The experiences of research participants offered genetic test results as a result of taking part in a population based ovarian cancer research study?

Background Although the issue remains controversial, it is generally accepted that researchers have some responsibility to notify participants of information discovered during research that has the potential to significantly affect person’s health or prevent significant harm. Whilst the issue of recontact has been broadly discussed by ethicists, researchers and clinicians, few studies have reported on participant’s experiences of the process. The Australian Ovarian Cancer Study (AOCS), a population based study, recruited women with invasive ovarian cancer between 2002 and 2006. BRCA1 or BRCA2 mutation testing has been undertaken and women in whom a mutation has been identified, or their next of kin in the case where the women is deceased, have been notified in writing (notification letter) by the researchers about the finding of a mutation and the availability of obtaining these results through a family cancer clinic (FCC). The AOCS Psychosocial project has interviewed individuals who received notification letters.