Ethical Issues

1
Ethical Issues

• Informed Consent
• Information Sheet
• Consent form
• Vulnerable Participants
• Deception
• Participants Welfare
• Confidentiality
• The Right to Withdraw

2
Informed Consent

• You must demonstrate how you will gain informed
  consent from all of the people who participate in
  your project.
• Q How will you do this?
• A By giving them a (verbal) explanation
• Q Why isnt this sufficient?
• A It is not sufficient to give them a verbal
  explanation only, since if questioned you would
  have no evidence of what you had told your
  participants.

3
Informed Consent

• So You must do this by providing your
  participants with a written information sheet
• Q What if my participants have communication
  difficulties which may affect their ability to
  understand what I am asking them to do?
• A you must demonstrate how you will address this
  e.g by adapting your information sheet (and
  consent form) to be as easy to understand as
  possible e.g. by combining pictures with
  simplified written text to aid understanding (see
  the work of Kagan and colleagues with people with
  aphasia).

4
Informed Consent

• You may wish to combine a simplified written
  information sheet with a spoken/signed
  explanation to try to ensure that the maximum
  amount of information is understood
• Consent Form
• You must indicate in your proposal that you will
  include a consent form which all participants
  will be asked to sign

5
Informed Consent Children

• You should aim to acquire the informed consent of
  children who are participating in your project
• Clearly this depends on their age, but with older
  children this should be possible using a suitably
  simplified information sheet and consent form
• Where a child in under 16 years of age you must
  also gain the informed consent of the parents

6
A CLINICAL INVESTIGATION OF THE TREATMENT OF WORD
FINDING DIFFICULTIES IN APHASIA USING SOUND AND
WRITTEN CUES

• A research project.
• Looking at How helpful is speech and language
  therapy for word finding problems?

7
The Research Project

• Will help us to answer questions about aphasia
• ? ?
• ? APHASIA ?
• ? ?
• You may find that the therapy does not help you.

8
Taking part in the research project means

• I will ask you to tape record conversations with
  someone who you talk to a lot.
• You can choose this person yourself.

9
Taking part in the research project means

• Seeing me once a week for about 9 months - 1
  year.
• For the first two months I would do some tests of
  your language skills and ask you about the
  difficulties you have in daily life

10
Taking part in the research project means

• You do not have to take part in this study if you
  do not want to.
• If you decide to take part you may withdraw at
  any time without having to give a reason.

11
Informed Consent Deception

• There is a distinction between witholding some
  of the details of the hypothesis under test and
  deliberately falsely informing the participants
  of the purpose of the research, especially if the
  information given implied a more benign topic of
  study than was in fact the case . . .the central
  principle is the reaction of the participants
  when the deception was revealed. If this (would)
  lead to discomfort, anger or objections then the
  deception is inappropriate (British
  Psychological Society, Ethical Principles for
  Conducting Research with Human Participants p.6)
• Available online at www.bps.org.uk/documents/code
  .pdf

12
Informed Consent

• In general you should inform all participants of
  the objectives of the research . . . of all
  aspects likely to influence willingness to
  participate . . Explain all aspects of the
  research about which the participants enquire.
  Intentional deception of the participants over
  the purpose and general nature of the
  investigation should be avoided whenever
  possible
• (British Psychological Society, Ethical
  Principles for Conducting Research with Human
  Participants p.8 and 9)

13
Participants Welfare

• You must show that you have considered the
  welfare of your participants at all stages during
  your project and have identified anything within
  your method that may affect them.
• You must consider your research from the
  standpoint of your participants
• The general principle is that research should not
  increase the risk your participants are exposed
  to it should not increase the probability of
  them coming to harm (British Psychological
  Society, Ethical Principles for Conducting
  Research with Human Participants p.7)
• You must describe the steps you will take to
  prevent, minimize or address any risk factors

14
Participants Welfare

• Q If you use a questionnaire to explore vocal
  abuse amongst a group of professional voice users
  how might this affect them?
• A It may raise their awareness that they may be
  damaging their vocal folds and/or cause anxiety
• Q How could you address this?
• A e.g by providing them with an information
  sheet on vocal hygiene and which also explains
  the action they should take if they have
  persistent symptoms

15
Confidentiality

• You must describe the steps you will take to
  ensure the confidentiality of any data collected
  during your project
• e.g by using code numbers to identify
  questionnaires
• safe storage of data
• will data be destroyed on successful completion
  of project?

16
The right to withdraw

• You must show that you have considered how
  participants may withdraw from your project if
  they wish to do so.
• E.g by including your university supervisors
  contact number on the information sheet