Analysis of Consent Forms in Cancer Genome Sequencing
Author Information
Author(s): Clarissa Allen, William D. Foulkes
Primary Institution: McGill University
Hypothesis
How are ethical, legal, and social issues being handled in cancer genome sequencing consent forms across different jurisdictions?
Conclusion
The study reveals that while there is a high degree of similarity in privacy protection among cancer researchers, there is significant variability in how they address re-contacting participants, returning results, and facilitating withdrawal.
Supporting Evidence
- 73% of the forms articulated the intention to use samples for future, possibly unrelated research.
- 90% expressed the intention to share their research data with other, possibly unaffiliated, researchers.
- 21 of the documents warned about the risk of information becoming known and potential discrimination.
Takeaway
Researchers looked at consent forms from cancer studies to see how they protect people's privacy and handle important issues. They found that while many forms are similar, there are big differences in how they ask for permission to contact people again or share results.
Methodology
The study involved a qualitative thematic analysis of informed consent forms from 30 cancer genome sequencing studies.
Potential Biases
The study may not fully capture the variability in practices due to local ethics review board requirements.
Limitations
The analysis was limited to consent documents, which may not address other relevant ethical issues like participant recruitment and potential conflicts of interest.
Participant Demographics
The consent forms were from studies conducted in various countries, including the US, Canada, UK, Australia, Belgium, and the Netherlands.
Digital Object Identifier (DOI)
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