Ethical Concerns of Direct-to-Consumer Genetic Tests

Fereshteh Shahrabi Farahani

doi:10.2478/bjes-2022-0007

.blurhash-client-img { display: none !important; }

Ethical Concerns of Direct-to-Consumer Genetic Tests

TalTech Journal of European Studies

Volume 12 (2022): Issue 1 (May 2022)

By: Fereshteh Shahrabi Farahani

Open Access

|Jun 2022

Abstract

The rapid development of technology is having an enormous effect on our lives. Emerging technological solutions offer new possibilities in various fields and on different levels, either for ordinary human beings or organisations and governments. However, the ethical implications of such technologies on our lives, our societies, are often not fully understood and require careful analysis. This article focuses on one type of such technologies, genetic tests available to the public, analysing the potential ethical concerns in these tests being directly provided to the consumers.

References

23andme (n.d.), [Home page]. Retrieved from https://www.23andme.com/en-gb/ [accessed 22 Mar 2022]
Search in Google Scholar Back to article
Almeling, R. & Gadarian, S. (2014), ‘Public opinion on policy issues in genetics and genomics,’ Genetics in Medicine, vol. 16, no. 6, pp. 491–494. https://doi.org/10.1038/gim.2013.175
Search in Google Scholar Back to article
Ayala-Lopez, N. & Nichols, J. H. (2020), ‘Benefits and risks of direct-to-consumer testing,’ Archives of Pathology & Laboratory Medicine, vol. 144, no. 10, pp. 1193–1198. https://doi.org/10.5858/arpa.2020-0078-RA
Search in Google Scholar Back to article
Bloss, C. S.; Darst, B. F.; Topol, E. J. & Schork, N. J. (2011), ‘Direct-to-consumer personalized genomic testing,’ Human Molecular Genetics, vol. 20, no. R2, pp. R132–R141. https://doi.org/10.1093/hmg/ddr349
Search in Google Scholar Back to article
Botkin, J. R.; Belmont, J.; Berg, J. W.; Berkman, B. E.; Bombard, Y. et al. (2015), ‘Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents,’ The American Journal of Human Genetics, vol. 97, no. 1, pp. 6–21. https://doi.org/10.1016/j.ajhg.2015.05.022
Search in Google Scholar Back to article
Brédart, A.; Autier, P.; Riccardo, A.; Audisio, A. & Geraghty, J. (2001), ‘Psychosocial dimensions of BRCA testing: an overshadowed issue,’ European Journal of Cancer Care, vol. 10, no. 2, pp. 96–99. https://doi.org/10.1046/j.1365-2354.2001.00254.x
Search in Google Scholar Back to article
Broady, K. M.; Ormond, K. E.; Topol, E. J.; Schork, N. J. & Bloss, C. S. (2018), ‘Predictors of adverse psychological experiences surrounding genome-wide profiling for disease risk,’ Journal of Community Genetics, vol. 9, no. 3, pp. 217–225. https://doi.org/10.1007/s12687-017-0339-z
Search in Google Scholar Back to article
Centers for Disease Control and Prevention (n.d.), ‘Genetic testing: What you need to know.’ Retrieved from https://www.cdc.gov/genomics/gtesting/genetic_testing.htm [accessed 20 Mar 2022]
Search in Google Scholar Back to article
Council of Europe (2012), Genetic Tests for Health Purposes. Retrieved from https://www.coe.int/t/dg3/healthbioethic/Activities/07_Human_genetics_en/Brochure/en_geneticTests_bd.pdf [accessed 20 Mar 2022]
Search in Google Scholar Back to article
Eissenberg, J. (2017), ‘Direct-to-consumer genomics: Harmful or empowering? It is important to stress that genetic risk is not the same as genetic destiny,’ Missouri Medicine, vol. 114, no. 1, pp. 26–32.
Search in Google Scholar Back to article
Ethics Unwrapped (n.d.), ‘Utilitarianism.’ Retrieved from https://ethicsunwrapped.utexas.edu/glossary/utilitarianism [accessed 22 Mar 2022]
Search in Google Scholar Back to article
Federal Trade Commission (2006), ‘At-home genetic tests: A healthy dose of scepticism may be the best prescription.’ Retrieved from https://osp.od.nih.gov/wp-content/uploads/2013/11/DTC_Consumer_Alert_Jul06.pdf [accessed 22 Mar 2022]
Search in Google Scholar Back to article
Foster, M. W. & Sharp, R. R. (2008), ‘The contractual genome: How direct-to-consumer genomic services may help patients take ownership of their DNA,’ Personalized Medicine, vol. 5, no. 4, pp. 399–404. https://doi.org/10.2217/17410541.5.4.399
Search in Google Scholar Back to article
Fulda, K. G. & Lykens, K. (2006), ‘Ethical issues in predictive genetic testing: A public health perspective,’ Journal of Medical Ethics, vol. 32, no. 3, pp. 143–147. https://doi.org/10.1136/jme.2004.010272
Search in Google Scholar Back to article
Grosse, S. D.; Kalman, L. & Khoury, M. J. (2010), ‘Evaluation of the validity and utility of genetic testing for rare diseases,’ Advances in Experimental Medicine and Biology, vol. 686, pp. 115–131. https://doi.org/10.1007/978-90-481-9485-8_8
Search in Google Scholar Back to article
Gymrek, M.; McGuire, A.; Golan, D.; Halperin, E. & Erlich, Y. (2013), ‘Identifying personal genomes by surname inference,’ Science, vol. 339, no. 6117, pp. 321–324. https://doi.org/10.1126/science.1229566
Search in Google Scholar Back to article
Hauskeller, C. (2011), ‘Direct to consumer genetic testing,’ BMJ, vol. 342, d2317. https://doi.org/10.1136/bmj.d2317
Search in Google Scholar Back to article
Henneman, L.; Timmermans, D. R. M. & van der Wal, G. (2004), ‘Public experiences, knowledge and expectations about medical genetics and the use of genetic information,’ Public Health Genomics, vol. 7, no. 1, pp. 33–43. https://doi.org/10.1159/000080302
Search in Google Scholar Back to article
Howard, H. C. & Borry, P. (2009), ‘Personal genome testing: Do you know what you are buying?’ The American Journal of Bioethics, vol. 9, nos. 6–7, pp. 11–13. https://doi.org/10.1080/15265160902894005
Search in Google Scholar Back to article
Howard, H. C. & Borry, P. (2011), ‘Is there a doctor in the house?’ Journal of Community Genetics, vol. 3, no. 2, pp. 105–112. https://doi.org/10.1007/s12687-011-0062-0
Search in Google Scholar Back to article
Hsu, A. R.; Mountain, J. L.; Wojcicki, A. & Avey, L. (2009), ‘A pragmatic consideration of ethical issues relating to personal genomics,’ The American Journal of Bioethics, vol. 9, nos. 6–7, pp. 1–2. https://doi.org/10.1080/15265160902966795
Search in Google Scholar Back to article
Joamets, K. & Chochia, A. (2021), ‘Access to artificial intelligence for persons with disabilities: Legal and ethical questions concerning the application of trustworthy AI,’ Acta Baltica Historiae et Philosophiae Scientiarum, vol. 9, no. 1, pp. 51–66. https://doi.org/10.11590/abhps.2021.1.04
Search in Google Scholar Back to article
Joh, E. E. (2011), ‘Ethics watch: DNA theft: your genetic information at risk,’ Nature Reviews Genetics, vol. 12, no. 12, p. 808. https://doi.org/10.1038/nrg3113
Search in Google Scholar Back to article
Jonsen, A. R.; Durfy, S. J.; Burke, W. & Motulsky, A. G. (1996), ‘The advent of the ‘unpatients’,’ Nature Medicine, vol. 2, pp. 622–624. https://doi.org/10.1038/nm0696-622
Search in Google Scholar Back to article
Kalokairinou, L.; Howard, H. C.; Slokenberga, S.; Fisher, E. et al. (2018), ‘Legislation of direct-to-consumer genetic testing in Europe: A fragmented regulatory landscape,’ Journal of Community Genetics, vol. 9, pp. 117–132. https://doi.org/10.1007/s12687-017-0344-2
Search in Google Scholar Back to article
Laestadius, L. I.; Rich, J. & Auer, P. (2017), ‘All your data (effectively) belong to us: Data practices among direct-to-consumer genetic testing firms,’ Genetics in Medicine, vol. 19, no. 5, pp. 513–520. https://doi.org/10.1038/gim.2016.136
Search in Google Scholar Back to article
Malpas, P. J. (2008), ‘Predictive genetic testing of children for adult-onset diseases and psychological harm,’ Journal of Medical Ethics, vol. 34, no. 4, pp. 275–278. https://doi.org/10.1136/jme.2006.019802
Search in Google Scholar Back to article
Peterson, S. K. (2005), ‘The role of the family in genetic testing: Theoretical perspectives, current knowledge, and future directions,’ Health Education & Behaviour, vol. 32, no. 5, pp. 627–639. https://doi.org/10.1177/1090198105278751
Search in Google Scholar Back to article
Selk, A. (2018), ‘The ingenious and ‘dystopian’ DNA technique police used to hunt the ‘Golden State Killer’ suspect,’ Washington Post, 28 April. Retrieved from https://www.washingtonpost.com/news/true-crime/wp/2018/04/27/golden-state-killer-dna-website-gedmatch-was-used-to-identify-joseph-deangelo-as-suspect-police-say/ [accessed 22 Mar 2022]
Search in Google Scholar Back to article
Stoeklé, H.-C.; Mamzer-Bruneel, M.-F.; Vogt, G. & Hervé, C. (2016), ‘23andMe: A new two-sided data-banking market model,’ BMC Medical Ethics, vol. 17, no. 19. https://doi.org/10.1186/s12910-016-0101-9
Search in Google Scholar Back to article
Su, P. (2013), ‘Direct-to-consumer genetic testing: a comprehensive view,’ Yale Journal of Biology and Medicine, vol. 86, no. 3, pp. 359–365.
Search in Google Scholar Back to article
Wasson, K.; Sanders, T. N.; Hogan, N. S.; Cherny, S. & Helzlsouer, K. J. (2013), ‘Primary care patients’ views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study,’ Journal of Community Genetics, vol. 4, no. 4, pp. 495–505. https://doi.org/10.1007/s12687-013-0156-y
Search in Google Scholar Back to article

Articles in this issue

DOI: https://doi.org/10.2478/bjes-2022-0007 | Journal eISSN: 2674-4619 | Journal ISSN: 2674-4600

Journal RSS Feed

Language: English

Page range: 145 - 158

Published on: Jun 23, 2022

Published by: Tallinn University of Technology

In partnership with: Paradigm Publishing Services

Publication frequency: 2 issues per year

Keywords:

ethics,

ethics in medicine,

ethics of technology,

genetic tests,

public health

Related subjects:

Computer sciences,

Computer sciences, other,

Business and economics,

Political economics,

Political economics, other,

Law,

Law, other,

Social sciences,

Social sciences, other

© 2022 Fereshteh Shahrabi Farahani, published by Tallinn University of Technology
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Volume 12 (2022): Issue 1 (May 2022)