Communicating Cancer Genetic Research Results to Participants
Author Information
Author(s): Fiona A. Miller, Mita Giacomini, Catherine Ahern, Jason S. Robert, Sonya de Laat
Primary Institution: University of Toronto
Hypothesis
What are the implications of disclosing individual research results in cancer genetic testing?
Conclusion
The study suggests that disclosing individual research results may not provide adequate clinical care or ethical research practices.
Supporting Evidence
- Participants expect to receive their research test results, which blurs the line between research and clinical care.
- Respondents expressed concerns about the quality and timeliness of research-based genetic testing services.
- Research imperatives often take precedence over individual clinical needs in the context of genetic testing.
Takeaway
When researchers share test results with patients, it can feel like a medical service, but it might not be as good as real medical care.
Methodology
The study analyzed 30 interviews with key informants involved in cancer genetic testing research.
Potential Biases
Participants may not fully understand the research context and its implications for their care.
Limitations
The study had a small sample size and relied on participants' recollections from several years prior.
Participant Demographics
Participants included researchers, research participants, and clinicians involved in cancer genetic testing.
Digital Object Identifier (DOI)
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