Disclosure of genetic information to relatives in Israel: between privacy and familial responsibility

This article presents findings from a large quantitative-based study conducted in Israel in eight genetic clinics across the country regarding patients’ attitudes to disclosure of genetic information to relatives. The study examines the similarities and differences between the two largest groups who visit genetic clinics in Israel – for prenatal screening and for carrier testing for cancer. It was found that the overall rate of intention to inform relatives was high. It was also found that respondents in the cancer group expressed a more familial-based approach than those in the prenatal screening group. In addition, a relatively high rate of non-disclosure was found in the prenatal screening group as compared to the cancer group. These findings are significant in light of a widespread wish in Israeli society to give birth to a child without a disease or disability. A reconsideration of current practices and guidelines in this area is therefore required.