|
一、中文部分 于若蓉(2016)。台灣地區基因體意向調查與資料庫建置之規劃:2011年面訪調查(C00244)【原始數據】取自中央研究院人文社會科學研究中心調查研究專題中心學術調查研究資料庫。doi:10.6141/TW-SRDA-C00244-1 內政部(2019)。發展遲緩兒童早期療育服務實施方案。「新北市幼兒教育資源網」。https://kidedu.ntpc.edu.tw/files/14-1000-9312,r9-1.php 方凱企(2006)。發展遲緩兒童照護者壓力與其對遺傳諮詢資源獲取的需求研究(未出版之學位論文)。臺灣大學分子醫學研究所學位論文。 王天苗(2003)。特殊教育相關專業作業手冊。教育部特殊教育工作小組。 王美仁、黃美智、林秀娟、蔡文暉(2006)。非同步遠距網路教學在遺傳諮詢教育之應用。醫學教育,10(1),45-53。 朱紹盈、翁純瑩(2017)。遺傳/罕見疾病簡介與遺傳諮詢的運用。護理雜誌,64(5),11-17。 江麗如(2003)。大專護理教師遺傳學知識、態度與教育執行現況之探討(未出版之碩士論文)。臺北醫學大學護理學研究所學位論文。 何華國(2015)。身心障礙幼兒早期療育。臺北:五南。 吳惠如(2016)。學前特教巡迴輔導教師與相關專業人員在支援服務互動經驗之探討(未出版之碩士論文)。國立臺北教育大學特殊教育學系早期療育碩士班學位論文。 宋曜廷、潘佩妤(2010)。混合研究在教育研究的應用。教育科學研究期刊,55(4),97-130。 李悅綾(2003)。後基因體時代公共衛生護士之遺傳學知識、態度與執行遺傳護理服務之相關探討(未出版之碩士論文)。臺北醫學大學護理學系碩士班學位論文。 兒童醫療與健康政策建言書2030(2019)。第六章兒童的精準醫療。兒童醫學及健康研究中心。https://chrc.nhri.org.tw/professionals/achieve.html 周雪棻、高千惠、高美玲 (2017)。表觀遺傳學於周產期照護的應用。護理雜誌,64(2),5-11。 林克亮、楊子芃、林世傑、賴妍倩、陳純子、李英雄(2017)。 精準醫療未來發展之大趨勢。台灣醫檢雜誌, 32(4),25-37。 林宜信、曾曉苓 (2014)。罕見疾病病人及家屬對罕見疾病防治政策期待之調查。慈濟大學人文社會科學學刊,15,37-70。 胡永崇(2012)。如何促進家長同意其障礙子女接受特殊教育之鑑定與安置。雲嘉特教期刊,16,1-5。 胡永崇(2016)。論特殊教育與醫療的分合關係。特殊教育發展期刊,62,1-13。 孫世恒、廖龍仁、廖華芳、李淑貞(2004)。南投縣發展遲緩兒童早期療育跨專業團隊合作服務模式之建立經驗分享。物理治療,29(2),127-138。 國民健康署(2020)。申請列入罕見疾病流程。https://www.hpa.gov.tw/Pages/Detail.aspx?nodeid=596&pid=1014 張子嫺、曹純瓊(2013)。嘉義縣學前特殊需求幼兒與一般幼兒主要照顧者的教養態度、問題與親職壓力差異之探究。幼兒教保研究期刊,11, 21-41。 張秀玉(2013)。從生態系統觀點探究影響早期療育專業團隊協同合作之因素。身心障礙研究季刊,11(4),262-275。 張春興(1999)。教育心理學—三化取向的理論與實踐(修訂版)。臺北:東華。 張英熙(2014)。特殊兒童家長諮商。特殊教育發展期刊,57,23-38。 張景淵(2011)。民眾對基因檢測的態度:信任、風險、效益與認知的關係(未出版之學位論文)。國立成功大學公共衛生研究所學位論文。 張翠娥、鈕文英 (2007)。跨專業服務融入早期療育課程實施歷程研究。特殊教育學報,26,111-137。 教育部(2019)。特殊教育統計年報。臺北:教育部。 陳素珍(2005)。中部某醫院護理人員之遺傳學知識、態度與在職教育需求之探討(未出版之學位論文)。臺灣大學分子醫學研究所學位論文。 傅秀媚(2002)。早期療育中跨專業團隊評估模式相關問題研究。特殊教育學報,16,1-22。 鈕文英(2012)。質性研究方法與論文寫作。臺北:雙葉。 黃嘉紋(2008)。臺北市幼稚園特教巡迴輔導教師在融合教育中角色職責與專業成長需求之研究(未出版之學位論文)。國立臺北教育大學特殊教育學系學位論文。 黃嘉惠 (2016)。星事.心事:自閉症兒童母親教養之心路歷程(未出版之學位論文)。國立台北護理健康大學嬰幼兒保育研究所學位論文。 廖華芳(1998)。發展遲緩兒童早期療育專業團隊合作模式。中華民國物理治療學會雜誌,23(2),127-140。 劉世閔(2006)。台灣地區中學教師對基因科技知覺與 ELSI 態度之調查研究。調查研究-方法與應用,19,29-65。 蔡甫昌、許毓仁、莊宇真、簡意玲、蔡文哲(2019)。自閉症類群障礙遺傳檢驗與諮詢之倫理議題。臺灣醫學,23(6),687-698。
二、英文部分 Ashida, S., Goodman, M., Pandya, C., Koehly, L. M., Lachance, C., Stafford, J., & Kaphingst, K. A. (2011). Age differences in genetic knowledge, health literacy and causal beliefs for health conditions. Public health genomics, 14(4-5), 307-316. https://doi.org/10.1159/000316234 Biesecker, B., Austin, J., & Caleshu, C. (2017). Response to a different vantage point commentary: Psychotherapeutic genetic counseling, is it? Journal of Genetic Counseling, 26(2), 334-336. https://doi.org/10.1007/s10897-016-0025-z Cambon-Thomsen, A. (2004). The social and ethical issues of post-genomic human biobanks. Nature Reviews Genetics, 5(11), 866-873. https://doi.org/10.1038/nrg1473 Castéra, J., & Clément, P. (2014). Teachers’ conceptions about the genetic determinism of human behaviour: A survey in 23 countries. Science & Education, 23(2), 417-443. https://doi.org/10.1007/s11191-012-9494-0 Cebesoy, Ü. B., & Öztekin, C. (2016). Relationships among Turkish pre-service science teachers’ genetics literacy levels and their attitudes towards issues in genetics literacy. Journal of Baltic Science Education, 15(2), 159. Cebesoy, U. B., & Oztekin, C. (2018). Genetics literacy: Insights from science teachers’ knowledge, attitude, and teaching perceptions. International Journal of Science and Mathematics Education, 16(7), 1247-1268. https://doi.org/10.1007/s10763-017-9840-4 Cebesoy, Ü. B., & Tekkaya, C. (2012). Pre-service science teachers’ genetic literacy level and attitudes towards genetics. Procedia-Social and Behavioral Sciences, 31, 56-60. https://doi.org/10.1016/j.sbspro.2011.12.016 Chapman, R., Likhanov, M., Selita, F., Zakharov, I., Smith-Woolley, E., & Kovas, Y. (2019). New literacy challenge for the twenty-first century: genetic knowledge is poor even among well educated. Journal of Community Genetics, 10(1), 73-84. https://doi.org/10.1007/s12687-018-0363-7 Chen, L. S., Xu, L., Huang, T. Y., & Dhar, S. U. (2013). Autism genetic testing: a qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorders.,Genetics Medicine 15(4), 274-281. https://doi.org/10.1038/gim.2012.145 Chen, W. J., Zhao, S., Huang, T. Y., Kwok, O. M., & Chen, L. S. (2020). Autism Spectrum Disorders: Prenatal genetic testing and abortion decision-making among Taiwanese mothers of affected children. International Journal of Environmental Research and Public Health, 17(2), 476-489. https://doi.org/10.3390/ijerph17020476 Chokoshvili, D., Belmans, C., Poncelet, R., Sanders, S., Vaes, D., Vears, D., Janssens, S., Huys, I., & Borry, P. (2017). Public views on genetics and genetic testing: A survey of the general public in Belgium. Genetic Testing and Molecular Biomarkers, 21(3), 195-201. https://doi.org/10.1089/gtmb.2016.0418 Collins, F. S. (1999). Medical and societal consequences of the human genome project. New England Journal of Medicine, 341(1), 28-37. http://doi.org/10.1056 / NEJM199907013410106 Collins, F. S., & McKusick, V. A. (2001). Implications of the human genome project for medical science. Journal of the American Medical Association, 285(5), 540-544. http://doi.org/jama.285.5.540 Collins, F. S., Green, E. D., Guttmacher, A. E., & Guyer, M. S. (2003). A vision for the future of genomics research. Nature, 422(6934), 835-847. https://doi.org/10.1038/nature01626 Collins, F. S., Patrinos, A., Jordan, E., Chakravarti, A., Gesteland, R., & Walters, L. (1998). New goals for the US human genome project: 1998-2003. Science, 282(5389), 682-689. https://doi.org/10.1126 / science.282.5389.682 Cowan, W. M., Kopnisky, K. L., & Hyman, S. E. (2002). The human genome project and its impact on psychiatry. Annual Review of Neuroscience, 25(1), 1-50. https://doi.org/10.1146 / annurev.neuro.25.112701.142853 DeThorne, L. S., & Ceman, S. (2018). Genetic testing and autism: Tutorial for communication sciences and disorders. Journal of Communication Disorders, 74, 61-73. https://doi.org/10.1016/j.jcomdis.2018.05.003 Eagly, A. H., & Chaiken, S. (1993). The psychology of attitudes. Orlando, FL, US: Harcourt Brace Jovanovich College Publishers. Erdoğan, A., Özsevgeç, L. C., & Özsevgeç, T. (2014). A study on the genetic literacy levels of prospective teachers. Electronic Journal of Science & Mathematics Education,8(2), 19-37. Etchegary, H., Green, J., Parfrey, P., Street, C., & Pullman, D. (2015). Community engagement with genetics: public perceptions and expectations about genetics research. Health Expectations, 18(5), 1413-1425. https://doi.org/10.1111/hex.12122 Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., & Willard, H. F. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327-335. https://doi.org/10.1089 / gtmb.2012.0350 Handcock, M. S., & Gile, K. J. (2011). Comment: On the concept of snowball sampling. Sociological Methodology, 41(1), 367-371. https://doi.org/10.1111/j.1467-9531.2011.01243.x Henneman, L., Timmermans, D. R., & Van der Wal, G. (2004). Public experiences, knowledge and expectations about medical genetics and the use of genetic information. Public Health Genomics, 7(1), 33-43. https://doi.org/10.1159 / 000080302 Henneman, L., Vermeulen, E., van El, C. G., Claassen, L., Timmermans, D. R. M., & Cornel, M. C. (2013). Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010. European Journal of Human Genetics, 21(8), 793-799. https://doi.org/ 10.1038/ejhg.2012.271 Hodapp, R. M., & Fidler, D. J. (1999). Special education and genetics:Connections for the 21st Century. The Journal of Special Education, 33(3), 130-137. https://doi.org/ 10.1177/002246699903300301 Kaye, C., & Korf, B. (2013). Genetic literacy and competency. Pediatrics, 132(Supplement 3), S224-S230. https://doi.org/10.1542/peds.2013-1032G Landgrave-Gómez, J., Mercado-Gómez, O., & Guevara-Guzmán, R. (2015). Epigenetic mechanisms in neurological and neurodegenerative diseases. Frontiers in Cellular Neuroscience, 9(56), 1-11. https://doi.org/10.3389/fncel.2015.00058 Langer, M. M., Roche, M. I., Brewer, N. T., Berg, J. S., Khan, C. M., Leos, C., ... & Rini, C. (2017). Development and validation of a genomic knowledge scale to advance informed decision-making research in genomic sequencing. Medical Decision Making Policy & Practice, 2(1). https://doi.org/10.1177/2381468317692582 Lanie, A. D., Jayaratne, T. E., Sheldon, J. P., Kardia, S. L., Anderson, E. S., Feldbaum, M., & Petty, E. M. (2004). Exploring the public understanding of basic genetic concepts. Journal of Genetic Counseling, 13(4), 305-320. https://doi.org/10.1023 / b:jogc.0000035524.66944.6d Loke, Y. J., Hannan, A. J., & Craig, J. M. (2015). The role of epigenetic change in autism spectrum disorders. Frontiers in Neurology, 6(107), 1-18. https://doi.org/10.3389/fneur.2015.00107 Makeeva, O. A., Markova, V. V., Roses, A. D., & Puzyrev, V. P. (2010). An epidemiologic-based survey of public attitudes towards predictive genetic testing in Russia. Personalized Medicine, 7(3), 291-300. https://doi.org/10.2217 /pme.10.23 Mboowa, G., & Sserwadda, I. (2019). Role of genomics literacy in reducing the burden of common genetic diseases in Africa. Molecular Genetics & Genomic Medicine, 7(7), e00776. https://doi.org/10.1002/mgg3.776 Meaney, M. J. (2010). Epigenetics and the biological definition of gene× environment interactions. Child Development, 81(1), 41-79. https://doi.org/10.1111 / j.1467-8624.2009.01381.x Miller, F. A., Hayeems, R. Z., & Bytautas, J. P. (2010). What is a meaningful result? Disclosing the results of genomic research in autism to research participants. European Journal of Human Genetics, 18(8), 867-871. https://doi.org/10.1038/ejhg.2010.34 Molster, C., Charles, T., Samanek, A., & O’Leary, P. (2009). Australian study on public knowledge of human genetics and health. Public Health Genomics, 12(2), 84-91. https://doi.org/10.1159/000164684 Narcisa, V., Discenza, M., Vaccari, E., Rosen-Sheidley, B., Hardan, A. Y., & Couchon, E. (2013). Parental interest in a genetic risk assessment test for autism spectrum disorders. Clinical Pediatrics, 52(2), 139-146. https://doi.org/10.1177/0009922812466583 Nemeroff, C. B., & Vale, W. W. (2005). The neurobiology of depression: Inroads to treatment and new drug discovery. The Journal of Clinical Psychiatry, 66, 5-13. Özsevgeç, L. C., Erdoğan, A., & Özsevgeç, T. (2014). Öğretmen adaylarının genetik okuryazarlık düzeyleri üzerine bir çalışma. Necatibey Eğitim Fakültesi Elektronik Fen ve Matematik Eğitimi Dergisi, 8(2), 19-37. https://doi.org/10.17522/nefefmed.67307 Reiff, M., Bugos, E., Giarelli, E., Bernhardt, B. A., Spinner, N. B., Sankar, P. L., & Mulchandani, S. (2017). "Set in Stone" or "Ray of Hope": Parents' beliefs about cause and prognosis after genomic testing of children diagnosed with ASD. Journal of Autism and Developmental Disorders, 47(5), 1453-1463. https://doi.org/10.1007/s10803-017-3067-7 Reiff, M., Giarelli, E., Bernhardt, B. A., Easley, E., Spinner, N. B., Sankar, P. L., & Mulchandani, S. (2015). Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 45(10), 3262-3275. https://doi.org/10.1007/s10803-015-2489-3 Saihan, Z., Webster, A. R., Luxon, L., & Bitner-Glindzicz, M. (2009). Update on usher syndrome. Current Opinion in Neurology, 22(1), 19-27. https://doi.org/10.1097/WCO.0b013e3283218807 Sawicki, M. P., Samara, G., Hurwitz, M., & Passaro Jr, E. (1993). Human genome project. The American Journal of Surgery, 165(2), 258-264. https://doi.org/10.1016/S0002-9610(05)80522-7 Selkirk, C. G., McCarthy Veach, P., Lian, F., Schimmenti, L., & LeRoy, B. S. (2009). Parents' perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors. Journal of Genetic Counseling, 18(5), 507-519. https://doi.org/10.1007/s10897-009-9233-0 Sharp, R. R., & Barrett, J. C. (2000). The environmental genome project: Ethical, legal, and social implications. Environmental Health Perspectives, 108(4), 279-281. https://doi.org/10.1289/ehp.00108279 Sohn, E. (2016). Diagnosis: A clear answer. Nature, 537(7619), S64-S65. https://doi.org/10.1038/537S64a Statham, H., Ponder, M., Richards, M., Hallowell, N., & Raymond, F. L. (2011). A family perspective of the value of a diagnosis for intellectual disability: Experiences from a genetic research study. British Journal of Learning Disabilities, 39(1), 46-56. https://doi.org/10.1111/j.1468-3156.2010.00615.x Taylor, S. (2011). A population-based survey in Australia of men’s and women’s perceptions of genetic risk and predictive genetic testing and implications for primary Care. Public Health Genomics, 14(6), 325-336. https://doi.org/10.1159/000324706 Wagner, K. E., McCormick, J. B., Barns, S., Carney, M., Middleton, F. A., & Hicks, S. D. (2020). Parent perspectives towards genetic and epigenetic testing for autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(9), 3114-3125. https://doi.org/10.1007/s10803-019-03990-6 Watson, J. D. (1990). The human genome project: past, present, and future. Science, 248(4951), 44-49. https://doi.org/10.1126/science.2181665. Waye, M. M. Y., & Cheng, H. Y. (2018). Genetics and epigenetics of autism: A review. Psychiatry Journal of Clinical Neuroscience, 72(4), 228-244. https://doi.org/10.1111/pcn.12606 Xu, L., Mitchell, L. C., Richman, A. R., & Clawson, K. (2016). What do parents think about chromosomal microarray testing? a qualitative report from parents of children with autism spectrum disorders. Autism Research and Treatment, 2016, 6852539. https://doi.org/10.1155/2016/6852539 Yilmaz, S., Ayhan, A. B., Göktaş, B., & BEYAZIT, U. (2016). Special education teachers’ knowledge about genetic disorders. Nevşehir Bilim ve Teknoloji Dergisi, 5(2), 65-73. https://doi.org/10.17100 / nevbiltek.284731 Yusuf, A., Peltekova, I., Savion-Lemieux, T., Frei, J., Bruno, R., Joober, R., . . . & Elsabbagh, M. (2019). Association between distress and knowledge among parents of autistic children. Public Library of Science, 14(9), e0223119. https://doi.org/10.1371/journal.pone.0223119 Zenk, F., Loeser, E., Schiavo, R., Kilpert, F., Bogdanović, O., & Iovino, N. (2017). Germ line–inherited H3K27me3 restricts enhancer function during maternal-to-zygotic transition. Science, 357(6347), 212-216. https://doi.org/10.1126/science.aam5339 Zhao, S., Wang, C. H., Huang, T. Y., Chen, Y. J., Hsiao, C. H., Tseng, C. C., & Chen, L. S. (2018). A qualitative study exploring the attitudes toward prenatal genetic testing for autism spectrum disorders among parents of affected children in Taiwan. Research in Autism Spectrum Disorders, 48, 36-43. https://doi.org/10.1016/j.rasd.2018.01.006 Zlot, A., Newell, A., Silvey, K., & Arail, K. (2007). Peer reviewed: Addressing the obesity epidemic: A genomics perspective. Preventing Chronic Disease, 4(2), A31.
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