What is ELSI?

ELSI is defined as Ethical, Legal and Social Issues, explained below:

  • Ethical - Is it ethical to collect the data? Is it being collected in an appropriate manner and used ethically?
  • Legal - Is the data being collected, processed, stored and distributed in accordance with the legal requirements in place within that country or region?
  • Social - Is data sharing important? What are the benefits and drawbacks of sharing this data? Is there a conflict between the rights of the individual and society as a whole?

Investigating and discussing the ethical, legal and social issues of biomedical data collection and sharing is an important activity as part of a research project. It provides a way of assessing the impact of the research activity on both the individuals from whom data is being collected and the society in which those individuals live.

The impact of data collection and sharing can be viewed both positively and negatively. Reviewing potential harms allows them to be avoided or minimised, whilst ensuring that positive outcomes are supported as fully as possible.