164 results on '"Genetic knowledge"'
Search Results
2. Alfabetización genética en cuidadores frente a un asesoramiento genético pediátrico, en un hospital público de Buenos Aires.
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Vázquez, Natalia, Ortega, Javiera, Arberas, Claudia, Samaniego, Virginia C., Skavone, Kevin, Assalone, Florencia, Vázquez, Victoria, Ruiz, Camila A., Pozo Gowland, Rafael, and Amayra Caro, Imanol
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GENETIC counseling , *PUBLIC hospitals , *CAREGIVERS , *CAREGIVER education , *PEDIATRICS , *HEALTH literacy , *WELL-being , *FATHER-child relationship , *SERVICES for caregivers - Abstract
Genetic literacy is essential to understand effective participation in social decisions on genetic issues, which promote personal well-being. The study aimed to describe the levels of genetic literacy in caregivers, mothers and fathers, who receive genetic counseling about their children. Also, study explored genetic literacy associations with education levels, age, having a diagnosis, and aspects of genetic counselling. A cross-sectional correlational observational study was carried out. Study took place in a public hospital in Buenos Aires City. Sample consisted of 156 caregivers who received genetic counselling on this hospital. Participants included caregivers of children with a genetic diagnosis (66.7 %) and caregivers of children without an accurate diagnosis (33.3 %). Caregivers had attended genetic consults on a range from 1-13 (M = 3.7; SD = 2.97). Mean age for caregivers was 36.02 (SD = 8.1) and for children, M = 6.07 (SD = 3.85). 51.6 % of children were male and 48.4 % were female. According to the caregivers' report, the average age at which their children received a diagnosis or started the suspected diagnosis was 2.68 years (SD = 3.17). Regarding caregiver's education levels, 48.4 % of them had not completed high school, while 51.6 % had completed high school or a higher level of studies. The REAL-G scale was administered to caregivers. The REAL-G is an instrument that measures genetic literacy in terms of decoding (scores 0 to 62), familiarity (of 8 genetic terms, scores 0 to 7 for each term), comprehension (scores 0 to 8), and numeracy (scores 0 to 3). Results showed that 35.5 % of the caregivers had a lower-than-expected level of genetic literacy. For decoding, results showed a M = 58.56 (SD = 4.09) of recognized terms. A mean of 5.13 (SD = 1.72) was found for the comprehension dimension. For familiarity with genetic terms, heritage (M = 5.71, SD = 1.62) and genetic (M = 5.09, SD = 1.89) were the terms with higher familiarity. Sporadic (M = 2.92, SD = 2.16) and susceptibility (M = 3.10, SD = 2.16) were the terms with lower familiarity. For the numeracy dimension, a mean of .90 (SD = .88) was found. Also, statistically significant differences were found in genetic literacy levels according to educational level (p = .00), and in the comprehension dimension between mothers who had an accurate diagnosis and those who did not (U = 714.5; p = .01). Finally, significant relationships were found between levels of genetic literacy and the age of the caregiver (Rho = 0.25, p = .01, N = 93) and the age of the child (Rho = -.23, p = .02, N = 93). No significant relationship was found between any of the genetic literacy dimensions and number of genetic counselling consults (p = .54) or with age of diagnosis (p = .93). In conclusion, not all caregivers who receive genetic counseling achieve adequate levels of genetic literacy. Numeracy seems to be part of genetic literacy were caregivers have more difficulties. These results should concern us since understanding rates influences the interpretation of the risk of family recurrence. Also, higher levels of genetic literacy are associated with higher levels of education, mother's age and child's age. Genetic counsellors should take into account level of education when working with families under genetic counselling, making sure that they have understood and offering greater opportunities for encounters to promote greater learning. In addition, caregivers who got an accurate diagnosis have better understanding of genetic terms that those caregivers still awaiting an accurate diagnosis. This group of caregivers should be considered as a higher risk group and could benefit from psychological support in the process of getting a diagnosis. Achieving good genetic literacy is a central objective of the genetic counseling process, allowing the patient and their family to be empowered to make informed decisions about their health. Caregivers who undergo genetic counselling could benefit from a psycho-educational process, facilitating genetic information and providing emotional support. [ABSTRACT FROM AUTHOR]
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- 2023
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3. Genetic testing and eHealth usage among Deaf women
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Kushalnagar, Poorna, Holcomb, Juliana, and Sadler, Georgia R
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Biomedical and Clinical Sciences ,Oncology and Carcinogenesis ,Breast Cancer ,Genetic Testing ,Cancer ,Prevention ,Genetics ,Behavioral and Social Science ,Ear ,Good Health and Well Being ,Access to Information ,Female ,Humans ,Patient Education as Topic ,Persons With Hearing Impairments ,Sign Language ,Surveys and Questionnaires ,Telemedicine ,Young Adult ,deaf ,disability ,disparities ,DNA ,eHealth ,genetic counseling ,genetic knowledge ,genetic testing ,hereditary breast cancer ,sign language ,women ,Clinical Sciences ,Genetics & Heredity ,Clinical sciences - Abstract
In the past decade, accessible information in American Sign Language (ASL) about cancer and genetic testing is expanding on eHealth platforms, including social network sites, commercial sites, and mobile apps. Primary data on genetic testing awareness and genetic testing for BRCA 1/2 among Deaf women were gathered using HINTS-ASL survey between November 2016 and April 2018, and secondary data for hearing women were drawn from NCI's HINTS 5 Cycle 1 survey in 2017. Deaf women who had heard of DNA testing (63%) were more likely to be young adults, college graduates, and/or have a family history of cancer. Compared to hearing women, Deaf women who had heard of genetic testing were more likely to use social networking sites to read or share information about medical topics and watch health-related videos. Making eHealth platforms accessible in ASL and easy-to-understand text can help reduce knowledge gap in genetic testing, since some Deaf women may not be using genetic testing to help identify whether they are at increased risk for breast and ovarian cancer early on, before they are diagnosed with cancer.
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- 2019
4. Development and validation of the Vanderbilt PRS-KS, an instrument to quantify polygenic risk score knowledge
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Doug Stubbs, Gillian W. Hooker, Yajing Li, Lucas Richter, and Alexander Bick
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Polygenic risk score ,Genetic knowledge ,Genomic risk score ,Knowledge scale ,Scale validation ,Genetics ,QH426-470 ,Medicine - Abstract
Purpose: As polygenic risk scores (PRSs) enter clinical practice, health care providers’ and the publics’ comprehension of PRS results are of great importance; yet, they are poorly understood. We present the Vanderbilt polygenic risk scores knowledge scale (Vanderbilt PRS-KS), a tool to quantify PRS knowledge. Methods: The Vanderbilt PRS-KS was developed by a team of genetic counselors and physicians to cover key conceptual facts pertaining to PRSs. We recruited (n = 500) individuals with demographics representative of a U.S. sample and graduate-level health care students (n = 74) at a large academic medical center to participate in this validation study. We evaluated the Vanderbilt PRS-KS’s psychometric properties using confirmatory factor analysis and item response theory. Results: The 7-item Vanderbilt PRS-KS correlated to a single latent construct on confirmatory factor analysis (Λ = 0.31-0.61). The scale showed promising reliability (Cronbach’s α = 0.66) with item response theory summed scores of ≥2 to ≤5, demonstrating reliability >0.70. The Vanderbilt PRS-KS significantly correlated with genetic knowledge and applied PRS knowledge (r = 0.55 and r = 0.29), and graduate-level health care students scored significantly higher compared with the U.S. representative sample (P < .01). Conclusion: The Vanderbilt PRS-KS is a rigorously validated measure to quantify PRS knowledge. Clinicians should tailor future PRS knowledge interventions to the identified knowledge gaps, including PRS inheritance, equity of performance in different ethnicities, and integration with other health determinants.
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- 2023
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5. The effect of WhatsApp-based training on nurses' genetic knowledge levels and awareness in Turkey: A quasi-experimental study.
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Ceylan, Hatice, Kosar Sahin, Cansu, and Aydin Acar, Cigdem
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Genetics plays an important role in healthcare, and it is crucial for nurses to have a good understanding of this field. However, studies have shown that nurses often lack genetic knowledge and awareness. Furthermore, innovative educational approaches, such as WhatsApp-based education, have been proposed to address this knowledge gap, unlike traditional educational methods. These approaches use technology and interactive platforms to engage nurses in dynamic and immersive learning experiences. This study aimed to examine the impact of WhatsApp-based training on nurses' genetic knowledge levels and awareness. A quasi-experimental pre-test–post-test design was used. A total of 121 registered nurses participated in a WhatsApp-based training program comprising presentations on genetic issues. Data were collected using Genetics and Genomics in Nursing Practice Survey. Values, means, percentage frequency distributions, and paired-sample t -tests were used. In the pre-training period, the mean knowledge score of the nurse group was found to be 3.31 ± 1.30 in the pre-training period and 9.58 ± 1.73 in the post-training period. The applied WhatsApp-based training was found to have an effect size of 0.752 on the GGNPS (Genetics and Genomics in Nursing Practice Survey) knowledge score of the sample group (F = 374.882, p = 0.000). In the post-training period, there were significant increases in all the GGNPS items. WhatsApp-based educational programs have the potential to improve nurses' genetic knowledge and awareness. To fulfill the expanding needs of the nursing profession and to enhance patient care outcomes, this study emphasizes the importance of incorporating innovative educational tools into nursing education. • WhatsApp-based training enabled flexible, self-paced learning among nurses, improving their ability to understand and apply genetic knowledge in clinical settings. • This study underlines the effectiveness of using innovative and interactive platforms like WhatsApp for educational purposes in the nursing field. [ABSTRACT FROM AUTHOR]
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- 2025
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6. Donor Conception, Genetic Knowledge, and Bionormativity: A Book Review of Daniel Groll’s Conceiving People
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Roth, Amanda
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- 2023
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7. GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing.
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Milo Rasouly, Hila, Cuneo, Nicole, Marasa, Maddalena, DeMaria, Natalia, Chatterjee, Debanjana, Thompson, Jacqueline J., Fasel, David A., Wynn, Julia, Chung, Wendy K., Appelbaum, Paul, Weng, Chunhua, Bakken, Suzanne, and Gharavi, Ali G.
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With the broader introduction of genomic medicine in research and clinical care, an increasing number of persons are offered genetic testing. Many factors, including genetic literacy, may impact the utilization of genetic results by patients and their families. We developed a rapid, self‐administered measure of genetic literacy, called Genetic Literacy Fast Test (GeneLiFT). We next evaluated the association of GeneLiFT scores with the comprehension of limitations of genomic medicine in participants undergoing genetic testing in the NIH‐sponsored eMERGE III study at Columbia University Irving Medical Center, New York. All participants underwent genetic screening for variants in 74 actionable genes associated with adult‐onset disorders. A diverse cohort of 724 participants completed the survey (60% women, 45% less than 40 years old, and 53% self‐reported White non‐Hispanic ancestry). The GeneLiFT was validated using known group differences based on education, health literacy, and numeracy, and with questions assessing genetic knowledge. GeneLiFT identified multiple standard genetics terms, that is, jargon, not recognized by more than 50% of participants (including actionability and pathogenicity). Low genetic literacy, identified in 210 participants (29%), was significantly associated with poor understanding of the limitations of genetic testing (p‐values < 10–9). This association was independent of education, health literacy, and numeracy levels, highlighting the importance of directly measuring genetic literacy. Low genetic literacy was also associated with low satisfaction with the informed consent process. GeneLiFT is a practical tool for rapid assessment of genetic literacy in large studies or clinical care. GeneLiFT will allow future research to efficiently assess the role of genetic literacy on the clinical impact of genetic testing. [ABSTRACT FROM AUTHOR]
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- 2021
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8. Preconception expanded carrier screening: Impact of information presented by text or video on genetic knowledge and attitudes.
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Conijn, Thirsa, Nijmeijer, Stephanie C. M., Lakeman, Phillis, Henneman, Lidewij, Wijburg, Frits A., and Haverman, Lotte
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Preconception expanded carrier screening (ECS) aims to identify couples with an increased risk of having a child with an autosomal recessive (AR) disorder before pregnancy, thereby enabling reproductive choices. Genetic knowledge and experiential knowledge both influence the uptake of ECS. As people in the general public often lack such knowledge, it is essential to provide appropriate and understandable information when offering ECS. This study investigated the effect of an educational video, compared to an educational text, on the knowledge and attitudes toward preconception ECS in the general population. Both the text and video consisted of a brief educational summary on AR inheritance and on the type of disorders included in ECS, with the progressive neurodegenerative condition mucopolysaccharidosis type III (MPS III) as an example. Participants in the reproductive age were invited in collaboration with a research agency. Respondents (N = 789) were offered an educational video prior to completing an online questionnaire that examined genetic knowledge, the perceived severity of MPS III, perceived risk, and attitudes toward ECS. Outcomes were compared to reference data collected previously in which respondents had been offered an educational text (N = 781). We first again studied the attitudes toward ECS in a smaller educational text group (N = 266) in order to assess whether attitudes had changed over time due to increased media coverage on ECS, which did not reveal any significant changes. Respondents who were offered the video had a better genetic knowledge, perceived MPS III as more severe, perceived their risks higher and were more likely to participate in ECS compared to those who were offered text. Online video may well be used as supportive tool to the genetic counseling process, creating more knowledge on ECS and severe genetic disorders included in preconception screening panels. [ABSTRACT FROM AUTHOR]
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- 2021
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9. What Do People Know About the Heritability of Sleep?
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Madrid-Valero, Juan J., Chapman, Robert, Bailo, Evangelina, Ordoñana, Juan R., Selita, Fatos, Kovas, Yulia, and Gregory, Alice M.
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HERITABILITY , *TWINS , *TWIN studies , *SCIENTIFIC community , *TREATMENT effectiveness , *INSOMNIA , *SLEEP - Abstract
Study Objectives: Twin studies have provided data about the relative weight of genetic and environmental factors on sleep variables over the last few decades. However, heritability is a non-intuitive concept and it is often misunderstood even amongst the scientific community. This study aimed to analyze: (1) understanding of the meaning of heritability of insomnia; (2) the accuracy of estimations of heritability in the general population regarding three sleep traits (sleep duration, sleep quality and insomnia); (3) perceptions of the effectiveness of different treatments for insomnia depending on how the disorder is presented (i.e. having an environmental or genetic etiology) and whether the subject's estimate of genetic influence on sleep traits impacted beliefs about the effectiveness of different treatments. Methods: Participants (N = 3658) completed a survey which included: questions about general genetic knowledge; a specific question about the meaning of heritability; estimates of heritability of three different sleep traits; and the effectiveness of different treatments for insomnia depending on how the etiology of this condition was presented. Results: Fewer than 25% of the participants selected the correct description of the heritability of insomnia. Almost half of the sample incorrectly believed that heritability refers to the chance of passing a disorder onto their children. We also found that participants provided different estimates for the effectiveness of different treatments depending on the presumed etiology of the disorder. Conclusion: Most people do not have accurate knowledge about the concept of heritability. People's assumptions about the etiology of a disorder may influence which treatments they consider most effective. [ABSTRACT FROM AUTHOR]
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- 2021
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10. Research participant understanding and engagement in an institutional, self‐consent biobank model.
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Schmanski, Andrew, Roberts, Emily, Coors, Marilyn, Wicks, Stephen J., Arbet, Jaron, Weber, Rachel, Crooks, Kristy, Barnes, Kathleen C., and Taylor, Matthew R. G.
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The number of institutional and governmental biobanks and the target enrollment sizes of modern biobanks are increasing, affording more opportunities for the public to participate in biobanking efforts. In parallel with these expansions are pressures to increase the efficiency of obtaining informed consent using shorter consent forms that cover a broader scope of research and increasingly include provisions for return of research or clinical genetic test results to participants. Given these changes, how well these participants understand genetics, their level of understanding of what they are consenting to, and their wishes to engage longitudinally and receive biobank results are not well understood. We surveyed participants in a large, medical system‐based biobank who had enrolled through a two‐page, self‐consent process about their baseline knowledge of genetics, understanding and recall of the consent process, wishes for future contact and engagement, and level of interest in receiving clinical genetic testing results. A total of 856 consented persons participated in the survey (67% women; 67% white). Participants' general reported genetics knowledge was relatively high (mean 11.60 of 15 questions answered correctly) as was recall of key elements from the two‐page consent form. Overall participant enthusiasm for future contact by the biobank and for receiving clinical genetic testing results was high. The use of a two‐page, self‐consent process in a large, institutional biobank resulted in high levels of consent recall and enthusiasm for future ongoing engagement and receipt of genetic testing results by participants. [ABSTRACT FROM AUTHOR]
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- 2021
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11. Ethical Aspects of Genotype Disclosure: Perceptions of Participants in a Nutrigenetic Study in Finland.
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De, Suchetana, Tringham, Maaria, Hopia, Anu, Tahvonen, Raija, Pietilä, Anna-Maija, and Vähäkangas, Kirsi
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PEARSON correlation (Statistics) , *CRONBACH'S alpha , *GENOTYPES - Abstract
Objective: The aim of this study was to gain insight into the understanding of genetics and perceptions on the ethical issues related to genotype disclosure of the participants in a nutrigenetic study. Methods: A close-ended questionnaire was developed based on literature and discussions among the research group members. The questionnaire contained a -total of 33 questions, which were divided into 4 categories – demographics, knowledge assessment, concerns related to participation, and opinions on disclosure of information. Majority of the participants (250 out of 281) of a nutrigenetic study, in which effect of disclosing APOE allele status on lifestyle changes was studied, completed the questionnaire online following the informed consent process. The responses from the knowledge assessment and the concern categories were transformed into knowledge and concern scales, respectively, and analysed by descriptive statistical methods. The statistical associations between the categorical variables were determined using χ2 test of independence. The relationship between the continuous variables was assessed using Pearson product-moment correlation coefficient and internal consistency of questions by Cronbach's alpha. Results: No correlation was observed between the level of education and knowledge scores. About 10% of the participants thought that the genetic predisposition would be stressful to them and their family members. Conclusions: Careful distribution of information before a nutrigenetic study supports understanding and reduces concerns of genetic susceptibility. In Finland, strong basic education is likely to have strengthened the trust in research process. [ABSTRACT FROM AUTHOR]
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- 2021
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12. Knowledge and opinions regarding BRCA1 and BRCA2 genetic testing among primary care physicians.
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Dekanek, Erin W., Thull, Darcy L., Massart, Mylynda, Grubs, Robin E., Rajkovic, Aleksander, and Mai, Phuong L.
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BRCA1 and BRCA2 (BRCA1/2) testing is standard for individuals with personal and/or family history suggestive of hereditary breast and ovarian cancer syndrome. The indications for testing have been expanding. To accommodate the need, incorporation of cancer genetic services into the practice of non‐genetic healthcare providers should be considered. We carried out a survey to evaluate the knowledge and opinions regarding BRCA1/2 testing among primary care providers. The survey was sent to 245 Obstetrics/Gynecology and 97 Family Medicine physicians in the UPMC network. Eighty‐six completed the survey between July 2015 and September 2015. The average correct responses to knowledge questions was 73%. A few respondents reported being completely confident, and ~50% reported being somewhat confident, in providing BRCA1/2‐related information. Respondents selected genetic specialists and oncologists as the most qualified to provide cancer genetic services. Several perceived barriers and motivating factors to the implementation of BRCA1/2 testing in primary care were identified. The findings from this study suggested that primary care providers were not uniformly ready to provide BRCA1/2 genetic testing. Availability of professional society guidelines and evidence of testing's usefulness might motivate the incorporation of BRCA1/2 genetic testing into primary care practices. These findings would help guide future educational efforts to promote provision of cancer genetic services by non‐genetic professionals. [ABSTRACT FROM AUTHOR]
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- 2020
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13. Does Patent Strategy Shape the Long-Run Supply of Public Knowledge? : Evidence from Human Genetics
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Huang, Kenneth Guang-Lih, Murray, Fiona E., China-EU School of Law, Hatje, Armin, Editor-in-chief, Liu, Fei, Editor-in-chief, Creemers, Rogier, Series editor, Ahl, Björn, Series editor, Liu, Kung-Chung, editor, and Racherla, Uday S., editor
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- 2016
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14. Decision role preferences for return of results from genome sequencing amongst young breast cancer patients.
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Matsen, Cindy B., Lyons, Sarah, Goodman, Melody S., Biesecker, Barbara B., and Kaphingst, Kimberly A.
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CANCER patients , *NUCLEOTIDE sequencing , *BREAST cancer , *DECISION making , *MEDICAL care research - Abstract
Objective: To better understand decision role preferences in women diagnosed with breast cancer at a young age for return of results of genome sequencing in research and clinical settings.Methods: Participants were surveyed about communication and decision-making preferences related to genome sequencing results and factors that may affect these preferences. The primary outcome was decision role preference (Control Preference Scale) for selecting what results to receive within medical care or within a research study.Results: For results returned as part of medical care, most patients preferred a collaborative (N = 481, 45%) or active (N = 488, 45%) role with only 107 (10%) choosing a passive role. When making the decision as part of a research study, most patients preferred an active role (N = 617, 57%), 350 (33%) choosing a collaborative role, and110 (10%) choosing a passive role.Conclusion: Most women in this study preferred to share in decision making. Participants had somewhat different role preferences for clinical and research contexts, with greater preference for active roles in the research context.Practice Implications: We advocate for practice guidelines that incorporate discussion of decision role as an integral part of patient centered care and shared decision-making and recognize that more work is needed to inform guidelines. [ABSTRACT FROM AUTHOR]- Published
- 2019
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15. New literacy challenge for the twenty-first century: genetic knowledge is poor even among well educated.
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Chapman, Robert, Likhanov, Maxim, Selita, Fatos, Zakharov, Ilya, Smith-Woolley, Emily, and Kovas, Yulia
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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 ever-advancing genetic knowledge. [ABSTRACT FROM AUTHOR]
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- 2019
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16. Knowing Mycellf™: Personalized Medicine and the Economization of Prospective Knowledge about Bodily Fate
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Parry, Bronwyn, Meusburger, Peter, editor, Glückler, Johannes, editor, and el Meskioui, Martina, editor
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- 2013
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17. In Defense of Openness—Genetic Knowledge and Gamete Donation.
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Mykitiuk, Roxanne
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GENETICS , *HEALTH literacy , *OVUM donation , *SPERM donation - Abstract
In Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation (Oxford University Press, 2021), Daniel Groll argues why people who use donated sperm or eggs to have children ought to use a known donor. His main argument for this position is that a child conceived in this way will have a foreseeable, significant interest in acquiring genetic knowledge. However, Groll addresses issues that are of interest to anyone who thinks about the nature of families and parent‐child relationships. For example, what obligations or responsibilities does a parent have to their child? What makes someone a parent? And what is the significance to one's identity of knowing about one's genetic origins? While a claim about access to genetic knowledge lies at the heart of Groll's book, he is all too aware of the social forces that influence people to care about their genetic origins. His prescriptions, ultimately, reflect this reality. [ABSTRACT FROM AUTHOR]
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- 2023
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18. Genetic Literacy and Problem-Based Learning
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Voithofer, Rick, Fee, Samuel B., editor, and Belland, Brian R., editor
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- 2012
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19. Which Duty First? : An Ethical Scheme on the Conflict Between Respect for Autonomy and Common Welfare in Order to Prepare the Moral Grounds for Trust
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Dabrock, Peter, Dabrock, Peter, editor, Taupitz, Jochen, editor, and Ried, Jens, editor
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- 2012
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20. Introduction
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Gibbon, Sahra, Santos, Ricardo Ventura, Sans, Mónica, Gibbon, Sahra, editor, Santos, Ricardo Ventura, editor, and Sans, Mónica, editor
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- 2011
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21. Genetic Knowledge within a National Australian Sample: Comparisons with Other Diverse Populations.
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Dar-Nimrod, Ilan, MacNevin, Georgia, Godwin, Alexandra, Lynch, Kate, Magory Cohen, Tali, Ganesan, Asha, and Morandini, James
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PUBLIC understanding of science , *GENETICS , *SOCIAL groups , *INTERPERSONAL relations , *PUBLIC health , *DEMOGRAPHIC surveys - Abstract
Background: Genetic knowledge, which plays important functions in our understanding of science, health, social groupings, and even behaviour, has been evaluated in past studies with various populations. This wide reach of genetics means that different types of items are used to assess genetic knowledge, which restricts meaningful comparisons across time- and locale-based studies. Aim: The present study addresses this limitation by recruiting an Australia-wide sample and evaluating their genetic knowledge using items sourced from four diverse samples. Method: Seven hundred and eighty Australians completed a variety of items assessing their genetic knowledge as well as several demographic indicators. Results: The results show superior overall genetic knowledge in the current sample compared with previous samples. Additionally, the study finds that genetic knowledge about health and illness seems to be the most accurate, whereas such knowledge about social categorisations and behaviours seems to be the most error-prone. In the current sample, being a female and having interest in genetics were positive predictors of genetic knowledge; surprisingly educational attainment was not a significant predictor. Conclusion: Compared with previous surveys, the current sample showed significantly better genetic knowledge. However, certain areas that relate to public understating still indicate rampant misperceptions. [ABSTRACT FROM AUTHOR]
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- 2018
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22. Scientists and the Making of Genomics as Monuments for the Living
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Gibbon, Sahra and Gibbon, Sahra
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- 2007
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23. Conclusion
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Gibbon, Sahra and Gibbon, Sahra
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- 2007
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24. Constructing Patienthood: The ‘Care’ of Predictive Medicine and Female Nurturance
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Gibbon, Sahra and Gibbon, Sahra
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- 2007
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25. The Enrolment of ‘Patients’: Visibility, Voice and Breast Cancer Activism
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Gibbon, Sahra and Gibbon, Sahra
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- 2007
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26. Introduction
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Gibbon, Sahra and Gibbon, Sahra
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- 2007
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27. THE THICK SOCIAL MATRIX FOR BIOETHICS Anthropological Approaches
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RAPP, RAYNA, Weisstub, David N., editor, Rehmann-Sutter, Christoph, editor, Düwell, Marcus, editor, and Mieth, Dietmar, editor
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- 2006
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28. Genetic Ambivalence: Expertise, Uncertainty and Communication in the Context of New Genetic Technologies
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Kerr, Anne, Franklin, Sarah, and Webster, Andrew, editor
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- 2006
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29. Is Human Genetics Becoming Dagerous to Society?
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Epstein, Charles J. and Suhai, Sándor, editor
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- 2002
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30. The Human Genome Project: Justification, Promotion, and Access to Results
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Nordgren, Anders, Engelhardt, H. Tristram, Jr., editor, Wildes, Kevin Wm., editor, and Nordgren, Anders
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- 2001
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31. Genetic Knowledge and Our Conception of Ourselves as Persons
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Takala, Tuija, Thomasma, David C., editor, Weisstub, David N., editor, Kushner, Thomasine Kimbrough, editor, and Hervé, Christian
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- 2001
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32. Genetics and Culture
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Ten Have, Henk A. M. J., Thomasma, David C., editor, Weisstub, David N., editor, Kushner, Thomasine Kimbrough, editor, ten Have, Henk, editor, and Gordijn, Bert, editor
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- 2001
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33. Effect on perceived control and psychological distress of genetic knowledge in women with breast cancer receiving a BRCA1/2 test result.
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Brédart, Anne, Kop, Jean-Luc, De Pauw, Antoine, Caron, Olivier, Fajac, Anne, Noguès, Catherine, Stoppa-Lyonnet, Dominique, and Dolbeault, Sylvie
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PSYCHOLOGICAL distress ,BRCA genes ,GENETICS of breast cancer ,CANCER genetics ,GENETIC counseling ,MENTAL depression - Abstract
Information provision during BRCA1/2 genetic counseling is complex and expected to be increasingly so with gene panel testing. This prospective study evaluated whether genetic knowledge in counselees with breast cancer (BC) after a pre-test genetic counseling visit (T1) enhance their feeling of personal control while minimizing distress after the notification of BRCA1/2 result (T2). At T1, 243 (89% response rate) counselees completed questionnaires on genetic knowledge (BGKQ), perceived cancer genetic risk; of which, at T2, 180 (66%) completed the BGKQ again, scales of anxiety/depression, distress specific to genetic risk, and perceived control. Multilevel models were performed accounting for clinician, and testing an effect of knowledge on psychological outcomes according to the adequacy of counselees' perceived genetic predisposition to cancer. The mean knowledge score was moderate at T1, decreased while not significantly differing by BRCA1/2 test result at T2. Knowledge at T1 had no direct effect on psychological outcomes, but in counselees who over-estimated their cancer genetic risk, higher knowledge at T1 predicted higher specific distress at T2. In BC affected counselees who over-estimate their cancer genetic risk, higher BRCA1/2 pre-test genetic knowledge seem to lead to increased specific distress. Identifying these BC affected counselees who over-estimate their genetic cancer risk and helping them to interpret their genetic knowledge instead of providing them with exhaustive genetic information could minimize their distress after test result receipt. [ABSTRACT FROM AUTHOR]
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- 2017
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34. Genetic Knowledge in a Just Society
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Holtug, Nils, Thompson, Alison K., editor, and Chadwick, Ruth F., editor
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- 1999
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35. Influences of Genetic Testing on A Person’s Freedom
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Hildt, Elisabeth, Thompson, Alison K., editor, and Chadwick, Ruth F., editor
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- 1999
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36. GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing
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David Fasel, Nicole Cuneo, Suzanne Bakken, Chunhua Weng, Ali G. Gharavi, Paul S. Appelbaum, Hila Milo Rasouly, Debanjana Chatterjee, Maddalena Marasa, Julia Wynn, Wendy K. Chung, Jacqueline Jamir Thompson, and Natalia DeMaria
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Gerontology ,Adult ,Male ,Health Knowledge, Attitudes, Practice ,media_common.quotation_subject ,Genetic counseling ,assessment ,Health literacy ,Literacy ,03 medical and health sciences ,0302 clinical medicine ,test ,Informed consent ,Numeracy ,risk perception ,Surveys and Questionnaires ,genetic knowledge ,medicine ,Humans ,Mass Screening ,Genetic Testing ,Genetics (clinical) ,media_common ,Genetic testing ,0303 health sciences ,Informed Consent ,medicine.diagnostic_test ,communication ,screening ,030305 genetics & heredity ,Original Articles ,Test (assessment) ,Health Literacy ,030220 oncology & carcinogenesis ,Cohort ,Original Article ,genetic literacy ,Female ,Psychology - Abstract
With the broader introduction of genomic medicine in research and clinical care, an increasing number of persons are offered genetic testing. Many factors, including genetic literacy, may impact the utilization of genetic results by patients and their families. We developed a rapid, self‐administered measure of genetic literacy, called Genetic Literacy Fast Test (GeneLiFT). We next evaluated the association of GeneLiFT scores with the comprehension of limitations of genomic medicine in participants undergoing genetic testing in the NIH‐sponsored eMERGE III study at Columbia University Irving Medical Center, New York. All participants underwent genetic screening for variants in 74 actionable genes associated with adult‐onset disorders. A diverse cohort of 724 participants completed the survey (60% women, 45% less than 40 years old, and 53% self‐reported White non‐Hispanic ancestry). The GeneLiFT was validated using known group differences based on education, health literacy, and numeracy, and with questions assessing genetic knowledge. GeneLiFT identified multiple standard genetics terms, that is, jargon, not recognized by more than 50% of participants (including actionability and pathogenicity). Low genetic literacy, identified in 210 participants (29%), was significantly associated with poor understanding of the limitations of genetic testing (p‐values
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- 2020
37. Popular Images of Genetics
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Van Dijck, José and Van Dijck, José
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- 1998
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38. Germ-Line Engineering as the Eugenics of the Future
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Renzong, Qui, Engelhardt, H. Tristram, Jr., editor, Spicker, Stuart F., editor, Wildes, Kevin W., editor, Agius, Emmanuel, editor, and Busuttil, Salvino, editor
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- 1998
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39. Ethics, society and policy: a way forward
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Banner, Michael, Holland, Alan, editor, and Johnson, Andrew, editor
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- 1998
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40. Modelling processes for change: Basic mechanisms for evolving process fragments
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Kaba, Ali B., Derniame, Jean-Claude, Goos, Gerhard, editor, Hartmanis, Juris, editor, van Leeuwen, Jan, editor, and Montangero, Carlo, editor
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- 1996
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41. Bioethics in Spain: 1991–1993
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Abel, Francesc, Nuñez, Ma Pilar, Terribas, Nuria, Viñas, Montserrat, and Lustig, B. Andrew, editor
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- 1995
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42. Software process design based on products and the object oriented paradigm
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Tankoano, Joachim, Derniame, Jean-Claude, Kaba, Ali B., Goos, Gerhard, editor, Hartmanis, Juris, editor, and Warboys, Brian C., editor
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- 1994
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43. Development and validation of the Vanderbilt PRS-KS, an instrument to quantify polygenic risk score knowledge.
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Stubbs D, Hooker GW, Li Y, Richter L, and Bick A
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Purpose: As polygenic risk scores (PRSs) enter clinical practice, health care providers' and the publics' comprehension of PRS results are of great importance; yet, they are poorly understood. We present the Vanderbilt polygenic risk scores knowledge scale (Vanderbilt PRS-KS), a tool to quantify PRS knowledge., Methods: The Vanderbilt PRS-KS was developed by a team of genetic counselors and physicians to cover key conceptual facts pertaining to PRSs. We recruited ( n = 500) individuals with demographics representative of a U.S. sample and graduate-level health care students ( n = 74) at a large academic medical center to participate in this validation study. We evaluated the Vanderbilt PRS-KS's psychometric properties using confirmatory factor analysis and item response theory., Results: The 7-item Vanderbilt PRS-KS correlated to a single latent construct on confirmatory factor analysis (Λ = 0.31-0.61). The scale showed promising reliability (Cronbach's α = 0.66) with item response theory summed scores of ≥2 to ≤5, demonstrating reliability >0.70. The Vanderbilt PRS-KS significantly correlated with genetic knowledge and applied PRS knowledge (r = 0.55 and r = 0.29), and graduate-level health care students scored significantly higher compared with the U.S. representative sample ( P < .01)., Conclusion: The Vanderbilt PRS-KS is a rigorously validated measure to quantify PRS knowledge. Clinicians should tailor future PRS knowledge interventions to the identified knowledge gaps, including PRS inheritance, equity of performance in different ethnicities, and integration with other health determinants., (© 2023 The Authors.)
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- 2023
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44. The effect of genetic education on the referral of patients to genetic evaluation: Findings from a national survey of nephrologists.
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Rasouly HM, Balderes O, Marasa M, Fernandez H, Lipton M, Lin F, Gharavi AG, and Sabatello M
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- Adult, Humans, United States, Nephrologists, Surveys and Questionnaires, Referral and Consultation, Attitude of Health Personnel, Nephrology education, Kidney Diseases
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Purpose: The success of genomic medicine hinges on the implementation of genetic knowledge in clinical settings. In novel subspecialties, it requires that clinicians refer patients to genetic evaluation or testing, however referral is likely to be affected by genetic knowledge., Methods: An online survey was administered to self-identified nephrologists working in the United States. Nephrologists' demographic characteristics, genetic education, confidence in clinical genetics, genetic knowledge, and referral rates of patients to genetic evaluation were collected., Results: In total, 201 nephrologists completed the survey. All reported treating patients with genetic forms of kidney disease, and 37% had referred <5 patients to genetic evaluation. A third had limited basic genetic knowledge. Most nephrologists (85%) reported concerns regarding future health insurance eligibility as a barrier to referral to genetic testing. Most adult nephrologists reported insufficient genetic education during residency (65%) and fellowship training (52%). Lower rating of genetic education and lower knowledge in recognizing signs of genetic kidney diseases were significantly associated with lower number of patients referred to the genetic evaluation (P < .001). Most nephrologists reported that improving their genetic knowledge is important for them (>55%)., Conclusions: There is a need to enhance nephrologists' genetic education to increase genetic testing use in nephrology., Competing Interests: Conflict of Interest H.M.R. received an innovation award from Natera, Inc, a private company selling genetic testing for kidney diseases. A.G.G. has research grants from Natera, Inc and Renal Research Institute. He is on the advisory board of Actio Biosciences, Inc; Astra Zeneca; Natera, Inc; Novartis AG; and Travere Therapeutics and holds stock options of Actio Biosciences, Inc. M.S. is an Institutional Review Board member of the All of Us Research Program. All other authors declare no conflicts of interest., (Copyright © 2023 American College of Medical Genetics and Genomics. Published by Elsevier Inc. All rights reserved.)
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- 2023
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45. Evolution of Hereditary Breast Cancer Genetic Services: Are Changes Reflected in the Knowledge and Clinical Practices of Florida Providers?
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Cragun, Deborah, Scherr, Courtney, Camperlengo, Lucia, Vadaparampil, Susan T., and Pal, Tuya
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- *
GENETICS of breast cancer , *CANCER genetics , *OVARIAN cancer , *GENETIC testing , *GENETIC counseling , *DESCRIPTIVE statistics - Abstract
Aims: We describe practitioner knowledge and practices related to hereditary breast and ovarian cancer (HBOC) in an evolving landscape of genetic testing. Methods: A survey was mailed in late 2013 to Florida providers who order HBOC testing. Descriptive statistics were conducted to characterize participants' responses. Results: Of 101 respondents, 66% indicated either no genetics education or education through a commercial laboratory. Although 79% of respondents were aware of the Supreme Court ruling resulting in the loss of Myriad Genetics' BRCA gene patent, only 19% had ordered testing from a different laboratory. With regard to pretest counseling, 78% of respondents indicated they usually discuss 11 of 14 nationally recommended elements for informed consent. Pretest discussion times varied from 3 to 120 min, with approximately half spending <20 min. Elements not routinely covered by >40% of respondents included (1) possibility of a variant of uncertain significance (VUS) and (2) issues related to life/disability insurance. With regard to genetic testing for HBOC, 88% would test an unaffected sister of a breast cancer patient identified with a BRCA VUS. Conclusions: Results highlight the need to identify whether variability in hereditary cancer service delivery impacts patient outcomes. Findings also reveal opportunities to facilitate ongoing outreach and education. [ABSTRACT FROM AUTHOR]
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- 2016
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46. Should I Perform Genetic Testing? A Qualitative Look into the Decision Making Considerations of Religious Israeli Undergraduate Students.
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Siani, Merav and Assaraf, Orit
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The aim of this study is to draw a picture of the concerns that guide the decision making of Israeli religious undergraduate students and the complex considerations they take into account while facing the need to have genetic testing or to attend a genetic counseling session. We examined how the religious affiliation of the students influences their perceptions toward genetics and how these are expressed. Qualitative data were collected from 51 semi-structured interviews with students, in which recurring themes were identified using 'thematic analysis.' The codes from the thematic analysis were obtained according to 'grounded theory'. Our results show that religious undergraduate students' decision making in these issues is influenced by factors that fall under three main categories: knowledge and perceptions, values, and norms. In order to include all the components of influence, we created the Triple C model: 'Culture influences Choices towards genetic Counseling' which aims to generalize the complex decision making considerations that we detected. Our model places religion, as part of culture, as its central point of influence that impacts all three of the main categories we detected. It also traces the bidirectional influences that each of these main categories have on one another. Using this model may help identify the sociocultural differences between different types of patients, helping genetic counselors to better assist them in addressing their genetic status by tailoring the counseling more specifically to the patient's cultural uniqueness. [ABSTRACT FROM AUTHOR]
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- 2016
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47. Association of education & lifestyle factors with the perception of genetic knowledge on the development of lung cancer.
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Liang Wang, Kesheng Wang, Xuefeng Liu, and Yi He
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- *
LUNG cancer , *GENETICS , *REGRESSION analysis , *MULTIVARIATE analysis , *SENSORY perception - Abstract
Background & objectives: The perception of genetic knowledge is useful for improving the heath behaviour change against developing cancers. However, no studies have investigated the perception of genetic knowledge on the development of lung cancer. The aim of this study was to examine demographic and lifestyle factors of the perception of genetic knowledge on the development of lung cancer. Methods: Data on 2,295 US adults (739 had the perception of genetic knowledge) were taken from the 2003 Health Information National Trends Survey. Multiple logistic regression models were used to evaluate potential factors of the perception of genetic knowledge of lung cancer. Results: Participants aged ≥65 yr were more likely to have the perception of genetic knowledge than those aged 18-44 yr (OR=1.77, 95% CI=1.27-2.46). Higher education was associated with a greater perception of genetic knowledge (OR=1.47, 95% CI=1.16-1.87). Subjects with correct smoking attitude were more than three times more likely to have the perception of genetic knowledge (OR=3.15, 95% CI=2.10-4.72). Subjects with exercise were at an increased likelihood of having the perception of genetic knowledge than those without exercise (OR=1.63, 95% CI=1.24-2.13). Interpretation & conclusions: Positive associations were observed between education and lifestyle factors and the perception of genetic knowledge on the development of lung cancer among US adults. Strategies developed to improve the perception of genetic knowledge of lung cancer may target on individuals who are young, less educated, and lack correct smoking attitude or exercise [ABSTRACT FROM AUTHOR]
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- 2016
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48. Genetic Knowledge Among Participants in the Coriell Personalized Medicine Collaborative.
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Schmidlen, Tara, Scheinfeldt, Laura, Zhaoyang, Ruixue, Kasper, Rachel, Sweet, Kevin, Gordon, Erynn, Keller, Margaret, Stack, Cathy, Gharani, Neda, Daly, Mary, Jarvis, Joseph, and Christman, Michael
- Abstract
Genetic literacy is essential for the effective integration of genomic information into healthcare; yet few recent studies have been conducted to assess the current state of this knowledge base. Participants in the Coriell Personalized Medicine Collaborative (CPMC), a prospective study assessing the impact of personalized genetic risk reports for complex diseases and drug response on behavior and health outcomes, completed genetic knowledge questionnaires and other surveys through an online portal. To assess the association between genetic knowledge and genetic education background, multivariate linear regression was performed. 4 062 participants completed a genetic knowledge and genetic education background questionnaire. Most were older (mean age: 50), Caucasian (90 %), female (59 %), highly educated (69 % bachelor's or higher), with annual household income over $100 000 (49 %). Mean percent correct was 76 %. Controlling for demographics revealed that health care providers, participants previously exposed to genetics, and participants with 'better than most' self-rated knowledge were significantly more likely to have a higher knowledge score ( p < 0.001). Overall, genetic knowledge was high with previous genetic education experience predictive of higher genetic knowledge score. Education is likely to improve genetic literacy, an important component to expanded use of genomics in personalized medicine. [ABSTRACT FROM AUTHOR]
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- 2016
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49. What Do People Know About the Heritability of Sleep?
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Universidad de Alicante. Departamento de Psicología de la Salud, Madrid-Valero, Juan J., Chapman, Robert, Bailo, Evangelina, Ordoñana, Juan R., Selita, Fatos, Kovas, Yulia, Gregory, Alice M., Universidad de Alicante. Departamento de Psicología de la Salud, Madrid-Valero, Juan J., Chapman, Robert, Bailo, Evangelina, Ordoñana, Juan R., Selita, Fatos, Kovas, Yulia, and Gregory, Alice M.
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Study Objectives Twin studies have provided data about the relative weight of genetic and environmental factors on sleep variables over the last few decades. However, heritability is a non-intuitive concept and it is often misunderstood even amongst the scientific community. This study aimed to analyze: (1) understanding of the meaning of heritability of insomnia; (2) the accuracy of estimations of heritability in the general population regarding three sleep traits (sleep duration, sleep quality and insomnia); (3) perceptions of the effectiveness of different treatments for insomnia depending on how the disorder is presented (i.e. having an environmental or genetic etiology) and whether the subject’s estimate of genetic influence on sleep traits impacted beliefs about the effectiveness of different treatments. Methods Participants (N = 3658) completed a survey which included: questions about general genetic knowledge; a specific question about the meaning of heritability; estimates of heritability of three different sleep traits; and the effectiveness of different treatments for insomnia depending on how the etiology of this condition was presented. Results Fewer than 25% of the participants selected the correct description of the heritability of insomnia. Almost half of the sample incorrectly believed that heritability refers to the chance of passing a disorder onto their children. We also found that participants provided different estimates for the effectiveness of different treatments depending on the presumed etiology of the disorder. Conclusion Most people do not have accurate knowledge about the concept of heritability. People’s assumptions about the etiology of a disorder may influence which treatments they consider most effective.
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- 2021
50. Genetic testing and eHealth usage among Deaf women
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Georgia Robins Sadler, Poorna Kushalnagar, and Juliana Holcomb
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medicine.medical_specialty ,American Sign Language ,Genetic counseling ,Clinical Sciences ,Sign language ,Article ,genetic testing ,Access to Information ,Sign Language ,Young Adult ,Patient Education as Topic ,Surveys and Questionnaires ,genetic knowledge ,Behavioral and Social Science ,Breast Cancer ,Genetics ,otorhinolaryngologic diseases ,medicine ,eHealth ,Humans ,Genetic Testing ,Family history ,Young adult ,Genetics (clinical) ,disparities ,Cancer ,Genetic testing ,Genetics & Heredity ,genetic counseling ,Social network ,medicine.diagnostic_test ,business.industry ,Prevention ,hereditary breast cancer ,Ear ,DNA ,Telemedicine ,language.human_language ,deaf ,Persons With Hearing Impairments ,disability ,Family medicine ,language ,Female ,women ,business ,Psychology - Abstract
In the past decade, accessible information in American Sign Language (ASL) about cancer and genetic testing is expanding on eHealth platforms, including social network sites, commercial sites, and mobile apps. Primary data on genetic testing awareness and genetic testing for BRCA 1/2 among Deaf women were gathered using HINTS-ASL survey between November 2016 and April 2018, and secondary data for hearing women were drawn from NCI's HINTS 5 Cycle 1 survey in 2017. Deaf women who had heard of DNA testing (63%) were more likely to be young adults, college graduates, and/or have a family history of cancer. Compared to hearing women, Deaf women who had heard of genetic testing were more likely to use social networking sites to read or share information about medical topics and watch health-related videos. Making eHealth platforms accessible in ASL and easy-to-understand text can help reduce knowledge gap in genetic testing, since some Deaf women may not be using genetic testing to help identify whether they are at increased risk for breast and ovarian cancer early on, before they are diagnosed with cancer.
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- 2019
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