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Return of individual research results and incidental findings: facing the challenges of translational science
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title
Return of individual research results and incidental findings: facing the challenges of translational science
(English)
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main subject
incidental finding
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author name string
Susan M. Wolf
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1
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language of work or name
English
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publication date
2013
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published in
Annual Review of Genomics and Human Genetics
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PubMed
volume
14
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PubMed
issue
1
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page(s)
557-77
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PubMed
cites work
A public resource facilitating clinical use of genomes
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
21 March 2017
Management of the clinically inapparent adrenal mass ("incidentaloma")
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
21 March 2017
Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
21 March 2017
Offering aggregate results to participants in genomic research: opportunities and challenges
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
21 March 2017
Public expectations for return of results from large-cohort genetic research
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
21 March 2017
The Role of Law in the Debate over Return of Research Results and Incidental Findings: The Challenge of Developing Law for Translational Science
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
28 September 2017
The Informed Cohort Oversight Board: From Values to Architecture
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
28 September 2017
Mapping the incidentalome: estimating incidental findings generated through clinical pharmacogenomics testing.
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
An informatics approach to analyzing the incidentalome
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Genomic inheritances: disclosing individual research results from whole-exome sequencing to deceased participants' relatives
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Return of research results from genomic biobanks: cost matters
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Intentions to receive individual results from whole-genome sequencing among participants in the ClinSeq study
1 reference
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Population studies: return of research results and incidental findings Policy Statement
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Secondary variants in individuals undergoing exome sequencing: screening of 572 individuals identifies high-penetrance mutations in cancer-susceptibility genes
1 reference
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Managing incidental findings and research results in genomic research involving biobanks and archived data sets
1 reference
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Taking aims seriously: repository research and limits on the duty to return individual research findings
1 reference
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
retrieved
28 September 2017
Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Intersection of biobanking and clinical care: should discrepant diagnoses and pathological findings be returned to research participants?
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Opportunities and challenges for the integration of massively parallel genomic sequencing into clinical practice: lessons from the ClinSeq project
1 reference
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Taxonomizing, sizing, and overcoming the incidentalome
1 reference
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
The legal risks of returning results of genomics research
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility
1 reference
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PubMed Central
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28 September 2017
Biobanking and deceased persons
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Children and biobanks: a review of the ethical and legal discussion.
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Research ethics. Research practice and participant preferences: the growing gulf.
1 reference
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PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Offering individual genetic research results: context matters
1 reference
stated in
PubMed Central
reference URL
https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Principles of human subjects protections applied in an opt-out, de-identified biobank
1 reference
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PubMed Central
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28 September 2017
Custodianship as an ethical framework for biospecimen-based research
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PubMed Central
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28 September 2017
Prospective biorepository participants' perspectives on access to research results
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Incidental findings and ancillary-care obligations
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PubMed Central
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28 September 2017
Managing incidental findings in human subjects research: analysis and recommendations
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
The uneasy ethical and legal underpinnings of large-scale genomic biobanks
1 reference
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
Ethics. Incidental findings in brain imaging research
1 reference
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PubMed Central
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28 September 2017
The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
The charitable trust as a model for genomic biobanks
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PubMed Central
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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4452115
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28 September 2017
The debate over research on stored biological samples: what do sources think?
1 reference
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PubMed Central
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28 September 2017
When should an investigator share raw data with the subjects?
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PubMed Central
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28 September 2017
Clinically serious abnormalities found incidentally at MR imaging of the brain: data from the Cardiovascular Health Study
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28 September 2017
Return of results in genomic biobank research: ethics matters
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28 November 2018
Disclosing decedents' research results to relatives violates the HIPAA Privacy Rule.
1 reference
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PubMed Central
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28 November 2018
International normative perspectives on the return of individual research results and incidental findings in genomic biobanks
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PubMed Central
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28 November 2018
Engaging children in genomics research: decoding the meaning of assent in research
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PubMed Central
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28 November 2018
Familial communication of research results: a need to know?
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PubMed Central
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28 November 2018
Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time
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28 November 2018
Human genome 10th anniversary. What would you do?
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28 November 2018
“Human Non-Subjects Research”: Privacy and Compliance
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28 November 2018
Building a foundation for biobanking: the 2009 OECD guidelines on human biobanks and genetic research databases (HBGRDs).
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28 November 2018
Subjects matter: a survey of public opinions about a large genetic cohort study.
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28 November 2018
Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion
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28 November 2018
Ethical issues raised by incorporation of genetics into the National Birth Defects Prevention Study.
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28 November 2018
Medicine. Reestablishing the researcher-patient compact.
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28 November 2018
Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.
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28 November 2018
CT Colonography Reporting and Data System: A Consensus Proposal
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28 November 2018
The ancillary-care responsibilities of medical researchers. An ethical framework for thinking about the clinical care that researchers owe their subjects
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28 November 2018
Incidental findings on pediatric MR images of the brain.
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28 November 2018
Disclosing misattributed paternity.
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28 November 2018
Solidarity and equity: new ethical frameworks for genetic databases
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28 November 2018
Incidental findings on brain magnetic resonance imaging from 1000 asymptomatic volunteers.
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28 November 2018
Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors
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PubMed
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based on heuristic
inferred from PubMed ID database lookup
ACOG committee opinion no. 527: Personalized genomic testing for disease risk
1 reference
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PubMed
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Identifiers
DOI
10.1146/ANNUREV-GENOM-091212-153506
1 reference
stated in
Consolidated OpenCitations Corpus – April 2017
OpenCitations bibliographic resource ID
1725592
Fatcat ID
release_hqgnqwue3vg3bpown5vkhls2ge
0 references
OpenCitations bibliographic resource ID
1725592
1 reference
stated in
Consolidated OpenCitations Corpus – April 2017
OpenCitations bibliographic resource ID
1725592
PMC publication ID
4452115
1 reference
stated in
Consolidated OpenCitations Corpus – April 2017
OpenCitations bibliographic resource ID
1725592
PubMed publication ID
23875796
1 reference
stated in
Consolidated OpenCitations Corpus – April 2017
OpenCitations bibliographic resource ID
1725592
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