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Open Access 19-07-2022 | Symposium: Emerging Technologies

Ethics of Buying DNA

Authors: Julian J. Koplin, Jack Skeggs, Christopher Gyngell

Published in: Journal of Bioethical Inquiry | Issue 3/2022

Abstract

DNA databases have significant commercial value. Direct-to-consumer genetic testing companies have built databanks using samples and information voluntarily provided by customers. As the price of genetic analysis falls, there is growing interest in building such databases by paying individuals for their DNA and personal data. This paper maps the ethical issues associated with private companies paying for DNA. We outline the benefits of building better genomic databases and describe possible concerns about crowding out, undue inducement, exploitation, and commodification. While certain objections deserve more empirical and philosophical investigation, we argue that none currently provide decisive reasons against using financial incentives to secure DNA samples.

A recent paper by Eman Ahmed and Mahsa Shabani (2019) is an important exception. However, where Ahmed and Shabani canvas ethical concerns regarding how DNA data is shared and how individuals’ control over the data is managed, we focus specifically on those ethical issues associated with paying individuals for access to their DNA data.

Indeed, this practice has already prompted some media backlash. For example, writing in The Guardian, Laura Spinney (2020) has written that “DNA testing companies are starting to profit from selling our data on to big pharma,” while a 2018 piece on the risks of DTC-GT published on CNBC asks, provocatively, “Who may profit on your DNA? The answer: Not you” (Rosenbaum 2018).

We leave open the question of whether payment would, in fact, provide an especially useful means for attracting donations of genetic data outside of the DTC-GT context. This is an empirical question that we think warrants further study.

For Wertheimer, such a price represents the threshold at which neither party takes special unfair advantage of the other party’s decision-making capacity or situation. A “fair price,” here, is defined within the context set by the prevailing market conditions (Wertheimer 1996, 232).

Similar concerns might be raised about the commodification of personal data provided by DNA donors. While these concerns are relevant to DNA markets, they are not exclusive to them; these concerns also apply (arguably more forcefully) to the use of online data for behavioural advertising (see, e.g., Roessler 2015). We focus here on the commodification of DNA (rather than personal data more generally) because we are especially interested in issues that are unique to DNA markets.

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Title: Ethics of Buying DNA
Authors: Julian J. Koplin
Jack Skeggs
Christopher Gyngell
Publication date: 19-07-2022
Publisher: Springer Nature Singapore
Published in: Journal of Bioethical Inquiry / Issue 3/2022
Print ISSN: 1176-7529
Electronic ISSN: 1872-4353
DOI: https://doi.org/10.1007/s11673-022-10192-w

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Ethics of Buying DNA

Abstract

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