Literature DB >> 20927575

Genetic counseling for early-onset familial Alzheimer disease in large Aboriginal kindred from a remote community in British Columbia: unique challenges and possible solutions.

Rachel Butler1, Emily Dwosh, B Lynn Beattie, Colleen Guimond, Sofia Lombera, Elana Brief, Judy Illes, A Dessa Sadovnick.   

Abstract

A novel, pathogenic presenilin 1 (PS1) mutation has recently been identified in a large Aboriginal kindred living in dispersed communities throughout British Columbia, Canada. Disseminating genetic information and ensuring that appropriate genetic counseling services are provided to all concerned relatives have posed several unique challenges. These challenges include knowledge exchange and continuity of care in a geographically remote and culturally distinct community. To our knowledge, this is the first time a specific genetic counseling approach has been needed for early-onset familial Alzheimer disease (EOFAD) in a North American Aboriginal community.

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Year:  2010        PMID: 20927575     DOI: 10.1007/s10897-010-9334-9

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  6 in total

1.  Views of First Nation elders on memory loss and memory care in later life.

Authors:  Wendy Hulko; Evelyn Camille; Elisabeth Antifeau; Mike Arnouse; Nicole Bachynski; Denise Taylor
Journal:  J Cross Cult Gerontol       Date:  2010-12

Review 2.  Genetic testing for hereditary cancer: challenges to ethical care in rural and remote communities.

Authors:  Lori D'Agincourt-Canning
Journal:  HEC Forum       Date:  2004-12

3.  A novel PS1 gene mutation in a large Aboriginal kindred.

Authors:  Rachel Butler; B Lynn Beattie; Umamon Puang Thong; Emily Dwosh; Colleen Guimond; Howard H Feldman; Ging-Yuek Robin Hsiung; Ekaterina Rogaeva; Peter St George-Hyslop; A Dessa Sadovnick
Journal:  Can J Neurol Sci       Date:  2010-05       Impact factor: 2.104

Review 4.  DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communities.

Authors:  Laura Arbour; Doris Cook
Journal:  Community Genet       Date:  2006

5.  Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease.

Authors:  G McKhann; D Drachman; M Folstein; R Katzman; D Price; E M Stadlan
Journal:  Neurology       Date:  1984-07       Impact factor: 9.910

6.  Predictive testing for Huntington's disease: protocol of the UK Huntington's Prediction Consortium.

Authors:  D Craufurd; A Tyler
Journal:  J Med Genet       Date:  1992-12       Impact factor: 6.318

  6 in total
  6 in total

Review 1.  A systematic review of factors that act as barriers to patient referral to genetic services.

Authors:  Türem Delikurt; Graham R Williamson; Violetta Anastasiadou; Heather Skirton
Journal:  Eur J Hum Genet       Date:  2014-09-10       Impact factor: 4.246

2.  An automated clinical mass spectrometric method for identification and quantification of variant and wild-type amyloid-β 1-40 and 1-42 peptides in CSF.

Authors:  Mari L DeMarco; Quyen Nguyen; Alice Fok; Ging-Yuek Robin Hsiung; J Grace van der Gugten
Journal:  Alzheimers Dement (Amst)       Date:  2020-06-30

Review 3.  Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review.

Authors:  Ashley Crook; Chris Jacobs; Toby Newton-John; Rosie O'Shea; Alison McEwen
Journal:  J Neurol       Date:  2021-03-01       Impact factor: 6.682

4.  Neuroethics, confidentiality, and a cultural imperative in early onset Alzheimer disease: a case study with a First Nation population.

Authors:  Shaun Stevenson; B Lynn Beattie; Richard Vedan; Emily Dwosh; Lindsey Bruce; Judy Illes
Journal:  Philos Ethics Humanit Med       Date:  2013-10-16       Impact factor: 2.464

5.  Converging approaches to understanding early onset familial Alzheimer disease: A First Nation study.

Authors:  Laura Y Cabrera; B Lynn Beattie; Emily Dwosh; Judy Illes
Journal:  SAGE Open Med       Date:  2015-12-15

6.  Identifying and Addressing Genetic Counseling Challenges among Indigenous People of Oaxaca-One Center's Experience with Two Immigrant Farmworker Families in the Central Valley of California.

Authors:  Joseph J Shen; Jason Carmichael; Leoncio Vásquez Santos
Journal:  J Genet Couns       Date:  2018-02-03       Impact factor: 2.537

  6 in total

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