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

jlme

Published In

Journal of Law, Medicine & Ethics

Guest Editors

Barbara A. Koenig

Gloria M. Petersen

Issue

Fall, 2015

Issue Number

3

Volume

43

Symposium Articles

Introduction: Return of Research Results: What About the Family?

Returning a Research Participant’s Genomic Results to Relatives: Analysis and Recommendations

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

Patients’ Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death

Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide

Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families

Returning a Research Participant’s Genomic Results to Relatives: Analysis and Recommendations

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject

How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?

A Family-Centered Model for Sharing Genetic Risk

Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the “Benefit to Families”

Return of Results from Research Using Newborn Screening Dried Blood Samples

Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents

International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access