4
Views
0
CrossRef citations to date
0
Altmetric
Research Article

“Down Syndrome is Not a Curse”: parent Perspectives on the Medicalization of Down Syndrome

ORCID Icon, ORCID Icon & ORCID Icon

References

  • Anastasiou, D., and J. M. Kauffman. 2013. The social model of disability: Dichotomy between impairment and disability. The Journal of Medicine and Philosophy 38 (4):441–59. doi:10.1093/jmp/jht026.
  • Barnes, C. 1991. Understanding the social model of disability: Past, present and future. In Routledge handbook of disability studies. 2nd ed. New York, NY: Routledge.
  • Barnes, E. 2014. Valuing disability, causing disability. Ethics 125 (1):88–113. doi:10.1086/677021.
  • Bartesaghi, R., T. F. Haydar, J. M. Delabar, M. Dierssen, C. Martínez-Cué, and D. W. Bianchi. 2015. New perspectives for the rescue of cognitive disability in Down syndrome. The Journal of Neuroscience: The Official Journal of the Society for Neuroscience 35 (41):13843–52. doi:10.1523/JNEUROSCI.2775-15.2015.
  • Batbold, S., G. Cummings, K. A. Riggan, M. Michie, and M. Allyse. 2023. Views of parents of children with Down syndrome on Alzheimer’s disease vaccination. Journal of Intellectual Disabilities: JOID:17446295231177787. [In Press]. doi:10.1177/17446295231177787.
  • Beaudry, J.-S. 2016. Beyond (models of) disability? The Journal of Medicine and Philosophy 41 (2):210–28. doi:10.1093/jmp/jhv063.
  • Brown, J., K. Dodd, and A. Vetere. 2010. ‘I am a normal man’: A narrative analysis of the accounts of older people with Down’s syndrome who lived in institutionalised settings. British Journal of Learning Disabilities 38 (3):217–24. doi:10.1111/j.1468-3156.2009.00596.x.
  • Chapman, R. S., and L. J. Hesketh. 2000. Behavioral phenotype of individuals with down syndrome. Mental Retardation and Developmental Disabilities Research Reviews 6 (2):84–95. doi:10.1002/1098-2779(2000)6:2<84::AID-MRDD2>3.0.CO;2-P.
  • Corbin, J., and A. Strauss. 2015. Basics of Qualitative Research. Los Angeles, CA: SAGE.
  • Cunningham, C. C., S. Glenn, and H. Fitzpatrick. 2000. Parents telling their offspring about Down syndrome and disability. Journal of Applied Research in Intellectual Disabilities 13 (2):47–61. doi:10.1046/j.1468-3148.2000.00012.x.
  • Donovan, J. 1995. The process of analysis during a grounded theory study of men during their partners’ pregnancies. Journal of Advanced Nursing 21 (4):708–15. doi:10.1046/j.1365-2648.1995.21040708.x.
  • Goeldner, C., P. S. Kishnani, B. G. Skotko, J. L. Casero, J. F. Hipp, M. Derks, M.-C. Hernandez, O. Khwaja, S. Lennon-Chrimes, J. Noeldeke, et al. 2022. A randomized, double-blind, placebo-controlled phase II trial to explore the effects of a GABAA-Α5 NAM (Basmisanil) on intellectual disability associated with Down syndrome. Journal of Neurodevelopmental Disorders 14 (1):10. doi:10.1186/s11689-022-09418-0.
  • Graaf, G. d., F. Buckley, J. Dever, and B. G. Skotko. 2017. Estimation of live birth and population prevalence of Down syndrome in nine U.S. states. American Journal of Medical Genetics. Part A 173 (10):2710–9. doi:10.1002/ajmg.a.38402.
  • Graaf, G. d., F. Buckley, and B. G. Skotko. 2015. Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States. American Journal of Medical Genetics. Part A 167A (4):756–67. doi:10.1002/ajmg.a.37001.
  • Graaf, G. d., F. Buckley, and B. Skotko. 2019. People living with Down syndrome in the USA. Last Modified May 3, 2024. Accessed July 26, 2024. https://docs.down­syndromepopulation.org/factsheets/down-syndrome-population-usa-factsheet.pdf.
  • Hart, S. J., J. Visootsak, P. Tamburri, P. Phuong, N. Baumer, M.-C. Hernandez, B. G. Skotko, C. Ochoa-Lubinoff, X. Liogier D’Ardhuy, P. S. Kishnani, et al. 2017. Pharmacological Interventions to Improve Cognition and Adaptive Functioning in Down Syndrome: Strides to Date. American Journal of Medical Genetics. Part A 173 (11):3029–41. doi:10.1002/ajmg.a.38465.
  • Haslam, R. H. A., and R. Milner. 1992. The physician and Down syndrome: Are attitudes changing? Journal of Child Neurology 7 (3):304–10. doi:10.1177/088307389200700312.
  • Inglis, A., Z. Lohn, J. C. Austin, and C. Hippman. 2014. A ‘cure’ for Down syndrome: What do parents want? Clinical Genetics 86 (4):310–7. doi:10.1111/cge.12364.
  • Jiang, J., Y. Jing, G. J. Cost, J.-C. Chiang, H. J. Kolpa, A. M. Cotton, D. M. Carone, B. R. Carone, D. A. Shivak, D. Y. Guschin, et al. 2013. Translating dosage compensation to Trisomy 21. Nature 500 (7462):296–300. doi:10.1038/nature12394.
  • Michie, M., and M. Allyse. 2019. Gene modification therapies: Views of parents of people with Down syndrome. Genetics in Medicine: Official Journal of the American College of Medical Genetics 21 (2):487–92. doi:10.1038/s41436-018-0077-6.
  • National Down Syndrome Society (NDSS). 2023. Preferred Language. https://ndss.org/preferred-language.
  • Natoli, J. L., D. L. Ackerman, S. McDermott, and J. G. Edwards. 2012. Prenatal diagnosis of Down syndrome: A systematic review of termination rates (1995–2011). Prenatal Diagnosis 32 (2):142–53. doi:10.1002/pd.2910.
  • Okoro, C. A., N. D. Hollis, A. C. Cyrus, and S. Griffin-Blake. 2018. Prevalence of disabilities and health care access by disability status and type among adults—United States, 2016. MMWR. Morbidity and Mortality Weekly Report 67 (32):882–7. doi:10.15585/mmwr.mm6732a3.
  • Oliver, M. 2018. Understanding disability: From theory to practice. New York, NY: Palgrace McMillan.
  • Pace, J. E., M. Shin, and S. A. Rasmussen. 2010. Understanding attitudes toward people with Down Syndrome. American Journal of Medical Genetics. Part A 152A (9):2185–92. doi:10.1002/ajmg.a.33595.
  • Pillay, D., S. Girdler, M. Collins, and H. Leonard. 2012. ‘It’s not what you were expecting, but it’s still a beautiful journey’: The experience of mothers of children with Down syndrome. Disability and Rehabilitation 34 (18):1501–10. doi:10.3109/09638288.2011.650313.
  • Prussing, E., E. J. Sobo, E. Walker, and P. S. Kurtin. 2005. Between ‘desperation’ and disability rights: A narrative analysis of complementary/alternative medicine use by parents for children with Down syndrome. Social Science & Medicine (1982) 60 (3):587–98. doi:10.1016/j.socscimed.2004.05.020.
  • Rafii, M. S., B. G. Skotko, M. E. McDonough, M. Pulsifer, C. Evans, E. Doran, G. Muranevici, P. Kesslak, S. Abushakra, and I. T. Lott, ELND005-DS Study Group. 2017. A randomized, double-blind, placebo-controlled, phase 2 study of oral ELND005 (Scyllo-Inositol) in young adults with Down Syndrome without dementia. Journal of Alzheimer’s Disease: JAD 58 (2):401–11. doi:10.3233/JAD-160965.
  • Riggan, K. A., C. Nyquist, M. Michie, and M. A. Allyse. 2020. Evaluating the risks and benefits of genetic and pharmacologic interventions for Down syndrome: Views of parents. American Journal on Intellectual and Developmental Disabilities 125 (1):1–13. doi:10.1352/1944-7558-125.1.1.
  • Shakespeare, T. 2013. Disability Rights and Wrongs Revisited. UK: Taylor & Francis.
  • Skotko, B. G., S. P. Levine, and R. Goldstein. 2011a. Having a brother or sister with Down syndrome: Perspectives from siblings. American Journal of Medical Genetics. Part A 155A (10):2348–59. doi:10.1002/ajmg.a.34228.
  • Skotko, B. G., S. P. Levine, and R. Goldstein. 2011b. Having a son or daughter with Down syndrome: perspectives from mothers and fathers. American Journal of Medical Genetics Part A 155 (10):2335–47. doi:10.1002/ajmg.a.34293.
  • Skotko, B. G., S. P. Levine, and R. Goldstein. 2011c. Self-perceptions from people with Down syndrome. American Journal of Medical Genetics Part A 155 (10):2360–9. doi:10.1002/ajmg.a.34235.
  • Smith, G. F., E. Diamond, J. Lejeune, V. Rosenblum, A. Amarose, C. Anderson, I. Rosenthal, N. Fost, D. Spiker, and M. Davies. 1984. The rights of infants with Down’s syndrome. JAMA: The Journal of the American Medical Association 251 (2):229. doi:10.1001/jama.1984.03340260033022.
  • Snure Beckman, E., N. Deuitch, M. Michie, M. A. Allyse, K. A. Riggan, and K. E. Ormond. 2019. Attitudes toward hypothetical uses of gene-editing technologies in parents of people with autosomal aneuploidies. The CRISPR Journal 2 (5):324–30. doi:10.1089/crispr.2019.0021.
  • Wasserman, D., A. Asch, J. Blustein, and D. Putnam. 2011. Disability: Definitions and models. In The stanford encyclopedia of philosophy, edited by EN Zalta. N.P. https://seop.illc.uva.nl/entries/disability/.
  • Wert, G. d., W. Dondorp, and D. W. Bianchi. 2017. Fetal therapy for Down syndrome: An ethical exploration. Prenatal Diagnosis 37 (3):222–8. doi:10.1002/pd.4995.
  • Whitten, M. 2018. The story of two syndromes. Global Down Syndrome Foundation (blog). https://www.globaldownsyndrome.org/about-down-syndrome/the-story-of-two-syndromes/.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.