Jessica Roberts

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.

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.