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Risks in taking part in research

Participating in research

Specifically linked to clinical research

It is important when volunteering for clinical trials to be realistic about the possibility of the experimental drug proving effective and becoming rapidly available. Researchers are likely to be enthusiastic about their topic of research and expect it to prove beneficial to people with dementia in the long run but research by definition involves a degree of uncertainty (otherwise there would be no need to carry out tests). The media, on the other hand, has a tendency to sensationalize initial research findings, sometimes giving the impression that a miracle cure is just around the corner or that eating a certain vegetable or fruit will prevent or cure dementia.

Whilst the experimental drug may have a positive effect on the volunteer, the whole process of drug development from the initial discovery of a potentially effective substance or molecule to marketing of the drug can take several years and many participants involved in the trial will not even receive the experimental drug (as they will be in the control group which receives a placebo). This may in some cases interfere with their personal treatment process resulting in them not benefiting from currently available treatment at a time when it could have improved their condition or quality of life.

On the other hand, anti-dementia drugs that are currently available were dependent on people taking part in clinical trials and the continued participation of people with dementia in such trials is essential for the continued development and improvement of drugs to treat and perhaps even one day cure dementia.

Other possible drawbacks involving risk or personal disadvantage might include:

  • Unforeseen side effects which may be unpleasant, serious or even life-threatening
  • Having foregone other recognised treatment possibilities and then the experimental drug not having any positive effect
  • Being in the group which does not actually receive the experimental drug and therefore not having any possibility of benefiting from it
  • The frustration of not knowing which group one is in (i.e. the treatment group or the control group)

General issues linked to research

Some studies may involve a certain degree of inconvenience or burden. Examples include:

  • Having to fill out lengthy forms and questionnaires
  • Having to stay in hospital for a while
  • Having to be available for several visits perhaps at inconvenient times
  • Having to travel to where the research is being carried out
  • Being observed or monitored
  • Invasion of privacy e.g. having interviewers in one’s home
  • Being asked about or reminded of very personal issues
  • Sticking to strict guidelines e.g. with regard to behaviour, exercise or diet
  • Being subjected to various tests e.g. blood tests, scans, tests involving reaction times or memory etc.

The above examples would probably not be disturbing to most people or particularly unpleasant. It is more a question of inconvenience and knowing in advance what is involved so as to be able to choose a study which suits one’s character and can fit into one’s daily routine.

What if the research does not obtain the expected results?

An experimental drug would not have reached the clinical testing phase unless there was already strong evidence to suggest that it would prove at least as good as existing treatments, if not better. Other forms of research, such as psychosocial research, should be based on a prior in-depth understanding of the issue to be researched, building on previous research, backed up by sound theories and approved by ethics committees (although this is not as strictly regulated as with clinical drug trials and is not always possible either).

Participating in research is always constructive in some way as it adds something to existing knowledge. Even if an experimental drug proves ineffective or results in undesirable side effects, this newly acquired knowledge will contribute towards developing a new, more effective and safer drug. Similarly, finding out that a new or commonly accepted approach to care does not improve quality of life may result in it no longer being used or an alternative approach being investigated and thus benefit the lives of many people.



Last Updated: Friday 21 August 2009