ETHICAL ISSUES IN GENETIC RESEARCH - DISCLOSURE AND INFORMED CONSENT

As research to correlate genetic status with predisposition to disease has accelerated, so has the concern that participation in such studie s creates the risk of genetic discrimination and emotional distress. T here is a need to broaden disclosure during the consent process to ens ure that potential subjects understand these risks and other issues an d to address them in the consent form. We describe the broad approach that we have taken in regard to disclosure and consent in gene mapping studies.