Publications

One of the Consortium's primary goals is to produce original intellectual work on the societal implications of biomedicine and the life sciences and we have published widely in areas such as genetics, genomics, and nanomedicine. For example, in April 2012, Genetics in Medicine published a special issue and consensus article from the Consortium that offered the first recommendations on whether and how to discuss individual research results and incidental findings with people who contribute their specimens and data to biobanks and archived data sets.

Below, you can access and download the many symposia and articles generated by the grants we've been awarded.

Published symposia resulting from research

Cover of Genetic Testing and Molecular Biomarkers special issue March 2017

Special Edition

Published In:

Genetic Testing and Molecular Biomarkers
Issue date:

March, 2017

Related Grant:
Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment
Journal of Law, Medicine and Ethics cover, Fall 2015

Should We Offer Genomic Research Results to a Participant's Family, Including After the Participant's Death? 

Published In:

Journal of Law, Medicine & Ethics
Guest Editors:
Susan M. Wolf, Barbara A. Koenig, Gloria M. Petersen
Issue date:

Fall, 2015

Related Grant:
Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment
Cover of Minnesota Journal of Law, Science & Technology Spring 2012

Debating Return of Incidental Findings and Research Results in Genomic Biobank Research — Law, Ethics, and Oversight

Published In:

Minnesota Journal of Law, Science & Technology
Issue date:

Spring, 2012

Related Grant:
Managing Incidental Findings and Research Results in Genomic Biobanks and Archives
Genetics in Medicine April 2012

Returning Incidental Findings and Research Results in Genomic Research with Biobanks & Archives

Published In:

Genetics in Medicine
Guest Editors:
Susan M. Wolf, Brian Van Ness, Frances Lawrenz
Issue date:

April, 2012

Related Grant:
Managing Incidental Findings and Research Results in Genomic Biobanks and Archives
All Symposia

Individual Articles and Publications

All Individual Articles

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. Special Edition. Genetic Testing and Molecular Biomarkers 2017;21(3).
Scholtes E . Incorporating Cost into the Return of Incidental Findings Calculus: Defining a Responsible Default for Genetics and Genomics Researchers. Minnesota Law Review  2016;100(3):1171-1208. Download PDF (231.13 KB)
O'Daniel JM , McLaughlin HM , Amendola LM , Bale SJ , Berg JS , Bick D , Bowling KM , Chao EC , Chung WK , Conlin LK , Cooper GM , Das S , Deignan JL , Dorschner MO , Evans JP , Ghazani AA , Goddard KA , Gornick M , Farwell Hagman KD , Hambuch T , Hegde M , Hindorff LA , Holm IA , Jarvik GP , Knight Johnson A , Mighion L , Morra M , Plon SE , Punj S , Richards CS , Santani A , Shirts BH , Spinner NB , Tang S , Weck KE , Wolf SM , Yang Y , Rehm HL . A Survey of Current Practices for Genomic Sequencing Test Interpretation and Reporting Processes in US Laboratories. Genetics in Medicine 2016;18(11). Download PDF (638.01 KB)
Beskow LM , O'Rourke PP . Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles. Journal of Law, Medicine & Ethics  2015;43(3):502-513. Download PDF (351.95 KB)
Fernandez CV , O'Rourke PP , Beskow LM . Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families. Journal of Law, Medicine & Ethics  2015;43(3):514-522. Download PDF (229.72 KB)
Wolf SM , Berlinger N , Jennings B . Forty Years of Work on End-of-Life Care — From Patients' Rights to Systemic Reform. New England Journal of Medicine 2015;372:678-682. Download PDF (104.47 KB)
Petersen GM , Van Ness B . Returning a Research Participant’s Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks. Journal of Law, Medicine & Ethics  2015;43(3):523-528. Download PDF (146.16 KB)
Scollon S , Bergstrom K , McCullough LB , McGuire AL , Gutierrez S , Kerstein R , Parsons DW , Plon SE . Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject. Journal of Law, Medicine & Ethics  2015;43(3):529-537. Download PDF (169.82 KB)

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