Hereditary melanoma and predictive genetic testing: why not?
BACKGROUND
Since p16-Leiden presymptomatic testing for hereditary melanoma has become available in the Netherlands, the benefits and risks of offering such testing are evaluated. The current paper investigated why the non-participants were reluctant to participate in genetic testing.


METHODS
Sixty six eligible individuals, who were knowledgeable about the test but had not participated in genetic testing by January 2003, completed a self-report questionnaire assessing motivation, anxiety, family dynamics, risk knowledge and causal attributions.


RESULTS
Non-participants reported anxiety levels below clinical significance. A principal components analysis on reasons for non-participation distinguished two underlying motives: emotional and rational motivation. Rational motivation for non-participation was associated with more accurate risk knowledge, the inclination to preselect mutation carriers within the family and lower scores on anxiety. Emotional motivation for non-participation was associated with disease misperceptions, hesitation to communicate unfavourable test results within the family and higher scores on anxiety.


CONCLUSIONS
Rational and emotional motivation for non-participation in the genetic test for hereditary melanoma was found. Emotionally motivated individuals may be reluctant to disseminate genetic risk information. Rationally motivated individuals were better informed than emotionally motivated individuals. It is suggested that a leaflet is added to the invitation letter to enhance informed decision-making about genetic testing.
Riedijk
S R
SR
Department of Clinical Genetics, Erasmus Medical Centre, The Netherlands. s.riedijk@erasmusmc.nl
de Snoo
F A
FA
van Dijk
S
S
Bergman
W
W
van Haeringen
A
A
Silberg
S
S
van Elderen
T M T
TM
Tibben
A
A
D000328:Adult; D001007:Anxiety / Q000175:diagnosis / Q000523:psychology; D003142:Communication; D003863:Depression / Q000175:diagnosis / Q000523:psychology; D005195:Family Relations; D005260:Female; D019398:Genes, BRCA1; D019942:Genes, p16; D005817:Genetic Counseling / Q000523:psychology; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007389:Internal-External Control; D008297:Male; D008545:Melanoma / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology*; D008875:Middle Aged; D009042:Motivation; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D010555:Personality Inventory; D011237:Predictive Value of Tests; D018570:Risk Assessment; D012878:Skin Neoplasms / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology*; D011795:Surveys and Questionnaires