Literature DB >> 8411027

Perception of predictive testing for Huntington's disease by young women: preferring uncertainty to certainty?

M Decruyenaere1, G Evers-Kiebooms, H Van den Berghe.   

Abstract

Opinions on the implications of predictive testing for Huntington's disease were evaluated in a group of 169 women (aged 21-35 years) with interest in psychosocial issues, but with no special pre-existing knowledge or training in genetics. Predictive testing for Huntington's disease (HD) is considered to be a test case for predictive testing for other late onset diseases, monogenic as well as multifactorial disorders. In the hypothetical situation of having a 50% risk for developing HD, about half of the group expressed interest in a predictive test. As to the question of giving results of predictive tests to third parties, the group would be very reluctant to inform the employer or the insurer, but not their own family. Prenatal testing for late onset diseases was considered acceptable by half of the women; only one quarter of the total group would terminate a pregnancy of a child that might develop a late onset disease. The assessment of attitudes towards predictive testing was carried out within the context of a global evaluation of perceived advantages and disadvantages of genetic counselling. The attitudes towards predictive testing were systematically associated with perceiving 'having more certainty about the future' as an advantage of genetic counselling and with rejecting 'knowing everything in advance' as a disadvantage.

Entities:  

Mesh:

Year:  1993        PMID: 8411027      PMCID: PMC1016454          DOI: 10.1136/jmg.30.7.557

Source DB:  PubMed          Journal:  J Med Genet        ISSN: 0022-2593            Impact factor:   6.318


  12 in total

1.  The incidence of different cystic fibrosis mutations in the Scottish population: effects on prenatal diagnosis and genetic counselling.

Authors:  A E Shrimpton; I McIntosh; D J Brock
Journal:  J Med Genet       Date:  1991-05       Impact factor: 6.318

2.  Presidential Address-1976. Social support as a moderator of life stress.

Authors:  S Cobb
Journal:  Psychosom Med       Date:  1976 Sep-Oct       Impact factor: 4.312

3.  Population screening for cystic fibrosis.

Authors:  D Brock
Journal:  Am J Hum Genet       Date:  1990-07       Impact factor: 11.025

4.  Evaluation of a practice information leaflet.

Authors:  R S Bhopal; W H Gilmour; C W Fallon; J S Bhopal; I Hamilton
Journal:  Fam Pract       Date:  1990-06       Impact factor: 2.267

5.  Practices and policies in the initiation of breastfeeding.

Authors:  M J Houston; P A Field
Journal:  J Obstet Gynecol Neonatal Nurs       Date:  1988 Nov-Dec

6.  Patient attitudes to body computed tomography: use of an information leaflet.

Authors:  C R Merrill; A M Knox
Journal:  Clin Radiol       Date:  1986-11       Impact factor: 2.350

7.  The cystic fibrosis gene: medical and social implications for heterozygote detection.

Authors:  B S Wilfond; N Fost
Journal:  JAMA       Date:  1990 May 23-30       Impact factor: 56.272

8.  What participants understand about a maternal serum alpha-fetoprotein screening program.

Authors:  R R Faden; A J Chwalow; E Orel-Crosby; N A Holtzman; G A Chase; C O Leonard
Journal:  Am J Public Health       Date:  1985-12       Impact factor: 9.308

9.  How effective are your patient education materials? Guidelines for developing and evaluating written educational materials.

Authors:  P Farrell-Miller; P Gentry
Journal:  Diabetes Educ       Date:  1989 Sep-Oct       Impact factor: 2.140

10.  Knowledge about and attitudes toward genetic screening among high-school students: the Tay-Sachs experience.

Authors:  C L Clow; C R Scriver
Journal:  Pediatrics       Date:  1977-01       Impact factor: 7.124

View more
  13 in total

Review 1.  Research issues in genetic testing of adolescents for obesity.

Authors:  Mary E Segal; Pamela Sankar; Danielle R Reed
Journal:  Nutr Rev       Date:  2004-08       Impact factor: 7.110

2.  To test or not to test? Moderators of the relationship between risk perceptions and interest in predictive genetic testing.

Authors:  Shoshana Shiloh; Shiri Ilan
Journal:  J Behav Med       Date:  2005-09-30

3.  The perceived advantages and disadvantages of presymptomatic testing for Machado-Joseph disease: development of a new self-response inventory.

Authors:  Luísa Rolim; José A Zagalo-Cardoso; Constança Paúl; Jorge Sequeiros; Manuela Fleming
Journal:  J Genet Couns       Date:  2006-09-27       Impact factor: 2.537

4.  Death anxiety and symbolic immortality in relatives at risk for familial amyloid polyneuropathy type I (FAP I, ATTR V30M).

Authors:  Paula I Santos; Eurico Figueiredo; Inês Gomes; Jorge Sequeiros
Journal:  J Genet Couns       Date:  2010-08-03       Impact factor: 2.537

5.  Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.

Authors:  Jesús Rivera-Navarro; Esther Cubo; Natividad Mariscal
Journal:  J Genet Couns       Date:  2015-04-30       Impact factor: 2.537

6.  Attitudes towards bipolar disorder and predictive genetic testing among patients and providers.

Authors:  L B Smith; B Sapers; V I Reus; N B Freimer
Journal:  J Med Genet       Date:  1996-07       Impact factor: 6.318

Review 7.  Patient perspectives of medical confidentiality: a review of the literature.

Authors:  Pamela Sankar; Susan Mora; Jon F Merz; Nora L Jones
Journal:  J Gen Intern Med       Date:  2003-08       Impact factor: 5.128

8.  "To perpetuate blindness!": attitudes of UK patients with inherited retinal disease towards genetic testing.

Authors:  Barbara Potrata; Martin McKibbin; Jennifer Nw Lim; Jenny Hewison
Journal:  J Community Genet       Date:  2013-12-24

9.  "Nothing is absolute in life": understanding uncertainty in the context of psychiatric genetic counseling from the perspective of those with serious mental illness.

Authors:  Catriona Hippman; Zoe Lohn; Andrea Ringrose; Angela Inglis; Joanna Cheek; Jehannine C Austin
Journal:  J Genet Couns       Date:  2013-04-21       Impact factor: 2.537

10.  The ethics of type 1 diabetes prediction and prevention research.

Authors:  Lainie Friedman Ross
Journal:  Theor Med Bioeth       Date:  2003
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.