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• Ethical Discrimination?
  susanne stevens
  Published on: 15 August 2016

• Published on: 15 August 2016

  Ethical Discrimination?

  • susanne stevens, retired

  A properly worded consent form must make risks transparent but if the person has not even been asked to participate, discrimination is too easily slipping in. Even giving the reason as duty of care can be mis/used to eliminate some people - but their participation may be valuable as well as ethical. There can be an unconscious bias to avoid difficulties for researchers but discrimination will miss opportunities for the...

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  A properly worded consent form must make risks transparent but if the person has not even been asked to participate, discrimination is too easily slipping in. Even giving the reason as duty of care can be mis/used to eliminate some people - but their participation may be valuable as well as ethical. There can be an unconscious bias to avoid difficulties for researchers but discrimination will miss opportunities for the unexpected to be revealed by the exclusion of risk. Intolerance of risk means whole groups may not benefit from research carried out and they subsequently may be treated incorrectly, that is in the same way as the findings conclude for others with low risk. Exeter University has carried out much ground breaking work to enable wider participation in research by the public including via self referral and genuine rather than tokenistic efforts to involve the wider community. It has been promoted in other parts of the country by now but how much the public is aware of it is questionable. (Patient and Public Involvement Exeter web site) Open selection does not always happen though as some projects still select participants via GPs acting as gatekeepers. For example COBRA. (On Exeter web site) Researchers will not always get it right and results can be skewed. It would be interesting to see a comparison of the same or other studies conducted both by self referral and via gatekeepers. One area which could do more to become transparent to the public is, although more loosely described as research , the issue of conferences and events which are held by researchers/practitioners/professionals to debate and share information with each other exclusively , any resulting write ups are also exclusive. Many are not open to the public either because admission is only for stated specialist groups or because the cost of admission is entirely prohibitive for those who are not funded. These events are using information given directly or indirectly by the public and paid for by citizens. On these grounds as well as it being ethically right to make debate inclusive to all citizens - events and conferences which have an impact on or interest to the public should be made open access.

  Conflict of Interest:

  None declared

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  Conflict of Interest:
  None declared.

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