International Biobanking Symposium IV - on consent in mobile studies
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Transcript of International Biobanking Symposium IV - on consent in mobile studies
“Investigators will meet annually in-person with each participant to assess and record progression … every six months, the team
will conduct phone and mail surveys regarding diagnosis, medications, and
other impacts of the disease…”
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
1. series of interviews and requirements gathering
2. interaction design process and prototyping
3. consent development
1. tiered information access by participants
2. “pictorial” dominant on first information tier
3. text dominant on second information tier
4. require perfect score on short assessment
iconographic representations of key concepts in informed consent
“nouns and verbs”
http://sagebase.org/pcc
2015 tasks:
- multi-stakeholder data sharing process development - new modules for e-consent - connection with biobanks
consent isn’t standalone. it connects to ethics and governance structures inside data use - and back.