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  1. A review of ethical frameworks for the disclosure of individual research results in population-based genetic and genomic research. [REVIEW]Isabelle Budin-Ljøsne - 2012 - Research Ethics 8 (1):25-42.
    Individual research results from population-based genetic and genomic research are traditionally not disclosed to research participants. Current practices of non-disclosure are, however, being challenged by an increasing number of scientists, ethicists and policy-makers who make arguments in favour of disclosing at least individual results of potential health or lifestyle significance to research participants. Simultaneously, research participants are expressing greater interest in accessing their results. This article first provides an overview of main arguments for and against the disclosure of individual research (...)
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  • Critical social theory approach to disclosure of genomic incidental findings.Jeffrey L. Bevan, Julia N. Senn-Reeves, Ben R. Inventor, Shawna M. Greiner, Karen M. Mayer, Mary T. Rivard & Rebekah J. Hamilton - 2012 - Nursing Ethics 19 (6):819-828.
    Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.
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  • Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening.Fiona Ulph & Rebecca Bennett - 2022 - The New Bioethics 29 (1):52-74.
    As a psychologist and an ethicist, we have explored empirically newborn screening consent and communication processes. In this paper we consider the impact on families if newborn screening uses whole genome sequencing. We frame this within the World Health Organization’s definition of health and contend that proposals to use whole genome sequencing in newborn screening take into account the ethical, practical and psychological impact of such screening. We argue that the important psychological processes occurring in the neonatal phase necessitate a (...)
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