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Ethical Concerns of Direct-to-Consumer Genetic Tests Cover

Ethical Concerns of Direct-to-Consumer Genetic Tests

Open Access
|Jun 2022

References

  1. 23andme (n.d.), [Home page]. Retrieved from https://www.23andme.com/en-gb/ [accessed 22 Mar 2022]
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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]
  9. 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]
  10. 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.
  11. Ethics Unwrapped (n.d.), ‘Utilitarianism.’ Retrieved from https://ethicsunwrapped.utexas.edu/glossary/utilitarianism [accessed 22 Mar 2022]
  12. 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]
  13. 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
  14. 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
  15. 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
  16. 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
  17. Hauskeller, C. (2011), ‘Direct to consumer genetic testing,’ BMJ, vol. 342, d2317. https://doi.org/10.1136/bmj.d2317
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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]
  30. 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
  31. Su, P. (2013), ‘Direct-to-consumer genetic testing: a comprehensive view,’ Yale Journal of Biology and Medicine, vol. 86, no. 3, pp. 359–365.
  32. 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
DOI: https://doi.org/10.2478/bjes-2022-0007 | Journal eISSN: 2674-4619 | Journal ISSN: 2674-4600
Language: English
Page range: 145 - 158
Published on: Jun 23, 2022
In partnership with: Paradigm Publishing Services
Publication frequency: 2 issues per year

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