Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research

An African American participant feared being put into a certain racially determined category because of genetic information which is much more present in that specific ethnic group.

“In a qualitative study, an African American participant explained this more precisely: this participant feared being put into a certain racially determined category because of genetic information which is much more present in that specific ethnic group [98].”

Among patients there is also a high readiness to participate in trials and donate data or biospecimens.

“Among patients there is also a high readiness to participate in trials and donate data or biospecimens [62, 70, 72, 76, 77, 98, 99], but trust in professionals [98, 101], costs, receiving counseling about test results and privacy [101], as well as the donor’s religion and culture [98] seem to be important for the decision.”

Some patients mention the hacking of financial or online data and emphasize the need for harsh penalties as an indication that data security cannot be guaranteed.

“As an indication that data security cannot be guaranteed, some patients mention the hacking of financial or online data and emphasize the need for harsh penalties [98].”

Many patients would prefer to have the right to withdraw their consent at any time of the study.

“Many would therefore prefer to have the right to withdraw their consent at any time of the study [98].”

Patients from different ethnic groups express skepticism about the consent process and are suspicious about whether all consented rules are actually followed.

“With regard to participation in research, patients from different ethnic groups express skepticism about the consent process and are suspicious about whether all consented rules are actually followed.”

Although there is generally a high willingness among patients to donate data and biospecimens for precision medicine research, one study also suggests that patients expect a corresponding countervalue when pharmaceutical companies earn large sums of money from drug development that was made possible by patients' donations.

“Although there is generally a high willingness among patients to donate data and biospecimens for precision medicine research, one study also suggests that patients expect a corresponding countervalue when pharmaceutical companies earn large sums of money from drug development that was made possible by patients' donations.”

Some participants in the study argued that if biospecimens contributes to corporate profit, patients should be compensated.

“Some participants in the study argued that if biospecimens contributes to corporate profit, patients should be compensated [98, 115].”

Trust in professionals, costs, receiving counseling about test results and privacy, as well as the donor's religion and culture seem to be important for the decision to participate in trials and donate data or biospecimens.

“Among patients there is also a high readiness to participate in trials and donate data or biospecimens [62, 70, 72, 76, 77, 98, 99], but trust in professionals [98, 101], costs, receiving counseling about test results and privacy [101], as well as the donor’s religion and culture [98] seem to be important for the decision.”

Some people would like to be compensated for their donation if pharmaceutical companies gain a high profit with it.

“Nevertheless, some people would like to be compensated for their donation if pharmaceutical companies gain a high profit with it [98, 115].”

Some patients also worry that if a drug is not prescribed frequently enough, pharmaceutical companies will raise the price or stop its production.

“Some patients also worry that if a drug is not prescribed frequently enough, pharmaceutical companies will raise the price or stop its production [98].”