Editing Down syndrome (section)

==Society and culture==
{{See also|List of people with Down syndrome}}

===Name===
Down syndrome is named after [[John Langdon Down]]. He was the first person to provide an accurate description of the syndrome. His research that was published in 1866 earned him the recognition as the Father of the syndrome.<ref>{{Cite web |title=About Down Syndrome |url=https://ndss.org/about |access-date=28 March 2023 |website=National Down Syndrome Society}}</ref> While others had previously recognized components of the condition, John Langdon Down described the syndrome as a distinct, unique medical condition.<ref name=":4" />

In 1975, the United States [[National Institutes of Health]] (NIH) convened a conference to standardize the naming and recommended replacing the possessive form, "Down's syndrome", with "Down syndrome".<ref>{{cite journal | vauthors =  | title = Classification and nomenclature of morphological defects | journal = Lancet | volume = 1 | issue = 7905 | pages = 513 | date = March 1975 | pmid = 46972 | doi = 10.1016/S0140-6736(75)92847-0 | s2cid = 37636187 }}</ref> However, both the possessive and nonpossessive forms remain in use by the general population.<ref name=Smith-2011>{{cite book| vauthors = Smith K |title=The politics of Down syndrome|year=2011|publisher=Zero|location=[New Alresford, Hampshire]|isbn=978-1-84694-613-4|page=3|url=https://books.google.com/books?id=wSWzQyUZJxUC&pg=PA3|url-status=live|archive-url=https://web.archive.org/web/20170123082433/https://books.google.com/books?id=wSWzQyUZJxUC&pg=PA3|archive-date=2017-01-23}}</ref> The term "trisomy 21" is also commonly used.<ref name="Rod2011">{{cite journal | vauthors = Rodríguez-Hernández ML, Montoya E | title = Fifty years of evolution of the term Down's syndrome | journal = Lancet | volume = 378 | issue = 9789 | pages = 402 | date = July 2011 | pmid = 21803206 | doi = 10.1016/s0140-6736(11)61212-9 | s2cid = 8541289 }}</ref><ref>{{cite book| vauthors = Westman JS |title=Medical genetics for the modern clinician.|year=2005|publisher=Lippincott Williams & Wilkins|location=Philadelphia, PA|isbn=978-0-7817-5760-7|page=[https://archive.org/details/medicalgeneticsf0000west/page/136 136]|url=https://archive.org/details/medicalgeneticsf0000west|url-access=registration}}</ref>

===Ethics===
Obstetricians routinely offer antenatal screenings for various conditions, including Down syndrome.<ref name=Cher2010>{{cite journal | vauthors = Chervenak FA, McCullough LB | title = Ethical considerations in first-trimester Down syndrome risk assessment | journal = Current Opinion in Obstetrics & Gynecology | volume = 22 | issue = 2 | pages = 135–138 | date = April 2010 | pmid = 20125014 | doi = 10.1097/gco.0b013e3283374a9f | s2cid = 2017130 }}</ref><ref>{{Cite journal |last1=Ravitsky |first1=Vardit |last2=Roy |first2=Marie-Christine |last3=Haidar |first3=Hazar |last4=Henneman |first4=Lidewij |last5=Marshall |first5=John |last6=Newson |first6=Ainsley J. |last7=Ngan |first7=Olivia M.Y. |last8=Nov-Klaiman |first8=Tamar |date=2021-08-31 |title=The Emergence and Global Spread of Noninvasive Prenatal Testing |journal=Annual Review of Genomics and Human Genetics |language=en |volume=22 |issue=1 |pages=309–338 |doi=10.1146/annurev-genom-083118-015053 |issn=1527-8204|doi-access=free |pmid=33848430 }}</ref> When results from testing become available, it is considered an ethical requirement to share the results with the patient.<ref name=Cher2010/><ref>{{cite journal | vauthors = Sharma G, McCullough LB, Chervenak FA | title = Ethical considerations of early (first vs. second trimester) risk assessment disclosure for trisomy 21 and patient choice in screening versus diagnostic testing | journal = American Journal of Medical Genetics. Part C, Seminars in Medical Genetics | volume = 145C | issue = 1 | pages = 99–104 | date = February 2007 | pmid = 17299736 | doi = 10.1002/ajmg.c.30118 | doi-access = free }}</ref>

Some bioethicists deem it reasonable for parents to select a child who would have the highest well-being.<ref>{{cite journal | vauthors = Savulescu J, Kahane G | title = The moral obligation to create children with the best chance of the best life | journal = Bioethics | volume = 23 | issue = 5 | pages = 274–290 | date = June 2009 | pmid = 19076124 | doi = 10.1111/j.1467-8519.2008.00687.x | s2cid = 13897639 }}</ref> One criticism of this reasoning is that it often values those with disabilities less.<ref>{{cite journal | vauthors = Bennett R | title = The fallacy of the Principle of Procreative Beneficence | journal = Bioethics | volume = 23 | issue = 5 | pages = 265–273 | date = June 2009 | pmid = 18477055 | doi = 10.1111/j.1467-8519.2008.00655.x | s2cid = 7373407 | url = https://pure.manchester.ac.uk/ws/files/20431080/POST-PEER-REVIEW-NON-PUBLISHERS.DOC }}</ref> Some parents argue that Down syndrome should not be prevented or cured and that eliminating Down syndrome amounts to genocide.<ref>{{Cite web|title = Halifax mom questions Down syndrome suppression|url = http://www.cbc.ca/news/canada/nova-scotia/halifax-mom-questions-down-syndrome-suppression-1.1323401|access-date = 2015-09-26|url-status=live|archive-url = https://web.archive.org/web/20151105024307/http://www.cbc.ca/news/canada/nova-scotia/halifax-mom-questions-down-syndrome-suppression-1.1323401|archive-date = 2015-11-05}}</ref><ref>{{Cite web|title = Should Down Syndrome Be Cured?|url = http://parenting.blogs.nytimes.com/2010/01/11/should-down-syndrome-be-cured/|access-date = 2015-09-26| vauthors = Belkin L |url-status=live|archive-url = https://web.archive.org/web/20150425093102/http://parenting.blogs.nytimes.com/2010/01/11/should-down-syndrome-be-cured/|archive-date = 2015-04-25|date = 2010-01-11}}</ref> The [[Disability rights|disability rights movement]] does not have a position on screening,<ref name=Paren2003/> although some members consider testing and abortion discriminatory.<ref name=Paren2003>{{cite journal | vauthors = Parens E, Asch A | title = Disability rights critique of prenatal genetic testing: reflections and recommendations | journal = Mental Retardation and Developmental Disabilities Research Reviews | volume = 9 | issue = 1 | pages = 40–47 | year = 2003 | pmid = 12587137 | doi = 10.1002/mrdd.10056 }}</ref> Some in the United States who are [[anti-abortion]] support abortion if the fetus is disabled, while others do not.<ref name=Green1997>{{cite journal | vauthors = Green RM | title = Parental autonomy and the obligation not to harm one's child genetically | journal = The Journal of Law, Medicine & Ethics | volume = 25 | issue = 1 | pages = 5–15, 2 | date = Spring 1997 | pmid = 11066476 | doi = 10.1111/j.1748-720x.1997.tb01389.x | s2cid = 38939256 | url = https://zenodo.org/record/1230726 }}</ref> Of a group of 40 mothers in the United States who have had one child with Down syndrome, half agreed to screening in the next pregnancy.<ref name=Green1997/>

Within the US, some [[Protestant]] denominations see abortion as acceptable when a fetus has Down syndrome while [[Eastern Orthodox Church|Orthodox Christianity]] and [[Roman Catholics|Roman Catholicism]] do not.<ref name=Rel2013>{{cite book|title=Encyclopedia of religious controversies in the United States.|year=2013|publisher=ABC-CLIO|location=Santa Barbara, Calif.|isbn=978-1-59884-867-0|page=278|url=https://books.google.com/books?id=vnWE00YVeJQC&pg=PA278|author-link1=Bill J. Leonard|author-link2=Jill Y. Crainshaw| vauthors = Leonard BJ, Crainshaw JY |edition=2nd|url-status=live|archive-url=https://web.archive.org/web/20170123082425/https://books.google.com/books?id=vnWE00YVeJQC&pg=PA278|archive-date=2017-01-23}}</ref> Women may face disapproval whether they choose abortion or not.<ref>{{cite book|title=Woman-centered care in pregnancy and childbirth|year=2010|publisher=Radcliffe Pub.|location=Oxford|isbn=978-1-84619-161-9|page=140|url=https://books.google.com/books?id=OFvr9oIt1tsC&pg=PA140| vauthors = Shields SG, Candib LM |url-status=live|archive-url=https://web.archive.org/web/20170123082811/https://books.google.com/books?id=OFvr9oIt1tsC&pg=PA140|archive-date=2017-01-23}}</ref> Some of those against screening refer to it as a form of [[eugenics]].<ref name=Rel2013/>

===Advocacy groups===

Advocacy groups for individuals with Down syndrome began to be formed after the [[World War II|Second World War]].<ref name="Adv2011">{{cite book | chapter = Into the Mainstream |title=Downs: The history of a disability|year=2011|publisher=Oxford University Press|isbn=978-0-19-161978-6|page=147| chapter-url = https://books.google.com/books?id=lm0BrR0POj8C&pg=PA147| vauthors = Wright D |url-status=live|archive-url=https://web.archive.org/web/20170123083050/https://books.google.com/books?id=lm0BrR0POj8C&pg=PA147|archive-date=2017-01-23}}</ref> These were organizations advocating for the inclusion of people with Down syndrome into the general school system and for a greater understanding of the condition among the general population,<ref name="Adv2011" /> as well as groups providing support for families with children living with Down syndrome.<ref name="Adv2011" /> Before this individuals with Down syndrome were often placed in [[History of psychiatric institutions|mental hospitals or asylums]]. Organizations included the [[Mencap|Royal Society for Handicapped Children and Adults]] founded in the UK in 1946 by [[Judy Fryd]],<ref name="Adv2011" /><ref>{{cite web|title=Timeline|url=http://www.mencap.org.uk/about-us/our-history/timeline|work=MENCAP|access-date=2 February 2014|url-status=dead|archive-url=https://web.archive.org/web/20110617061939/http://www.mencap.org.uk/about-us/our-history/timeline|archive-date=17 June 2011}}</ref> Kobato Kai founded in Japan in 1964,<ref name="Adv2011" /> the National Down Syndrome Congress founded in the United States in 1973 by [[Kathryn McGee]] and others,<ref name="Adv2011" /><ref>{{cite web|title=National Down Syndrome Organizations in the U.S.|url=http://www.globaldownsyndrome.org/about-down-syndrome/resources/national-down-syndrome-organizations-2/|work=Global Down Syndrome Foundation|access-date=2 February 2014|url-status=live|archive-url=https://web.archive.org/web/20140118014934/http://www.globaldownsyndrome.org/about-down-syndrome/resources/national-down-syndrome-organizations-2/|archive-date=18 January 2014|date=2012-02-21}}</ref> and the [[National Down Syndrome Society]] founded in 1979 in the United States.<ref name="Adv2011" /> The first Roman Catholic order of nuns for women with Down Syndrome, [[Little Sisters Disciples of the Lamb]], was founded in 1985 in France.<ref name="vatican">{{cite news | title = Religious Sisters with Down syndrome: the joy of shared contemplative life | vauthors = Vet C | date = July 24, 2019 | access-date = July 31, 2019 | publisher = Vatican News | url = https://www.vaticannews.va/en/world/news/2019-07/stories-religious-sisters-with-down-syndrome.html }}</ref>

The first [[World Down Syndrome Day]] was held on 21 March 2006.<ref name=WDSD2014>{{cite web|title=World Down Syndrome Day|url=http://www.ds-int.org/world-down-syndrome-day|work=Down Syndrome International| access-date=2 February 2014|url-status=live|archive-url=https://web.archive.org/web/20140314001941/http://www.ds-int.org/world-down-syndrome-day|archive-date=14 March 2014}}</ref> The day and month were chosen to correspond with 21 and trisomy, respectively.<ref>{{cite book| vauthors = Pratt G, Rosner V |title=The global and the intimate feminism in our time|year=2012|publisher=Columbia University Press|location=New York|isbn=978-0-231-52084-3|page=113|url=https://books.google.com/books?id=bWGPe649QjIC&pg=PA113 |url-status=live|archive-url= https://web.archive.org/web/20170123082556/https://books.google.com/books?id=bWGPe649QjIC&pg=PA113 |archive-date=2017-01-23}}</ref> It was recognized by the [[United Nations General Assembly]] in 2011.<ref name=WDSD2014/>

Special21.org, founded in 2015, advocates the need for a specific classification category to enable Down syndrome swimmers the opportunity to qualify and compete at the [[Paralympic Games]].<ref>{{Cite web|url=https://www.portugalresident.com/special21-celebrates-world-down-syndrome-day-in-albufeira/|title=Special21 celebrates World Down Syndrome Day in Albufeira|publisher=Portugal Resident|date=March 25, 2022|access-date=March 13, 2024}}</ref>  The project began when International Down syndrome swimmer Filipe Santos broke the world record in the 50m butterfly event, but was unable to compete at the Paralympic Games.<ref>{{Cite web|url=https://www.portugalresident.com/algarve-swimmer-with-down-syndrome-breaks-world-record/|title=Algarve swimmer with Down syndrome breaks world record|publisher=Portugal Resident|date=February 27, 2019|access-date=March 13, 2024}}</ref><ref>{{Cite web|url=https://special21.org/sobre-nos/
|title=Special21 About Us|publisher=Special21.org|access-date=March 13, 2024}}</ref>

===Paralympic Swimming===

[[International Paralympic Committee]] [[Para-swimming classification]] codes are based upon single impairment only, whereas Down syndrome individuals have both physical and intellectual impairments.

Although Down syndrome swimmers are able to compete in the [[Para swimming|Paralympic Swimming]] [[S14 (classification)|S14]] intellectual impairment category (provided they score low in IQ tests), they are often outmatched by the superior physicality of their opponents.<ref>{{Cite web|url=https://www.insidethegames.biz/articles/1117707/ipc-athletes-downs-syndrome-paralympics|title=IPC urged to allow greater numbers of athletes with Down's syndrome to compete at Paralympics|publisher=Insidethegames.biz|author=Liam Morgan|date=January 12, 2022|access-date=March 2, 2024}}</ref><ref>{{Cite web|url=https://www.mirror.co.uk/sport/other-sports/paralympics-calls-down-syndrome-category-28545992|title=Paralympics faces calls for Down's syndrome category to ensure level playing field|publisher=Mirror|author=Liam Llewellyn|date=November 21, 2022|access-date=February 10, 2024}}</ref>

At present there is no designated Paralympic category for swimmers with Down syndrome, meaning they have to compete as intellectually disadvantaged athletes. This disregards their physical disabilities.<ref>{{Cite web|url=https://mashable.com/article/down-syndrome-athletes-paralympics|title=Athletes with Down syndrome fight for inclusion at the Paralympics|publisher=Mashable.com|author=Ariel Bogle|date=August 29, 2016|access-date=March 2, 2024}}</ref><ref>{{Cite web|url=https://www.skysports.com/more-sports/olympics/news/29177/12563240/paralympic-dream-for-british-down-syndrome-swimmers-at-first-national-championships|title=Paralympic dream for British Down syndrome swimmers at first national championships|publisher=Sky Sports|author=Rebecca Williams|date=March 11, 2022|access-date=March 2, 2024}}</ref>

A number of advocacy groups globally have been lobbying for the inclusion of a distinct classification category for Down syndrome swimmers within the IPC Classification Codes framework.<ref>{{Cite web|url=https://www.portugalresident.com/special21-celebrates-world-down-syndrome-day-in-albufeira/|title=Special21 celebrates World Down Syndrome Day in Albufeira|publisher=Portugal Resident|date=March 25, 2022|access-date=March 2, 2024}}</ref>

Despite ongoing advocacy, the issue remains unresolved, and swimmers with Down syndrome continue to face challenges in accessing appropriate classification pathways.<ref>{{Cite web|url=https://www.dsiso.org/paralympics-participation-swimmers-with-down-syndrome/|title=Paralympics Participation swimmers with Down syndrome|publisher=Down Syndrome International Swimming Organisation|author=Emily Laurence|access-date=March 2, 2024}}</ref><ref>{{Cite web|url=https://www.mirror.co.uk/sport/other-sports/paralympics-calls-down-syndrome-category-28545992|title=Paralympics faces calls for Down's syndrome category to ensure level playing field|publisher=Mirror|author=Liam Llewellyn|date=November 21, 2022|access-date=March 2, 2024}}</ref>