Patients’ Attitudes Towards Disclosure of Genetic Test Results to Family Members: The Impact of Patients’ Sociodemographic Background and Counseling Experience

Abstract

Many factors predict the intention to disclose genetic information to relatives. The article examines the impact of patients' socio-demographic factors on their intention to disclose genetic testing results to their relatives. Data were collected in eight genetic clinics in Israel. Patients were requested to fill in a questionnaire after counseling. A convenience sample of 564 participants who visited these clinics was collected for a response rate of 85 %. Of them, 282 participants came for susceptibility testing for hereditary cancers (cancer group), and 282 for genetic screening tests (prenatal group). In the cancer group, being secular and having more years of education correlated positively with the intention to disclose test results to relatives. In the prenatal group, being married and female correlated positively with the intention to disclose. In the cancer group, being religious and with less years of education correlated positively with the view that the clinician should deliver the results to the family. In the prenatal group, being male and unmarried correlated positively with this belief. In both groups, being of young age correlated with the perception that genetic information is private. Varied sociodemographic factors affect the intention to inform family members. Thus, knowing the social background of patients will shed light on people's attitudes to genetic information and will help clinicians provide effective counseling in discussions with patients about the implications of test results for relatives.

‘Is this knowledge mine and nobody else's? I don't feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine: Table 1

“… 16 Religion, age, gender, and marital status have too been shown to impact on views about sharing genetic test results. 28 We additionally call for further research about the practicalities of sharing information.…”

Responsibility in dealing with genetic risk information

“…The increasing availability of genetic information, however, does create a sense of commitment to family members to share this information (Gilbar et al 2016;Whyte et al 2016). It becomes evident that relational autonomy is formulated beyond close social bonds and shifts towards professionals when relevant for the decision.…”

“…Ethical principles such as autonomy, confidentiality, or non-directivity are touched upon in this context. It seems to be problematic for medical practitioners to assess when it is appropriate to warn relatives about hereditary risks (Gilbar et al 2016). Recently, there have been cases in which physicians were sued for withholding such information.…”

Privacy and utility of genetic testing in families with hereditary cancer syndromes living in three countries: the international cascade genetic screening experience

“…Data from n = 287 Swiss CASCADE index cases (had genetic testing) show that they prefer to maintain an active role in disseminating genetic information to relatives ( Sarki et al, 2022b ). Similarly, data from previous studies among 282 Israeli women who requested HBOC-related genetic evaluation showed that they embraced the responsibility to inform relatives while they objected to healthcare providers contacting relatives without their consent ( Gilbar and Barnoy, 2012 ; Gilbar et al, 2016 ). Data from the n = 91 Korean K-CASCADE index cases also indicated a preference for patient-mediated communication of test results.…”