BACKGROUND: Developing innovative, efficient and institutionally scalable bio-specimen consent for remnant tissue that meets the NIH consent guidelines for genomic and molecular analysis is essential for precision medicine efforts in cancer. OBJECTIVE: To pilot test an electronic video consent that individuals could complete largely on their own. METHODS: UCLA developed a video-consenting approach designed to be comprehensive yet fast (around 5 minutes) for providing universal consent for remnant bio-specimen collection for research. The approach was piloted in 175 patients who were coming in for routine services in laboratory medicine, radiology, oncology, and hospital admissions. The pilot yielded 164 completed post-consent surveys. The pilot assessed the usefulness, ease, and trust worthiness of the video consent. In addition, we explored drivers for opting-in or opting-out. RESULTS: The pilot demonstrated that the electronic video -consent was well received by patients with high scores for usefulness, ease, and trustworthiness even among patient that opted-out of participation. The revised more animated video pilot test in phase II was better received (P<0.01). There were significant differences between those who opted-in and opted-out in their beliefs concerning usefulness of tissue, trusting researchers, importance of contributing to science and privacy risk (p<0.0001). The results showed that "I trust researchers to use leftover biological specimens to promote the public's health" and "Sharing a biological sample for research is safe because of the privacy protections in place" discriminated opt-in status the strongest predictors (both AUC were 0.88). Privacy concerns seemed universal in individuals who opted-out. CONCLUSIONS: Efforts to better educate the community may be needed to help overcome some of the barriers in engaging individuals to participate in precision health initiatives. CLINICALTRIAL: Not Applicable.
BACKGROUND: Developing innovative, efficient and institutionally scalable bio-specimen consent for remnant tissue that meets the NIH consent guidelines for genomic and molecular analysis is essential for precision medicine efforts in cancer. OBJECTIVE: To pilot test an electronic video consent that individuals could complete largely on their own. METHODS: UCLA developed a video-consenting approach designed to be comprehensive yet fast (around 5 minutes) for providing universal consent for remnant bio-specimen collection for research. The approach was piloted in 175 patients who were coming in for routine services in laboratory medicine, radiology, oncology, and hospital admissions. The pilot yielded 164 completed post-consent surveys. The pilot assessed the usefulness, ease, and trust worthiness of the video consent. In addition, we explored drivers for opting-in or opting-out. RESULTS: The pilot demonstrated that the electronic video -consent was well received by patients with high scores for usefulness, ease, and trustworthiness even among patient that opted-out of participation. The revised more animated video pilot test in phase II was better received (P<0.01). There were significant differences between those who opted-in and opted-out in their beliefs concerning usefulness of tissue, trusting researchers, importance of contributing to science and privacy risk (p<0.0001). The results showed that "I trust researchers to use leftover biological specimens to promote the public's health" and "Sharing a biological sample for research is safe because of the privacy protections in place" discriminated opt-in status the strongest predictors (both AUC were 0.88). Privacy concerns seemed universal in individuals who opted-out. CONCLUSIONS: Efforts to better educate the community may be needed to help overcome some of the barriers in engaging individuals to participate in precision health initiatives. CLINICALTRIAL: Not Applicable.
Authors: Francis Anyaka Amayoa; Frederick Nelson Nakwagala; John Barugahare; Ian Guyton Munabi; Erisa Sabakaki Mwaka Journal: J Empir Res Hum Res Ethics Date: 2022-05-12 Impact factor: 1.978
Authors: Clara Lajonchere; Arash Naeim; Sarah Dry; Neil Wenger; David Elashoff; Sitaram Vangala; Antonia Petruse; Maryam Ariannejad; Clara Magyar; Liliana Johansen; Gabriela Werre; Maxwell Kroloff; Daniel Geschwind Journal: J Med Internet Res Date: 2021-12-08 Impact factor: 5.428