Genomic information and a person’s right not to know: A closer look at variations in hypothetical informational preferences in a German sample

Abstract

In clinical practice and in research, there is an ongoing debate on how to return incidental and secondary findings of genetic tests to patients and research participants. Previous investigations have found that most of the people most of the time are in favor of full disclosure of results. Yet, the option to reject disclosure, based on the so-called right not to know, can be valuable especially for some vulnerable subgroups of recipients. In the present study we investigated variations in informational preferences in the context of genetic testing in a large and diverse German sample. This survey examined health care professionals, patients, participants of genetic counseling sessions and members of the general population (N = 518). Survey participants were assessed regarding their openness to learning about findings under various hypothetical scenarios, as well as their attitudes about the doctor-patient-relationship in a disclosure situation and about informational transfer to third parties. While the majority of participants wanted to learn about their findings, the extent of support of disclosure varied with features of the hypothetical diagnostic scenarios (e.g., controllability of disease; abstract vs. concrete scenario description) and demographic characteristics of the subjects. For example, subjects with higher levels of education were more selective with regards to the kind of information they want to receive than those with lower levels of education. We discuss implications of these findings for the debate about the right not to know and for the clinical practice of informed consent procedures.

Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression

“…This last element deserves further and deeper investigations. Furthermore, our sample shows a high education level that in itself has often been associated with a major selectiveness regarding the type of "information" individuals wish to receive when participating in research (26).…”

A look into the future? Patients' and health care staff's perception and evaluation of genetic information and the right not to know

“…Interestingly, being concerned personally or as a relative with hereditary or other genetic disease did not significantly change how the questionnaire was answered. More detailed information concerning the subgroup analysis in the present survey was published in a separate analysis (Flatau et al, ).…”

“…Additionally, a number of questions in the survey were of hypothetical nature for the study participants. The present publication does not contain a detailed subgroup analysis of the study population, but more information is available on this issue in a recent publication from our research group (Flatau et al, ).…”

Attitudes toward the right to autonomous decision‐making in psychiatric genetic testing: Controversial and context‐dependent

“…The present study was performed using a German language questionnaire designed by the authors (see Supporting Information). This questionnaire was augmented by the inclusion of items from a survey our group conducted in 2003 (Illes, ); for details see analyses and presentation of results section below), and other investigations performed by our group and previous authors (Flatau et al, ). The questionnaire was designed for use in diverse research contexts (e.g., molecular genetic research or imaging research), and populations (e.g., psychiatric patients, relatives, psychiatrists, and members of the general public), and therefore covers a wide range of topics of relevance to psychiatric genetic research and psychiatric genetic testing.…”