{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,20]],"date-time":"2025-10-20T17:52:29Z","timestamp":1760982749887,"version":"build-2065373602"},"reference-count":18,"publisher":"BMJ","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Med Genet"],"published-print":{"date-parts":[[1983,6]]},"abstract":"<jats:p>Ninety-two patients suffering from Huntington's chorea (HC) and their spouses, and 91 subjects with an affected parent and their spouses, living in three counties of industrial South Wales, have been studied regarding their knowledge of their inheritance of the disorder. Particular attention was paid to its influence on their attitudes towards child-bearing, telling their children of the risks, and predictive tests. Only 12% of the patients were known to have received professional advice before completing their families, in contrast to 68% of the sample at risk. It is estimated that 82% of the patients and 60% of the subjects at risk had, or might have, restricted their family size had they known in time. The majority found genetic counselling helpful, but did not necessarily wish to alter their child-bearing plans in consequence. It was clear that information provided by the family alone was usually inadequate and that this applied to the present generation at risk as well as to previous generations. It was concluded that the burden of telling children the risks is too great for most parents and that professional help is needed. The long term impact of genetic counselling on the incidence of the disease is impossible to assess without continued monitoring, but preliminary results are encouraging. Attitudes towards a predictive test reflected much conflict: although 56% overall wished to take one, only 40% of those who were parents wished to know if they were at risk of passing the gene on to their children. Few subjects reported severe social stress on learning of their genetic risks, but about one in four reported experiencing significant anxiety.<\/jats:p>","DOI":"10.1136\/jmg.20.3.179","type":"journal-article","created":{"date-parts":[[2008,11,10]],"date-time":"2008-11-10T14:52:06Z","timestamp":1226328726000},"page":"179-188","source":"Crossref","is-referenced-by-count":68,"title":["Attitudes of subjects at risk and their relatives towards genetic counselling in Huntington's chorea."],"prefix":"10.1136","volume":"20","author":[{"given":"A","family":"Tyler","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"P S","family":"Harper","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[1983,6,1]]},"reference":[{"key":"ref_1","first-page":"411","article-title":"Decline in the predicted incidence of Huntington's chorea associated with systematic genetic counselling and family support","volume":"ii:","author":"Harper, P.S.; Tyler, A.; Smith, S.; Jones, P.; Newcombe, R.G.; McBroom, V.","year":"1981","unstructured":"Harper PS, Tyler A, Smith S, Jones P, Newcombe RG, McBroom V. Decline in the predicted incidence of Huntington's chorea associated with systematic genetic counselling and family support. Lancet 1981;ii:411-3.","journal-title":"Lancet"},{"key":"ref_2","article-title":"Huntington's Disease and its Consequences. Vol 1","author":"Department of Health, Education and Welfare,","year":"1977","unstructured":"Work Group Report of the Commission for the Control of Huntington's Disease and its Consequences. Vol 1. Bethesda, Maryland: US Department of Health, Education and Welfare, 1977."},{"key":"ref_3","article-title":"Behavioral aspects of Huntington's chorea","volume-title":"Advances in neurology. Vol 1","author":"Pearson, J.S.","year":"1973","unstructured":"Pearson JS. Behavioral aspects of Huntington's chorea. In: Barbeau A, et al, eds. Advances in neurology. Vol 1. New York: Raven Press, 1973."},{"key":"ref_4","article-title":"Huntington's chorea. A demographic genetic and clinical study","author":"Stevens, D.L.","year":"1977","unstructured":"Stevens DL. Huntington's chorea. A demographic genetic and clinical study. MD thesis, Universityof London, 1977."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1136\/jmg.12.3.217","article-title":"Attitudes of patients and their relatives to Huntington's disease","volume":"12","author":"Stern, R.; Eldridge, R.","year":"1975","unstructured":"Stern R, Eldridge R. Attitudes of patients and their relatives to Huntington's disease. J Med Genet 1975;12: 217-23.","journal-title":"J Med Genet"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"327","DOI":"10.1017\/S0033291700030841","article-title":"Attitudes of families to some aspects of Huntington's chorea","volume":"9","author":"Barette, J.; Marsden, C.D.","year":"1979","unstructured":"Barette J, Marsden CD. Attitudes of families to some aspects of Huntington's chorea. J Psychol Med 1979;9: 327-36.","journal-title":"J Psychol Med"},{"key":"ref_7","first-page":"346","article-title":"Huntington's chorea. The basis for long-term prevention","volume":"ii:","author":"Harper, P.S.; Walker, D.A.; Tyler, A.; Newcombe, R.G.; Davies, K.","year":"1979","unstructured":"Harper PS, Walker DA, Tyler A, Newcombe RG, Davies K. Huntington's chorea. The basis for long-term prevention. Lancet 1979;ii:346-9.","journal-title":"Lancet"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"213","DOI":"10.1111\/j.1399-0004.1981.tb00701.x","article-title":"Huntington's chorea in South Wales. A genetic and epidemiological study","volume":"19","author":"Walker, D.A.; Harper, P.S.; Wells, C.E.C.; Tyler, A.; Davies, K.; Newcombe, R.G.","year":"1981","unstructured":"Walker DA, Harper PS, Wells CEC, Tyler A, Davies K, Newcombe RG. Huntington's chorea in South Wales. A genetic and epidemiological study. Clin Genet 1981;19: 213-21.","journal-title":"Clin Genet"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"379","DOI":"10.1017\/S0021932000014267","article-title":"The socioeconomic burden of Huntington's chorea in South Wales","volume":"14","author":"Tyler, A.; Harper, P.S.; Walker, D.A.; Davies, K.; Newcombe, R.G.","year":"1982","unstructured":"Tyler A, Harper PS, Walker DA, Davies K, Newcombe RG. The socioeconomic burden of Huntington's chorea in South Wales. JBiosoc Sci 1982;14:379-89.","journal-title":"JBiosoc Sci"},{"key":"ref_10","first-page":"93","article-title":"Social aspects of Huntington's chorea","volume":"114","author":"Hans, M.B.; Gilmore, T.H.","year":"1968","unstructured":"Hans MB, Gilmore TH. Social aspects of Huntington's chorea. BrJPsychiatry 1968;114:93-8.","journal-title":"BrJPsychiatry"},{"key":"ref_11","article-title":"Huntington's chorea: a genetic problem in East Anglia","author":"Caro, A.J.","year":"1977","unstructured":"Caro AJ. Huntington's chorea: a genetic problem in East Anglia. PhD thesis, University of East Anglia, 1977."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"216","DOI":"10.1542\/peds.48.2.216","article-title":"Complexities of parental understanding of phenylketonuria","volume":"48","author":"Siblinga, M.S.; Friedman, C.J.","year":"1971","unstructured":"Siblinga MS, Friedman CJ. Complexities of parental understanding of phenylketonuria. Pediatrics 1971;48: 216-24.","journal-title":"Pediatrics"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"433","DOI":"10.1056\/NEJM197208312870904","article-title":"Genetic counselling. A consumer's view","volume":"287","author":"Leonard, C.O.; Chase, G.A.; Childs, B.","year":"1972","unstructured":"Leonard CO, Chase GA, Childs B. Genetic counselling. A consumer's view. N Engl J Med 1972;287:433-9.","journal-title":"N Engl J Med"},{"key":"ref_14","doi-asserted-by":"crossref","DOI":"10.1016\/B978-0-12-405650-3.50018-2","article-title":"Genetic Russian roulette: the experience of being at risk for Huntington's disease","volume-title":"Genetic counselling. Psychological dimensions","author":"Wexler, N.S.","year":"1979","unstructured":"Wexler NS. Genetic Russian roulette: the experience of being at risk for Huntington's disease. In: Kessler S, ed. Genetic counselling. Psychological dimensions. New York: Academic Press, 1979."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1136\/jmg.18.1.31","article-title":"Objective knowledge about Huntington's disease and attitudes towards predictive tests of persons at risk","volume":"18","author":"Teltscher, B.; Polgar, S.","year":"1981","unstructured":"Teltscher B, Polgar S. Objective knowledge about Huntington's disease and attitudes towards predictive tests of persons at risk. 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