Talking Ethics Early in Health Data Public Private Partnerships

Abstract

Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy—in turn raising an important problem in business and data ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network’s ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue.

The public-private research ecosystem in the genome editing era

“… 3 Most recently, Landers et al., focusing on health data research, attempt to balance “[p]ublic and private partners’ often contradictory and competing incentives,” which may threaten public and patient interests, against the PP ecosystem’s “unique value contributions” to those same interests. 18 To promote that balance, they offer an ethical framework for each stage of a PP partnership and guidelines to enable stakeholders to “mitigate misaligned incentives and ensure that they can deliver societally beneficial innovation.” 18 Among the key principles of this framework are protecting researchers’ academic freedom, implementing a policy to manage conflicts of interest, facilitating data sharing and access, establishing effective project governance, protecting human subjects, publishing results, and structuring the research to maximize benefits for communities and society.…”