Literature DB >> 25074466

Scientists' perspectives on consent in the context of biobanking research.

Zubin Master1, Lisa Campo-Engelstein2, Timothy Caulfield3.   

Abstract

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.

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Year:  2014        PMID: 25074466      PMCID: PMC4402622          DOI: 10.1038/ejhg.2014.143

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  33 in total

1.  Body of research--ownership and use of human tissue.

Authors:  R Alta Charo
Journal:  N Engl J Med       Date:  2006-10-12       Impact factor: 91.245

2.  Banking together. A unified model of informed consent for biobanking.

Authors:  Elena Salvaterra; Lucilla Lecchi; Silvia Giovanelli; Barbara Butti; Maria Teresa Bardella; Pier Alberto Bertazzi; Silvano Bosari; Guido Coggi; Domenico A Coviello; Faustina Lalatta; Maurizio Moggio; Mario Nosotti; Alberto Zanella; Paolo Rebulla
Journal:  EMBO Rep       Date:  2008-04       Impact factor: 8.807

3.  Biobanks need publicity.

Authors:  George Gaskell; Herbert Gottweis
Journal:  Nature       Date:  2011-03-10       Impact factor: 49.962

4.  Biobanks, consent and claims of consensus.

Authors:  Zubin Master; Erin Nelson; Blake Murdoch; Timothy Caulfield
Journal:  Nat Methods       Date:  2012-09       Impact factor: 28.547

5.  Attitudes toward genetic research review: results from a survey of human genetics researchers.

Authors:  K L Edwards; A A Lemke; S B Trinidad; S M Lewis; H Starks; M T Quinn Griffin; G L Wiesner
Journal:  Public Health Genomics       Date:  2011-04-11       Impact factor: 2.000

6.  Researcher practices on returning genetic research results.

Authors:  Christopher Heaney; Genevieve Tindall; Joe Lucas; Susanne B Haga
Journal:  Genet Test Mol Biomarkers       Date:  2010-10-12

Review 7.  Managing incidental findings in human subjects research: analysis and recommendations.

Authors:  Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

8.  Incorporating exclusion clauses into informed consent for biobanking.

Authors:  Zubin Master; David B Resnik
Journal:  Camb Q Healthc Ethics       Date:  2013-04       Impact factor: 1.284

9.  Research use of leftover newborn bloodspots: attitudes of Canadian geneticists regarding storage and informed consent requirements.

Authors:  Julie Richer; Musie S Ghebremichael; Albert E Chudley; Walter M Robinson; Benjamin S Wilfond; Mildred Z Solomon
Journal:  Genet Med       Date:  2011-04       Impact factor: 8.822

10.  Qualitative thematic analysis of consent forms used in cancer genome sequencing.

Authors:  Clarissa Allen; William D Foulkes
Journal:  BMC Med Ethics       Date:  2011-07-19       Impact factor: 2.652

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  15 in total

Review 1.  An Introduction to Starting a Biobank.

Authors:  Mitra D Harati; Ryan R Williams; Masoud Movassaghi; Amin Hojat; Gregory M Lucey; William H Yong
Journal:  Methods Mol Biol       Date:  2019

Review 2.  The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.

Authors:  Brent Daniel Mittelstadt; Luciano Floridi
Journal:  Sci Eng Ethics       Date:  2015-05-23       Impact factor: 3.525

3.  Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?

Authors:  Mohammad Firdaus Abdul Aziz; Aimi Nadia Mohd Yusof
Journal:  Asian Bioeth Rev       Date:  2019-05-25

Review 4.  The Ethics of Consent in a Shifting Genomic Ecosystem.

Authors:  Sandra Soo-Jin Lee
Journal:  Annu Rev Biomed Data Sci       Date:  2021-07-20

5.  Researchers' Perspectives on Informed Consent and Ethical Review of Biobank Research in South Africa: A Cross-Sectional Study.

Authors:  Erisa Mwaka; Lyn Horn
Journal:  J Empir Res Hum Res Ethics       Date:  2019-08-05       Impact factor: 1.742

6.  Current Status and Future Challenges of Biobank Research in Malaysia.

Authors:  Latifah Amin; Angelina Olesen; Zurina Mahadi; Maznah Ibrahim
Journal:  Asian Bioeth Rev       Date:  2021-03-31

7.  Evaluating models of consent in changing health research environments.

Authors:  Svenja Wiertz; Joachim Boldt
Journal:  Med Health Care Philos       Date:  2022-03-14

8.  "It's all about trust": reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.

Authors:  Keymanthri Moodley; Shenuka Singh
Journal:  BMC Med Ethics       Date:  2016-10-10       Impact factor: 2.652

Review 9.  Genes, cells, and biobanks: Yes, there's still a consent problem.

Authors:  Timothy Caulfield; Blake Murdoch
Journal:  PLoS Biol       Date:  2017-07-25       Impact factor: 8.029

10.  Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking.

Authors:  Yann Joly; Gratien Dalpé; Derek So; Stanislav Birko
Journal:  PLoS One       Date:  2015-07-08       Impact factor: 3.240

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