Improving informed consent for genetic testing through a digital approach

Infor­ma­tion about genet­ic test­ing is com­plex and can be over­whelm­ing for patients. We are pilot­ing the use of a dig­i­tal con­sent process and a sup­port­ing ani­mat­ed infor­ma­tion­al video to pro­vide patients and their fam­i­lies more time and infor­ma­tion to con­sid­er the ben­e­fits and impli­ca­tions of genet­ic test­ing and to allow for more informed consent. 

Our Statewide Clin­i­cal Genomics Net­work Lead, Pro­fes­sor Chris Bar­nett, has been meet­ing with key stake­hold­ers in genomics and oth­er health areas to share our inter­im learn­ings and results and to dis­cuss poten­tial oppor­tu­ni­ties for dig­i­tal con­sent to be used more broadly. 

To sup­port the online host­ing of the video and dig­i­tal con­sent process, an online patient path­way has been devel­oped. The path­way pro­vides the added ben­e­fit of allow­ing patients to pro­vide infor­ma­tion about their fam­i­ly his­to­ry and oth­er health infor­ma­tion dig­i­tal­ly and remote­ly through any inter­net enabled device such as a mobile phone, com­put­er, or tablet. The sys­tem also pro­vides reminders about upcom­ing appoint­ments and pro­vides plain lan­guage prac­ti­cal direc­tions to the loca­tion of their clin­ic appoint­ment. By using the path­way to pro­vide and obtain infor­ma­tion, and a dig­i­tal con­sent through an elec­tron­ic sig­na­ture pri­or, the con­sul­ta­tion can focus more on the patient’s health needs. 

More recent­ly, Pro­fes­sor Bar­nett pre­sent­ed about the dig­i­tal con­sent pilot at the Women’s and Children’s Health Network’s Improve­ment Show­case in South Aus­tralia and to key stake­hold­ers of the Mel­bourne Genomics Health Alliance. 

Browse our web­site for more infor­ma­tion on cur­rent and upcom­ing projects of the Statewide Clin­i­cal Genomics Network.