title: Genetic risk perception and reproductive decision making among people with epilepsy.
abstract: We investigated estimated offspring risk among people with epilepsy and factors important in the family-planning process. Data were collected for 88 participants using a questionnaire assessing perceived risk of offspring to develop epilepsy, importance of factors in the reproductive decision-making process, decision to have fewer children, and association between risk perception and family planning decisions. Thirty-four percent of participants had fewer children because of their epilepsy. Concerns about the ability to care for a child (p < 0.0001) and passing epilepsy onto a child (p = 0.003) were associated with the decision to have fewer children. The mean estimated risk of offspring to develop epilepsy was 26%, a 4-fold increase over estimated population risks. Genetic counseling may be beneficial for people with epilepsy, given the considerable overestimation of offspring risk.
authors.affiliation: Genetic Counseling Program, Arcadia University, Glenside, Pennsylvania, USA. k.helbig@iem.uni-kiel.de
authors.forename: Katherine L
authors.initials: KL
authors.lastname: Helbig
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Bernhardt
authors.forename: Laura J
authors.initials: LJ
authors.lastname: Conway
authors.forename: Kathleen D
authors.initials: KD
authors.lastname: Valverde
authors.forename: Ingo
authors.initials: I
authors.lastname: Helbig
authors.forename: Michael R
authors.initials: MR
authors.lastname: Sperling
mesh_terms: D000328:Adult; D001294:Attitude to Health; D016241:Child of Impaired Parents / Q000706:statistics & numerical data; D003657:Decision Making; D004827:Epilepsy / Q000453:epidemiology / Q000235:genetics* / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease / Q000523:psychology; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D011247:Pregnancy; D011336:Probability; D043762:Reproductive Behavior / Q000523:psychology*; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires