Ethical Issues in Research
Faculty of Health & Social Work
University of Plymouth
Examples of Unethical Research
World War II Nazi Medical studies of
1930’s & 1940’s
Tuskegee Syphilis Studies 1932 –
Research in syphilis.
What would be the results.
Withheld care on men
Willowbrook hepatitis study 1950s -
Children with “mentally handicapped”
Spread of hepatitis in this group
What was going on.
Children were admitted that there was
Hep C in the hope they would catch it
Aidstrials in Uganda 1990’s
Placebo on pregnant women
How ethical was it to mislead people
Took the number plates police
friend name and addresses
Found Bi-married with children.
Rights of Individuals
Not to be harmed
Shouldn’t come to harm –
To self determination
Self-respect & Dignity
Not to be refused services
Or believe so.
You get the same level of care as if
you had said yes to the research.
(Source: Couchman & Dawson. Nursing & Health
Care Research Scutari Press 1995 p142)
Ethical Principles in Research
Respect for autonomy
(Source: Royal College of Nursing. Research
Ethics RCN London 1998)
Do they come under a particular
Mentally or emotionally disabled
“Doctor knows best”
May want someone to talk to
Bring up feelings
Physically disabled people
May not be able to leave
Clinging to any hope….
The very poor who may be dependent
on certain services
If you don’t take part, may feel
that quality of service may
Research Ethics Committees
Any research carried in the UK out
needs to go in front of a research
Accountable to Health Authority
Used to be one in each health
county. Now one in, eg, SW
Membership usually 8 -12
Advise on all matters relating to ethics
of research which involves human
Provides a mechanism for monitoring
Research Ethics Committees
To maintain ethical standards of
practice in research
To protect participants from harm
To preserve participants’ rights
To provide reassurance to the public
that ethical standards are being met.
Human cells that were kept.
The public didn’t know
Needs to meet certain ethical
Proposal ethic committee +
governance committee (to see if it is
of high enough significance, value for
money, will it be of value…
Aims to improve research quality &
safeguard the public by:
◦Enhancing ethical & scientific quality
◦Promoting good practice
◦Reducing adverse incidents & learning
◦Preventing poor performance &
Is for all those who:
◦Participate in, host, fund, manage or
Ethics of the Research Process
Asking the question.
Does the question need to know the
Do we know the answer?
Is it going to be value for money?
Where is the literature from?
Is it rigourous?
Has the answer been found?
Pretend you haven’t found it?
Found something nasty?
Choosing the design
Inappropriate design – RCT
Withhold a treatment…!!!!
Placebo pain relief.
Ie post surgery.
Shouldn’t put people at risk
After they have been told they
are dying (eg)
(after deciding the method)
Picking the sample
Feel that they have to do it.
Excluding anyone who you know will
Have they given consent and
receive enough information to make
If you tell everyone everything…
May skew things
People react as they think they
Need to know
What it means
Who is going to have access
No evience of compultion.
Committee look for evidence
Get out clauses.
No emotional blackmail.
“gifts” expences , ? ok
Were they leading questions
May cause uncomfortable stuff and
just leave them dangling..
Who are you getting your data from?
Need to presume basic honesty
Analyzing the data
Do they reported on all that they say
that they were going to..?
What have they done with their
Have they done it all?
Presenting the findings
Have they presented EVERYTHING
or just what looks good.
All research need money
Drug company sponsorship.
But they may not want to know if
the research shows that their
product comes out worse.
Disseminating the findings
May not want you want to see?
No result still got to publish it…
Sitting on research
Don’t meet the requirements not
meeting the needs to the sponsor,
(eg – the Black report)
Have they maintained
Should say if they are using
But be careful! You can breach
If you say that you did it in your own
place of work and you have said what
you do and where….!!!!
Look at ethics….
EVERY stage , have ethical principles
Need to say that ethical committee