Targeting Representation: Interpreting Calls for Diversity in Precision Medicine Research.

Scientists have identified a "diversity gap" in genetic samples and health data, which have been drawn predominantly from individuals of European ancestry, as posing an existential threat to the promise of precision medicine. Inadequate inclusion as articulated by scientists, policymakers, and ethicists has prompted large-scale initiatives aimed at recruiting populations historically underrepresented in biomedical research. Despite explicit calls to increase diversity, the meaning of diversity - which dimensions matter for what outcomes and why - remain strikingly imprecise. Drawing on our document review and qualitative data from observations and interviews of funders and research teams involved in five precision medicine research (PMR) projects, we note that calls for increasing diversity often focus on "representation" as the goal of recruitment. The language of representation is used flexibly to refer to two objectives: achieving sufficient genetic variation across populations and including historically disenfranchised groups in research. We argue that these dual understandings of representation are more than rhetorical slippage, but rather allow for the contemporary collection of samples and data from marginalized populations to stand in as correcting historical exclusion of social groups towards addressing health inequity. We trace the unresolved historical debates over how and to what extent researchers should procure diversity in PMR and how they contributed to ongoing uncertainty about what axes of diversity matter and why. We argue that ambiguity in the meaning of representation at the outset of a study contributes to a lack of clear conceptualization of diversity downstream throughout subsequent phases of the study.

Closure and Justice: A Qualitative Study of Perspectives From Homicide Survivorship Experts.

The criminal justice system and the media perpetuate the rhetoric of closure, which frames the end of grief for homicide survivors, or murder victims' loved ones, as an attainable goal on their path to healing. Public discourse has also framed the death penalty as justice for survivors. However, little scholarly attention has addressed survivors' experiences and perceptions of closure and justice. This research addresses this gap in the literature using in-depth, qualitative interviews with 36 community, academic, and criminal justice experts on homicide survivorship, 12 of whom are homicide survivors themselves. Using grounded theory, we derived six themes on closure and justice from the data. The majority of respondents indicate that survivors do not experience closure, and that they consider the term misleading. The question as to the meaning of justice produced more disparate responses. While many indicated that justice has unique meanings for individual survivors, holding the perpetrator accountable emerged as the most common theme. Half of the respondents also indicated that justice does not exist in homicide cases because of their difficult experiences with the criminal justice system. The findings have implications for policy, practice, and future research.