Marking Shifts in Human Research Ethics in the Development of Biobanking

被引:11
|
作者
Chalmers, Don [1 ]
Burgess, Michael [2 ,3 ]
Edwards, Kelly [4 ]
Kaye, Jane [5 ]
Meslin, Eric M. [6 ]
Nicol, Dianne [1 ]
机构
[1] Univ Tasmania, Fac Law, Ctr Law & Genet, Hobart, Tas 7001, Australia
[2] Univ British Columbia, W Maurice Young Ctr Appl Eth, Sch Populat & Publ Hlth, Dept Med Genet, Vancouver, BC V5Z 1M9, Canada
[3] Univ British Columbia, Southern Med Program, Vancouver, BC V5Z 1M9, Canada
[4] Univ Washington, Dept Bioeth & Humanities, Seattle, WA 98195 USA
[5] Univ Oxford, Dept Publ Hlth, Ctr Law Hlth & Emerging Technol HeLEX, Oxford OX1 2JD, England
[6] Indiana Univ, Sch Med, Ctr Bioeth, Bloomington, IN 47405 USA
基金
澳大利亚研究理事会; 英国惠康基金;
关键词
BROAD CONSENT; GENOMICS; RECOMMENDATIONS; GOVERNANCE; SCIENCE; ACCESS; ISSUES; TIME; US;
D O I
10.1093/phe/phu023
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
Biobanks are increasingly being created specifically for research purposes. Concomitantly, we are seeing significant and evolving shifts in research ethics in relation to biobanking. Three discrete shifts are identified in this article. The first extends the ethical focus beyond the protection of human subjects to the promotion of broader community benefits of research utilizing biobanked resources, and an expectation that these benefits will be shared. The second involves the evolution of the traditional consent paradigm for future research uses of biobanks resources that are not in contemplation at the time of donation. The third involves a move away from single project management to more dynamic governance accountability to research participants and the public. These shifts may take different local and institutional forms but share common recognizable elements.
引用
收藏
页码:63 / 71
页数:9
相关论文
共 50 条
  • [31] Reflections on human embryo research: the debate in Portuguese ethics organizations
    Alves, Bruno Rodrigues
    Machado, Helena
    Silva, Susana
    HISTORIA CIENCIAS SAUDE-MANGUINHOS, 2013, 20 : 1137 - 1151
  • [32] Centering Human Subjects: The Ethics of "Desk Research" on Political Violence
    Green, Amelia Hoover
    Cohen, Dara Kay
    JOURNAL OF GLOBAL SECURITY STUDIES, 2021, 6 (02)
  • [33] Bureaucratic Ethics: IRBs and the Legal Regulation of Human Subjects Research
    Heimer, Carol A.
    Petty, JuLeigh
    ANNUAL REVIEW OF LAW AND SOCIAL SCIENCE, VOL 6, 2010, 6 : 601 - 626
  • [34] Promising waste: biobanking, embryo research, and infrastructures of ethical efficiency
    Hurlbut, J. Benjamin
    MONASH BIOETHICS REVIEW, 2015, 33 (04) : 301 - 324
  • [35] Biobanking for Neurodegenerative Diseases: Challenge for Translational Research and Data Privacy
    Giannella, Emilia
    Notarangelo, Valentino
    Motta, Caterina
    Sancesario, Giulia
    NEUROSCIENTIST, 2023, 29 (02) : 190 - 201
  • [36] The Ethics of Traditional Chinese and Western Herbal Medicine Research: Views of Researchers and Human Ethics Committees in Australia
    Smith, Caroline A.
    Priest, Ros
    Carmady, Bridget
    Bourchier, Suzannah
    Bensoussan, Alan
    EVIDENCE-BASED COMPLEMENTARY AND ALTERNATIVE MEDICINE, 2011, 2011 : 1 - 7
  • [37] Psychology, ethics, and research ethics boards
    Sharpe, Donald
    Ziemer, Julie
    ETHICS & BEHAVIOR, 2022, 32 (08) : 658 - 673
  • [38] Patient and community attitudes toward perioperative biobanking and genomic research
    Liddell, J.
    Bain, C.
    Myles, P. S.
    ANAESTHESIA AND INTENSIVE CARE, 2017, 45 (03) : 384 - 395
  • [39] The Need for Research Infrastructures: A Narrative Review of Large-Scale Research Infrastructures in Biobanking
    Larsson, Anthony
    BIOPRESERVATION AND BIOBANKING, 2017, 15 (04) : 375 - 383
  • [40] Human research ethics committees members: ethical review personal perceptions
    Handal, Boris
    Campbell, Chris
    Watson, Kevin
    Maher, Marguerite
    Brewer, Keagan
    Irwin, Anne-Marie
    Fellman, Marc
    MONASH BIOETHICS REVIEW, 2021, 39 (01) : 94 - 114