Abstract
In this paper I argue that selective abortion for disability often involves inadequate counselling on the part of reproductive medicine professionals who advise prospective parents. I claim that prenatal disability clinicians often fail in intellectual duty—they are culpably ignorant about intellectual disability (or do not disclose known facts to parents). First, I explain why a standard motivation for selective abortion is flawed. Second, I summarize recent research on parent experience with prenatal professionals. Third, I outline the notions of epistemic excellence and deficiency. Fourth, I defend culpable ignorance as the best explanation of inadequate disability counselling. Fifth, I rebut alternative explanations. My focus is pregnancies diagnosed with mild or moderate intellectual disability.
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Notes
Skotko (2009) and Choi, Van Riper, and Thoyre (2012) report that 92 per cent of pregnancies testing positive for Down’s syndrome are terminated. This statistic may not be accurate: a review of studies (Natoli et al. 2012) indicates that termination rates following prenatal diagnosis vary, with the range averaging from 67 per cent to 85 per cent.
It may be thought that my claim of inadequate disability counseling is based on a very partial look at the existing literature. I disagree: the evidence indicates that my claim is well-supported. As Wasserman (2015, 230) states, “concerns about informed consent and misinformation are widely shared.” These concerns stretch back many years: see Blumberg (1994), Michie (1997), Biesecker and Hamby (2000), Abramsky (2001), Roberts (2002), Cleary-Goldman et al. (2006), Reist (2006), Skotko (2005), and Skotko, Kishnani, and Capone (2009). These concerns remain today: see Klein (2011); Choi,Van Riper, and Thoyre (2012); Farrelly et al. (2012); Nelson Goff et al. (2013); Galst and Verp (2015); and Meredith (2016).
Many of these studies are of people with physical and sensory, not intellectual, disabilities. We can, however, extrapolate from them medical attitudes regarding ID—especially when they are confirmed by research like Klein (2011) and Skotko (2011). Also see Morin (2018), Ormond (2003), Pelleboer-Gunnink (2017), and Ryan and Scior (2014).
Testimonial injustice occurs when prejudice cause us to discredit a speaker’s word—when white police, for example, do not believe a black person (Fricker 2007). In disability contexts, epistemic injustice is a failure to trust a disabled person’s assessment of their own well-being. Kaposy (2018) argues that positive self-reports of life with ID are usually reliable and should not be dismissed as self-deception or adaptive preference.
Savulescu and Momeyer (2000, 129) consider a person with gangrene of the foot. In deliberating amputation, “she is attempting to evaluate a complete state of affairs: how much pain she will experience, whether she will be able to live by herself, visit her grandchildren, and so on. (Importantly, knowing the name of one’s disease and the nature of the operation are less important facts.)” Roberts and Wood (2007) distinguish propositional knowledge (holding true, justified beliefs) from understanding (grasping connections between ideas and seeing how information fits together). Someone may know something about quantum mechanics, for example, but not understand it.
The critical moment may actually come before diagnosis. Prenatal testing to detect fetal anomalies is now part of routine pregnancy care and screening is encouraged by obstetrics organizations. But research indicates that counseling is often inadequate and that parents “back into” prenatal testing with little understanding of its purpose (Sandelowski and Jones 1996; Seavilleklein 2009). Senor and Ville’s 2009 study finds significant professional failure to explain the implications of prenatal testing to pregnant women—and Klein’s 2011 literature review indicates that many women do not make informed choices about undergoing screening and find it hard to refuse testing because it is expected. Many parents are not prepared for adverse findings. When a woman is told that her fetus is at risk for anomaly, McCoyd (2015, 270–271) notes, she is thrust onto the conveyor belt of further testing—“into a myriad of decisions that must be made quickly, under a level of uncertainty as to the severity of many fetal diagnoses.” Informed consent about whether to undergo prenatal testing requires information about their purpose and meaning, their predictive limitations, their possible outcomes, and the consequences of a positive result.
References
Abramsky, L., S. Hall, J. Levitan, and T.M. Marteau. 2001. What parents are told after prenatal diagnosis of a sex chromosome abnormality: Interview and questionnaire study. BMJ 322(7284): 463–466.
Aristotle. 1980. Nicomachean Ethics. Translated by W.D. Ross. Oxford: Oxford University Press.
Baker, B. 1987. Mens rea, negligence and criminal law reform. Law and Philosophy 6(1): 53–88.
Beck, M. 1999. Expecting Adam. New York: Berkley/Penguin.
Bickenbach, J., F. Felder, and B. Schmitz. 2014. Disability and the good human life. Cambridge: Cambridge University Press.
Biesecker, B., and L. Hamby. 2000. What difference the disability community arguments should make for the delivery of prenatal genetic information. In Prenatal testing and disability rights, edited by E. Parens and A. Asch, 340–357. Washington: Georgetown University Press.
Blumberg, L. 1994. The politics of prenatal testing and selective abortion. Sexuality and Disability 12(2): 135–153.
Boss, J. 1993. The birth lottery: Prenatal diagnosis and selective abortion. Chicago: Loyola University Press.
Bradford, M. 2014. Improving joyful lives. Charlotte Lozier Institute, American Reports Series 8. https://lozierinstitute.org/improving-joyful-lives-societys-response-to-difference-and-disability/. Accessed June 2, 2019.
Bryant, A., and J. Swartz. 2018. Why crisis pregnancy centers are legal but unethical. AMA Journal of Ethics 20(3): 269–277.
Chignell, A. 2018. The ethics of belief. In The Stanford Encyclopedia of Philosophy, Spring 2018 edition, edited by E.N. Zalta. https://plato.stanford.edu/archives/spr2018/entries/ethics-belief/. Accessed June 2, 2019.
Choi, H., M. Van Riper, and S. Thoyre. 2012. Decision making following a prenatal diagnosis of Down syndrome: An integrative review. Journal of Midwifery and Women’s Health 57(2): 156–164.
Cleary-Goldman, J., M.A. Morgan, F.D. Malone, J.N. Robinson, M.E. D’Alton, and J. Schulkin. 2006. Screening for Down syndrome: Practice patterns and knowledge of obstetricians and gynecologists. Obstetrics and Gynecology 107(1): 11–17.
Code, L. 1987. Epistemic responsibility. Hanover and London: University Press of New England.
Farrelly, E., M.K. Cho, L. Erby, D. Roter, A. Stenzel, and K. Ormond. 2012. Genetic counseling for prenatal testing: Where is the discussion about disability? Journal of Genetic Counseling 21(6): 814–824.
FitzPatrick, W. 2008. Moral responsibility and normative ignorance: Answering a new skeptical challenge. Ethics 118(4): 589–613.
Frances, B., and J. Matheson. 2018. Disagreement. In The Stanford Encyclopedia of Philosophy, Spring 2018 edition, edited by E.N. Zalta. https://plato.stanford.edu/archives/spr2018/entries/disagreement/. Accessed June 2, 2019.
Fricker, M. 2007. Epistemic injustice. Oxford: Oxford University Press.
Galst, J. 2015. Helping patients cope with their decisions. In Prenatal and preimplantation diagnosis: The burden of choice, edited by J. Galst and M.Verp, 287–321. Dordrecht: Springer.
Galst, J. and Verp, M., eds. 2015. Prenatal and preimplantation diagnosis: The burden of choice. Dordrecht: Springer.
Goldman, A., and T. Blanchard. 2015. Social epistemology. In The Stanford Encyclopedia of Philosophy, Summer 2015 edition, edited by E.N. Zalta. https://plato.stanford.edu/archives/sum2015/entries/epistemology-social/. Accessed June 2, 2019.
Gould, J. 2019. Epistemic virtue, prospective parents and disability abortion. Journal of Bioethical Inquiry 16(3): 389-404.
Gratton, G., P. Cooper, M. Fabiani, C.S. Carter, and F. Karayanidis. 2017. Dynamics of cognitive control: Theoretical bases, paradigms and a view of the future. Psychophysiology 55(3):1–29.
Greco, J., and J. Turri. 2017. Virtue epistemology. In The Stanford Encyclopedia of Philosophy, Winter 2017 edition, edited by E.N. Zalta. https://plato.stanford.edu/archives/win2017/entries/epistemology-virtue/. Accessed June 2, 2019.
Hess, Y., and C. Pickett. 2013. Social cognition and attitudes. In Noba textbook series: Psychology, edited by R. Biswas-Diener and E. Diener. Champaign: DEF Publishers. http://noba.to/6xanb4j9.
Jonsen, A., M. Siegler, and W. Winslade. 2006. Clinical ethics: A practical approach to ethical decisions in clinical medicine, 6th ed. New York: McGraw-Hill.
Junkerman, C., and D. Schiedermayer. 1998. Practical ethics for students, interns and residents, 2nd ed. Hagerstown: University Publishing Group.
Kaposy, C. 2018. Choosing Down syndrome. Cambridge: MIT Press.
Kass, L. 1999. The moral meaning of genetic technology. Commentary, September, 32–38.
Kittay, E.F. 2019. Learning from my daughter: The value and care of disabled minds. Oxford: Oxford University Press.
Klein, D. 2011. Medical disparagement of the disability experience: Empirical evidence for the “expressivist objection” AJOB Primary Research 2(2): 8–20.
Louhiala, P. 2004. Preventing intellectual disability: Ethical and clinical issues. Cambridge: Cambridge University Press.
Madeo, A.C., B.B. Biesecker, C. Brasington, L.H. Erby, and K.F. Peteres. 2011. The relationship between the genetic counseling profession and the disability community: A commentary. American Journal of Medical Genetics 155A(8): 1777–1785.
McCoyd, J. 2015. Critical aspects of decision-making and grieving after diagnosis of fetal anomaly. In Prenatal and preimplantation diagnosis: The burden of choice, edited by J. Galst and M.Verp, 269–286. Dordrecht: Springer..
Meredith, S., C. Kaposy, V.J. Miller, M. Allyse, S. Chandrasekharan, and M. Michie. 2016. Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States. Prenatal Diagnosis 36(8): 714–719.
Michie, S., F. Bron, M. Bobrow, and T.M. Marteeau. 1997. Nondirectiveness in genetic counseling: An empirical study. American Journal of Human Genetics 60(1): 40–47.
Montmarquet, J. 1993. Epistemic virtue and doxastic responsibility. Lanham: Rowman & Littlefield.
Morin D., P. Valois, A.G. Crocker, C. Robitaille, and T. Lopes. 2018. Attitudes of health care professionals toward people with intellectual disability: A comparison with the general population. Journal of Intellectual Disability Research 62(9): 746–758.
Natoli, J., D.L. Ackerman, S. McDermott, and J.G. Edwards. 2012. Prenatal diagnosis of Down syndrome: A systematic review of termination rates. Prenatal Diagnosis 32(2): 142–153.
Nelson Goff, B.S., N. Springer, L.C. Foote, et al. 2013. Receiving the initial Down syndrome diagnosis: A comparison of prenatal and postnatal parent group experiences. Journal of Intellectual and Developmental Disabilities 51(6): 446–457.
Ormond, K., C.J. Gill, P. Semik, and K.L. Kirschner. 2003. Attitudes of health care trainees about genetics and disability: Issues of access, health care communication, and decision making. Journal of Genetic Counseling 12(4): 333–349.
Parens, E., and A. Asch, A. 2000. The disability rights critique of prenatal genetic testing. In Prenatal testing and disability rights, edited by E.Parens and A. Asch, 3–43. Washington: Georgetown University Press.
Patterson, A., and M. Satz. 2002. Genetic counseling and the disabled: Feminism examines the stance of those who stand at the gate. Hypatia 17(3): 118–142.
Pelleboer-Gunnink, H.A., W. Van Oorsouw, J. Van Weeghel, and P. Embregts. 2017. Mainstream health professionals’ stigmatizing attitudes towards people with intellectual disabilities: A systematic review. Journal of Intellectual Disability Research 61(5): 411–434.
Pojman, L. 1995. What can we know? Belmont: Wadsworth.
Ralston, S. 2000. Reflections from the trenches: One doctor’s encounter with disability rights arguments. In Prenatal testing and disability rights, edited by E.Parens and A. Asch, 334–339. Washington: Georgetown University Press.
Reist, M. 2006. Defiant birth. Melbourne: Spinifex Press.
Roberts, C., L.D. Stough, and L.H. Parrish. 2002. The role of genetic counseling in the elective termination of pregnancies involving fetuses with disabilities. Journal of Special Education 36(1): 48–55.
Roberts, R., and J. Wood. 2007. Intellectual virtues. Oxford: Oxford University Press.
Rosen, G. 2003. Culpability and ignorance. Proceedings of the Aristotelian Society, New Series 103(1): 61–84.
Rudy-Hiller, F. 2018. The epistemic conditions for moral responsibility. In The Stanford Encyclopedia of Philosophy, Fall 2018 edition, edited by E.N. Zalta. https://plato.stanford.edu/archives/fall2018/entries/moral-responsibility-epistemic/. Accessed June 2, 2019.
Ryan T., and K. Scior. 2014. Medical students’ attitudes towards people with intellectual disabilities: A literature review. Research in Developmental Disabilities 35(10): 2316–2328.
Sandelowski, M., and L. Jones. 1996. “Healing fictions”: Stories of choosing in the aftermath of the detection of fetal abnormalities. Social Science and Medicine 42(3): 353–361.
Santoro, A.F. 2018. Attitudes and knowledge of healthcare providers regarding patients with intellectual disability and the impact on analogue clinical decision-making. PhD dissertation, Philadelphia College of Osteopathic Medicine. https://digitalcommons.pcom.edu/psychology_dissertations/449/.
Savulescu, J. and R. Momeyer. 2000. Should informed consent be based on rational beliefs? In Medical ethics, edited by M. Boylan, 128–140. Upper Saddle River: Prentice Hall.
Scanlon, T. 1998. What we owe to each other. Cambridge: Belknap Press.
Seavilleklein, V. 2009. Challenging the rhetoric of choice in prenatal screening. Bioethics 23(1): 68–77.
Senor, V., and Y. Ville. 2009. Prenatal screening for Down syndrome: Women’s involvement in decision-making and their attitudes to screening. Prenatal Diagnosis 29(2): 120–128.
Sheets, K., B.G. Crissman, C.D. Feist, et al. 2011. Practice guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome: Recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling 20(5): 432–441.
Siebers, T. 2008. Disability theory. Ann Arbor: University of Michigan Press.
Skotko, B. 2005. Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers. American Journal of Obstetrics and Gynecology 192(3): 670–677. ____.2009. With new prenatal testing, will babies with Down syndrome slowly disappear? Archives of Disease in Childhood 94(11): 823–826.
Skotko, B., P.S. Kishnani, and G.T. Capone. 2009. Prenatal diagnosis of Down syndrome: How best to deliver the news. American Journal of Medical Genetics Part A 149A(11): 2361–2367.
Skotko, B., S.P. Levine, and R. Goldstein. 2011. Self-perceptions from people with Down syndrome. American Journal of Medical Genetics Part A 155A(10): 2360–2369.
Steinbock, B. 2009. Wrongful life and procreative decisions. In Harming future persons, edited by M. Roberts and D. Wasserman, 155–178. Dordrecht: Springer.
Van Woudenberg, R. 2009. Ignorance and force: Two excusing conditions for false beliefs. American Philosophical Quarterly 46(4): 373–386.
Wasserman, D. 2005. The non-identity problem, disability and the role morality of prospective parents. Ethics 116(1): 132–152 ____.2015. Disability perspectives. In Prenatal and preimplantation diagnosis: The burden of choice, edited by J. Galst and M.Verp, 229–245. Dordrecht: Springer.
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Gould, J.B. Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability. Bioethical Inquiry 17, 369–381 (2020). https://doi.org/10.1007/s11673-020-09984-9
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DOI: https://doi.org/10.1007/s11673-020-09984-9