The charge to the Just Data? Justice, Knowledge and Care in an Age of Precision Medicine meeting participants is to define a science and justice agenda that responds to the transformations of precision medicine and big data in biomedical research and healthcare. While these transformations promise ambitious revolutions in biomedical science and healthcare, they also raise fundamental questions about what kind of societies we are building as we build new healthcare from big data infrastructures. What will precision medicine mean for wealth and health inequalities, surveillance, citizen rights, public health and systems of responsibility and governance? Addressing these issues push us beyond traditional approaches to institutional bioethics or “ethical, legal, and social implications” (ELSI). In this meeting our goal then is not ethical science so much as it is ‘good science,’ as laid out by Charis Thompson (2013). Good science starts from the assumption that research practices always have ethics and politics, and what we require is a more robust institutional integration of ethics, politics and science. By engaging directly with questions of justice and health equity, and with critical issues that matter for people living in California and beyond, we seek ‘good science.’
What do we need to understand – and what should we do – if we want good science, better care and just, equitable worlds to be guiding goals of open, big data approaches to biomedicine and healthcare?
A Break Out Group Leader and Critical Listener will facilitate the teams. Each group will take up this question in different ways based on their common concerns and distinct perspectives. Reflect on the questions, challenges and questions that emerged in each of session. Describe what it would take to understand and engage these issues. What responses are needed to ensure that access to effective care, as well as racial, economic, environmental, disability and gender justice are adequately addressed within ongoing social and biomedical transformations?
We have offered many questions to spark discussion, and do not expect teams to reach consensus or arrive at clear answers. Rather, we hope you will listen and work together toward identifying different pressing issues and challenges. Our goal is to build new connections, alliances, collaborations and friendships. Friends do sometimes disagree, we hope respectfully and generatively.
Questions for Every Team:
- What are the most pressing issues and challenges raised in the dialogue today?
- What examples or past experiences did dialogues raise? What can we learn from them?
- What questions were unaddressed? What perspectives or communities were left out?
- What are the next steps for articulating the political, institutional and intellectual work of creating an agenda for science and justice?
- Who should be working on them? What kinds of expertise and experiences are needed? How can we identify collaborators and allies?
- What might be the funding opportunities and desired goals and outcomes?
- What new institutional practices and supports are needed in California and beyond?
Data Team: Jake Metcalf, Eric Flores Alvarez, Nick Anderson
The Data Team will tackle the major challenges surrounding the transformation of data into a ubiquitous element of daily life, political decisions, and an incredibly valuable economic resource.
We are living in a world where bio-data, and digital consumer data and surveillance data are converging across platforms and social worlds. How do we grapple with and democratically govern these flows of data? For example, how should we respond to the widespread and profitable desire to collect and circulate patient data? What are the major conceptual and political problems around biomedical data and other forms of identifying personal data?
Health Team: Kate Weatherford Darling, Vivian Underhill, Peter Yu
The Health Team will take on questions about how healthcare organizations and public health institutions should respond to big data and precision medicine.
How should health care organizations and public health departments respond to big data and precision medicine? Should they ‘help’ make this promised revolution possible? Should they make demands for resources or infrastructure in return or offer different priorities and solutions? For example, biotech and pharmaceutical companies are drawing on the public infrastructure of universities and health systems to collect and aggregate data. What should they give back?
Governance Team: Martha Kenney, Sara Tocchetti, Barbara Koenig
The Governance Team will brainstorm the institutional practices or changes needed for ensure the trusted and just circulation of health and bio-data.
What is the social contract for biomedicine today? How are the future promises of precision medicine shaping health policy and healthcare today? For example, what should patients expect when they seek biomedical care? Across UC Health, the terms and conditions forms use broad, vague and differing language to describe the authorization of “research for Medical Center purposes” when they seek healthcare. What can we learn about consent and patient understanding from current institutional practices at UC with respect to TACOS (Terms and Conditions of Service) and informed consent? What other examples or models of institutional data governance are emerging?
Social Science Team: Sonia Rab Alam, Hannah Finnegold, Julie Harris Wai
The Social Science team will work on developing social science and humanities research and training that can create and fuel a science and justice agenda.
Social scientists and humanities researchers often find their work under-valued and their expertise de-prioritized compared to biomedical researchers. To create good science, the traditional hierarchy dividing biomedical and social science research will need to be re-worked. What would it take? What processes, debates, and tense collaborations will be needed for a science and justice agenda?
Public Dialogues Team: Ugo Edo, Jessica Neasbitt, Malia Fullerton
The Public Dialogues Team will tackle questions about what it will mean to engage different and diverse publics in transformations of public health policy, biomedical research and healthcare.
In the age of big data and precision medicine, ‘public engagement’ morphed into ‘marketing’ through social media platforms and public relations campaigns. For example, the California Initiative for Advancing Precision Medicine has planned an “Asset Inventory” tour across California to “engage research leaders and medical experts from California’s leading academic institutions” as well as pharmaceutical industry. What alternative forms of public dialogues and engagements will be needed to forge a science and justice agenda?