42 research outputs found

    Judging in the Genomic era: judges’ genetic knowledge, confidence and need for training

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    Genetic information is increasingly used in many contexts, including health, insurance, policing and sentencing – with numerous potential benefits and risks. Protecting from the related risks requires updates to laws and procedures by justice systems. These updates depend to a large extent on what the key stakeholders – the judiciary – know and think about the use of genetic information. This study used a battery of 25 genetic knowledge items to collect data from 73 supreme court judges from the same country (Romania) on their knowledge of genetic information. Their responses were compared with those of two other groups: lawyers (but not judges; N = 94) and nonlawyers (N = 116) from the same country. The data were collected at approximately the same time from the three groups. The judges’ results were also compared to the results obtained from a general population data collection (N = 5310). The results showed that: 1) judges had overall better knowledge of genetics than the other groups, but their knowledge was uneven across different genetic concepts; 2) judges were overall more confident in their knowledge than the other two groups, but their confidence was quite low; and 3) the correlation between knowledge and confidence was moderate for judges, weak for lawyers and not significant for non-lawyers. Finally, 100% of the judges agreed that information on gene-environment processes should be included in judges’ training. Increasing genetic expertise of the justice stakeholders is an important step towards achieving adequate legal protection against genetic data misuse

    Communicating genetic information: a difficult challenge for future pediatricians

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    <p>Abstract</p> <p>Background</p> <p>The role of the pediatrician as genetic counselor is ideal because pediatricians have medical knowledge and experience with genetic disorders (e.g. Down syndrome). Moreover, pediatricians can provide comprehensive care in a medical home to patients with genetic disorders. However, changes in the curriculum of the pediatric resident are necessary to address the future challenges of effectively communicating genetic information to patients. The objective of this study was to explore these challenges and make recommendations for training to adequately prepare pediatricians for their future role as genetic counselors.</p> <p>Methods</p> <p>Three reviewers independently searched PubMed, OVID, and Medline databases to identify articles describing the challenges of communicating genetic information to patients, published from 1960 to December 2005. After the publications were identified and reviewed, four major areas of interest were identified in order to categorize the findings.</p> <p>Results</p> <p>Twenty-five publications were identified during the literature search. From the review, the following categories were selected to organize the findings: (1) Inherent difficulties of communicating and comprehending genetic information; (2) Comprehension of genetic information by pediatricians; (3) Genetics training in residency programs; and (4) The effect of genetic information on the future role of pediatricians and potential legal implications.</p> <p>Conclusion</p> <p>Pediatricians and residents lack essential knowledge of genetics and communication skills for effective counseling of patients. The review indicated that successful communication of genetic information involves a number of important skills and considerations. It is likely that these skills and considerations are universally required for the communication of most complex specialized medical information. In the past, communication skills have not been considered a priority. Today, these skills have become a demanding professional and even legal obligation. However, the challenges involved in communicating complex medical information cannot be successfully addressed with universal, one-size-fits-all recommendations. Residency training programs require changes to adequately prepare future pediatricians for the growing challenge of communicating genetic information. Four important skills should be considered in the training of residents to improve the communication of complex information to patients. These skills are (1) discriminating, (2) understanding, (3) simplifying, and (4) explaining information.</p

    Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease

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    Critical questions arise about misunderstandings of genetics. We interviewed for 2 h each, 64 individuals who had or were at risk for Huntington's disease (HD), breast cancer or Alpha‐1 antitrypsin deficiency. These individuals revealed various misunderstandings that can affect coping, and testing, treatment and reproductive decisions. A therapeutic misconception about testing appeared: that testing would be helpful in and of itself. Many believed they could control genetic disorders (even HD), yet these beliefs were often incorrect, and could impede coping, testing, and treatment. Misunderstandings about statistics and genetics often fueled each other, and reflected denial, and desires for hope and control. Emotional needs can thus outweigh understandings of genetics and statistics, and providers’ input. Individuals often maintained non‐scientific beliefs, though embarrassed by these. These data have implications for care, and public and professional education. Misunderstandings’ persistence, despite realization of their inaccuracy, suggests that providers need to address not just cognitive facts, but underlying emotional issues

    New literacy challenge for the twenty-first century: genetic knowledge is poor even among well educated

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    We live in an age of rapidly advancing genetic research. This research is generating new knowledge that has implications for personal health and well-being. The present study assessed the level of genetic knowledge and personal engagement with genetics in a large sample (N = 5404) of participants. Participants received secondary education in 78 countries, with the largest samples from Russia, the UK and the USA. The results showed significant group differences in genetic knowledge between different countries, professions, education levels and religious affiliations. Overall, genetic knowledge was poor. The questions were designed to assess basic genetic literacy. However, only 1.2% of participants answered all 18 questions correctly, and the average score was 65.5%. Genetic knowledge was related to peoples’ attitudes towards genetics. For example, those with greater genetic knowledge were on average more willing to use genetic knowledge for their personal health management. Based on the results, the paper proposes a number of immediate steps that societies can implement to empower the public to benefit from everadvancing genetic knowledge

    Genome-based health literacy : a new challenge for public health genomics

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    So far health literacy has not been sufficiently discussed in the context of public health genomics. Primarily, not genomic but rather genome-based health information needs to be addressed taking into account genome-environment interactions and integrating all health determinants including genomics into a systemic and holistic approach. Translating findings from epigenomics and systems biomedicine will help to understand that individual biological pathways or networks are permanently interacting with environmental networks such as social networks. Thus, in the end also health literacy will become personalized. Genome-based health literacy is challenged by the question of which information is relevant for the individual, for what purpose, and at what time during the lifespan. Public health tools and expertise already in place can and should be used to tackle these huge challenge

    Anatomy Education to the Public

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    Anatomy has a long-standing history with the public, dating back to the days of Ancient Greece. In recent years, anatomy has become a subject that again has come into the public forum, stepping out of the dissecting room with new teaching technologies and resources enabling learning about the body to become widespread. Engagement with the public is a growing area of academic activity as institutions become more accountable in demonstrating how they spend their funds and demonstrating the teaching and research they undertake. Anatomy lends itself to this engagement because everyone has anatomy and it directly links to their health in multiple facets of their lives. Many resources are available to engage public interest in anatomy, including plastic models, interactive media, crafts and 3D printing. There are important practical considerations relating to venues, funding, feedback and research. Engagement should be a fun and innovative event that enables participants to learn and enjoy themselves