Analiza i Egzystencja


ISSN: 1734-9923     eISSN: 2300-7621    OAI    DOI: 10.18276/aie.2020.49-01
CC BY-SA   Open Access   DOAJ  ERIH PLUS  DOAJ

Liste der Ausgaben / 49 (2020)
Shaping the body of a child. Invasive medical procedures on incompetent patients – some ethical and medical remarks on Ashley’s case.

Autoren: Monika Michałowska ORCID
Uniwersytet Medyczny w Łodzi

Karina Kubicius
Schlüsselbegriffe: static encephalopathy Ashley treatment invasive medical procedures incompetent patients the right to an open future best interest
Veröffentlichungsdatum der gesamten Ausgabe:2020
Seitenanzahl:25 (5-29)
Cited-by (Crossref) ?:

Zusätzliche informationen

1) nota o finansowaniu:

The research on this paper was supported by the Ministry of Science and Higher Education, Republic of Poland, programme “Narodowy Program Rozwoju Humanistyki 2016–2019” (Ministerstwo Nauki i Szkolnictwa Wyższego “Narodowy Program Rozwoju Humanistyki 2016–2019”), 0073/NPRH4/H2b/83/2016.

 

2) contribution

Karina Kubicius and Monika Michałowska have contributed equally to this paper.

Abstract

In our paper we present and analyze the case of Ashley X and the treatment she underwent as an example of invasive medical procedures performed on children. The case still remains controversial, and the treatment consisting of growth attenuation, hysterectomy, appendectomy and breast buds removal has both its opponents and proponents. In our paper we have a closer look at some arguments important for ethical analysis of Ashley’s case and treatment. First, for a better understanding of the case we present her medical condition. Secondly, we refer to the classification of therapeutic versus non-therapeutic medical procedures. Thirdly, we examine the issue of surrogate decisions for incompetent patients. Finally, we analyze two vital ethical arguments: a) the right to the open future and b) the criterion of best-interest.
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Bibliographie

1.BIBLIOGRAPHY
2.Archard, D. (2004). Children: Rights and Childhood. London; New York: Routledge, 2nd edition.
3.Ashley’s Parents. (2007). The “Ashley Treatment”, Towards a Better Quality of Life for “Pillow Angels. Retrieved from Pillow Angel website: http://www.pillowangel.org/ [22/12/2018].
4.Beauchamp, T.L., Childress, J.F. (1994). Principles of Biomedical Ethics. New York: Oxford University Press.
5.Brake, E., Millum, J. (2016). Parenthood and Procreation. Stanford Encyclopedia of Philosophy.
6.Brighouse, H. (2002). What Rights (if Any) Do Children Have? In The Moral and Political Status of Children, eds. MacLeod, C.M., Archard, D. (pp. 31–52). Oxford: Oxford University Press.
7.Brock, D. W. (2005). Shaping Future Children: Parental Rights and Societal Interests. Journal of Political Philosophy, 13 (4), 377–398.
8.Brock, D. W. (2007). Patient Competence and Surrogate Decision-Making. In: The Blackwell Guide to Medical Ethics, eds. Rhodes, R., Francis, L. P., Silvers, A. (pp.128–142). Malden, MA: Blackwell Publishing.
9.Buchanan, A. E., Brock, D. W. (1990). Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge: Cambridge University Press.
10.Caplan, A. (2007). Is Peter Pan treatment a moral choice? Debate over stunting a disabled child’s growth pits comfort against ethics. Retrieved from MSNBC website, January 5, 2007: http://www.nbcnews.com/id/16472931/ns/health-health_care/t/peter-pan-treatment-moral-choice/#.XMmxv9jgqpo [06/03/2019].
11.Carlson, D. R., Dorfman, D. A. (2007). Investigative Report Regarding the “Ashley Treatment”. Retrieved from Disability Rights Washington website, December 6, 2017: https://www.disabilityrightswa.org/reports/investigative-report-regarding-ashley-treatment/investigativereportregardingtheashleytreatment_may2007/ [02/04/2019].
12.Carlson, D., Smith, C., Wilker, N. (2012). Devaluing People with Disabilities Medical Procedures that Violate Civil Rights. Retrieved from NDRN website: https://www.ndrn.org [20/04/2019].
13.Chen, W., Shieh, C., Swanger, S. A., Tankovic, A., Au, M., McGuire, M., Tagliati, M., Graham, J. M., Madan-Khetarpal, S., Traynelis, S. F., Yuan, H., Pierson, T. M. (2017). GRIN1 mutation associated with intellectual disability alters NMDA receptor trafficking and function. Journal of Human Genetics, 62 (6), 589–597. DOI:10.1038/jhg.2017.19 .
14.Clark, P. A., L. Vasta. (2006). The Ashley treatment: An ethical analysis. Internet Journal of Law, Healthcare, and Ethics 5(1) (http://ispub.com/IJLHE/5/1/8005) [24/03/2019].
15.Coleman, G. (2007). The irreversible disabling of a child: The “Ashley treatment.”, National Catholic Bioethics Quarterly, 7 (4), 722–728.
16.Davis, D. (1997). Genetic Dilemmas and the Child’s Right to an Open Future. Hastings Center Report, 27 (2), 7–15.
17.Davis, D. (2001). Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children's Futures. New York: Routledge.
18.Diekema, D. S., Fost, N. (2010). Ashley Revisited: A Response to the Critics. The American Journal of Bioethics, 10 (1), 30–44. DOI:10.1080/15265160903469336 .
19.Dresser, R. (1986). Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law. Arizona Law Review, 28 (3), 373–405.
20.Dworkin, G. (1988). The Theory and Practice of Autonomy. New York: Cambridge University Press.
21.Dworkin, R. (1993). Life’s Dominion : An Argument About Abortion, Euthanasia, and Individual Freedom. New York: Alfred A. Knopff.
22.Feinberg, J. (1980). Rights, Justice, and the Bounds of Liberty: Essays in Social Philosophy. Princeton: Princeton University Press.
23.Feinberg, J. (1980). The Child's Right to an Open Future. In: Whose Child? Children's Rights, Parental Authority, and State Power, eds. Aiken, W., LaFollette, H. (pp. 124–153). Totowa, NJ: Rowman & Littlefield.
24.Feinberg, J. (1986). The Moral Limits of the Criminal Law: Harm to Self. New York; Oxford: Oxford University Press.
25.Feinberg, J. (1992). Freedom and Fulfillment: Philosophical Essays. Princeton: Princeton University Press.
26.Gilbert, S. (2009). Children’s bodies, Parents’ choices. Hastings Centre Report, 39 (1), 14–15.
27.Gillam, L. H., Hewitt, J. K., Warne, G. L. (2010). Ethical Principles for the Management of Infants with Disorders of Sex Development. Hormone Research in Paediatrics, 74 (6), 412–418. DOI:10.1159/000316940.
28.Golden, G. S. (1987). Textbook of Pediatric Neurology. New York: Plenum PublishingCorporation.
29.Gunther, D. F., Diekema, D. S. (2006). Attenuating Growth in Children With Profound Developmental Disability. Archives of Pediatrics & Adolescent Medicine, 160 (10), 1013–1017. DOI:10.1001/archpedi.160.10.1013.
30.Harnacke, C. (2016). The Ashley Treatment: Improving Quality of Life or Infringing Dignity and Rights?. Bioethics, 30 (3), 141–150.
31.Javed, A., Lteif, A. (2013). Development of the Human Breast. Seminars in Plastic Surgery, 27 (1), 9-10. DOI: http://dx.doi.org/ 10.1055/s-0033-1343989.
32.Jaworska, A., Tannenbaum, J. (2014). Person-Rearing Relationships as a Key to Higher Moral Status. Ethics, 124 (2), 242–271.
33.Jonsen, A. R., Siegler, M., Winslade, W. J. (2010). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 7e. eBook: McGraw Hill Professional.
34.Katz, A. L., Webb, S. A. (2016). Informed Consent in Decision-Making in Pediatric Practice. Pediatrics, 138 (2), e1–e16. DOI:10.1542/peds.2016-1485.
35.Kerruish, N. (2016). Growth Attenuation Therapy. Cambridge Quarterly of Healthcare Ethics, 25 (1), 70–83. DOI:10.1017/s0963180115000304 .
36.Kittay, E., F. (2011). Forever Small: The Strange Case of Ashley X. Hypatia, 26 (3), 610–631.
37.Kopelman, L. (2007). Using the Best Interests Standard to Decide Whether to Test Children for Untreatable, Late-Onset Genetic Diseases. Journal of Medicine and Philosophy, 32 (4), 375–94.
38.Liao, S. M., Savulescu, J., Sheehan, M. (2007). The Ashley Treatment: Best Interests, Convenience, and Parental Decision-Making. Hastings Center Report, 37 (2), 16–20.
39.Mackenzie, K. (2015). Autonomy. In: The Routledge Companion to Bioethics, ed. Arras, J. D., Fenton, E., Kukla, R. (pp. 277–271). New York: Routledge.
40.Millum, J. (2014). The Foundation of the Child’s Right to an Open Future. Journal of Social Philosophy, 45 (4), 522–538. DOI:10.1111/josp.12076.
41.Mulin, A. (2015). Children, Parents, and Responsibility for Children’s Health. In: The Routledge Companion to Bioethics, ed. Arras, J. D., Fenton, E., Kukla, R. (pp. 381–392). New York: Routledge.
42.Newsom, R. W. (2007). Seattle Syndrome: Comments on the Reaction to Ashley X. Nursing Philosphy, 8 (4), 291-294.
43.Nunes, R. (2001). Ethical Dimension of Paediatric Cochlear Implantation. Theoretical Medicine and Bioethics, 22 (4), 337–349.
44.O’Neill, O. (2002). Autonomy and trust in bioethics. Cambridge: Cambridge University Press.
45.Olgun, Z. D., Yazici, M. (2013). Posterior instrumentation and fusion. Journal of Children’s Orthopaedics, 7 (1), 69–76. DOI:10.1007/s11832-012-0456-5.
46.Ouellette, A. (2010). Shaping Parental Authority over Children’s Bodies . Indiana Law Journal, 85, 956–1001.
47.Partsch, C.-J., Sippel, W. G. (2001). Pathogenesis and epidemiology of precocious puberty. Effects of exogenous oestrogens. Human Reproduction Update, 7 (3), 292–302. DOI:10.1093/humupd/7.3.292 .
48.Picard, A. (2007). It’s wrong to keep disabled girl as an ‘angel’. Retrieved from The Globe and Mail website, January 11, 2007. https://www.theglobeandmail.com/life/its-wrong-to-keep-disabled-girl-as-an-angel/article20391949/ [19/04/2019].
49.Prusak, B. G. (2013). Parental Obligations and Bioethics: The Duties of a Creator. New York: Routledge.
50.Rawls, J. (1971 reprint 2005). A Theory of Justice . Cambridge, MA: Harvard University Press.
51.Rosendaal, F. R. Helmerhorst, F.M., Vandenbroucke, J.P. (2002). Female Hormones and Thrombosis. Arteriosclerosis, Thrombosis, and Vascular Biology. The American Journal of Heart Association 22 (2), 201–210. DOI:10.1161/hq0202.102318.
52.Shim, K., S. (2015). Pubertal growth and epiphyseal fusion. Annals of Pediatric Endocrinology & Metabolism, 20, 8–12. DOI: dx.doi.org/10.6065/apem.2015.20.1.8.
53.Siddiqi, S. U., Van Dyke, D. C., Donohoue, P., McBrien, D. M. (2007). Premature sexual development in individuals with neurodevelopmental disabilities. Developmental Medicine & Child Neurology, 41 (6), 392–395. DOI:10.1111/j.1469-8749.1999.tb00624.x.
54.Singer, P. (2007). A Convenient Truth. Retrieved from The New York Times website, January 26, 2007: https://www.nytimes.com/2007/01/26/opinion/26singer.html [18/03/2019].
55.Singh, D., Sanyal, S., Chattopadhyay, N. (2010). The role of estrogen in bone growth and formation: changes at puberty. Cell Health and Cytoskeleton, 3, 1–12. DOI:10.2147/chc.s8916.
56.Sobsey, D. (2007). Growth attenuation and the indirect benefit rationale. Ethics and Intellectual Disability, 10 (1), 1–8.
57.Sobsey, D. (2010). Ethics or Advocacy? The American Journal of Bioethics, 10 (1), 59–60. DOI:10.1080/15265160903460962.
58.Spriggs, M., Savulescu, J. (2006). The Ethics of Surgically Assigning Sex for Intersex Children . In: Cutting to the Core: Exploring the Ethics of Contested Surgerie,. ed. Benatar, D. (pp. 79–96). Maryland: Rowman & Littlefield Publishers.
59.Stanley, J. M. (1989). The Appleton Consensus: suggested international guidelines for decisions to forego medical treatment. Journal of Medical Ethics, 15 (3), 129–136. DOI:10.1136/jme.15.3.129.
60.Torpy, J. M. (2004). Hysterectomy. The Journal of the American Medical Association, 291 (12), 1526.
61.Wrigley, R., Kerruish, N., Hofman, P. L., Jefferies, C., Pollock, A. J., Wheeler, B. J. (2017). Growth attenuation therapy for children with severe physical and cognitive disability: Practice and perspectives of New Zealand paediatricians. Journal of Paediatrics and Child Health, 53 (12), 1180–1185. DOI:10.1111/jpc.13629.