1,720,981 research outputs found
Regulating the communication of genetic risk information: the Italian legal approach to questions of confidentiality and disclosure.
No full textCommunication of genetic risk is a complex process in which the rights of the individual and those of relatives may conflict with regard to the information revealed by DNA testing. If patients who participate in clinical genetic testing refuse to share their genetic information with at-risk relatives, healthcare professionals need to reach a proper ethical balance between the right of individual patients regarding the confidentiality of their genetic test result and the right of families to be informed about their genetic risk. Rules and legislation in most countries generally protect the confidentiality of medical information but allow limited disclosure of genetic test results without the patient's consent in specific cases when certain conditions are met. The aim of this paper is to draw attention to how Italian policymakers have attempted to balance protection of autonomy and confidentiality, and protection of health by means of a hybrid instrument. Furthermore, we show that some of the requirements of that instrument depart from the most widely recognized standards for non-consensual disclosure of genetic risk information, while at the same time allowing an unusually high level of discretion to healthcare professionals involved in genetic counseling and testing
Embedding ethics in the design of culturally competent socially assistive robots
No full textResearch focusing on the development of socially assistive robots (SARs) that will promote the health, well-being and quality of life of older persons and of their caregivers has been growing in recent years. This growth has prompted a great deal of ethical reflection on the future of SARs in care, but there is an increasing awareness of the divide that often separates the settings in which ethics research and debate take place from those where technological innovation is practiced.
Different frameworks have been proposed to handle the ethical dimension of technology from within the design and development process, including Value Sensitive Design (VSD). VSD has been defined as a theoretically grounded approach to the design of technology that accounts for human values in a principled and comprehensive manner throughout the design process.
Inspired in part by VSD, we have developed a process geared towards embedding ethics at the core of CARESSES, an international multidisciplinary project that aims to design the first culturally competent SAR for the care of older adults. Here we describe that process, including how we utilized qualitative thematic analysis to extract key ethical concepts from relevant ethical guidelines (Alzheimer Europe's Guidelines and Position on the Ethical Use of Assistive Technologies for/by People with Dementia), and how we applied those concepts to the scenarios that describe how the CARESSES robot will interact with individuals belonging to different cultures and provide the grounding for its cultural competence. This straightforward approach highlights the ethical implications of the robot’s behavior during the design process and thus it enables researchers to identify and engage with ethical problems proactively, rather than restrict ethics to retrospective assessments. With suitable modifications, it may be usefully applied in other research projects involving SARs
Developing a questionnaire to explore lay people’s preferences for communicating hereditary conditions within families: insights from a cognitive interview study
Full text linkCognitive interviews are a valuable qualitative method for developing and refining survey instruments, particularly on
complex topics such as genetic health. They help address misunderstandings between intended meanings and respondent
interpretations, enhancing data validity and ensuring comprehensibility. This study aimed to refine a questionnaire exploring
the attitudes and preferences of the Italian general population regarding the communication of potential hereditary conditions
within families. Through iterative testing, issues related to questionnaire instructions, question wording, and the sensitive
nature of the topics were identified and addressed. Most concerns emerged in the first round of cognitive interviews, while
the second round only required minor refinements. The qualitative analysis identified four key themes reflecting participants’
challenges in understanding genetic information: (1) difficulties with genetic terminology, including gene names and scientific
jargon, which induced anxiety and hindered comprehension; (2) ambiguities surrounding the terms "genetic testing" and
"family," with confusion about the nature of genetic testing and the scope of "family" in genetic contexts; (3) misinterpretations
of "genetic risk" as an existing disease diagnosis rather than a probabilistic concept, leading to misunderstandings about
the implications of genetic predisposition; and (4) conflation of "authorization" and "responsibility" in genetic communication,
further complicated by uncertainty regarding privacy and confidentiality. Findings from this study informed targeted
modifications to the questionnaire to enhance its clarity and accessibility. Our study highlights the importance of cognitive
interviewing in refining survey tools on genetic communication, ensuring that such instruments effectively capture public
perceptions and facilitate informed decision-making
ANALISI GENOME-WIDE PER LA SUSCETTIBILITÀ AL MELANOMA: NUOVI LOCICHE CONFERMANO IL RUOLO DEI GENI DELLA PIGMENTAZIONE
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Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Development and Validation of an Italian Adaptation of the Psychosocial Aspects of Hereditary Cancer Questionnaire
No full textIndividuals that attend cancer genetic counseling may experience test-related psychosocial problems that deserve clinical attention. In order to provide a reliable and valid first-line screening tool for these issues, Eijzenga and coworkers developed the Psychosocial Aspects of Hereditary Cancer (PAHC) questionnaire. The aim of this work was to develop an Italian adaptation of the PAHC (I-PACH). This prospective multicenter observational study included three stages: (1) development of a provisional version of the I-PAHC; (2) pilot studies aimed at testing item readability and revising the questionnaire; and (3) a main study aimed at testing the reliability and validity of the final version of the I-PAHC with the administration of a battery comprising measures of depression, anxiety, worry, stress, and life problems to 271 counselees from four cancer genetic clinics. Adapting the original PAHC to the Italian context involved adding two further domains and expanding the emotions domain to include positive emotions. While most of the items were found to be easy to understand and score, some required revision to improve comprehensibility; others were considered irrelevant or redundant and therefore deleted. The final version showed adequate reliability and validity. The I-PAHC provides comprehensive content coverage of cancer genetic-specific psychosocial problems, is well accepted by counselees, and can be considered a sound assessment tool for psychosocial issues related to cancer genetic counseling and risk assessment in Italy
Appropriate Similarity Measures for Author Cocitation Analysis
Full text linkWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
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