Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research

Abstract

Increasingly more psychiatric research studies use whole genome sequencing or whole exome sequencing. Consequently, researchers face difficult questions, such as which genomic findings to return to research participants and how. This study aims to gain more knowledge on the attitudes among potential research participants and health professionals toward receiving pertinent and incidental findings. A cross‐sectional online survey was developed to investigate the attitudes among research participants toward receiving genomic findings. A total of 2,637 stakeholders responded: 241 persons with mental disorders, 671 relatives, 1,623 blood donors, 74 psychiatrists, and 28 clinical geneticists. Stakeholders wanted both pertinent findings (95%) and incidental findings (91%) to be made available for research participants. The majority (77%) stated that researchers should not actively search for incidental findings. Persons with mental disorders and relatives were generally more positive about receiving any kind of findings than clinical geneticists and psychiatrists. Compared with blood donors, persons with mental disorders reported to be more positive about receiving raw genomic data and information that is not of serious health importance. Psychiatrists and clinical geneticists were less positive about receiving genomic findings compared with blood donors. The attitudes toward receiving findings were very positive. Stakeholders were willing to refrain from receiving incidental information if it could compromise the research. Our results suggest that research participants consider themselves as altruistic participants. This study offers valuable insight, which may inform future programs aiming to develop new strategies to target issues relating to the return of findings in genomic research.

Psychiatric genetics researchers' views on offering return of results to individual participants

“…These findings support other studies of stakeholder's perspectives about RoR in genetics research generally (Kleiderman et al, ; Klitzman et al, ; Middleton et al, ). According to studies examining attitudes toward RoR in psychiatric genetics in particular (Sundby et al, ), stakeholders favored the return of both pertinent and incidental findings to individual research participants, mirroring opinions of our researcher respondents. As has been reported for researchers in other fields of genetics, psychiatry researchers in our study pointed out an additional benefit is that RoR incentivizes participation in studies that require very large sample sizes (Klitzman et al, ).…”

“…Likewise, Sundby et al () found that psychiatric genetics stakeholders (i.e., patients with mental health disorders, their relatives, and clinicians) favor the return of both pertinent (95%) and incidental (91%) findings to research participants (Sundby et al, ), including to parents of child participants and to the children themselves when of legal age (Sundby et al, ). In another study, 97% of patients with a psychiatric disorder and unaffected relatives reported that they would like to be informed of any clinically relevant genomic findings generated in a study (Bui, Anderson, Kassem, & McMahon, ).…”

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

“…While previous literature has consistently reported very high levels of approval for psychiatric genetic research and testing, it has also been shown that individuals have concerns about autonomy, privacy, discrimination, and coping emotionally with test results (e.g., Austin, Smith, & Honer, ; Bui, Anderson, Kassem, & McMahon, ; Coors, ; DeLisi & Bertisch, ; Illes, ; Jones, Scourfield, McCandless, & Craddock, ; Klitzman et al, ; Lawrence & Appelbaum, ; Meiser et al, ; Meiser, Mitchell, McGirr, Van Herten, & Schofield, ; Middleton et al, ; Roberts, Tsungmey, Kim, & Hantke, ; Salm et al, ; Smith, Sapers, Reus, & Freimer, ; Sundby et al, ; Trippitelli, Jamison, Folstein, Bartko, & DePaulo, ; Wilde, Meiser, Mitchell, Hadzi‐Pavlovic, & Schofield, ; Wilhelm et al, ; Yu, Crouch, Jamal, Bamshad, & Tabor, ). It has also been reported that further information about potential positive and negative implications decreases interest in being tested (Illes et al, ; Wilde, Meiser, Mitchell, & Schofield, ).…”

“…It has also been reported that further information about potential positive and negative implications decreases interest in being tested (Illes et al, ; Wilde, Meiser, Mitchell, & Schofield, ). Genetics researchers are the most hesitant to endorse psychiatric genetic testing, followed by psychiatrists, the general population, and patients/relatives (DeLisi & Bertisch, ; Illes, ; Sundby et al, ), an observation which indicates that attitudes toward psychiatric genetic testing are dependent upon background or degree of expert knowledge. Each group may foresee problems and may have insights or perspectives which are not immediately apparent to other groups.…”

Genetic Research: The Role of Citizens, Public Health and International Stakeholders

“…possibility that may occur. It is easy to obtain, and can be of interest to third parties [2] such as family members, insurance companies and employers.Therefore, there is great interest in this information, especially since genetic predisposition has been clearly demonstrated for various diseases such as cardiovascular pathologies [3,4] diabetes [5], late onset Alzheimer [6], schizophrenia [7]…”