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How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings? A content
D F Vears1,2, E Niemiec3,4,5,6, H C Howard6
1Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium.
Clinical Genetics
|June 12, 2018
Summary
Diagnostic genomic sequencing consent forms often lack clarity on returning unsolicited findings (UF) and secondary findings (SF). Improving these forms is crucial for informed patient consent in clinical genomic testing.
Area of Science:
- Genomic Medicine
- Bioethics
- Clinical Diagnostics
Background:
- Whole exome and whole genome sequencing are becoming standard in clinical practice.
- The return of unsolicited findings (UF) and secondary findings (SF) to patients is a significant ethical and practical challenge.
- Understanding how diagnostic consent forms address UF/SF is essential for patient comprehension.
Purpose of the Study:
- To systematically analyze diagnostic genomic sequencing consent forms.
- To determine how UF and SF are discussed and whether patients have options regarding their return.
- To identify inconsistencies in terminology and reporting policies.
Main Methods:
- Systematic identification of online consent forms for diagnostic genomic sequencing.
- Inductive content analysis of 54 forms from 38 laboratories/clinics.
- Evaluation of UF/SF reporting policies and patient options.
Main Results:
- A quarter of analyzed forms failed to mention UF or SF.
- Inconsistent terminology was used for UF and SF, sometimes interchangeably or incorrectly.
- Reporting policies for UF varied significantly, with many forms not specifying.
- Approximately one-third of laboratories indicated they return SF.
Conclusions:
- Diagnostic consent forms require improvement in clarity and consistency regarding UF/SF.
- Enhanced information and clear options in consent forms are necessary for adequate informed consent.
- Standardizing terminology and policies for UF/SF return will improve patient understanding in clinical genomics.
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