Ethics

Question 1

Basic ethical issues to address (9)

Answer 1

risk of harm to participant
risk of harm to researcher
Informed consent
Vulnerable populations
Non-discrimination
Privacy, confidentiality, anonymity
Data storage, use, destruction
Scientific merit
Approval of changes

Question 2

Ethics - how to manage harm?

Answer 2

assess risks in probability vs severity
Participants should be exposed no more danger than they experience in everyday life
procedures in place to manage and reduce risk
measures in place to monitor distress, provide access to support networks

Question 3

What is psychological harm?

Answer 3

Stress, anxiety, humiliation

Question 4

Causes of psychological harm?

Answer 4

invasion of privacy
exposure to degrading treatment
humiliation
challenges to self image, social status, personal relationships etc
disclosure of illegal/deviant behaviour
Trigger topics
risk of leaving person vulnerable

Deception
Disclosure of info that might lead to persecution, state, local, job etc

Access to data such as medical records, job information etc

Question 5

Ethics what is informed consent?

Answer 5

providing the participants with information about what the research is:

1. trying to achieve,
2. how,
3. Risks; and
4. with info on how to withdraw

Question 6

Ethics - what is genuine choice?

Answer 6

the participants can take part or otherwise without fear of reprisal

e.g. power dynamics are not present, rewards are appropriate and not coercive

Question 7

Ethics - capacity to consent?

Answer 7

must be over 16, some cases over 18
under then guardian must provide consent
must monitor for signs of distress

Question 8

Ethics - define vulnerable populations

Answer 8

Children
Learning difficulties
Engaging in acts against societal norms (criminals)
Prison/probation populations

Question 9

Ethics - handling discrimination

Answer 9

It can be appropriate, but only if it is spelled out why in the plan - eg the work is on womens health you can exclude men

Question 10

Ethics - handling privacy

Answer 10

must never identify people unless you have written consent

still need to have a UIN for each participant so you can remove their data is they withdraw consent

Make clear if withdrawal is not an option after a certain time

Question 11

Ethics - data handling

Answer 11

Inform board:

what it is being used for
How it will be used (papers, conferences etc)
Retention periods
How it will be destroyed

Question 12

Ethics - what is scientific merit?

Answer 12

Why is it important?
Is it a waste of money?
Respects the participants
must be worthwhile and for the common good

Question 13

Ethics - clear aims and benefits

Answer 13

Demonstrate to ethics and lay people why the research will be useful and what it will achieve

Question 14

Ethics other iisues?

Answer 14

Deception is not appropriate
Observations must be consistent with the environment (crowded place vs private location eg toilet)
Change management of the experimental process

Question 15

Ethics -respecting peoples time

Answer 15

must not deceive
acknowledge right to refuse
withdrawal of participation

Question 16

Ethics - debriefing

Answer 16

provide as minimum a debrief sheet for the participants

essential if the research was not to test what was initially presented to them as an opportunity to withdraw consent