Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
paper
Cited
Public
- Authors
- Wolf, Susan M; Crock, Brittney N; Van Ness, Brian; Lawrenz, Frances; Kahn, Jeffrey P; Beskow, Laura M; Cho, Mildred K; Christman, Michael F; Green, Robert C; Hall, Ralph; Illes, Judy; Keane, Moira; Knoppers, Bartha M; Koenig, Barbara A; Kohane, Isaac S; Leroy, Bonnie; Maschke, Karen J; McGeveran, William; Ossorio, Pilar; Parker, Lisa S; Petersen, Gloria M; Richardson, Henry S; Scott, Joan A; Terry, Sharon F; Wilfond, Benjamin S; Wolf, Wendy A
- Year
- 2012
- Journal
- Genetics in medicine : official journal of the American College of Medical Genetics
- PMID
- 22436882
- DOI
- 10.1038/gim.2012.23
- PMCID
- PMC3597341
Biobanks and archived data sets collecting samples and data have become crucial engines of genetic and genomic research. Unresolved, however, is what responsibilities biobanks should shoulder to manage incidental findings and individual research results of potential health, reproductive, or personal importance to individual contributors (using "biobank" here to refer both to collections of samples and collections of data). This article reports recommendations from a 2-year project funded by the National Institutes of Health. We analyze the responsibilities involved in managing the return of incidental findings and individual research results in a biobank research system (primary research or collection sites, the biobank itself, and secondary research sites). We suggest that biobanks shoulder significant responsibility for seeing that the biobank research system addresses the return question explicitly. When reidentification of individual contributors is possible, the biobank should work to enable the biobank research system to discharge four core responsibilities to (1) clarify the criteria for evaluating findings and the roster of returnable findings, (2) analyze a particular finding in relation to this, (3) reidentify the individual contributor, and (4) recontact the contributor to offer the finding. We suggest that findings that are analytically valid, reveal an established and substantial risk of a serious health condition, and are clinically actionable should generally be offered to consenting contributors. This article specifies 10 concrete recommendations, addressing new biobanks as well as those already in existence.
Depiction of primary researchers, biobank, and secondary researchers β a biobank research system. As noted, collection of data and samples from contributors may occur at Stage 1 research and collection sites, or at the biobank itself.
Roles and responsibilities for return of IFs and IRRs in a generic biobank research system (contributors not depicted).
| # | Section | Preview |
|---|---|---|
| 80 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 1: Clarifying the criteria and roster | Moreover, most efforts that have been suggested and are being piloted to assemble a roster ofβ¦ |
| 81 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 1: Clarifying the criteria and roster | purposes of research, as at eMERGE sites.9 Further, some biobanks are linking genetic andβ¦ |
| 82 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 1: Clarifying the criteria and roster | Thus, any central roster of returnable genetic and genomic results will have important but confinedβ¦ |
| 83 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 1: Clarifying the criteria and roster | project) to glean cross-cutting lessons for improvement and harmonization. In addition, the centralβ¦ |
| 84 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 1: Clarifying the criteria and roster | In addition to the need for a central source of advice and information, biobanks themselves andβ¦ |
| 85 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 1: Clarifying the criteria and roster | criteria for returnability to their IRB or conceivably their Data Access Committee (DAC). Someβ¦ |
| 86 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 1: Clarifying the criteria and roster | clinical significance that may result from the study, including genetic findings, and propose howβ¦ |
| 87 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | If the first step is identifying the criteria to be used in determining whether findings should orβ¦ |
| 88 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | Several questions will routinely arise. First, if the finding (e.g., the BRCA2 variant) is alreadyβ¦ |
| 89 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | information or eliminate utility entirely. When researchers encounter IFs or IRRs, it is often theβ¦ |
| 90 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | Another question that will routinely arise is whether a particular finding is well-enough understoodβ¦ |
| 91 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | Finally, deciding whether to return a particular finding in light of the general criteria for returnβ¦ |
| 92 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | In determining who should perform the function of analyzing a particular finding in light of theβ¦ |
| 93 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | In proposing that this function be discharged at the level of the biobank or biobank network, we areβ¦ |
| 94 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 2: Analyzing a particular finding | of the data and samples. Finally, biobanks are probably best positioned to document how they areβ¦ |
| 95 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 3: Re-identifying the contributor(s) | Return of IFs and IRRs will generally require re-identification of the contributor individual(s).β¦ |
| 96 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 3: Re-identifying the contributor(s) | Variation in degrees of de-identification and who holds the key to the code for re-identification isβ¦ |
| 97 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 3: Re-identifying the contributor(s) | institutions will determine how the system discharges ethical responsibilities. We recommendβ¦ |
| 98 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 3: Re-identifying the contributor(s) | to create an independent, βtrusted intermediaryβ to hold it. 87,113 This means that afterβ¦ |
| 99 | PART II. CORE QUESTIONS β F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them β Step 4: Recontacting the contributor to offer the finding | Once an IF or IRR appropriate for return has been found and the contributor individual(s)β¦ |
| Name | Type |
|---|---|
| 23andMe | cohort |
| Abnormal blood pressure local | phenotype |
| Alzheimer's disease | phenotype |
| apoE | gene |
| Atherosclerotic disease local | phenotype |
| Best Practices for biorepositories local | cohort |
| Biobank network local | cohort |
| Biobank research system local | cohort |
| Biobank Research System local | cohort |
| biobanks | cohort |
| Biorepositories local | cohort |
| BioVU | cohort |
| blood pressure | phenotype |
| brain abnormalities | anatomy |
| BRCA2 | gene |
| BRCA2 variant local | variant |
| breast cancer | phenotype |
| caHUB | cohort |
| cancer Human Biobank | cohort |
| cancer-related findings local | phenotype |
| CLIA-certified Lab local | drug |
| CLIA-certified labs local | drug |
| Clinical personnel local | drug |
| ClinSeq local | cohort |
| CollectionSite local | cohort |
| Collection sites local | cohort |
| Collection Sites local | cohort |
| Colon cancer | phenotype |
| commonly used drug local | drug |
| Contributor local | cohort |
| contributor population local | cohort |
| Contributor Population local | cohort |
| contributors local | cohort |
| Contributors local | cohort |
| Coriell Personalized Medicine Collaborative local | cohort |
| DAA local | drug |
| DAC local | cohort |
| Data Access Committee local | cohort |
| Databases local | cohort |
| dbGaP | cohort |
| de-identification local | drug |
| deletion | variant |
| diagnosis | phenotype |
| discrepant diagnosis local | phenotype |
| disease | phenotype |
| donors | cohort |
| DUA local | drug |
| eMERGE network | cohort |
| eMERGE sites local | cohort |
| Environmental exposure information local | drug |
| environmental exposures | drug |
| Fabsitz et al. local | cohort |
| Framingham Heart Study | cohort |
| Genes, Environment and Health Initiative local | cohort |
| Genetic and genomic research results local | phenotype |
| Genetic counselors local | drug |
| Genetic IFs local | phenotype |
| genetic or genomic findings local | phenotype |
| genetic variant associated with catastrophic reaction to a commonly used drug local | variant |
| genetic variants | cohort |
| Geneva | cohort |
| HealthCareSetting local | cohort |
| Hospital local | cohort |
| Human Research Participant local | cohort |
| human subjects | cohort |
| ICOB local | cohort |
| ICOBs local | cohort |
| IFs local | phenotype |
| IFs/IRRs local | phenotype |
| Incidental Finding local | phenotype |
| incidental findings local | phenotype |
| Incidental findings local | phenotype |
| Incidental Findings local | phenotype |
| Incidental Findings Committees local | cohort |
| Incidental Findings Files local | cohort |
| Incidental findings (IFs) local | phenotype |
| Incidental Findings (IFs) local | phenotype |
| incidental research results local | phenotype |
| Incidental research results (IRRs) local | phenotype |
| Incidental Research Results (IRRs) local | phenotype |
| Individual Research Result local | phenotype |
| individual research results local | phenotype |
| Individual research results local | phenotype |
| Individual Research Results local | phenotype |
| Individual Studies local | cohort |
| Institutional Sources local | cohort |
| IRB local | cohort |
| IRRs local | phenotype |
| ISBER local | cohort |
| Kaiser Permanente Research Program on Genes, Environment, and Health local | cohort |
| life-threatening condition local | phenotype |
| Mayo biobank local | cohort |
| Mayo Clinic | cohort |
| Medical information local | drug |
| MTA local | drug |
| Myeloma Bank on a Cureβ’ local | cohort |
| National Cancer Institute | cohort |
| National Childrenβs Study local | cohort |
| neuroimaging scans local | anatomy |
| neuroimaging scans local | drug |
| NIH | cohort |
| NIH intramural biobanks local | cohort |
| Non-genetic IFs local | phenotype |
| non-U.S. biobanks local | cohort |
| Northwestern NUgene local | cohort |
| pancreatic cancer | phenotype |
| participants | cohort |
| pathology | phenotype |
| Personal Genome Project local | cohort |
| Personalized Medicine Project at Marshfield Clinic local | cohort |
| pharmaceutical company local | cohort |
| phenotype | phenotype |
| physicians | cohort |
| population | cohort |
| population biobanks local | cohort |
| Population of Contributors local | cohort |
| Primary Research local | cohort |
| PrimaryResearch local | cohort |
| Primary Researcher local | cohort |
| Primary researchers local | cohort |
| Primary Researchers local | cohort |
| Primary Research Sites local | cohort |
| private biobank local | cohort |
| public biobank local | cohort |
| re-identification local | drug |
| reproductive importance local | phenotype |
| Researchers local | cohort |
| Research Networks local | cohort |
| research participants | cohort |
| Returnable Findings local | phenotype |
| Returnable IFs/IRRs local | phenotype |
| Return of Results Committees local | cohort |
| REVEAL Study local | cohort |
| Secondary Research local | cohort |
| Secondary researchers local | cohort |
| Secondary Researchers local | cohort |
| Secondary researcher sites local | cohort |
| Secondary Research Sites local | cohort |
| serious health condition local | phenotype |
| sources local | cohort |
| Specimen pathology local | phenotype |
| study cohort | cohort |
| trait | phenotype |
| Trusted intermediary local | cohort |
| Trusted Intermediary local | drug |
| tumor specimens local | phenotype |
| UK Biobank | cohort |
| University of Connecticut Behavioral Gene Bank local | cohort |
| U.S. biobanks local | cohort |
| Vanderbilt BioVU local | cohort |
| Wolf et al. local | cohort |
| Working Group local | cohort |
| Yale University IRBs local | cohort |
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