RAN SURVEY OF ADVOCATES 2011
After reading Research Advocacy Network 2010 Survey of Advocates – Providing Results to Participants in Biospecimen Studies I found that it provided a good starting point for further discussions about the issues raised with special attention too:
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Who should provide the information?
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Should information on diagnosis discrepancies and incidental findings be provided?
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Should genetic counselling be provided?
For me, I thought the issue of consent was critical to these issues and raises the questions of what actually does the respondent consent to when providing their tissue for research?
I personally thought that a lot of the statements passed by those involved in the survey could generate a lot of discussion. I have included these statements below along with my thoughts.
Research results should be provided to individuals who want them
Participants need to have the opportunity to consider the numerous implications of knowing the results.
Receiving research results encourages participation in future studies
Do you think that this is the case?
Individuals should be kept updated on any finding in the study, good or bad.
How should this happen?
Research results should be transferred to patient’s chart.
What are the implications of this in relation to confidentiality and the potential for emotional and physical harm to the patient?
Research results that are incomplete or not validated and have no long-term health implications are likely to lead to anxiety.
Recurrence anxiety is a reality for individuals diagnosed with cancer. Therefore any additional information that may or may not have long term health implications must be preceded by examining the purpose of the provision and the subsequent effect this would have on the patient.
Clinical trials are group research studies and not individual treatment plans.
While this is a valid point to lose sight of the effect on the individual would be problematic. What do you think?
Informed consent can be used to address the above issues.
A clearer definition of what constitutes informed consent is critical. Consider for example of genetic for the BRCA1 and BRCA2 gene mutation. The presence of this mutation has implications for treatment management and planning. A woman with the mutation would face issues about having children. These issues would vary in intensity depending on her age and relationship status at time of diagnosis. The presence of this gene mutation is a family issue and as such who to tell becomes an issue. Not to mention the effect this has on the availability of life, mortgage and income protection insurance. In this circumstance full discussion and access to information underpins the notion of informed consent.
Physicians often do not have time to counsel patients, hence the importance of genetic counselling.
Individuals providing the results should be well trained so that they can provide the information in a non-frightening way. Cultural competence education should be a component of this training.
Maybe the issues is not how to provide information in a ‘non frightening’ way but rather to ensure that adequate preparation has occurred to enable the patient to deal effectively with the information.
I hope that my comments will generate interest and I look forward to some very interesting discussions.
Lorraine