç...

Background The implications of sharing one's health data are far-reaching. Potential applications of health data range from the delivery of treatments tailored to individuals' characteristics to improvements in public health, while also posing concerns about privacy, social justice and equity. Making informed decisions about health data sharing thu...

Genetic Surveillance and Crime Control presents a new empirical and conceptual framework for understanding trends of genetic surveillance in different countries in Europe and in other jurisdictions around the world. The use of DNA or genome for state-level surveillance for crime governance is becoming the norm in democratic societies. In the post-D...

Este livro aborda as relações entre ciência, cultura e política a partir do olhar sociológico sobre as implicações societais e éticas da presença da genética forense na prevenção da criminalidade e terrorismo na União Europeia. As contingências, controvérsias e expectativas dirigidas à genética forense num contexto híbrido, em que se cruzam agendas...

How will the coronavirus disease 2019 (COVID-19) pandemic develop in the coming months and years? Based on an expert survey, we examine key aspects that are likely to influence COVID-19 in Europe. The future challenges and developments will strongly depend on the progress of national and global vaccination programs, the emergence and spread of vari...

How will the coronavirus disease 2019 (COVID-19) pandemic develop in the coming months and years? Based on an expert survey, we examine key aspects that are likely to influence the COVID-19 pandemic in Europe. The challenges and developments will strongly depend on the progress of national and global vaccination programs, the emergence and spread o...

[Chinese version of the book "Forensic Genetics in the Governance of Crime"]. This open access book uses a critical sociological perspective to explore contemporary ways of reformulating the governance of crime through genetics. Through the lens of scientific knowledge and genetic technology, Machado and Granja offer a unique perspective on current...

Introduction International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding h...

Este livro mobiliza uma perspectiva sociológica crítica para explorar modos contemporâneos da governança da criminalidade por via da genética forense. Helena Machado e Rafaela Granja abordam um conjunto de temas útil à compreensão do lugar e do papel da genética nos sistemas de justiça criminal, bem como os desafios sociais, éticos e políticos subj...

This article is about the governance of expectations of forensic DNA phenotyping (FDP) innovations in Germany used for the prediction of human externally visible traits such as eye, hair, and skin color, as well as biological age and biogeographic ancestry. In 2019, FDP technologies were regulated under the label "extended DNA analysis". We focus o...

Wearing face masks is recommended as part of personal protective equipment and as a public health measure to prevent the spread of coronavirus disease 2019 (COVID-19) pandemic. Their use, however, is deeply connected to social and cultural practices and has acquired a variety of personal and social meanings. This article aims to identify the divers...

The data collected in this dataset are narratives exploring public policies, attitudes, individual behaviors, and the collective experiences of the affected communities regarding face mask wearing at the onset of the COVID-19 pandemic. The narratives were written by the members of the interdisciplinary research network Navigating Knowledge Landscap...

Este volume reúne um conjunto de leituras que apresentam a experiência da crise como uma experiência transversal. É esse o ponto de originalidade desta obra, que reúne contributos de vários membros da comunidade do Instituto de Ciências Sociais da Universidade do Minho. O tema da crise tem sido apresentado na produção científica em abordagens espec...

This open access book explores how biometric data is increasingly flowing across borders in order to limit, control and contain the mobility of selected people, namely criminalized populations. It introduces the concept of bio-bordering, using it to capture reverse patterns of bordering and ordering practices linked to transnational biometric data...

Public involvement in the governance of epidemiological and public health studies can foster needs-driven research, enhance participants’ recruitment, reduce attrition and improve the quality of and ethics in research and surveillance. However, it can also reinforce health inequalities if it fails to ensure public representation across socioeconomi...

Purpose Regulation of payment to gamete donors varies substantially across countries. The development of an ethically sustainable governance system of payments in gamete donation demands that the preferences of different stakeholders be heard. This study intends to contribute to improving the understanding of payment to gamete donors by analysing t...

Forensic DNA Phenotyping (FDP) is a set of techniques that aim to infer externally visible characteristics in humans – such as eye, hair and skin color – and biogeographical ancestry of an unknown person, based on biological material. FDP has been applied in various jurisdictions in a limited number of high-profile cases to provide intelligence for...

Forensic DNA phenotyping is a genetic technology that might be used in criminal investigations. Based on DNA samples of the human body found at crime scenes, it allows to infer externally visible characteristics (such as eye, hair and skin colour) and continental-based biogeographical ancestry. By indicating the probable visible appearance of a cri...

Background Systems for large-scale data exchanges are playing a pivotal role in the governance, surveillance, and social control of criminality in different parts of the world. Analysis This article explores the case study of the Prüm system, which is a technological system for the exchange of DNA data among several European Union (EU) countries. M...

This open access book uses a critical sociological perspective to explore contemporary ways of reformulating the governance of crime through genetics. Through the lens of scientific knowledge and genetic technology, Machado and Granja offer a unique perspective on current trends in crime governance. They explore the place and role of genetics in cr...

Assiste-se hoje à crescente visibilidade do designado Big Data. Trata-se de uma técnica que agrega conjuntos massivos de dados, manuseando um volume assinalável de informação, que é analisado a uma velocidade sem precedentes e em tempo real. Enquanto fenómeno social, apresenta três vertentes: a interação entre tecnologia (maximização do poder compu...

Under EU Law, Member States are compelled to engage in reciprocal automated forensic DNA profile exchange within the so-called Prüm system. Presently, 25 operational EU Member States exchange DNA data within the Prüm system to combat terrorism and cross-border crime. This article discusses the perceived risks and benefits of the Prüm system on the...

No seu belo ensaio A Ideia de Europa, George Steiner romanticamente eterniza e descreve uma Europa que se enaltece como multicultural, cosmopolita, solidária e sem fronteiras. Mas esta é também uma Europa que se confronta com os fantasmas do seu passado, perante os atentados que temos testemunhado em França, em Espanha, na Bélgica, no Reino Unido,...

This article explores the fluid and flexible forms of constructing suspicion, which take shape in transnational governance of crime through forensic DNA databases. The empirical examples are the views of professionals engaged with the so-called Prüm system. This technological identification system was developed to enable DNA data exchange across EU...

Este estudo pretende avaliar a qualidade da informação online sobre doação de gametas em sites de clínicas de fertilidade em Portugal. Todos os sites com informação sobre doação de gametas foram escrutinados em junho de 2017. A confiabilidade e usabilidade de 43 páginas web foram avaliadas usando o instrumento Website Information Evaluation do Offi...

Background: Forensic DNA testing is a powerful tool used to identify, convict, and exonerate individuals charged of criminal offenses, but there are different views on its benefits and risks. Knowledge about public views on forensic DNA testing applied in the criminal field is socially valuable to practitioners and policymakers. This paper aims to...

The exchange of forensic DNA data is seen as an increasingly important tool in criminal investigations into organised crime, control strategies and counter-terrorism measures. On the basis of a set of interviews with police professionals involved in the transnational exchange of DNA data between EU countries, this paper examines how forensic DNA ev...

The United Kingdom has a long tradition of collecting and storing DNA data for criminal identification purposes. The development of the UK National Criminal Intelligence DNA Database has been accompanied by public controversies. Building on recent developments in Science and Technology Studies on public engagement, we elaborate on the concept of em...

Resumo: Conhecer a discussão em torno dos desafios sociais e éticos da doação de gametas é fundamental para a boa governança das técnicas de reprodução assistida. Neste artigo, analisam-se os tópicos que orientaram o debate nas organizações de ética portuguesas, discutindo as suas conexões com os temas abordados internacionalmente. Para tal, em mar...

Familial searching is a technology that detects genetic relatedness. The term is generally used to refer to searches conducted in criminal DNA databases to identify criminal suspects through their connection with relatives. Beyond criminal investigation purposes, familial searching might also be used for the identification of unknown bodies and mis...

The use of photography in representing the criminal body has long been a focus of interest in the social sciences, especially so when exploring the historical evolution of criminal identification practices. By contributing to the emerging field of visual criminology, this article explores current practices around photography of prisoners in the eve...

A aplicação da genética forense na identificação criminal, tornada expressiva pela expansão de bases de dados estatais contendo milhares de perfis genéticos, tem suscitado ampla discussão bioética. O debate bioético tradicional tem focado a necessidade de equilíbrio entre o reforço dos poderes do Estado, em nome da segurança pública, e o contrapont...

Under EU Law, Member States are compelled to engage in reciprocal automated forensic DNA profile exchange for stepping up on cross-border cooperation, particularly in combating terrorism and cross-border crime. The ethical implications of this transnational DNA data exchange are paramount. Exploring what the concept of ethics means to forensic prac...

This qualitative study analyzed couples’ perceptions about the factors that contextualize informed consent regarding embryo cryopreservation, through 34 semi-structured interviews, in Portugal. Data were analyzed according to the principles of grounded theory. The results revealed the following needs: timely provision of detailed, accurate and inte...

This paper presents a study of the 5-year operation (2011–2015) of the transnational exchange of forensic DNA data between Member States of the European Union (EU) for the purpose of combating cross-border crime and terrorism within the so-called Prüm system. This first systematisation of the full official statistical dataset provides an overall as...

http://hdl.handle.net/10316/80746

European regulations concerning the donation and distribution of human cells set out standards for appropriate technical and laboratory measures, scientific and organizational requirements, and the ethical principles that should guide donation (e.g. no payment, altruism, equity, transparency). Nevertheless, reproductive cells have been transformed i...

Face ao incremento da mobilidade de pessoas no espaço da União Europeia (UE) e a uma escala global, a criminalidade transnacional apresenta-se, cada vez mais, como uma fonte de preocupação política. De forma a dar resposta a potenciais riscos para a segurança pública, tecnologias forenses, como o DNA, têm sido mobilizadas no âmbito de práticas gove...

By focusing on genetic surveillance technologies used to fight crime, we want to explore ethical concerns that bring challenges to a responsible governance of these technological innovations. Responsible governance faces the challenge of balancing between potential risks and benefits of surveillance – which are conceived differently in each country...

Os recentes ataques em Paris reacenderam nas agendas políticas em vários Estados-membros da União Europeia a necessidade de aprofundar a cooperação transfronteiriça de natureza policial e judiciária. Neste cenário, ganharam renovada legitimidade no espaço público e político a implementação de redes e sistemas tecnológicos sofisticados que visam con...

Background: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. Thi...

Introduction: Decision-making on embryo disposition is a source of distress and is subject to change over time. This paper analyses in vitro fertilization couple's willingness to donate cryopreserved embryos for research from 15 days after embryo transfer to 12 months later, taking into account the influence of psychosocial, demographic and reprod...

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...

Between 2011 and 2012, 213 heterosexual couples undergoing fertility treatments in a Portuguese public fertility centre were systematically recruited to assess factors associated with willingness to donate embryos for research. Data were collected by questionnaire. Most couples (87.3%; 95% CI 82.1 to 91.5) were willing to donate embryos for researc...

In a recent special issue of the journal on new trends in forensic genetics, Manfred Kayser contributed a review of developments, opportunities and challenges of forensic DNA phenotyping (FDP). In his article he argues that FDP technologies—such as determining eye, hair and skin color—should be considered as akin to a "biological witness" with the...

There is scarce knowledge about the influence of the professional group, education, and age on public perspectives on the risks and benefits of forensic DNA databases. Based on data collected through an online questionnaire applied to 628 individuals in Portugal, this research fills that gap. More than three quarters of the respondents believed tha...

The purpose of this study was to compare the sociodemographic and psychosocial characteristics reported by female in vitro fertilization (IVF) patients interviewed alone or with the partner in heterosexual couples. During 12 months (2011–2012), all patients undergoing IVF or intracytoplasmic sperm injection at one public reproductive medicine unit,...

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 explor...