Ethical, Legal and Social Issues Working Group

Ethical, legal, and social issues (ELSI) are deeply intertwined with the practice of biomedical and health informatics. Whenever health information technologies and systems, including products and services (all referred to hereafter as HIT), mediate interactions among people, organizations, and information resources, there are opportunities to responsibly govern HIT throughout its lifecycle from development through deployment and use. In addition, designs of HIT must be carefully considered because they influence the actions and beliefs of users and how the systems are used.

Applications of technologies and systems have both intended and unintended effects, and these effects impact stakeholders differently. The design and implementation of HIT must be driven by the needs of patients, healthcare providers, and society-at-large. Therefore, it is crucial to examine issues including, but not limited to, privacy, information asymmetry, authority, trust, liability, social inequality, and policy concerning implementation and use. ELSI are not static, but instead grow in parallel with change in the field of health informatics and with society as a whole.

Vision

Our vision is that all developers, researchers, clinicians, trainees, patients, and users of health information technologies and systems act with an understanding of ethical, legal, and social issues.

Mission

The mission of the Ethical, Legal, and Social Issues Working Group (ELSI-WG) is to promote collaboration, education, and scholarship around ELSI arising from health information technologies and systems.

Goals

• To develop and sustain a network of people and groups addressing ELSI in biomedical and health informaticsTo advocate for ethical, equitable, and human-centered practices in applications of health information technology
• To create, maintain, and promote educational and scholarly resources and activities for professional development, policy development, and public understanding of ELSI
• To support and facilitate the inclusion of patients, caregivers, and other persons with underrepresented expertise in discussions of ELSI

Proposed activities

• Convene a monthly call for working group members
• Author position and perspective articles on ELSI topics
• Organize panels and workshops to examine current topics
• Develop and maintain a “first-stop” online resource for supporting awareness and discussions of ELSI
• Collaborate with other AMIA working groups and non-AMIA stakeholders to raise awareness of ELSI in biomedical and health informatics
• Serve as liaison to the AMIA ethics committee