It is becoming widely accepted that the digitization of healthcare, constructed around a core foundation of electronic health records, is inevitable (American Reinvestment and Recovery Act, 2009). The capture of digital personal health data is expected to drive efficiency, quality of care, and enhanced clinical discovery; culminating in a vision of the future where medical care is tailored to individuals rather than broad populations. Accompanying these developments is an increasingly strident public debate on the privacy and security of digitized health information. To the extent that discovering new drugs, developing new therapies, and understanding the effects of existing treatment regimens requires highly granular genomic data, the promise of personalized medicine cannot be realized unless individuals voluntarily share their personal genetic information. Using theories of altruism, relationship orientation, and commitment as the core conceptual foundations, we investigate the complex trade-off that individuals make between altruism and self-interest in their decision to disclose identified personal genetic information for research purposes to different stakeholders in the healthcare value chain (e.g. hospitals, pharmaceutical companies, government/public health agencies). Depending on the requesting stakeholder and how close the individual feels to the target entity based on levels of interaction and resultant trust and commitment, the influence of altruism and monetary and non-monetary incentives on willingness to disclose is likely to differ. We test our theory with data from 1,089 respondents from a nationally representative sample using a quasi-experimental, survey methodology. Findings suggest the effects of altruism are situational dependent. While incentives were shown to be positive motivators for consumers in their willingness to provide access, consistent with the “motivational crowding” argument, we find that monetary incentives detract from the positive influence of altruism when hospitals make requests to consumers while non-monetary incentives have the opposite effect. The theoretical and policy implications are discussed.
Anderson, Catherine L. and Agarwal, Ritu, "Genetic Information Altruists: How Far and To Whom Does Their Generosity Extend?" (2009). ICIS 2009 Proceedings. 172.