Advertisement

Journal of Assisted Reproduction and Genetics

, Volume 36, Issue 9, pp 1771–1777 | Cite as

Nature beyond control: how expectations should inform decisions about human germline engineering

  • Brendan ParentEmail author
  • Angela Turi
Commentary

Abstract

In the ongoing discussion about the risks of reproductive human germline modification, scant attention has been paid to whether it could be reconciled with theories of psychological well-being. Even if safety and feasibility challenges could be overcome and germline engineering technology could be implemented in ways that avoid exacerbating social inequality, we would still have to question whether germline modification would promote circumstances that lead to better psychological experiences for parents, society, and the genetically edited person. This paper posits that germline engineering would produce expectations of being able to control the manifestation of an individual’s characteristics, which will inevitably be upset by our limited understanding of how genes interact with each other and with the environment. Drawing on self-discrepancy and relative deprivation theories, it is suggested that both editing and being edited could lead to unmet expectations and thus negative emotional states that would offset benefits of successful intended genetic changes.

Keywords

Germline engineering Expectations Control CRISPR Ethics Self-discrepancy theory Relative deprivation theory 

Notes

Acknowledgments

The authors would like to thank Marcy Darnovsky of the Center for Genetics and Society and Sheldon Krimsky for their thoughtful feedback on drafts.

References

  1. 1.
    Caplan AL, Parent B, Shen M, Plunket C. No time to waste—the ethical challenges created by CRISPR. EMBO Rep. 2015;16:1421–6.CrossRefGoogle Scholar
  2. 2.
    Sherkow JS. Law, history and lessons in the CRISPR patent conflict. Nat Biotechnol. 2015;33:256–7.CrossRefGoogle Scholar
  3. 3.
    Greely H He Jiankui, embryo editing, CCR5, the London patient, and jumping to conclusions. STAT News April 15, 2019. Available from: https://www.statnews.com/2019/04/15/jiankui-embryo-editing-ccr5/.
  4. 4.
    Caplan AL. Getting serious about the challenge of regulating germline gene therapy. PLoS Biol. 2019;17:e3000223.CrossRefGoogle Scholar
  5. 5.
    Liang P, Xu Y, Zhang X, Ding C, Huang R, Zhang Z, et al. CRISPR/Cas9-mediated gene editing in human tripronuclear zygotes. Protein Cell. 2015;6:363–72.CrossRefGoogle Scholar
  6. 6.
    Ma H, Marti-Gutierrez N, Park SW, Wu J, Lee Y, Suzuki K, et al. Correction of a pathogenic gene mutation in human embryos. Nature. 2017;548:413–9.CrossRefGoogle Scholar
  7. 7.
    Rauch BJ, Silvis MR, Hultquist JF, Waters CS, McGregor MJ, Krogan NJ, et al. Inhibition of CRISPR-Cas9 with bacteriophage proteins. Cell. 2017;168:150–8.CrossRefGoogle Scholar
  8. 8.
    Guéant JL, Chéry C, Oussalah A, Nadaf J, Coelho D, Josse T, et al. APRDX1 mutant allele causes a MMACHC secondary epimutation in cblC patients. Nat Commun. 2018;9:67.CrossRefGoogle Scholar
  9. 9.
    Clark A. Whatever next? Predictive brains, situated agents, and the future of cognitive science. Behav Brain Sci. 2013;36:181–204.CrossRefGoogle Scholar
  10. 10.
    Higgins ET. Self-discrepancy: a theory relating self and affect. Psychol Rev. 1987;94:319–40.CrossRefGoogle Scholar
  11. 11.
    Walker I, Pettigrew TF. Relative deprivation theory: an overview and conceptual critique. Brit J Soc Psychol. 1984;23:301–10.CrossRefGoogle Scholar
  12. 12.
    Gath A. Parental reactions to loss and disappointment: the diagnosis of Down’s syndrome. Dev Med Child Neurol. 1985;27:392–400.CrossRefGoogle Scholar
  13. 13.
    Cichy KE, Lefkowitz ES, Davis EM, Fingerman KL. “You are such a disappointment!”: negative emotions and parents’ perceptions of adult children’s lack of success. J Gerontol B-Psychol. 2013;68:893–901.CrossRefGoogle Scholar
  14. 14.
    Miller C The relentlessness of modern parenting. New York Times December 25, 2018. Available from: https://www.nytimes.com/2018/12/25/upshot/the-relentlessness-of-modern-parenting.html.
  15. 15.
    Feldman SS, Nash SC. The transition from expectancy to parenthood: impact of the firstborn child on men and women. Sex Roles. 1984;11:61–78.CrossRefGoogle Scholar
  16. 16.
    Kalmuss D, Davidson A, Cushman L. Parenting expectations, experiences, and adjustment to parenthood: a test of the violated expectations framework. J Marriage Fam. 1992;54:516–26.CrossRefGoogle Scholar
  17. 17.
    Harwood K, McLean N, Durkin K. First-time mothers’ expectations of parenthood: what happens when optimistic expectations are not matched by later experiences? Dev Psychol. 2007;43:1–12.CrossRefGoogle Scholar
  18. 18.
    Kandel I, Merrick J. The birth of a child with disability. Coping by parents and siblings. ScientificWorldJournal. 2003;3:741–50.CrossRefGoogle Scholar
  19. 19.
    Whittaker A. Gender disappointment and cross-border high-tech sex selection: a new global sex trade. In: Manderson L, editor. Technologies of sexuality, identity, and sexual health. Routledge; 2012. pp. 143–164.Google Scholar
  20. 20.
    Goldman KN, Blakemore J, Kramer Y, McCulloh DH, Lawson A, Grifo JA. Beyond the biopsy: predictors of decision regret and anxiety following preimplantation genetic testing for aneuploidy. Hum Reprod. 2019;34:1260–9.  https://doi.org/10.1092/humanrep/dez080.CrossRefGoogle Scholar
  21. 21.
    Kalfoglou AL, Scott J, Hudson K. PGD patients’ and providers’ attitudes to the use and regulation of preimplantation genetic diagnosis. Reprod BioMed Online. 2005;11:486–96.CrossRefGoogle Scholar
  22. 22.
    Jordan W. Defense verdict in wrongful life suit alleging negligence in in vitro preimplantation genetic testing and diagnosis. Verdicts, Settlements, and Tactics. 2007;27:6.Google Scholar
  23. 23.
    Jackson JL, Kroenke K. The effect of unmet expectations among adults presenting with physical symptoms. Ann Intern Med. 2001;134:889–97.CrossRefGoogle Scholar
  24. 24.
    Bell RA, Kravitz RL, Thom D, Krupat E, Azari R. Unmet expectations for care and the patient-physician relationship. J Gen Intern Med. 2002;17:817–24.CrossRefGoogle Scholar
  25. 25.
    Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367:1616–25.CrossRefGoogle Scholar
  26. 26.
    Lautenbach DM, Christensen KD, Sparks JA, Green RC. Communicating genetic risk information for common disorders in the era of genomic medicine. Annu Rev Genomics Hum Genet. 2013;14:491–513.CrossRefGoogle Scholar
  27. 27.
    Wu K Lack of diversity in genetic research could be costing us our health. Nova March 21, 2019. Available from: http://www.pbs.org/wgbh/nova/article/lack-diversity-genetic-research-could-be-costing-us-our-health/.
  28. 28.
    Sandel M. The case against perfection. The Atlantic. (2004). Available from: https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/.

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Division of Medical EthicsNYU School of MedicineNew YorkUSA
  2. 2.Center for Genetics and SocietyBerkeleyUSA

Personalised recommendations