The breakneck speed of emerging research mean that research ethics is a constantly evolving field.  Many of us are acutely aware of this when faced with trying to review  the ethical implications of a new form of research methodology or new research area. Added to this is the pace of social change, locally and globally. Research ethics guidelines, of necessity, are principle based to allow them to be relevant and therefore of assistance to researchers and HREC members in this fast changing space. But questions still arise about how we should apply these principles to novel research and methods.

This conference will provide a forum for talking together about some of these new developments and how research ethics committees and their institutions can respond effectively with ethically sound guidance to meet these new examples. Just a few of the many examples of what is now facing research ethics committees and researchers are: 

• At this moment, the data of 4.2 billion people are available online through social media, anonymous data can be re-identified using only 15 data points. Is there now any such things an anonymous or irreversibly de-linked data?

• Public posts disclosing medical diagnoses have created a wealth of data used to study COVID-19 vaccination side effects, endometritis, MS. This identified data is accessible to anyone with a computer. What meaning does protection of privacy have now?

• A previously simple demographic question to participants about their gender (M or F?) is simple no longer, and can simultaneously alienate some and discriminate against others, many, while presenting participant in countries with strict gender expression with a situation where a non-binary answer to this question would break the law.  

• Keeping data gathered in  some jurisdictions confidential has become difficult to do legally when researchers attempt to transfer participant information outside the country due to laws governing encrypted information.

The AEN Conference will look to explore the reading, researching, training within our institutions to ensure we are providing our researchers with the most up to date advice and guidance, while also protecting the safety of research participants. But it is ultimately through collaboration and discussion we can move forward confidently while official policies and standards are catching up.