Ethical, legal, and social dimensions of epilepsy genetics.
OBJECTIVE
Emerging genetic information and the availability of genetic testing has the potential to increase understanding of the disease and improve clinical management of some types of epilepsy. However, genetic testing is also likely to raise significant ethical, legal, and social issues for people with epilepsy, their family members, and their health care providers. We review the genetic and social dimensions of epilepsy relevant to understanding the complex questions raised by epilepsy genetics.


METHODS
We reviewed two literatures: (a) research on the genetics of epilepsy, and (b) social science research on the social experience and social consequences of epilepsy. For each, we note key empiric findings and discuss their implications with regard to the consequences of emerging genetic information about epilepsy. We also briefly review available principles and guidelines from professional and advocacy groups that might help to direct efforts to ascertain and address the ethical, legal, and social dimensions of genetic testing for epilepsy.


RESULTS
Genetic information about epilepsy may pose significant challenges for people with epilepsy and their family members. Although some general resources are available for navigating this complex new terrain, no guidelines specific to epilepsy have yet been developed to assist people with epilepsy, their family members, or their health care providers.


CONCLUSIONS
Research is needed on the ethical, legal, and social concerns raised by genetic research on epilepsy and the advent of genetic testing. This research should include the perspectives of people with epilepsy and their family members, as well as those of health care professionals, policymakers, and bioethicists.
Shostak
Sara
S
Department of Sociology, Brandeis University, Waltham, Massachusetts 02454-9110, USA. sshostak@brandeis.edu
Ottman
Ruth
R
D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D004827:Epilepsy / Q000453:epidemiology / Q000235:genetics* / Q000523:psychology*; D004989:Ethics; D005192:Family Health; D020022:Genetic Predisposition to Disease / Q000235:genetics / Q000523:psychology; D005820:Genetic Testing / Q000941:ethics / Q000331:legislation & jurisprudence* / Q000523:psychology*; D017408:Guidelines as Topic; D006282:Health Personnel / Q000941:ethics / Q000523:psychology / Q000592:standards; D006291:Health Policy; D006801:Humans; D007398:Interpersonal Relations; D012917:Social Adjustment; D012942:Social Sciences; D013240:Stereotyping