Recap: CUHK Centre for Bioethics 10th Anniversary Celebration Symposium

It is with great pleasure to share that we celebrated the 10th Anniversary of the CUHK Centre for Bioethics with our Symposium themed “Science, Medicine, and Beyond: Connecting the Global Communities with Bioethics,” on 21 February 2025. This symposium was a resounding success, bringing together esteemed speakers, experts and professionals in the field to engage […]
AI and Better Health: Challenges to Trust and Governance
Date: 8 February 2023 (Wednesday) Time: 10:00 a.m. – 12:00 p.m. (HKT) / 6:00 p.m. – 8:00 p.m. on 7 February 2023 (PST) Venue: On site: LT4, 3/F, Cheng Yu Tung Building, CUHK; Online: via Zoom Webinar Speakers:-Prof. Roger Chung, Co-Director, CUHK Centre for Bioethics; Associate Professor, JC School of Public Health and Primary Care, CUHK(Presentation Topic: “Development of […]
Lessons from Li: A Confucian Inspired Approach to Global Bioethics
Date: 8 February 2023 (Wednesday) Time: 10:00 a.m. – 12:00 p.m. (HKT) / 6:00 p.m. – 8:00 p.m. on 7 February 2023 (PST) Venue: On site: LT4, 3/F, Cheng Yu Tung Building, CUHK; Online: via Zoom Webinar Speakers:-Prof. Roger Chung, Co-Director, CUHK Centre for Bioethics; Associate Professor, JC School of Public Health and Primary Care, CUHK(Presentation Topic: “Development of […]
Current and Emerging Prenatal Testing Technologies: Bioethical Implications
Date: 8 February 2023 (Wednesday) Time: 10:00 a.m. – 12:00 p.m. (HKT) / 6:00 p.m. – 8:00 p.m. on 7 February 2023 (PST) Venue: On site: LT4, 3/F, Cheng Yu Tung Building, CUHK; Online: via Zoom Webinar Speakers:-Prof. Roger Chung, Co-Director, CUHK Centre for Bioethics; Associate Professor, JC School of Public Health and Primary Care, CUHK(Presentation Topic: “Development of […]
Physician-Assisted Dying: A Slippery Slope?
Date: 8 February 2023 (Wednesday) Time: 10:00 a.m. – 12:00 p.m. (HKT) / 6:00 p.m. – 8:00 p.m. on 7 February 2023 (PST) Venue: On site: LT4, 3/F, Cheng Yu Tung Building, CUHK; Online: via Zoom Webinar Speakers:-Prof. Roger Chung, Co-Director, CUHK Centre for Bioethics; Associate Professor, JC School of Public Health and Primary Care, CUHK(Presentation Topic: “Development of […]
Socio-Cultural Context of Slippery Slope
Date: 8 February 2023 (Wednesday) Time: 10:00 a.m. – 12:00 p.m. (HKT) / 6:00 p.m. – 8:00 p.m. on 7 February 2023 (PST) Venue: On site: LT4, 3/F, Cheng Yu Tung Building, CUHK; Online: via Zoom Webinar Speakers:-Prof. Roger Chung, Co-Director, CUHK Centre for Bioethics; Associate Professor, JC School of Public Health and Primary Care, CUHK(Presentation Topic: “Development of […]
Weithman Handout
Date: 8 February 2023 (Wednesday) Time: 10:00 a.m. – 12:00 p.m. (HKT) / 6:00 p.m. – 8:00 p.m. on 7 February 2023 (PST) Venue: On site: LT4, 3/F, Cheng Yu Tung Building, CUHK; Online: via Zoom Webinar Speakers:-Prof. Roger Chung, Co-Director, CUHK Centre for Bioethics; Associate Professor, JC School of Public Health and Primary Care, CUHK(Presentation Topic: “Development of […]
Lessons from li: a confucian-inspired approach to global bioethics
「冰桶挑戰」十周年:香港罕見病政策之倫理思考 董咚博士 (信報「生命倫理線」專欄 06.01.2025)

董咚博士 中文大學生命倫理學中心研究員(禮任) 「冰桶挑戰」於2014年在社群媒體上燃起支持「漸凍症」研究熱潮,也讓世人更關注罕見病者境況。10年過去,「冰桶挑戰」熱潮已退。今年,雖然全球各地再次掀起第二次冰桶挑戰,卻已不復當年熱度。在香港,10年來,隨着患者、家屬及相關組織的不懈努力,社會對罕見病問題的認識顯著提升,有關議題逐漸進入公眾視野。然而,香港至今仍未出台針對罕見病的專門政策,這一現實亟需從倫理層面進行深入探討。 香港醫療政策的目標,早在1974年的《香港醫療及衛生服務進一步發展白皮書》已明確提出,旨在「保障和促進整個社會的公共健康,並確保為香港市民提供醫療和個人健康服務,使任何人不會因缺乏經濟能力而無法獲得足夠的醫療治療」。基於這一目標,許多人認為,現有制度已足以確保罕見病患者獲得與常見病患者相同的健康服務;他們甚至擔憂,為罕見病患者制定特殊政策可能導致不平等,因為這些政策可能會賦予罕見病患者特殊待遇。然而,這一論點忽視了罕見病患者面臨特殊困境和健康不平等問題。 2019年的研究估計,全球約有2.63億至4.46億人受罕見病影響。在香港,已有文獻指出,每67人中就有1人在其一生中受到罕見病影響,總計約11萬人。這些數據表明,罕見病不僅是一個個體問題,更是公共健康議題的重要組成部分。缺乏針對罕見病的特定政策,不僅讓患者及其家庭陷入困境,還暗示着在決策上把罕見病視為「非重要性」。 然而,罕見病患者面臨的困難和障礙,不僅限於醫療層面,還涉及社會公平。如公共場所中缺乏無障礙設施,以及政府醫療和社會福利計劃的支持不足,這些問題不僅影響罕見病患者,也對整個社會的健康公平構成挑戰。因此,從公共健康倫理角度看,罕見病不應被視為「罕見」的孤立現象,而是關乎整體社會福祉的共同責任。 「無知之幕」原則 美國當代哲學家羅爾斯(John Rawls)的「無知之幕」理念,為討論罕見病政策提供了一個倫理框架。設想在「無知之幕」的掩蓋下,人們不清楚自己的社會地位、健康狀況或其他先天與後天特徵,因此傾向於選擇最能保護最弱勢群體的政策。如每個人都可能成為罕見病患者,他們更可能支持制定特殊政策,以保護這弱勢群體。羅爾斯指出,這樣的決策更符合公平原則,因它考慮了所有人潛在的脆弱性和不確定性。 羅爾斯的差別原則(Difference Principle)進一步強調,社會和經濟的不平等,只有在能改善最弱勢群體處境時,才是正當的。針對罕見病政策設計,正是實現健康公平的重要步驟。這些政策不應被視為對罕見病患者的「特殊優待」,而是為了補足現有體系中的不足,讓罕見病患者能平等地享有基本權利和健康機會。 公共衛生的核心理念,不單是預防疾病和促進福祉,也有健康公平的目標,要促進資源和機會的平等分配,特別是對弱勢群體的支持。在香港,儘管普及醫療制度保障了大多數市民的基本健康需求,但罕見病患者的困境表明,現行政策仍可進一步優化。建立針對罕見病政策可提升社會對該問題的認知,減少健康不平等,並鼓勵創新與多學科合作。 從倫理學角度看,正視罕見病患者的健康需求,是社會公義的一個重要維度。制定罕見病政策不是要求優待,因此並非對健康公平的威脅,反而是促進健康公平的重要一步。當我們通過「無知之幕」反思公平,我們可以更清楚地看到,罕見病政策的推行不僅對少數群體的支持,更是實現整個社會共同福祉的關鍵。