Literature DB >> 29668303

Barriers and Opportunities in Consent and Access Procedures in Low- and Middle-Income Country Biobanks: Meeting Notes from the BCNet Training and General Assembly.

Ma'n H Zawati1, Anne Marie Tassé1,2, Maimuna Mendy3, Elodie Caboux4, Michael Lang1.   

Abstract

As biobanking research in low- and middle-income countries (LMICs) continues to grow, novel legal and policy considerations have arisen. Also, while an expansive literature has developed around these issues, the views and concerns of individual researchers in these contexts have been less actively studied. These meeting notes aim to contribute to the growing literature on biobanking in LMICs by communicating a number of challenges and opportunities identified by biobank researchers themselves. Specifically, we describe concerns that emerge in consent and access policy domains. First, we present a review of the literature on distinct policy and legal concerns faced in LMICs, giving special attention to the general absence of practitioner perspectives. From there, we outline and discuss considerations that were raised by meeting participants at a Biobank and Cohort Building Network (BCNet) Ethical, Legal, and Social Issues training program. We conclude by proposing that the unique perspectives of biobank researchers in LMICs should be given serious attention and further research on these perspectives should be conducted.

Entities:  

Keywords:  LMIC; access; biobank; consent; policy

Year:  2018        PMID: 29668303     DOI: 10.1089/bio.2017.0081

Source DB:  PubMed          Journal:  Biopreserv Biobank        ISSN: 1947-5543            Impact factor:   2.300


  6 in total

1.  ISBER and the Biobanking and Cohort Network (BCNet): A Strengthened Partnership.

Authors:  Marianne Krall Henderson; Zisis Kozlakidis
Journal:  Biopreserv Biobank       Date:  2018-10       Impact factor: 2.300

2.  Morocco's First Biobank: Establishment, Ethical Issues, Biomedical Research Opportunities, and Challenges.

Authors:  Saida Lhousni; Karam Yahya Belmokhtar; Ihab Belmokhtar; Mounia Elidrissi Errahhali; Manal Elidrissi Errahhali; Redouane Boulouiz; Mariam Tajir; Majida Charif; Khawla Zerrouki; Noufissa Benajiba; Maria Rkain; Abdeladim Babakhouya; Hatim Kouismi; Afaf Thouil; Hanane Latrach; Rim Amrani; Sahar Messaoudi; Anass Ayyad; Zaina Sidqi; Khalid Andaloussi Serraj; Siham Hamaz; Habiba Alaoui; Houda Bachir; Yassamine Bentata; Intissar Haddiya; Mohammed Choukri; Rachid Seddik; Amal Bennani; Siham Dikhaye; Bouchra Oneib; Fatima Elghazouani; Omar El Mahi; Adnane Benzirar; Ayat Allah Oufkir; Brahim Housni; Ahmed Mimouni; Hanane Saadi; Mohammed Belahcen; Tijani El Harroudi; Meryem Ouarzane; Mohammed Bellaoui
Journal:  Biomed Res Int       Date:  2020-12-08       Impact factor: 3.411

Review 3.  Governing Personalized Health: A Scoping Review.

Authors:  Philipp Trein; Joël Wagner
Journal:  Front Genet       Date:  2021-04-21       Impact factor: 4.599

4.  Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.

Authors:  Joseph Ochieng; Betty Kwagala; John Barugahare; Erisa Mwaka; Deborah Ekusai-Sebatta; Joseph Ali; Nelson K Sewankambo
Journal:  BMC Med Ethics       Date:  2021-11-19       Impact factor: 2.652

Review 5.  Health Technology Assessment for In Silico Medicine: Social, Ethical and Legal Aspects.

Authors:  Carlo Giacomo Leo; Maria Rosaria Tumolo; Saverio Sabina; Riccardo Colella; Virginia Recchia; Giuseppe Ponzini; Dimitrios Ioannis Fotiadis; Antonella Bodini; Pierpaolo Mincarone
Journal:  Int J Environ Res Public Health       Date:  2022-01-28       Impact factor: 3.390

Review 6.  The research output of rod-cone dystrophy genetics.

Authors:  Zamzam Mrad; Mariam Ibrahim; Isabelle Audo; Christina Zeitz; Lama Jaffal; Ali Salami; Said El Shamieh
Journal:  Orphanet J Rare Dis       Date:  2022-04-23       Impact factor: 4.303

  6 in total

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