A Preliminary Study of Employees’ Views of Genetic Research: Perceived Harm, Risk, and Willingness to Participate

Abstract

Background: Genetic innovation may bring benefits to workplaces, including the development of new genetic tests to help employers better protect workers’ health. Collecting employees’ genetic information may nevertheless have adverse consequences, including the potential for unintended secondary results or misuse of results. Thus, employees’ views regarding benefits and risks of participating in genetic testing for research purposes is important. Although the 2008 Genetic Information Nondiscrimination Act (GINA) has reduced risks for negative repercussions of participating in genetic research, it has not eliminated risks completely; thus, exploring attitudes regarding these issues continues to be relevant. Methods: Sixty-three healthy working adults in a health sciences center and federal scientific research laboratory participated in a written survey and structured interview. This article analyzes aspects of workers’ views toward participation in genetic research and their likelihood of participation in various research-related procedures and studies that have potentially negative employment consequences. Results: Participants reported that they were likely to volunteer for each of six research procedures, but the two procedures that involved genetic testing were ranked lowest in terms of their willingness to participate. Respondents perceived the potential harm of all six procedures as lower than “usual” risks encountered in daily life. Employees did not express willingness to participate in health research they believed would lead to various negative consequences for their work status. Conclusions: Respondents were receptive to volunteering for research involving genetic testing. Respondents endorsed concerns related to socioeconomic and employment consequences. Future research on these issues should include replication with a larger, more diverse sample; examination of workers’ knowledge of genetics; and a wider range of concerns associated with genetic research participation.

Keywords:

• employees’ beliefs
• genetic research
• research harm
• research risk

Acknowledgments

The authors gratefully acknowledge the U.S. DOE for research grant support. The authors also thank Melinda Rogers, Katherine Green Hammond, and Ann Tennier.