Universal tumor screening for lynch syndrome: perspectives of patients regarding willingness and informed consent

Per Med. 2020 Sep;17(5):373-387. doi: 10.2217/pme-2020-0026. Epub 2020 Sep 2.

Abstract

Aim: Lynch Syndrome is associated with a significant risk of colorectal carcinoma (CRC) and other cancers. Universal tumor screening is a strategy to identify high-risk individuals by testing all CRC tumors for molecular features suggestive of Lynch Syndrome. Patient interest in screening and preferences for consent have been underexplored. Methods: A postal survey was administered to CRC patients in a Canadian province. Results: Most patients (81.4%) were willing to have tumors tested if universal tumor screening were available and were willing to discuss test results with family members and healthcare professionals. The majority (62.6%) preferred informed consent be obtained prior to screening. Conclusion: Patients were supportive of universal screening. They expected consent to be obtained, contrary to current practice across Canada and elsewhere.

Keywords: colorectal cancer; lynch syndrome; patient oriented research; reflex testing; universal tumor screening.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Canada
  • Colorectal Neoplasms / diagnosis*
  • Colorectal Neoplasms, Hereditary Nonpolyposis / diagnosis*
  • Colorectal Neoplasms, Hereditary Nonpolyposis / genetics
  • Cross-Sectional Studies
  • Early Detection of Cancer / psychology*
  • Early Detection of Cancer / statistics & numerical data
  • Female
  • Genetic Testing
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Informed Consent / psychology*
  • Male
  • Middle Aged
  • Patient Participation / psychology*
  • Practice Guidelines as Topic
  • Surveys and Questionnaires