Support Seeking or Familial Obligation: An Investigation of Motives for Disclosing Genetic Test Results

ABSTRACT

Genetic test results reveal not only personal information about a person’s likelihood of certain medical conditions but also information about the person’s genetic relatives. Given the familial nature of genetic information, one’s obligation to protect family members may be a motive for disclosing genetic test results, but this claim has not been methodically tested. Existing models of disclosure decision making presume self-interested motives, such as seeking social support, instead of other-interested motives, like familial obligation. This study investigated young adults’ (N = 173) motives to share a genetic-based health condition, alpha-1 antitrypsin deficiency, after reading a hypothetical vignette. Results show that social support and familial obligation were both reported as motives for disclosure. In fact, some participants reported familial obligation as their primary motivator for disclosure. Finally, stronger familial obligation predicted increased likelihood of disclosing hypothetical genetic test results. Implications of these results were discussed in reference to theories of disclosure decision-making models and the practice of genetic disclosures.

ORCID

Rachel A. Smith

http://orcid.org/0000-0003-2407-7515

Additional information

Funding

We thank Amanda Applegate for her feedback on an earlier draft of the article. The project described was supported by the National Institute on Drug Abuse under award number P50DA010075-15, and the National Human Genome Research Institute under award number R21HG007111. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute on Drug Abuse, the National Human Genome Research Institute, or the National Institutes of Health.