Switch to: References

Add citations

You must login to add citations.
  1. ‘ It is a complex process, but it’s very important to return these results to participants’. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV.Sylvia Nabukenya, David Kyaddondo, Adelline Twimukye, Ian Guyton Munabi, Catriona Waitt & Erisa S. Mwaka - 2024 - Research Ethics 20 (2):363-387.
    This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  • Collateral Findings from Pragmatic Clinical Trials: What Responsibility Do We Have to Enrolled and Future Patients?Danielle M. Whicher & Albert W. Wu - 2020 - American Journal of Bioethics 20 (1):21-24.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Pragmatic Clinical Trial-Collateral Findings: Recognizing the Needs of Low-Resource Research Participants.Courtney A. Stewart, Kayla E. Cooper, Megan B. Raymond, Faith E. Fletcher & Vence L. Bonham - 2020 - American Journal of Bioethics 20 (1):19-21.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • Should Feedback of Individual Results be Integrated into the Consent Process in African Genomics? Participants’ Views from an HIV-TB Genomics Research Project in Botswana.Dimpho Ralefala, Mary Kasule, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2022 - AJOB Empirical Bioethics 13 (1):48-56.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
    		•
  • Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?Dimpho Ralefala, Mary Kasule, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundA key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when. Whilst this issue has received only scarce attention in African bioethics discourse, the extension of genomics research to the African continent has brought it into sharp focus.MethodsIn this qualitative study, we examined the views of adolescents, parents and caregivers participating in a paediatric and adolescent HIV-TB genomic study (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   7 citations  
  • Returning Incidental Findings in Low‐Resource Settings: A Case of Rescue?Douglas Mackay - 2018 - Hastings Center Report 48 (3):28-30.
    In a carefully argued article, Haley K. Sullivan and Benjamin E. Berkman address the important question of whether investigators have a duty to report incidental findings to research participants in low‐resource settings. They suggest that the duty to rescue offers the most plausible justification for the duty to return incidental findings, and they explore the implications of this duty for the context of research in low‐resource settings. While I think they make valuable headway on an important problem, in this commentary, (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Why genomics researchers are sometimes morally required to hunt for secondary findings.Julian J. Koplin, Julian Savulescu & Danya F. Vears - 2020 - BMC Medical Ethics 21 (1):1-11.
    Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings. This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • Should institutions fund the feedback of individual findings in genomic research?Cornelius Ewuoso, Benjamin Berkman, Ambroise Wonkam & Jantina de Vries - forthcoming - Journal of Medical Ethics.
    The article argues the thesis that institutions have a prima facie obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service in research by mostly appealing to dominant principles and theories in the Global (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
    		•
  • Ubuntu philosophy and the consensus regarding incidental findings in genomic research: a heuristic approach.Cornelius Ewuoso - 2020 - Medicine, Health Care and Philosophy 23 (3):433-444.
    This study adopts a heuristic technique to argue the thesis that a set of norms rooted in the African philosophy of Ubuntu can usefully supplement current research guidelines for dealing with incidental findings discovered in genomic research. The consensus regarding incidental findings is that there is an ethical obligation to return individual genetic incidental findings that meet the threshold of analytic and clinical validity, have clinical utility, and are actionable, provided that research contributors have not opted out from receiving such (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  • Incorporating Research Burden and Utility Considerations as Limiting Factors in a Framework for Returning IRR.Chloe Connor & Benjamin E. Berkman - 2024 - American Journal of Bioethics 24 (2):96-98.
    The authors of the Target article, Shen and colleagues (2024) argue that there is a need for an ethical framework to help analyze when it is appropriate to return individualized research results (I...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
    		•