Scientists' perspectives on consent in the context of biobanking research

被引:34
|
作者
Master, Zubin [1 ,2 ]
Campo-Engelstein, Lisa [3 ]
Caulfield, Timothy [4 ,5 ]
机构
[1] Albany Med Coll, Alden March Bioeth Inst, Albany, NY 12208 USA
[2] Univ Alberta, Ctr Law, Hlth Law Inst, Edmonton, AB, Canada
[3] Albany Med Coll, OBGYN Dept, Alden March Bioeth Inst, Albany, NY 12208 USA
[4] Univ Alberta, Ctr Law, Fac Law, Hlth Law Inst, Edmonton, AB, Canada
[5] Univ Alberta, Ctr Law, Sch Publ Hlth, Edmonton, AB, Canada
关键词
INFORMED-CONSENT; GENOMIC RESEARCH; HUMAN TISSUE; ATTITUDES; MODEL; PARTICIPANTS; PERCEPTIONS; OPINIONS; BANKING; ETHICS;
D O I
10.1038/ejhg.2014.143
中图分类号
Q5 [生物化学]; Q7 [分子生物学];
学科分类号
071010 ; 081704 ;
摘要
Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved with biobanks as collectors and users of samples and health information. In this study, we performed interviews with scientists followed by qualitative analysis to capture the diversity of perspectives on informed consent. We found that the majority of scientists in our study reported their preference for a general consent approach although they do not believe there to be a consensus on consent type. Despite their overall desire for a general consent model, many reported several concerns including donors needing some form of assurance that nothing unethical will be done with their samples and information. Finally, scientists reported mixed opinions about incorporating exclusion clauses in informed consent as a means of limiting some types of contentious research as a mechanism to assure donors that their samples and information are being handled appropriately. This study is one of the first to capture the views of scientists on informed consent in biobanking. Future studies should attempt to generalize findings on the perspectives of different scientists on informed consent for biobanking.
引用
收藏
页码:569 / 574
页数:6
相关论文
共 50 条
  • [1] Scientists’ perspectives on consent in the context of biobanking research
    Zubin Master
    Lisa Campo-Engelstein
    Timothy Caulfield
    European Journal of Human Genetics, 2015, 23 : 569 - 574
  • [2] Reshaping Informed Consent in the Biobanking Context
    Macilotti, Matteo
    EUROPEAN JOURNAL OF HEALTH LAW, 2012, 19 (03) : 271 - 288
  • [3] Public Perspectives on Informed Consent for Biobanking
    Murphy, Juli
    Scott, Joan
    Kaufman, David
    Geller, Gail
    LeRoy, Lisa
    Hudson, Kathy
    AMERICAN JOURNAL OF PUBLIC HEALTH, 2009, 99 (12) : 2128 - 2134
  • [4] Blanket Consent and Trust in the Biobanking Context
    Nielsen, Morten Ebbe Juul
    Kongsholm, Nana Cecilie Halmsted
    JOURNAL OF BIOETHICAL INQUIRY, 2022, 19 (04) : 613 - 623
  • [5] Blanket Consent and Trust in the Biobanking Context
    Morten Ebbe Juul Nielsen
    Nana Cecilie Halmsted Kongsholm
    Journal of Bioethical Inquiry, 2022, 19 : 613 - 623
  • [6] Human dignity and consent in research biobanking
    Kirchhoffer, D. G.
    Dierickx, K.
    SOUTH AFRICAN JOURNAL OF BIOETHICS AND LAW, 2012, 5 (02) : 74 - 77
  • [7] Informed consent in biobanking and genetic research
    Casado da Rocha, Antonio
    Etxeberria Agiriano, Arantza
    ARBOR-CIENCIA PENSAMIENTO Y CULTURA, 2008, 184 (730) : 249 - 260
  • [8] Consent for biobanking
    Laurie, Graeme
    BMJ-BRITISH MEDICAL JOURNAL, 2008, 337 (7663):
  • [9] Broad Consent for Genomic Research and Biobanking: Perspectives from Low- and Middle-Income Countries
    Tindana, Paulina
    de Vries, Jantina
    ANNUAL REVIEW OF GENOMICS AND HUMAN GENETICS, VOL 17, 2016, 17 : 375 - 393
  • [10] Broad consent in biobanking
    Chris Hempel
    Geoffrey Lomax
    Steve Peckman
    Nature Biotechnology, 2012, 30 : 826 - 826