Dialogue 1: What are Data, and are they changing in an Era Of Big Data and Precision Medicine?

Guiding Questions

● When data are produced in one context (e.g., medicine; ancestry testing) but used in many others (e.g., law enforcement; surveillance), how do their meanings and effects change?

● What new policy, ethics and justice issues arise as data becomes the raw material of new models of governance and business?

● What of the vast amounts of personal data being collected (economic, social, clinical, environmental) is particularly challenging to expect to collect for precision health? Why?

● Where are the discussions of social benefit occurring in these forms of data collection? Public? Law?

● What current forces (e.,g norms, laws, market logics, scientific practices) shape the flows of big data (e.g. financial data and personal communication data)? In what ways might these flows and the norms that guide them differ as the data flows of Precision medicine are negotiated?

● What is fundamentally different between collected data modes to date and the expectations of precision medicine? Regionally? Nationally? Long term?

● What principles and values should guide decisions about whether to share biodata across institutions and social arenas?


Dialogue 2: What’s happening to health and healthcare in an age of big data?

Guiding Questions

● What will precision medicine look like in the era of ‘big data’? What kinds of healthcare are most likely to be affected and where (e.g, academic medical centers, safety-net clinics)?

● How will patients experience the largescale use of their healthcare data in research, prevention or care? Will ‘big data’ approaches be visible to the average patient?

● How are providers (and their healthcare institutions) likely to experience the use of patients’ data in research? What challenges and opportunities will they encounter?

● Does precision medicine await the fruits of translational research efforts such as the PMI or can patients benefit even while research proceeds?

● How are major health benefits programs or insurance plans making decisions about coverage of the diagnostics, risk tools and treatments that may emerge from PM?

● Who has benefited from PM to date? Who do we anticipate benefiting in the future and how? When is the future?


Dialogue 3: What is happening to the governance of biodata in an age of open data?

Guiding Questions

● What do we mean by a ‘social contract’ for science and medicine today? What might such a social contract look like in an age of Precision Medicine that foregrounds knowledge and justice?

● How do we create trustworthy systems for governing data that value knowledge and justice?

● What happens when the market demands strongly shape ethics and our policy?

● What kind of instrument is informed consent, conflict of interest, or terms and conditions of service? What are their promises and limits?

● What is the role of public engagement, and what can be learned from past efforts to engage communities in the governance of novel forms of biomedical research?

● What new governance practices are in the works? How are they emerging?


Dialogue 4: Precision Medicine: Interrogating the Promise

Guiding Questions

● What are the promises of Precision Medicine?

● What new understandings of disease has PM produced to date?

● What new business models are emerging?

● What is the promise of PM for bioethics?

● Will PM reduce health disparities? How?

● Will PM make healthcare more efficient? How?


 

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