Editing Huntington's disease (section)

==Society and culture==
{{See also|List of Huntington's disease media depictions}}

===Ethics===
{{See also|In vitro fertilisation#Ethics|Stem cell controversy}}

[[Genetic testing]] for Huntington's disease has raised several ethical issues. The issues for genetic testing include defining how mature an individual should be before being considered eligible for testing, ensuring the confidentiality of results, and whether companies should be allowed to use test results for decisions on employment, life insurance or other financial matters. There was controversy when [[Charles Davenport]] proposed in 1910 that [[compulsory sterilization]] and [[immigration]] control be used for people with certain diseases, including HD, as part of the [[eugenics]] movement.<ref>{{cite journal | vauthors = Davenport CB | title = Huntington's Chorea in Relation to Heredity and Eugenics | journal = Proceedings of the National Academy of Sciences of the United States of America | volume = 1 | issue = 5 | pages = 283–5 | date = May 1915 | pmid = 16575999 | pmc = 1090803 | doi = 10.1073/pnas.1.5.283 | bibcode = 1915PNAS....1..283D| doi-access = free }}</ref> [[In vitro fertilization]] has some issues regarding its use of embryos. Some HD research has ethical issues due to its use of [[Ethics of animal research|animal testing]] and [[embryonic stem cells]].<ref>{{cite journal | vauthors = Rollin BE | title = The regulation of animal research and the emergence of animal ethics: a conceptual history | url = https://org.uib.no/dyreavd/handouts/Rollin__B._2006._Animal_Research_Regulation_in_Theoret._Medicin_....PDF | journal = Theoretical Medicine and Bioethics | volume = 27 | issue = 4 | pages = 285–304 | year = 2006 | pmid = 16937023 | doi = 10.1007/s11017-006-9007-8 | s2cid = 18620094 | access-date = 1 December 2019 | archive-date = 8 October 2020 | archive-url = https://web.archive.org/web/20201008152801/https://org.uib.no/dyreavd/handouts/Rollin__B._2006._Animal_Research_Regulation_in_Theoret._Medicin_....PDF | url-status = dead }}</ref><ref name="pmid18181947">{{cite journal | vauthors = Doerflinger RM | title = The problem of deception in embryonic stem cell research | journal = Cell Proliferation | volume = 41 | issue = Suppl 1 | pages = 65–70 | date = February 2008 | pmid = 18181947 | doi = 10.1111/j.1365-2184.2008.00492.x | pmc = 6496399}}</ref>

The development of an accurate diagnostic test for Huntington's disease has caused social, legal, and ethical concerns over access to and use of a person's results.<ref>{{cite journal | vauthors = Chapman MA | title = Predictive testing for adult-onset genetic disease: ethical and legal implications of the use of linkage analysis for Huntington disease | journal = American Journal of Human Genetics | volume = 47 | issue = 1 | pages = 1–3 | date = July 1990 | pmid = 2140926 | pmc = 1683745}}</ref><ref>{{cite journal | vauthors = Huggins M, Bloch M, Kanani S, Quarrell OW, Theilman J, Hedrick A, Dickens B, Lynch A, Hayden M | title = Ethical and legal dilemmas arising during predictive testing for adult-onset disease: the experience of Huntington disease | journal = American Journal of Human Genetics | volume = 47 | issue = 1 | pages = 4–12 | date = July 1990 | pmid = 1971997 | pmc = 1683755}}</ref>
Many guidelines and testing procedures have strict procedures for disclosure and confidentiality to allow individuals to decide when and how to receive their results and also to whom the results are made available.<ref name="lancet07" /> Insurance companies and businesses are faced with the question of whether to use genetic test results when assessing an individual, such as for life insurance or employment. The United Kingdom's insurance companies agreed with the [[Department of Health and Social Care]] that until 2017 customers would not need to disclose predictive genetics tests to them, but this agreement explicitly excluded the government-approved test for Huntington's when writing policies with a value over {{GBP|500,000}}.<ref>{{cite press release |url=https://www.abi.org.uk/News/News-releases/2011/04/Insurance-Genetics-Moratorium-extended-to-2017 |title=Insurance Genetics Moratorium extended to 2017 |access-date=13 January 2016 |publisher=Association of British Insurers |date=5 April 2011 |url-status=live |archive-url=https://web.archive.org/web/20160304043951/https://www.abi.org.uk/News/News-releases/2011/04/Insurance-Genetics-Moratorium-extended-to-2017 |archive-date=4 March 2016}}</ref><ref name="Expert backs gene test disclosure">{{cite news|title=Expert backs gene test disclosure|url=http://news.bbc.co.uk/1/hi/health/6731623.stm|publisher=BBC article|date=7 June 2007|url-status=live|archive-url=https://web.archive.org/web/20080226155310/http://news.bbc.co.uk/1/hi/health/6731623.stm|archive-date=26 February 2008}}</ref> As with other untreatable genetic conditions with a later onset, it is ethically questionable to perform presymptomatic testing on a child or adolescent since there would be no medical benefit for that individual. There is consensus for testing only individuals who are considered cognitively mature, although there is a counter-argument that parents have a right to make the decision on their child's behalf. With the lack of effective treatment, testing a person under [[Age of majority|legal age]] who is not judged to be [[Gillick competence|competent]] is considered unethical in most cases.<ref name="pmid2136787"/><ref name="pmid8950670">{{cite journal | vauthors = Binedell J, Soldan JR, Scourfield J, Harper PS | title = Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents | journal = Journal of Medical Genetics | volume = 33 | issue = 11 | pages = 912–8 | date = November 1996 | pmid = 8950670 | pmc = 1050784 | doi = 10.1136/jmg.33.11.912}}</ref><ref name="pmid18704981">{{cite journal | vauthors = Borry P, Goffin T, Nys H, Dierickx K | title = Predictive genetic testing in minors for adult-onset genetic diseases | journal = The Mount Sinai Journal of Medicine, New York | volume = 75 | issue = 3 | pages = 287–96 | year = 2008 | pmid = 18704981 | doi = 10.1002/msj.20038 | url = https://lirias.kuleuven.be/handle/123456789/223776}}</ref>

There are ethical concerns related to [[Prenatal diagnosis|prenatal genetic testing]] or [[preimplantation genetic diagnosis]] to ensure a child is not born with a given disease.<ref name="pmid9949442">{{cite journal | vauthors = Braude PR, De Wert GM, Evers-Kiebooms G, Pettigrew RA, Geraedts JP | title = Non-disclosure preimplantation genetic diagnosis for Huntington's disease: practical and ethical dilemmas | journal = Prenatal Diagnosis | volume = 18 | issue = 13 | pages = 1422–6 | date = December 1998 | pmid = 9949442 | doi = 10.1002/(SICI)1097-0223(199812)18:13<1422::AID-PD499>3.0.CO;2-R| s2cid = 39977672 }}</ref> For example, prenatal testing raises the issue of selective abortion, a choice considered unacceptable by some.<ref name="pmid9949442"/> As it is a dominant disease, there are difficulties in situations in which a parent does not want to know his or her own diagnosis.  This would require parts of the process to be kept secret from the parent.<ref name="pmid9949442"/>

===Support organizations===

[[File:Woody Guthrie NYWTS.jpg|thumb|upright|The death of [[Woody Guthrie]] led to the foundation of the [[Huntington's Disease Society of America|Committee to Combat Huntington's Disease]]|alt=A black-and-white photograph taken indoors of Woody Guthrie wearing pinstripe trousers, a tartan shirt with the top button undone, and a cap. He sits playing a six-string acoustic guitar, which is supported on one knee, and he appears to be singing. 'This Machine Kills Fascists' is written in all capital letters on a rectangular sticker, which is fixed onto the guitar.]]

In 1968, after experiencing HD in his wife's family, Dr. Milton Wexler was inspired to start the [[Hereditary Disease Foundation]] (HDF), with the aim of curing genetic illnesses by coordinating and supporting research.<ref name="HDF-About Us"/> The foundation and Wexler's daughter, [[Nancy Wexler]], were key parts of the research team in Venezuela which discovered the HD gene.<ref name="HDF-About Us"/>

At roughly the same time as the HDF formed, [[Marjorie Guthrie]] helped to found the committee to Combat Huntington's Disease (now the [[Huntington's Disease Society of America]]), after her husband, folk singer-songwriter [[Woody Guthrie]] died from complications of HD.<ref name="HDSA12020"/>

Since then, support and research organizations have formed in many countries around the world and have helped to increase public awareness of HD. A number of these collaborate in umbrella organizations, like the International Huntington Association and the European HD network.<ref>{{cite web |url=http://www.huntington-assoc.com/ |title=The International Huntington Association |access-date=3 April 2009 |publisher=International Huntington Association |year=2013 |url-status=live |archive-url=https://web.archive.org/web/20090418154858/http://www.huntington-assoc.com/ |archive-date=18 April 2009}}</ref> Many support organizations hold an annual HD awareness event, some of which have been endorsed by their respective governments. For example, 6 June is designated "National Huntington's Disease Awareness Day" by the [[United States Senate|US Senate]].<ref>{{cite web|url=https://www.congress.gov/bill/110th-congress/senate-resolution/531|title=US Senate s. resolution 531|access-date=10 August 2008|work=S. Res. 531|publisher=US Senate|date=6 April 2008|url-status=live|archive-url=https://web.archive.org/web/20151117063126/https://www.congress.gov/bill/110th-congress/senate-resolution/531|archive-date=17 November 2015}}</ref> Many organizations exist to support and inform those affected by HD, including the [[Huntington's Disease Association]] in the UK. The largest funder of research is provided by the [[CHDI Foundation|Cure Huntington's Disease Initiative Foundation]] (CHDI).<ref name=chdi-nature-moneytree>{{cite journal| vauthors = Odling-Smee L|title=Biomedical philanthropy: The money tree|journal=Nature|date=17 May 2007|volume=447|issue=7142|page=251|doi=10.1038/447251a|bibcode=2007Natur.447..251.|s2cid=4357517|doi-access=free}}</ref>