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Ethical issues within health research > Key principles of ethical research > Flashcards

Key principles of ethical research Flashcards

1
Q

what are the five key principles

A 
respect
beneficence
non-maleficence
justice
fidelity
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2
Q

beneficence

A

research must ‘do good’. Benefits can be direct or indirect

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3
Q

direct benefit

A

immediate benefit for the participants

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4
Q

indirect benefit

A

benefit society by changing policy, practice and attitudes, or increasing knowledge and understanding

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5
Q

respect

A

research must respect the autonomy of people, and ensure that people with diminished autonomy are protected.
-respect religious belief and practice- how this may affect their choice to participate

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6
Q

autonomy

A

people can make their own decisions of it and how they take part in research

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7
Q

Respect for people: in practice

A
  • informed consent
  • vulnerable populations- supported and protected through research
  • privacy, anonymity and confidentiality- when you share findings
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8
Q

justice

A

research should not exploit participants or perpetuate problematic relationships. Need to think critically at when ebenfits from research and who bears the risk

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9
Q

justice: in practice

A
  • ensure that a diverse range of participants are included
  • avoid targeting certain groups e.g. Tuskegee
  • avoid deception: no bullying or offering incentives
  • share findings with participants and the wider community
  • patient and public involvement
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10
Q

target groups to avoid

A
  • if they are illiterate
  • if they cant read
  • if they cant understand
  • if they cant access care any other way
  • if they cant afford healthcare
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11
Q

there is a real push to

A

share data for secondary research- so work doesn’t need to be repeated

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12
Q

patient and public involvement is importnant

A

to make sure that the research is actually useful- used at every stage of research

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13
Q

shift in research language e.g.

A

people are not called subject anymore- participants. Research is done with real people, in partnership

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14
Q

Non-maleficence

A

research must not do harm. Harm can be direct or indirect

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15
Q

direct harm

A

immediate risk to participant

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16
Q

indirect harm

A

risk to society by changing policy, practice and attitudes, or promoting misinformation

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17
Q

example of indirect harm within non-maleficence

A

Wakefield claimed there was a link between autism and the MMR vaccine- caused a decrease in the % vaccinated, though that some conditions could be eradicated if it wasn’t for him .

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18
Q

how can non-maleficence be insured

A

provide participants and ethics committee with fun info about risk and benefits

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19
Q

privacy: respect

A

-research shouldn’t unnecessarily intrude into participants private lives e.g. not asking irrelevant questions

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20
Q

anonymity: respect

A

participants identities should not be revealed in the publication and dissemination of results or the sharing of data

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21
Q

example of where anonymity was not kept in research

A

Phones Gage- aggregate data- don’t focus on one person

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22
Q

confidentiality : respect

A

participants inf should only be shared to the extent necessary for the research or as required by legal/ethical obligations

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23
Q

privacy, anonymity , confidentiality in relation to respect : in practice

A
  • only measure what is necessary
  • de-identified data
  • pseudonyms
  • reporting aggregate data without talking about participants
  • reporting of pertinent quotes (rather than whole transcripts)
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24
Q

vulnerable populations: respect

A
  • people living in institutions (care home, prison etc)
  • people who lack the capacity to consent
  • marginalised/disadvantaged stigmatised groups, ethnic minorities
  • people living in dangerous environments
  • people engaging in high risk behaviour e.g. prostitution
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25
Q

vulnerable groups should be

A

supported to participate in research, but also be protected from abuse and eploitation

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26
Q

research with vulnerable groups is only justified if:

A

1) the research is addressing a need or priority for this group e.g. sickle cell mainly affects black people
2) the research cannot be conducted with a non-vulnerable group e.g. child health, impact of assault in prisons
3) the group will benefit fro the results in the research

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27
Q

vulnerable populations must also be protected from

A

gate keepers- those who allow the research on their charges–> what if they have ulterior motives

28
Q

informed consent: respect

A

people must consent to being invade in research and their consent must be based o complete information about the study

29
Q

three components of informed consent

A

(1) information voluntary
(2) procedures- risks and benefits
(2) comprehension- simple language- primary school level

30
Q

informed consent in practice

A
  • information sheets
  • consent forms- kept by researcher- conns can be withdrawn at any time
  • provide material in other languages
  • test comprehension
31
Q

what if a person lacks the capacity to consent?

A

can be provided by authorised representatives e.g. next of kin, parent, legal guardian

32
Q

even if consent is give for a person wh lacks the ability to consent, what must be given

A

assent

33
Q

assent is

A

a physical or verbal expression of willingness to participate e.g. wear an arm thermometer in dementia patients, if they try to take it off they have not shown assent

34
Q

dissent is

A

a physical or verbal expression of an unwillingness to participate

35
Q

assent is……, but not ………

A

necessary, sufficient

36
Q

consent does not overrule

A

dissent e.g. if a parent has given permission, but the child dissents (runs out of the room), the researcher should not continue

37
Q

who decides capacity

A

a lack of capacity to consent, does not mean research should not be done e..g if the study is to d with a pattern of children behaviour

38
Q

risk- non-maleficence

A

risk is the possibility that harm will occur/ the severity of that harm

39
Q

harms can be

A

physical, psychological, financial, social or legal

40
Q

who else can be at risk of harm

A

researchers e.g. they will usually not go to homes alone e.g. marie curie

41
Q

adverse events

A

any untoward medical occurrence experience by a participant during the research- regardless of whether it is causal of not

42
Q

adverse events simple

A

new or worsening symptoms

43
Q

serious adverse events

A

death, life-threatening, requiring hospital treatment, persistent or significant disability, birth defect

44
Q

example of an adverse event

A

thalidomide - babies born without limbs

45
Q

adverse events must be

A

documents and reported in the publication of findings

46
Q

researchers have an obligation

A

to terminate research thats leading to serious adverse events

47
Q

deception- justice

A

in some some situations providing complete information would invalidate the research . in these situations it may be necessary to temporarily deceive participants e.g placebo

48
Q

deception is different to

A

covert research

49
Q

covert research

A

research done without consnet

50
Q

deception is only justified if

A
  • incomplete disclosure is truly necessary to accomplish the goals of the research
  • any undisclosed risk are minimal
  • participants are debriefed as soon as possible and ar provided with research results
51
Q

example of when deception was not justified

A

pilgrims experiment- didn’t debrief

52
Q

Coercion- justice

A

consent is only valid when given voluntarily. Participants must not be coerced or unduly influenced

53
Q

coercion is

A

an overt threat f harm

54
Q

coercion includes undue influence

A

offer of excessive, unwarranted, inappropriate, or improper reward

55
Q

coercion reduction in practice

A
  • incentives must be reasonable e.g. payment of travel, lunch
  • care must not be affected by choice to participate- control group will be given the gold standard treatment already on offer
56
Q

fidelity

A

researchers should be honest, trustworthy and act with integrity- unethical research destroys that trust

57
Q

top five most trusted jobs

A 
nurses
doctors
teachers
professors
scientists
58
Q

fidelity in practice

A
  • provide complete and accurate info to prospective participants
  • avoid plagiarism, mis-representation, and intellectual property theft
  • do not fake data or misuse research funds
  • declare conflicts of interest
  • stop research that cases adverse effects and act in the best interest of participants
  • identify and punish unethical research practices
59
Q

’ as a researcher..

A

my intellectual property is all i have’

60
Q

how is misuse of research funds monitored

A

use of funding must be declared and justified

61
Q

punishments for unethical research practices

A

retraction
financial penalty
people lose their job
legal

62
Q

data management- fidelity

A

how data is collected, stored, analysed, shared and destroyed is an ethical issue. It has become particularly important in the digital age

63
Q

appropriate management of data is a

A

legal requirement in the UK

64
Q

give an example of funfairs who have specific principles for the management of research data and require researchers to plan data management in advance

A

ESRC

65
Q

when researcher is funded or supported by a third part who may or may not have an interest in positive finding

A

conflict of interest

66
Q

how to avoid conflicts of interest

A
  • declare sources of sport in informed consent material nd published research
  • seek independence in all arrangements
  • research shouldn’t be used for lobbying e.g. asking for money from the government
67
Q

what shouldn’t research be used for

A

lobbying- e.g. asking for money from the government

Ethical issues within health research (11 decks)

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