Attitudes of genetic counselors towards genetic susceptibility testing in children.
Genetic susceptibility research and testing is leading to an era of personalized medicine. Genetic counselors act as liaisons between the medical genetics community and the public. Understanding the opinions of genetic counselors will be important in developing testing guidelines. Attitudes towards genetic susceptibility testing in children were assessed for 216 NSGC members. Genetic counselors were likely to support testing if the results would determine: disease progression or prognosis, likelihood of survival after a specific treatment, or risk for an adverse drug reaction. Genetic counselors were unlikely to support testing to determine susceptibility to later disease development or in the absence of available intervention. There was a strong positive correlation between attitudes associated with desire to test their own child, if at risk and their support for genetic testing in any child at risk. Respondents strongly favored parent/guardian and child's rights over doctor or insurance rights. They indicated assent should be obtained prior to testing, when appropriate, and that a copy of results should be kept in a permanent medical record. Respondents expressed concerns about insurance discrimination, testing in the absence of medical necessity, and taking away a child's autonomy.
Mackoff
Rishona L
RL
Department of Biology, California State University, Northridge, Northridge, CA, USA. rishonamackoff@gmail.com
Iverson
Ellen F
EF
Kiekel
Preston
P
Dorey
Frederick
F
Upperman
Jeffrey S
JS
Metzenberg
Aida B
AB
D022126:Access to Information; D000328:Adult; D001291:Attitude of Health Personnel; D002648:Child; D003625:Data Collection; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D000078329:Workforce
Environ Health Perspect. 2006 Oct;114(10):1622-5
17035154
Am J Med Genet A. 2003 Feb 1;116A(4):315-23
12522783
Clin Genet. 2003 Oct;64(4):355-60
12974741
Am J Med Genet B Neuropsychiatr Genet. 2008 Apr 5;147(3):375-84
18023043
Am J Med Genet A. 2006 Nov 1;140(21):2312-9
17036312
Pediatrics. 2005 Oct;116(4):e476-84
16199673
J Biosci. 2006 Mar;31(1):167-76
16595885
Community Genet. 2005;8(2):94-102
15925885
Am J Med Genet A. 2003 Jul 15;120A(2):209-14
12833401
Am J Med Genet A. 2006 Nov 1;140(21):2305-11
17022079
Genet Couns. 2005;16(4):341-52
16440876
Genet Med. 2005 Sep;7(7):501-8
16170242
Crit Care Med. 2002 May;30(5 Suppl):S341-8
12004257
Hum Immunol. 2007 Sep;68(9):748-55
17869649
BMC Health Serv Res. 2007 Jun 12;7:82
17565670
Minerva Anestesiol. 2006 May;72(5):255-67
16675935
Crit Care. 2004 Jun;8(3):180-9
15153236
Clin Perinatol. 2004 Mar;31(1):53-67
15183656