Genetic testing of stored biological samples: views of 570 U.S. workers

Storing tissue samples for future genetic testing raises practical and ethical issues regarding informed consent and confidentiality. Employed adults' views on this are uniquely valuable but have been little studied.

This study surveyed 570 employees at a U.S. defense laboratory and an academic medical center regarding their willingness to have tissue stored for future genetic testing, interest in receiving results of future testing and being contacted for consent for future testing, and acceptability of various tissue-storage options.

Respondents were somewhat interested in providing samples and significantly less interested in providing traceable samples than untraceable samples. Workers with concerns about having a genetic illness were more interested in providing tissue for future testing. Most participants expressed strong desire to be asked before future genotyping and to receive those test results. Respondents preferred that tissue samples be stored with their doctor, local medical facility, or local research university rather than with their employer, a government agency, or an insurance company.

Employed adults valued future genetic testing as being important to their well-being and strongly preferred reconsenting for future use of stored tissue. These data provide a baseline to measure potential changes in workers' attitudes since the passage of the U.S. Genetic Information Nondiscrimination Act in 2008.