Sharing genetic test results with family members: developing an online behaviour change intervention

Ballard, Lisa (2019) Sharing genetic test results with family members: developing an online behaviour change intervention. In Behaviour Change for Health: Digital & Beyond Conference (London, England).

Abstract

Rationale: Genetic testing can have implications for individuals as well as their relatives. Clinical Genetic practice encourages patients to communicate relevant information to at-risk relatives. Though patients generally understand the importance of sharing information with relatives, especially those with risks of preventable and treatable diseases, many relatives often do not receive such information in a timely fashion. There are many reasons for not sharing this information (e.g. guilt, feeling responsible, family dynamics, misinformation, burden of diagnosis), which results in relatives who remain unaware of their potential risks. To date there have been several interventions designed to aid family communication of genetic results, although most have proven ineffective and have limited theoretical underpinning. Interventions to make it clear for patients whom to inform, what information to pass on, and how to inform are needed.

Aims: To explore participants’ experiences regarding sharing genetic health information with family members and views on a local electronic health record and a genetic test sharing web application. This data is being used to develop an online behaviour change intervention.

Methodology: Twenty-seven participants (19 women) who underwent whole genome sequencing in the 100,000 Genomes Project were interviewed.

Analysis: Data from structured interviews was categorised using NVivo.

Results: Participants were positive about using a personalised electronic health record and with their data being held in an electronic form, but thought the web app was a ‘cold and robotic’ way of sharing results with relatives. Most participants reported being happy to receive their results in an electronic health record rather than a letter through the post, with some participants reporting wanting a person to contact or follow-up appointment. In regards to familial communication, many participants had not told all or any of their relatives they were having their whole genome analysed and many said they would like help to communicate their results to relatives.

Conclusions: Participants who have whole genome sequencing find it acceptable to receive results electronically and to use an electronic health record. Though they anticipate needing support to share results with relatives. We plan to develop an intervention to make it more likely results are shared. Importantly, relatives may not be aware of, or be prepared to, receive these results.

This record has no associated files available for download.

Contributors

Author: Lisa Ballard

Download statistics