Mapping ethical, legal, and social implications (ELSI) of fertility preservation.

RESEARCH QUESTION: The study examines the ethical, legal, and social implications of fertility preservation, highlighting its importance across oncofertility, elective egg freezing, and posthumous assisted reproduction, as well as its impact on transgender individuals undergoing gender-affirming surgeries. DESIGN: A comprehensive analysis of 600 articles, focusing on a diverse range of disciplines, including bioethics, psychology, and sociology, to explore public and healthcare professionals' knowledge, patient experiences, and regulatory constraints. RESULTS: The body of literature is growing, indicating increasing recognition of FP's significance. Key themes included the centrality of counseling and informed decision-making, especially in oncofertility and EEF, and ethical debates surrounding informed consent and the autonomy of involved individuals. The analysis underscored a western-centric bias in current research, emphasizing the need for more inclusive and culturally sensitive studies. CONCLUSIONS: The study calls for a nuanced understanding of FP, advocating for policies that consider ethical, cultural, and social dimensions. It suggests the necessity for interdisciplinary research to address identified gaps, particularly in understanding non-Western perspectives and ensuring equitable access to FP services globally. Moreover, the review emphasizes the importance of integrating patient-centric approaches and ethical frameworks to guide FP practices and policies, ensuring they respect diverse values and meet individuals' needs.

Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT).

PURPOSE: Preimplantation Genetic Testing (PGT) has attracted considerable ethical, legal, and social scrutiny, but academic debate often fails to reflect clinical realities. METHODS: Addressing this disconnect, a review of 506 articles from 1999 to 2019 across humanities and social sciences was conducted to synthesize the Ethical, Legal, and Social Implications (ELSI) of PGT. This review mined PubMed, WoS, and Scopus databases, using both MeSH terms and keywords to map out the research terrain. RESULTS: The findings reveal a tenfold increase in global research output on PGT's ELSI from 1999 to 2019, signifying rising interest and concern. Despite heightened theoretical discourse on selecting "optimal" offspring, such practices were scarcely reported in clinical environments. Conversely, critical issues like PGT funding and familial impacts remain underexplored. Notably, 86% of the ELSI literature originates from just 12 countries, pointing to a research concentration. CONCLUSION: This review underscores an urgent need for ELSI research to align more closely with clinical practice, promoting collaborations among ethicists, clinicians, policymakers, and economists. Such efforts are essential for grounding debates in practical relevance, ultimately steering PGT towards ethical integrity, societal acceptance, and equitable access, aiming to harmonize PGT research with real-world clinical concerns, enhancing the relevance and impact of future ethical discussions.

Using an Individual-Centered Approach to Gain Insights From Wearable Data in the Quantified Flu Platform: Netnography Study.

BACKGROUND: Wearables have been used widely for monitoring health in general, and recent research results show that they can be used to predict infections based on physiological symptoms. To date, evidence has been generated in large, population-based settings. In contrast, the Quantified Self and Personal Science communities are composed of people who are interested in learning about themselves individually by using their own data, which are often gathered via wearable devices. OBJECTIVE: This study aims to explore how a cocreation process involving a heterogeneous community of personal science practitioners can develop a collective self-tracking system for monitoring symptoms of infection alongside wearable sensor data. METHODS: We engaged in a cocreation and design process with an existing community of personal science practitioners to jointly develop a working prototype of a web-based tool for symptom tracking. In addition to the iterative creation of the prototype (started on March 16, 2020), we performed a netnographic analysis to investigate the process of how this prototype was created in a decentralized and iterative fashion. RESULTS: The Quantified Flu prototype allowed users to perform daily symptom reporting and was capable of presenting symptom reports on a timeline together with resting heart rates, body temperature data, and respiratory rates measured by wearable devices. We observed a high level of engagement; over half of the users (52/92, 56%) who engaged in symptom tracking became regular users and reported over 3 months of data each. Furthermore, our netnographic analysis highlighted how the current Quantified Flu prototype was a result of an iterative and continuous cocreation process in which new prototype releases sparked further discussions of features and vice versa. CONCLUSIONS: As shown by the high level of user engagement and iterative development process, an open cocreation process can be successfully used to develop a tool that is tailored to individual needs, thereby decreasing dropout rates.