ethical issues

Question 1

what must all research be?

Answer 1

• ethically approved

Question 2

what can ethical approval be?

Answer 2

• whole programme
• or individual study

Question 3

what is the research ethics committee?

Answer 3

• group of people appointed to review research proposals to assess formally if the research is ethical

Question 4

what should the research conform to?

Answer 4

• conform to recognised ethical standards

Question 5

what should research respect?

Answer 5

• dignity
• rights
• safety
• well- being
  (of people involved)

Question 6

what does research enable?

Answer 6

• enables services e.g., NHS to improve the current and future health and well- being of people they serve

Question 7

what does research always include and why?

Answer 7

• always involves a degree of risk
• researchers cannot predict the outcome with certainty

Question 8

what may research include?

Answer 8

• additional burdens or intrusions exceeding those involved in normal care

Question 9

what are the main ethical issues?

Answer 9

• voluntary participation
• informed consent
• anonymity, confidentiality
• potential for harm
• communication of results

Question 10

what is voluntary participation?

Answer 10

• participants are free to opt in or out of the study at any point in time

Question 11

when should you be especially mindful when implementing voluntary participation?

Answer 11

• when the relationship between the researcher and the participant is not equal
  e.g., doctor- patient, lecturer- student, sports coach- player

Question 12

what is informed consent?

Answer 12

• participants know the purpose, benefits, risks, and funding behind the study before they agree or decline to join

Question 13

what relevant information is given in informed consent?

Answer 13

• what the study is about, including what they need to do
• risks and benefits of taking part
• how long the study will take
• supervisor’s contact information and institution’s ethics approval number

Question 14

what should you let the potential participants know about their data in informed consent?

Answer 14

• let them know that their data will be kept confidential
• they are free to stop participating at any point for any reason
• they can withdraw info by contacting you or supervisor

Question 15

what do you give potential participants after informed consent?

Answer 15

• give them time to think about it (at least 24 hours)
• give them the opportunity to ask questions

Question 16

what is anonymity?

Answer 16

• you don’t know the identities of the participants
• personally identifiable data is not collected

Question 17

what is data pseu- donymisation?

Answer 17

• alternative method where you replace identifiable information of participants with fake identifiers

Question 18

what is the benefit of data pseu- donymisation?

Answer 18

• data can still be linked to participants but it’s harder to do so because you separate personal information from study data

Question 19

how could you implement anonymity?

Answer 19

• each participant could be given a random three digit number so personally identifying information is separated form research data

Question 20

what is confidentiality?

Answer 20

• you know who the participants are but keep that information hidden from everyone else
• you anonymise personally identifiable data so that it can’t be linked to other data by anyone else

Question 21

how do you keep data confidential?

Answer 21

• take steps to safeguard it and prevent threats to data privacy

Question 22

where do you store consent?

Answer 22

• store any signed consent forms in a locked file drawer
• encrypt all files with data

Question 23

what is agreed before beginning the study?

Answer 23

• ask everyone to agree to keep what’s discussed confidential and to respect each other’s privacy

Question 24

what else should you note regarding confidentiality?

Answer 24

• note that you cannot completely guarantee confidentiality or anonymity so pts are aware of risks involved

Question 25

what should other researcher's directly involved in the study follow?

Answer 25

- must follow your institution's data protection protocols

Question 26

what is potential for harm?

Answer 26

- physical, social, psychological, and all other types of harm are kept to an absolute minimum

Question 27

what are the four types of harm?

Answer 27

- psychological - social - physical - legal

Question 28

what is psychological harm?

Answer 28

- sensitive questions or tasks may trigger negative emotions such as shame or anxiety

Question 29

what is social harm?

Answer 29

- participation can involve social risk, public embarrassment or stigma

Question 30

what is physical harm?

Answer 30

- pain or injury can result from the study procedures

Question 31

what is legal harm?

Answer 31

- reporting sensitive data could lead to legal risks or a breach of privacy

Question 32

if questions are sensitive what should you do with participants?

Answer 32

- inform participants about the sensitive nature and explain that their responses will be confidential

Question 33

what is results communication?

Answer 33

- you ensure your work is free of plagiarism or research misconduct, and you accurately represent your results