Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment

DNA Photo
Award Amount
$2.4 million
Project Dates
09/02/2011 to 07/31/2017
Principal Investigator

Gloria Petersen, PhD (Mayo)
Barbara Koenig, PhD, RN (UCSF)
Susan M. Wolf, JD (University of Minnesota)

This empirical and normative bioethics research project was created to guide policy and practice about the disclosure of genomic incidental findings (GIFD), a much-debated topic. With ethical guidance from a multidisciplinary ELSI Working Group, we conducted an experiment designed to develop strategies for offering incidental findings to family members of probands in a biobank for pancreatic cancer. Given that the majority of the pancreatic cancer probands are deceased, many concerns needed to be addressed: Who should be offered the findings, given that notification of the proband’s legal next of kin may not assure that biologically at-risk family members are informed? Since relatives were not involved in the original biobank informed consent process, how should re-contact be managed? What disclosure procedures best meet family members’ concerns? Is there an ethical threshold for determining when the researcher is obligated to offer GIFD? Our approach was informed by studying the preferences of biobank research participants (including kin). A partnership among 3 PIs—a genetic epidemiologist who directs the SPORE biobank (Gloria Petersen), an empirical researcher (Barbara Koenig), and a bioethics and law scholar (Susan Wolf)—combined the strengths of Mayo Clinic and the University of Minnesota. This project generated much-needed data on proband and family preferences, produced detailed analyses of the legal and ethical issues raised, created consensus recommendations, devised methods for honoring preferences, and advanced sound biobank governance.

Project outcomes


Supplemental Materials

The following supplemental materials are related to the following paper: Gordon DR, Radecki Breitkopf C, Robinson M, Petersen WO, Egginton JS, Chaffee KG, Peterson GM, Wolf SM, Koenig BA. Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family PreferencesAJOB Empirical Bioethics 2018:1-22. They are part of the NIH-funded project Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment.