Incorporating the Contextual Assessment Approach to regimens used in genetic family studies.
OBJECTIVE
To develop a procedure that enhances enrollment and addresses ethical issues associated with participation in genetic family studies.


METHODS
The Contextual Assessment Approach (CAA) was standardized to the recruitment procedures in the Family Investigation of Nephropathy and Diabetes (FIND) study at the University of Texas Health Science Center at San Antonio. Structured interviews with the CAA questionnaire (CAA-Q) were conducted with 50 low-income Mexican-American probands. The CAA allows systematic interpretation of health beliefs, family dynamics, and attitudes regarding participation in FIND. Data analyses included qualitative and quantitative methods.


RESULTS
CAA analyses of probands' perspectives regarding relatives' enrollment in FIND facilitated recruiting 34 probands from whom 30 families were enrolled (family enrollment rate: 88%). CAA reduced recruitment efforts by 32% and avoided exerting undue pressure on unwilling participants to ensure voluntary participation. Remarkably, 76% of the subjects were unaware of any risk associated with participation in genetic family studies.


CONCLUSIONS
Administering the CAA-Q before enrolling subjects in FIND increased our enrollment rate by targeting efforts toward the willing subjects and addressing ethical issues associated with their participation.
Arar
Nedal H
NH
Division of Nephrology/Department of Medicine, University of Texas Health Science Center at San Antonio 78229-3900, USA.
Plaetke
Rosemarie
R
Arar
Mazen Y
MY
Kasinath
Balakuntalam S
BS
Abboud
Hanna E
HE
D032984:Ethics, Research; D005192:Family Health; D005260:Female; D030342:Genetic Diseases, Inborn; D006801:Humans; D008297:Male; D008875:Middle Aged; D010375:Pedigree; D012107:Research Design; D035842:Research Subjects; D011795:Surveys and Questionnaires