Ethical considerations for monetizable big data in healthcare (Preprint)

Abstract

<sec> <title>UNSTRUCTURED</title> Since Henrietta Lacks’ death from cervical cancer, so-called HeLa cells have become a ubiquitous substrate for scientific advancement. Such scientific advancement has bred innovation, and innovation, profit. Yet, these innovations have been unevenly distributed across demographic groups. To ensure the ethical conduct of research and the equitable distribution of its benefits, biospecimens, like HeLa’s tissue, were protected under consent conventions of the Belmont Report. Likewise, during the genomic era, the “biospecimen" concept was forced to evolve again. A third era—that of informatics—has the potential to empower truly “personalized” medicine. Nonetheless, issues related to unequal focus of research efforts and unequal provision of innovation already exist. Additionally, with increasing ease of re-identification, the anonymity of individualized data is at risk. Redesign of consent protocols and redefinition of the biospecimen concept may be required once more to protect the donors of de-identified transcriptomic data—and their families, in the long-run. </sec>

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