American Journal of Bioethics 21 (4):80-83 (2021)

Authors
Hugh Desmond
Centre National de la Recherche Scientifique
Abstract
The success of precision medicine depends on obtaining large amounts of information about at-risk populations. However, getting consent is often difficult. Why? In this commentary I point to the differentials in social status involved. These differentials are inevitable once personal information is surrendered, but are particularly intense when the studied populations are socioeconomically or socioculturally disadvantaged and/or ethnically stigmatized groups. I suggest how the deep distrust of the latter groups can be partially justified as a lack of confidence that their core values or interests will sufficiently be taken into account. Hence, the ethical challenge here lies not in avoiding status differentials, but in dealing with them appropriately. Scientists should not assume trust from others but adopt a norm of “demonstrating trustworthiness”.
Keywords Precision medicine  Consent  Status  Social Epistemology  Research ethics  Trust
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DOI 10.1080/15265161.2021.1891345
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Service and Status Competition May Help Explain Perceived Ethical Acceptability.Hugh Desmond - 2020 - American Journal of Bioethics Neuroscience 11 (4):258-260.

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