HITS

Human biospecimens have played a crucial role in scientific and medical advances. Although the ethical and policy issues associated with biospecimen research have long been the subject of scholarly debate, the story of attention of a much broader audience. The story has been a catalyst for policy change, including major regulatory changes proposed in the United States surrounding informed consent. These proposals are premised in part on public opinion data, necessitating a closer look at what such data tell us. The development of biospecimen policy should be informed by many considerations—one of which is public input, robustly gathered, on acceptable approaches that optimize shared interests, including access for all to the benefits of research. There is a need for consent approaches that are guided by realistic aspirations and a balanced view of autonomy within an expanded ethical framework.

Data for Democracy is partnering with Bloomberg and BrightHive to develop a code of ethics for data scientists. This code will aim to define values and priorities for overall ethical behavior, in order to guide a data scientist in being a thoughtful, responsible agent of change. The code of ethics is being developed through a community-driven approach.

By hosting discussions among data scientists, we hope to better capture the diverse interests, needs, and concerns that are at play in the community, and put together a code that is truly created by data scientists, for data scientists.

This code of ethics for data sharing is created and proposed for adoption by the data science community to reflect the behaviors and principles for the responsible and ethical use and sharing of data by data scientists. 

As a community-driven crowdsourced effort, you can join the the discussion and contribute to the next version of the Community Principles on Ethical Data Sharing.