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  1.  37
    Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.Carmen Radecki Breitkopf, Gloria M. Petersen, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Deborah R. Gordon, Noralane M. Lindor & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):464-475.
    Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.
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  2.  22
    “If relatives inherited the gene, they should inherit the data.” Bringing the family into the room where bioethics happens.Deborah R. Gordon & Barbara A. Koenig - 2022 - New Genetics and Society 41 (1):23-46.
    Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual’s genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant’s genetic results, since prevailing US practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics – in which genetic information, privacy, and autonomy are considered to be familial – (...)
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  3.  36
    Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.Deborah R. Gordon, Carmen Radecki Breitkopf, Marguerite Robinson, Wesley O. Petersen, Jason S. Egginton, Kari G. Chaffee, Gloria M. Petersen, Susan M. Wolf & Barbara A. Koenig - 2019 - AJOB Empirical Bioethics 10 (1):1-22.
    Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. (...)
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  4.  38
    Beyond Pathologizing Harm: Understanding PTSD in the Context of War Experience.Patricia Benner, Jodi Halpern, Deborah R. Gordon, Catherine Long Popell & Patricia W. Kelley - 2018 - Journal of Medical Humanities 39 (1):45-72.
    An alternative to objectifying approaches to understanding Post-traumatic Stress Disorder grounded in hermeneutic phenomenology is presented. Nurses who provided care for soldiers injured in the Iraq and Afghanistan wars, and sixty-seven wounded male servicemen in the rehabilitation phase of their recovery were interviewed. PTSD is the one major psychiatric diagnosis where social causation is established, yet PTSD is predominantly viewed in terms of the usual neuro-physiological causal models with traumatic social events viewed as pathogens with dose related effects. Biologic models (...)
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