發展障礙研究倫理指引：支持障礙者參與研究

Developing Guidelines for Disability Research Ethics: Doing research with disabled people

本文探討為何與障礙者一起做研究是重要的倫理議題，並依據介入研究典範，發展支持障礙者有意義、充分參與研究的「障礙研究倫理基本原則與操作指引」（以下簡稱「指引」）。資料蒐集包括：系統性檢視相關文獻、法規與既有指引，並邀請不同障別的障礙者接受訪談並參與焦點團體座談，透過分享自身障礙經驗知識，作為發展本指引的重要經驗校準。訪談資料分析聚焦在脈絡化說明障礙研究倫理的支持須知，提供通用的支持策略及不同障別所需要的個別化支持。最後，本文建議研究者應積極支持障礙者參與研究，以呼應「No research about us without us」，同時，希冀透過本指引的推廣，讓研究者、實務工作者與倫理審查夥伴知道為何支持、如何支持障礙者充分參與研究，本身即是重要的研究倫理議題。

The present study explores the reason why supporting disabled people to meaningfully participate in research is an important ethical concern; the aim thus is to develop Guidelines for Taiwan Disability Research Ethics. Data collection includes the systematic review of the existing literature and guideline materials as well as in-depth-interviews with disabled people with diverse support needs in order to learn from their experiential knowledge in order to conduct ethical research. In so doing, we further refine and reconceptualize the primary principles of the Belmont Report: respect, beneficence and justice. The interview data allow us to better contextualize the Disability Research Ethics, to provide support strategies that accommodate diverse needs of disabled people, and to develop Guidelines for Disability Research Ethics. “No research about us without us” is the dictum and we urge researchers to provide active support and promote disabled people’s rights to research. To conclude, Guidelines for Disability Research Ethics are presented in order to better equip researchers with the knowledge to carry out research ethically with disabled people.