Ethics and data collection exercises Roddy Cowie

Two horror stories  Prof E & Dr C Moral Moral – approval takes time – approval takes time  Leeds-Reading database Moral Moral – release restrictions last for ever – release restrictions last for ever

Issues - The collection phase  Know ethical parameters  design accordingly;  get approval by ethical committee  and informed consent from participants.

Issues - Storage and distribution phase  Obtain consent to store  and consent to use;  ensure participant’s right of access

Issues - Using material for research  Know conditions attached to it;  respect them;  follow required procedures.

Issues - Sanctions  Law  Damages?  Ethics audit  What can EC do? Much to find out,  please not the hard way…

Steps to stay safe: know  Who is your team’s ethical contact? check with QUB administrator  What the relevant ethical committee at your institution?  If possible, don’t go via a medical one psychologists tend to be more accommodating psychologists tend to be more accommodating See handout on See handout on

Steps to stay safe: vetting  Know the issues  Design to minimise them!!!  Submit your proposal to your Ethical Committee  Get prior advice from HUMAINE if need be.  we need signed papers before any work is credited to HUMAINE If it wasn’t cleared by HUMAINE, it wasn’t funded by HUMAINE If it wasn’t cleared by HUMAINE, it wasn’t funded by HUMAINE

Steps to stay safe: routine  In most cases you should only have to say ‘this does not raise grave ethical issues’, and back it up with a list of issues crossed off to show you have considered them.  It may be possible to go to your ethical committee with standard HUMAINE form designed to do that, so it can be cleared before you begin any kind of collection.

Steps to stay safe: Draft form to guide ethical planning  Brief code  Description of study  What negative effects might result from in your research?  Confirm that appropriate plans exist  Informed consent protocol  Sample of information to participants

Steps to stay safe: Storing information & arranging access  There are issues about personal data (eg name, age, gender, educational background, results of tests for mood, etc) as well as recordings per se.  Release to the USA is a particular problem, because it does not have the same data protection laws.  We will need to develop guidelines that are properly ‘localised’ (adapted to the individual country). To be regulated through portal … watch this space.

Last word on ethics  A stitch in time saves nine  So long as you get the stitch right