Racial Differences in Perceptions of Genetic Wellness Programs.

PURPOSE: Genetic wellness programs (GWPs) are a highly innovative workforce wellness product. Recently marketed to U.S. employers by at least 16 vendors, GWPs take advantage of low-cost DNA sequencing to detect genetic risk factors for an increasing array of diseases. The purpose of this research is to understand perceptions, concerns, and barriers related to GWPs, among employees from Black, White, and Asian backgrounds and different income levels. APPROACH: Qualitative study with 3 focus groups (FGs). SETTING: Employees of large high-technology companies (deemed likely early GWP adopters). RESPONDENTS: 21 individuals recruited online through User Interviews. METHOD: FG guide developed via literature review and landscape analysis, and pre-tested. FGs led by a trained moderator and audio-recorded. Transcripts content analyzed for key themes. RESULTS: Nearly all respondents saw potential benefits to GWP participation for themselves or their families. However, there were profound differences in perceptions of risks to GWP participation between Black and White/Asian respondents. These differences surfaced in three broad areas: privacy and discrimination risks; family impact risks; and feelings about the employer. Willingness to participate in a GWP also varied between Black employee respondents and White and Asian employee respondents (including low-income White employees). Only 27% of Black employees would participate in GWP, compared to 90% of the other employees. CONCLUSION: Most employees appear likely to support employer adoption of GWPs. However, Black employees report significant concerns regarding participation. Addressing these concerns through program design would benefit all employees, and could increase trust and uptake of GWPs.

Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey.

We report results from a large survey of public attitudes regarding genomic database governance. Prior surveys focused on the context of academic-sponsored biobanks, framing data provision as altruistic donation; our survey is designed to reflect four growing trends: genomic databases are found across many sectors; they are used for more than academic biomedical research; their value is reflected in corporate transactions; and additional related privacy risks are coming to light. To examine how attitudes may evolve in response to these trends, we provided survey respondents with information from mainstream media coverage of them. We then found only 11.7% of respondents willing to altruistically donate their data, versus 50.6% willing to provide data if financially compensated, and 37.8% unwilling to provide data regardless of compensation. Because providing one's genomic data is sometimes bundled with receipt of a personalized genomic report, we also asked respondents what price they would be willing to pay for a personalized report. Subtracting that response value from one's expected compensation for providing data (if any) yields a net expected payment. For the altruistic donors, median net expected payment was -$75 (i.e. they expected to pay $75 for the bundle). For respondents wanting compensation for their data, however, median net expected payment was +$95 (i.e. they expected to receive $95). When asked about different genomic database governance policies, most respondents preferred options that allowed them more control over their data. In particular, they favored policies restricting data sharing or reuse unless permission is specifically granted by the individual. Policy preferences were also relatively consistent regardless of the sector in which the genomic database was located. Together these findings offer a forward-looking window on individual preferences that can be useful for institutions of all types as they develop governance approaches in this area of large-scale data sharing.

Health and Big Data: An Ethical Framework for Health Information Collection by Corporate Wellness Programs.

This essay details the resurgence of wellness program as employed by large corporations with the aim of reducing healthcare costs. The essay narrows in on a discussion of how Big Data collection practices are being utilized in wellness programs and the potential negative impact on the worker in regards to privacy and employment discrimination. The essay offers an ethical framework to be adopted by wellness program vendors in order to conduct wellness programs that would achieve cost-saving goals without undue burdens on the worker. The essay also offers some innovative approaches to wellness that may well better serve the goals of healthcare cost reduction.