Patient Preferences Regarding Recontact by Cancer Genetics Clinicians

Overview

Journal Fam Cancer

Publisher Springer

Specialty Oncology

Date 2007 Feb 20

PMID 17308889

Citations 11

Authors

Constance A Griffin

Jennifer E Axilbund

Ann Marie Codori

Ginny Deise

Betty May

Cheryl Pendergrass

Miriam Tillery

Jill D Trimbath

Francis M Giardiello

Affiliations

Soon will be listed here.

Abstract

Background: Ongoing advances in cancer genetics lead to new opportunities for early disease detection, predictive genetic testing and potential interventions. Limited information exists on patient preferences concerning recontact to provide updated information. We evaluated colon cancer genetics patient preferences concerning recontact about advances in medical genetics.

Methods: Information was mailed to 851 individuals seen at the Colon Cancer Risk Assessment Clinic at the Johns Hopkins Hospital and to participants in a colon cancer gene testing study seen during an 8-year period. Information provided included description of advances in gene testing technology, discovery of MSH6 and MYH genes, detailed fact sheets and a survey of patient preferences for notification and potential uses of new information.

Results: Most patients wanted an ongoing relationship with genetics providers (63%), reinitiated by genetics providers (65%) and contact only with information specifically relevant to them (51%). Most preferred personalized letters as the means of contact (55%). Reasons for and against recontact and circumstances in which individuals would pursue additional genetic testing were also tabulated. There were few statistically significant differences in the responses between clinic and study participants.

Conclusion: Patients evaluated in a colon cancer risk assessment clinic want updated information at a rate similar to those who participated in a colon cancer gene testing study. These findings have implications for the consultative nonlongitudinal nature of such clinics and suggest patient preferences for personally-tailored information could be labor intensive.

Citing Articles

DNA sequencing in oncology: a focus group study on a duty to recontact.

Giesbertz N, Assen L, van Harten W, Bredenoord A Future Sci OA. 2024; 10(1):2432233.

PMID: 39578423 PMC: 11587842. DOI: 10.1080/20565623.2024.2432233.

Canadian College of Medical Geneticists: clinical practice advisory document - responsibility to recontact for reinterpretation of clinical genetic testing.

Goh E, Chad L, Richer J, Bombard Y, Mighton C, Agatep R J Med Genet. 2024; 61(12):1123-1131.

PMID: 39362754 PMC: 11672037. DOI: 10.1136/jmg-2024-110330.

"I wish that there was more info": characterizing the uncertainty experienced by carriers of pathogenic ATM and/or CHEK2 variants.

Reyes K, Clark C, Gerhart M, Newson A, Ormond K Fam Cancer. 2021; 21(2):143-155.

PMID: 33855648 DOI: 10.1007/s10689-021-00251-3.

The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results.

Bombard Y, Brothers K, Fitzgerald-Butt S, Garrison N, Jamal L, James C Am J Hum Genet. 2019; 104(4):578-595.

PMID: 30951675 PMC: 6451731. DOI: 10.1016/j.ajhg.2019.02.025.

Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma.

Romero Arenas M, Rich T, Hyde S, Busaidy N, Cote G, Hu M Ann Surg Oncol. 2018; 25(5):1395-1402.

PMID: 29427212 PMC: 10013431. DOI: 10.1245/s10434-018-6366-0.

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