Abstract
Purpose of Review
The challenge to protect genetic information for individuals in the context of advancing AI technologies is emerging. This review presents an overview of the impact of AI on genetic discrimination and how to mitigate it in a manner that is less discussed in the literature.
Recent Findings
Through AI technologies, customized individual genetic profiling can be generated by users in different contexts. Current discussions on AI governance and human genetic information sharing have ignored the impact of the convergence of the two areas on the protection of fundamental human rights, which outpaces the existing laws and regulations, constituting a pacing problem in the governance of the emerging technologies.
Summary
To address the risk associated with individual genetic profiling, we suggest that adequate attention should be given to the human right-based approach to promoting responsible AI development in the life sciences under the United Nations Guiding Principles on Business and Human Rights (UNGPs), particularly to strengthen the responsibility of AI companies who have the opportunities and capacities to take actions to mitigate potential and actual adverse impact on human rights stemming from their operations, products, or services via technical and legal means.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
De La Vega FM, Chowdhury S, Moore B, et al. Artificial intelligence enables comprehensive genome interpretation and nomination of candidate diagnoses for rare genetic diseases. Genome Med. 2021;13:153. https://doi.org/10.1186/s13073-021-00965-0.
COVID-19 Host Genetics Initiative. Mapping the human genetic architecture of COVID-19. Nature 600. 2021;472–477. https://doi.org/10.1038/s41586-021-03767-x.
Panch T, Mattie H, Atun R. Artificial intelligence and algorithmic bias: implications for health systems. J Glob Health. 2019;9(2):010318. https://doi.org/10.7189/jogh.09.020318.
Wauters A, van Hoyweghen I. “Global trends on fears and concerns of genetic discrimination: a systematic literature review.” J Hum Genet. 2016;(04):275–282. https://doi.org/10.1038/jhg.2015.151.
OHCHR, Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework. 2011. https://www.ohchr.org/sites/default/files/documents/publications/guidingprinciplesbusinesshr_en.pdf.
The International Labor Organization’s Declaration on Fundamental Principles and Rights at Work, adopted in 1998 and amended in 2022. https://www.ilo.org/declaration/lang--en/index.htm.
United Nations Educational, Scientific and Cultural Organization (UNESCO). Universal Declaration on the Human Genome and Human Rights. U.N. Doc. A/RES/53/152 Nov 11, 1997. https://en.unesco.org/themes/ethics-science- and-technology/human-genome-and-human-rights.
The United Nations Human Rights Office of the High Commissioner(OHCHR), The Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework. A/HRC/17/31, annex.
The Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework(UNGPs), Principle 1.
Genetic Information Nondiscrimination Act of 2008 (GINA), Public Law 110–233.
Rocher L, Hendrickx JM, de Montjoye YA. Estimating the success of re-identifications in incomplete datasets using generative models. Nat Commun. 2019;10(1):3069. https://doi.org/10.1038/s41467-019-10933-3.
Christopher G. Schwarz, et al. Identification of anonymous MRI research participants with face-recognition software, October 24, 2019. N Engl J Med. 2019;381:1684–6. https://doi.org/10.1056/NEJMc1908881.
Caplan A, Batra P. The ethics of using de-identified medical data for research without informed consent. Voices in Bioethics. 2019;5. https://doi.org/10.7916/vib.v5i.5917.
Joly Y, Dalpe G. Genetic discrimination still casts a large shadow in 2022. Eur J Hum Genet. 2022. https://doi.org/10.1038/s41431-022-01194-8.
Sariyar M, Schlünder I. Challenges and legal gaps of genetic profiling in the era of big data. Front Big Data. 2019;2:40. https://doi.org/10.3389/fdata.2019.00040.
The Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework(UNGPs), Principle 13.
Chapman CR, et al. Genetic discrimination: emerging ethical challenges in the context of advancing technology. J Law Biosci. 2020;1–23. https://doi.org/10.1093/jlb/lsz016.
The Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework(UNGPs), Principles 17–21.
The Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework(UNGPs), Principle 17. “Business relationships” in the UNGPs refer to the relationships an enterprise has with “business partners, entities in its value chain, and any other non-State or State entity directly linked to its business operations, products or services”. The focus in the UNGPs is on the risks that it may harm human rights in connection with the enterprise’s own operations, products or services.
The Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework(UNGPs), Principles 19–20.
The Guiding Principles on Business and Human Rights-implementing the United Nations “Protect, Respect and Remedy” Framework(UNGPs), Principle 15.
Hansson MG, et al. The risk of re-identification versus the need to identify individuals in rare disease research, Eur J Hum Genet. 2016;24:1553–1558.
The Council of Europe Office of the Commissioner for Human Rights,, Human Rights by Design:future-proofing human rights protection in the ear of AI. https://rm.coe.int/follow-up-recommendation-on-the-2019-report-human-rights-by-design-fut/1680ab2279.
Funding
National Key RD Program of China,2022YFE0202600
Author information
Authors and Affiliations
Contributions
LW wrote the original manuscript text, and XL reviewed the manuscript.
Corresponding author
Ethics declarations
Conflict of Interests
The authors declare no competing interests.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by the authors.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Wang, L., Liang, X. Al-Accelerated Human Genetic Discrimination: Implications of UNGPs. Curr Genet Med Rep 11, 9–13 (2023). https://doi.org/10.1007/s40142-023-00208-1
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40142-023-00208-1