In this paper, we explore the perspectives of expert stakeholders about who owns data in a medical information commons and what rights and interests ought to be recognized when developing a governance structure for an MIC. We then examine the legitimacy of these claims based on legal and ethical analysis and explore an alternative framework for thinking about participants' rights and interests in an MIC.

In his recent article “Ethical Criteria for Health-Promoting Nudges: A Case-by-Case Analysis,” Bart Engelen (2019) develops a useful framework for evaluating health-related nudges in an attempt to...

Purpose The purpose of this paper is to consider the implications of the shift from citizen journalist to social media user by examining how ethics are addressed on social media sites compared to citizen journalism sites. Design/methodology/approach This paper applies the framework of a 2012 study of ethics on citizen journalism sites to social media sites’ guiding documents to compare how they discuss ethics and what they ask of the users, offering suggestions for how social media sites might imbue users (...) with a sense of their responsibilities and obligations. Findings The analysis finds that ethics are largely ignored on social media sites, written in legalistic language and framed in negative terms, rather than in terms of responsibilities or obligations. Originality/value When citizen journalism was subsumed by social media, much of the language – lacking as it may have been – around users’ responsibilities to each other was lost. This paper suggests social media sites should seek to raise rather than lower the barriers to entry, and imbue users with a sense of the responsibility they accept when sharing information online. (shrink)

Stigma can lead to poor health outcomes. At the same time, people who are perceived as unhealthy may experience stigma as the result of that perception. As part of a larger project examining discrimination on the basis of health status or “healthism,” we explore the role of stigma in producing disadvantage based on health status. Specifically, we look to the principles of health equality and health justice. An intervention violates health equality when it is driven by animus, which can be (...) the result of stigma. Additionally, laws and policies offend health justice when they worsen health outcomes or they create or deepen health disparities. An intervention that produces stigma — whether intentionally or unintentionally — may offend health justice by making people worse off, in absolute or in comparative terms. Stigma-related health laws and policies can therefore be healthist in at least two ways. We therefore conclude that stigma should neither be the basis, nor the product, of efforts to improve health. (shrink)

This commentary proposes the need for greater normative debate about when, if ever, it is appropriate for insurers to access genetic information of insureds to combat anti-selection.

Proposed changes to the Common Rule would require publicly funded researchers to disclose whether a subject's biospecimens could be used for commercial profit and whether the subject will share in those proceeds. Disclosing commercial interests will inform research participants that their tissue may have commercial value, a possibility that those individuals might not have previously considered. The proposed changes may then provide people with an opportunity to negotiate commercial rights in their biospecimens despite the well-accepted legal precedent that individuals maintain (...) no interests in their excised tissue. (shrink)