The Ethics of Medical Data Donation

Abstract

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N = many me’s: self-surveillance for Precision Public Health

“…This is why the term 'information sharing' can legitimately be used in the AoU program (U.S. Department of Health and Human Services n.d.). However, the characteristic of data that it is not consumed in the course of the process and that it can be used and reused indefinitely is reason for bio-ethicist Barbara Prainsack to argue that 'sharing' is rather unspecific and that 'data donation' is preferable (Hummel et al 2019;Mayer-Schonberger and Cukier 2013;Prainsack 2019). Calling it 'donation' would acknowledge the relational character and the opportunities that are given i.e.…”

“…Calling it 'donation' would acknowledge the relational character and the opportunities that are given i.e. to use and market them (Prainsack 2019). As Hummel et al argue, 'sharing' obfuscates the symbolic meaning of what a gift entails; gifts are means for individuals and groups to determine and shape identities, because we give something of ourselves to others (Hummel et al 2019).…”

“…How will this gift-relationship benefit their own health? As Prainsack points out, the idea that data is being donated like a gift, underscores the relational nature of such donations: despite donation not being a commercial transaction, and despite their not being directly reciprocal in the sense that you do not need to give me something directly in return, my donation articulates, strengthens, or changes my relation to the person or entity that I donate something to, and vice versa (Prainsack 2019). This unique data-donation relationship is conceptualized by Prainsack as indirect reciprocity.…”