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


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
Hoop
Jinger G
JG
Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin 53226, USA. jhoop@mcw.edu
Roberts
Laura Weiss
LW
Hammond
Katherine A Green
KA
D000328:Adult; D018070:Biological Specimen Banks; D003219:Confidentiality / Q000941:ethics*; D003625:Data Collection; D033002:Duty to Recontact; D005260:Female; D036281:Genetic Research; D005820:Genetic Testing; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D008297:Male; D014481:United States