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Journal of Business Ethics

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09-10-2020 | Original Paper

Direct-to-Consumer Genetic Testing and Its Marketing: Emergent Ethical and Public Policy Implications

Authors: Alexander Nill, Gene Laczniak

Published in: Journal of Business Ethics | Issue 4/2022

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Abstract

This paper provides a marketing ethics analysis that addresses the practice of selling genetic tests (GT) directly to the consumer (DTC). It details the complexity of this emergent sector by articulating the panoply of evolving ethical/social questions raised by this development. It advances the conversation about DTC genetic testing by reviewing the business and healthcare literature concerning this topic and by laying out the inherent ethical complications for consumers, marketers, and regulators. It also points to several possible public and company policy adjustments. Because this area is relatively new and incredibly dynamic, its current discussion is necessarily an exercise in the “logic of discovery” rather than the “protocol of validation”. The paper serves as a primer for the types of GT being promoted. It also calls for a public discourse in the academic and general community to uncover and define the ethical guidelines and systemic adjustments necessary to create fairness in the various DTC transactions occurring between genetic test sellers and the buyers/clients of their services.

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To illustrate: A sensitivity of 80% means that the test detected 80% of people with the condition but 20% did not get detected. However, sensitivity does not say anything about how many people had a positive test result but don’t have the condition.

To illustrate: A specificity of 80% means that the test detected 80% of people who do not have the condition but (falsely) identified 20% as positive who do not have the condition. However, specificity says nothing about the probability of false positive tests.

The American Medical Association’s ethics code specifically suggests:

“Protecting information gathered in association with the care of the patient is a core value in health care”.

The American Medical Association’s ethics code specifically suggests:

(a) Disclose potential commercial applications to the tissue donor before a profit is realized on products developed from biological materials.

(b) Obtain informed consent to use biological materials in research from the tissue donor. Human biological materials and their products may not be used for commercial purposes without the consent of the tissue donor.

(c) Share profits from the commercial use of human biological materials with the tissue donor in accordance with lawful contractual agreements.

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Title: Direct-to-Consumer Genetic Testing and Its Marketing: Emergent Ethical and Public Policy Implications
Authors: Alexander Nill
Gene Laczniak
Publication date: 09-10-2020
Publisher: Springer Netherlands
Published in: Journal of Business Ethics / Issue 4/2022
Print ISSN: 0167-4544
Electronic ISSN: 1573-0697
DOI: https://doi.org/10.1007/s10551-020-04632-z

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