Intellectual Disabilities and Autism: Ethics and Practice
Bianchi, Andria, Vogt, Janet A.
- 出版商: Springer
- 出版日期: 2024-09-02
- 售價: $5,390
- 貴賓價: 9.5 折 $5,121
- 語言: 英文
- 頁數: 599
- 裝訂: Hardcover - also called cloth, retail trade, or trade
- ISBN: 3031615646
- ISBN-13: 9783031615641
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商品描述
This book meaningfully reflects upon difficult, timely, and debated ethics questions relating to people with intellectual disabilities (IDs) and autistic people. The book challenges now dated perceptions and introduces innovative ideas by leading scholars regarding some of the most complex, controversial, and relevant ethical dilemmas involving these neurodiverse populations. People with IDs and/or those on the autism spectrum continue to experience various forms of oppression and unjust treatment across the globe, despite the UN Convention on the Rights of Persons with Disabilities (CRPD).
The collection explores questions such as: Can people with IDs make informed decisions about their medical treatment, living circumstances, and overall life? What are the ethical implications of selective termination of pregnancy based on a gene linked to a condition conferring intellectual impairment? How can we ensure that people with IDs and autistic people are meaningfully included in research? Can people with IDs successfully parent? How can we support the capabilities of neurodiverse populations such that they enjoy the rights afforded by the CRPD? Each contributor critically examines how we can move forward to create a world that understands and respects the rights of every person with ID and/or autism. An indispensable read for bioethicists, ethics students, social justice scholars, and others interested in and working with people with IDs and autistic people.
商品描述(中文翻譯)
這本書有意義地反思了與智能障礙(IDs)和自閉症人士相關的困難、及時和有爭議的倫理問題。該書通過領先學者介紹創新思想,挑戰了現今過時的觀念,關於這些神經多樣性人群中最複雜、有爭議和相關的倫理困境。儘管《聯合國殘疾人權利公約》(CRPD)已經存在,但在全球範圍內,智能障礙者和/或自閉症人士仍然遭受各種形式的壓迫和不公正對待。
這本書探討了一系列問題,例如:智能障礙者能否對他們的醫療治療、生活環境和整體生活做出明智的決策?基於與智能障礙相關的基因進行選擇性終止懷孕的倫理影響是什麼?我們如何確保智能障礙者和自閉症人士在研究中得到有意義的包容?智能障礙者能否成功擔當父母的角色?我們如何支持神經多樣性人群的能力,使他們享有CRPD所賦予的權利?每位貢獻者都批判性地檢視我們如何向前邁進,創造一個理解並尊重每個智能障礙者和/或自閉症人士權利的世界。對於生物倫理學家、倫理學生、社會正義學者以及對智能障礙者和自閉症人士感興趣並與之合作的其他人來說,這是一本不可或缺的閱讀材料。
作者簡介
Andria Bianchi works as a Clinical Ethicist at the Centre for Clinical Ethics at Unity Health Toronto. As part of her role, Andria provides clinical, organizational, and research ethics support to Surrey Place. Surrey Place is the lead agency for Developmental Services Ontario Toronto Region, providing support to people of all ages, including autistic people, and those with developmental and sensory-related concerns. Andria was introduced to Surrey Place ten years ago during her ethics training, and has had the pleasure being their consulting ethicist for the past 5 years. Given her experiences in the developmental sector, Andria is often consulted at local acute and post-acute care hospitals when ethical dilemmas arise regarding the provision of care for people with intellectual disabilities and those on the autism spectrum. In addition to her role as an ethicist, Andria is an Assistant Professor at the University of Toronto in the Dalla Lana School of Public Health, where she has taught Clinical Bioethics to fourth year undergraduate students, supervised Master of Health Sciences in Bioethics students, and offered countless guest lectures. Andria focuses her teaching and research on ethical complexities related to persons with cognitive impairments. Prior to commencing her career in bioethics, she completed her Ph.D. in Philosophy where she focused her doctoral research on sexual decision-making and people with cognitive impairments, specifically those with dementia. Andria has published several individual and co-authored peer-reviewed publications, non-peer reviewed publications, and book chapters, many of which relate to people with cognitive impairments and/or disabilities. She has presented her work at local, national, and international conferences. Andria is also a primary ethics columnist for Hospital News (Canada's largest healthcare newspaper) and serves as an editor of the Canadian Journal of Bioethics.
Janet Vogt is Senior Research Associate and Manager in the Research, Evaluation & Education Department at Surrey Place. She completed her Ph.D. in Nutritional Sciences and her M.H.Sc. in Bioethics at the University of Toronto, having completed her undergraduate degrees at the University of British Columbia. At Surrey Place, she has been a member of the Research Ethics Board, co-chair of the Clinical Ethics Committee, and currently leads the Ethics Education working group. As the Surrey Place ethics lead with Toronto's Community Ethics Network, she led the development of an organizational ethics framework and toolkit for community agencies. Each year, she mentors medical students from the University of Toronto, engaging them in projects designed to raise their awareness of bioethics issues arising in the delivery of health care and other services for people with developmental disabilities. She has presented on ethics, developmental disabilities, and nutrition at local, national, and international conferences and has taught university courses in nutrition and research methods as well as giving guest lectures in the Master of Health Sciences (Bioethics) program. Her publications include co-authored peer-reviewed publications, book chapters, and tools to support healthcare access for people with developmental disabilities. Her education in developmental disabilities began in childhood as the sister to an older sibling with a severe developmental disability.
作者簡介(中文翻譯)
Andria Bianchi在Unity Health Toronto的Centre for Clinical Ethics擔任臨床倫理學家。作為她的職責的一部分,Andria為Surrey Place提供臨床、組織和研究倫理學的支持。Surrey Place是Developmental Services Ontario Toronto Region的主要機構,為各年齡段的人提供支持,包括自閉症患者和發展和感官相關問題的人。十年前,在倫理學培訓期間,Andria認識了Surrey Place,並在過去的五年中擔任他們的諮詢倫理學家。由於她在發展領域的經驗,當涉及為智力殘疾人和自閉症譜系人士提供護理時出現倫理困境時,Andria經常被當地急性和後急性護理醫院諮詢。除了擔任倫理學家的角色外,Andria還是多倫多大學Dalla Lana公共衛生學院的助理教授,她在那裡教授臨床生物倫理學給四年級本科生,指導健康科學碩士生的生物倫理學學生,並提供無數的客座講座。Andria的教學和研究重點是與認知障礙人士相關的倫理複雜性。在開始從事生物倫理學職業生涯之前,她在哲學方面完成了博士學位,她的博士研究集中在性決策和認知障礙人士,特別是患有失智症的人。Andria發表了幾篇個人和合著的同行評審出版物、非同行評審出版物和專書章節,其中許多與認知障礙和/或殘疾人有關。她在當地、國家和國際會議上發表了她的工作。Andria還是《醫院新聞》(加拿大最大的醫療報紙)的主要倫理專欄作家,並擔任《加拿大生物倫理學雜誌》的編輯。
Janet Vogt是Surrey Place研究、評估和教育部門的高級研究員和經理。她在多倫多大學完成了營養科學博士學位和生物倫理學碩士學位,並在英屬哥倫比亞大學完成了本科學位。在Surrey Place,她是研究倫理委員會的成員,臨床倫理委員會的聯席主席,目前領導倫理教育工作小組。作為多倫多社區倫理網絡的Surrey Place倫理主管,她領導了為社區機構制定組織倫理框架和工具包的開發。每年,她指導多倫多大學的醫學生,讓他們參與旨在提高他們對發展障礙人士醫療和其他服務中出現的生物倫理問題的認識的項目。她在當地、國家和國際會議上就倫理、發展障礙和營養問題發表演講,並在大學的營養和研究方法課程中教授,並在健康科學碩士(生物倫理學)課程中作客座講座。她的出版物包括合著的同行評審出版物、專書章節和支持發展障礙人士獲得醫療保健的工具。她對發展障礙的教育始於童年,因為她是一位有嚴重發展障礙的兄姐的妹妹。