ISSN 打印: 2151-805X
ISSN 在线: 2151-8068
Framing the "Right to Withdraw" in the Use of Biospecimens for iPSC Research
摘要
A "right to withdraw" from research participation is an important mechanism for ensuring voluntariness and respecting participant autonomy throughout a study. This right often is expressed as an absolute, dictating that a participant can withdraw from research at any time for any reason. However, it is more challenging to define a right to withdraw when the interactions between a researcher and participant have ended but the researcher is continuing to use biospecimens provided by the research participant. This issue is becoming particularly complicated as researchers are generating induced pluripotent stem cell (iPSC) lines for a broad spectrum of research applications, banking, distribution, commercial product development, drug screening, and preclinical testing for cell-based therapies. The generation of iPSCs from biospecimens presents particular challenges for informed consent and the right to withdraw as researchers develop informed consent documents and as projects undergo ethics review. Here we consider the reasons why a participant may want to withdraw donated biospecimens from research, especially when considering the ethical landscape of withdrawal from iPSC research in particular. We then suggest guidance to help policy makers and ethics review bodies evaluate the issue of withdrawal in relation to iPSC research.
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Yakubu Aminu, Tindana Paulina, Matimba Alice, Littler Katherine, Munung Nchangwi Syntia, Madden Ebony, Staunton Ciara, De Vries Jantina, Model framework for governance of genomic research and biobanking in Africa – a content description, AAS Open Research, 1, 2018. Crossref
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Yakubu Aminu, Tindana Paulina, Matimba Alice, Littler Katherine, Munung Nchangwi Syntia, Madden Ebony, Staunton Ciara, De Vries Jantina, Model framework for governance of genomic research and biobanking in Africa – a content description, AAS Open Research, 1, 2018. Crossref
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