Dual consent? Donors' and recipients' views about involvement in decision-making on the use of embryos created by gamete donation in research

Background Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients about who should take part in consent processes for the use of EGDs in research. Methods From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes (response rate: 76%). Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and recipients. Results The majority of participants (74.6% of donors and 65.7% of recipients) were willing to donate embryos for research. Almost half of the donors (48.6%) and half of the recipients (46.9%) considered that a dual consent procedure is desirable. This view was more frequent among employed recipients (49.7%) than among non-employed (21.4%). Donors were less likely to believe that only recipients should be involved in giving consent for the use of EGDs in research (25.0% vs. 41.7% among recipients) and were more frequently favourable to the idea of exclusive donors' consent (26.4% vs. 11.4% among recipients). Conclusions Divergent views on dual consent among donors and recipients indicate the need to develop evidence-based and ethically sustainable policies and guidelines to protect well-being, autonomy and reproductive rights of both stakeholder groups. More empirical research and further theoretical normative analyses are needed to inform people-centred policy and guidelines for shared decision-making concerning the use of EGDs for research

Contents about gamete donation on IVF clinics websites: how to assure that the information provided meets people’s needs?

The websites of in-vitro fertilization (IVF) clinics have become privileged vehicles for search and provision of information by gamete donors and recipients seeking for fertility treatments with donated eggs and sperm, as well as relevant sources of psychosocial support for patients. The importance of ensuring quality of health information made available online to the public is consensually recognized, and there are different instruments to assess the formal quality of health-related websites. However, such instruments are only based on quantitative approaches and do not evaluate the accuracy of the information on specific topics.info:eu-repo/semantics/publishedVersio

A public health approach to patient-centredness in embryo research

Looking at patient-centredness through the lens of public health is needed for responsible governance of human embryo research. This study aimed to explore patients’ experiences and perspectives on information about and consent for research with human embryos, to sustain the development of policies and guidelines.info:eu-repo/semantics/publishedVersio

A patient-centred approach to embryo donation for research

Most couples enrolled in Assisted Reproductive Technologies’ (ART) treatments need to make decisions regarding embryo disposition, as they are asked to sign a consent form about embryo donation for research. Beyond the current assessment of patients’ individual experiences and levels of satisfaction with care delivery, we argue that it is crucial to provide stakeholders in health systems with feedback on patients’ views about legal and regulatory frameworks. Such knowledge will lend credence and robustness to the consent that the couples give, and will contribute to the implementation of informed relational ethics in clinical practice and to improved patient-centredness in the field of ART

Interviewing parental couples together: Interaction between gender and occupation beyond child’s birth weight

Challenging the under-representation of fathers in the literature about parenthood in sociotechnical environments, recent health studies have resorted more often to couple interviews. Undertaking qualitative health-related research with heterosexual couples raises several ethical and methodological challenges regarding data collection and analysis. However, there is a scarcity of both population-specific guidelines and literature grounded on researchers’ experiences in this field.info:eu-repo/semantics/publishedVersio

Concerns with educating the public about donating and receiving gametes

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Anonimato, acesso e partilha de informação na doação de gâmetas em Portugal: como se posicionam os profissionais em medicina da reprodução?

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Ethical and methodological dilemmas in mixed-methods research: an empirically-based perspective about gamete donation

Research in the field of gamete donation has focused mostly on the dichotomy between the resource-poor countries/conditions of the donors and the richer Western countries’ recipients/hosting research projects. Furthermore, most independent studies focus only on the group of donors, with a shortage of original empirical research using mixed-methods. Based on a mixed-methods study that aims to understand how social, cultural and economic characteristics intertwine with the health experiences, knowledge and identities of those involved in gamete donation (i.e. donors, recipients and health professionals), we will explore the ethical and methodological challenges that emerged in connection to fieldwork experiences associated with anonymity, confidentiality, informed consent, researchers’ gender and researchers’ potential impact on the participant and vice versa.info:eu-repo/semantics/publishedVersio

Antenatal paternal adjustment and paternal attitudes after infertility treatment

STUDY QUESTION: Do mode of conception [ART versus Natural (NC)] and depression have an interactive effect on antenatal paternal adjustment and paternal attitudes? SUMMARY ANSWER: Depression increased the negative effect of ART on antenatal paternal adjustment and paternal attitudes, specifically on antenatal marital relationship satisfaction. WHAT IS KNOWN ALREADY: Research on antenatal paternal adjustment and paternal attitudes after ART is scarce and has produced inconsistent results. STUDY DESIGN, SIZE, DURATION: This cross-sectional study assessed 197 primiparous men (71 ART and 126 NC) during their partner’s second trimester of gestation. PARTICIPANTS/MATERIALS, SETTING, METHODS: Participants were derived from three larger longitudinal studies recruited at public Health Services in Northern Portugal. All men, for who this was their first child and had filled in a socio-demographic questionnaire, measures of depression and anxiety, and antenatal paternal adjustment and paternal attitudes were selected. MAIN RESULTS AND THE ROLE OF CHANCE: An interaction effect of mode of conception and depression was found on antenatal paternal adjustment and paternal attitudes. ART men showing high depressive symptomatology had lower antenatal marital relationship satisfaction than ART men showing low depressive symptomatology and NC men showing high or low depressive symptomatology. LIMITATIONS, REASONS FOR CAUTION: Due to the cross-sectional design of this study and the small sample size in the depression groups, the findings should be interpreted with caution. WIDER IMPLICATIONS OF THE FINDINGS: Specialized psychological support should be available for ART men screened with high depressive symptomatology as part of routine prenatal care appointments.This study was conducted at Psychology Research Centre (UID/PSI/ 01662/2013), University of Minho, and at the Unidade de Investigação em Epidemiologia—Instituto de Saúde Pública da Universidade do Porto (EPIUnit) (UID/DTP/04750/2013). It was supported by the Foundation for Science and Technology (Portuguese Ministry of Education and Science) through National funds and co-financed by FEDER through COMPETE2020 under the PT2020 Partnership Agreement (POCI-01-0145-FEDER-007653) and through the Operational Programme Factors of Competitiveness–COMPETE within the project ‘Health, Governance and Accountability in Embryo Research: Couples’ Decisions About the Fates of Embryos’ (FCOMP-01-0124-FEDER-014453), the FCT Investigator contract IF/01674/2015 and PhD grants (SFRH/BD/115048/2016, SFRH/BD/75807/2011 and SFRH/BD/40146/2007).info:eu-repo/semantics/publishedVersio

Exposição das crianças ao fumo ambiental do tabaco em casa e no carro

A exposição das crianças ao Fumo Ambiental do Tabaco (FAT) está associada a graves problemas para a sua saúde, tais como maior risco de infeções agudas das vias aéreas inferiores, maior probabilidade de infeções respiratórias de repetição, risco acrescido de infeções nos ouvidos, indução e exacerbação de asma e enfisema pulmonar. A exposição ao FAT é especialmente grave para as crianças asmáticas. Esta exposição ocorre, na maioria dos casos, quando os pais e/ou outro convivente fumam no domicílio e/ou no carro