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Ethics in Biology, Engineering and Medicine: An International Journal
SJR: 0.123

ISSN Print: 2151-805X
ISSN Online: 2151-8068

Ethics in Biology, Engineering and Medicine: An International Journal

DOI: 10.1615/EthicsBiologyEngMed.2013007265
pages 1-14

Framing the "Right to Withdraw" in the Use of Biospecimens for iPSC Research

Justin Lowenthal
Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland
Sara Chandros Hull
Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland; Office of the Clinical Director, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland

ABSTRACT

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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