
Professor Emeritus
N_IHA Operations
+1 415 476-3786
Publications
Moving toward Equity through Embedded ELSI Ethnography.
The Hastings Center report
Receiving a pathogenic variant in a population breast cancer screening trial: a mixed method study.
Public health genomics
“Mammograms are kind of my pacifier”: The cultural context of women’s preference for annual mammograms in a risk-based screening cohort.
SSM - Qualitative Research in Health
Genetic ancestry and diagnostic yield of exome sequencing in a diverse population.
npj Genomic Medicine
Author Correction: Diagnostic yield of pediatric and prenatal exome sequencing in a diverse population.
npj Genomic Medicine
Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial.
Brain stimulation
The role of polygenic risk scores in breast cancer risk perception and decision-making.
Journal of community genetics
Diagnostic yield of pediatric and prenatal exome sequencing in a diverse population.
npj Genomic Medicine
Diagnostic Yield of Exome Sequencing in a Diverse Pediatric and Prenatal Population is not Associated with Genetic Ancestry.
medRxiv : the preprint server for health sciences
The Challenge of Recruiting Diverse Populations into Health Research: An embedded social science perspective.
New genetics and society
Post-trial access in implanted neural device research: Device maintenance, abandonment, and cost.
Brain stimulation
A qualitative study of unaffected ATM and CHEK2 carriers: How participants make meaning of 'moderate risk' genetic results in a population breast cancer screening trial.
Journal of genetic counseling
Researcher Views on Changes in Personality, Mood, and Behavior in Next-Generation Deep Brain Stimulation.
AJOB neuroscience
Researchers' Ethical Concerns About Using Adaptive Deep Brain Stimulation for Enhancement.
Frontiers in human neuroscience
Perspectives and preferences regarding genomic secondary findings in underrepresented prenatal and pediatric populations: A mixed-methods approach.
Genetics in medicine : official journal of the American College of Medical Genetics
How Ought Decisions That Weigh on Life and Death Be Justly Informed and Governed to Benefit More than the Privileged Few with Access to a Trusted Clinician?
The American journal of bioethics : AJOB
Consensus statement for the perinatal management of patients with alpha thalassemia major.
Blood advances
"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.
New genetics and society
Ethical, Legal, and Social Implications of Fetal Gene Therapy.
Clinical obstetrics and gynecology
The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research.
Genetics in medicine : official journal of the American College of Medical Genetics
Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research.
Frontiers in neuroscience
Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium.
Journal of clinical and translational science
Opportunities and challenges for the computational interpretation of rare variation in clinically important genes.
American journal of human genetics
1027 Diagnostic yield of exome sequencing in prenatal diagnosis.
American journal of obstetrics and gynecology
Toward better governance of human genomic data.
Nature genetics
Researcher Perspectives on Data Sharing in Deep Brain Stimulation.
Frontiers in human neuroscience
Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials.
Frontiers in human neuroscience
Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.
Journal of medical ethics
Clinical Genetics Lacks Standard Definitions and Protocols for the Collection and Use of Diversity Measures.
American journal of human genetics
Conversations on Cancer Chemotherapy Cessation in Patients With Advanced Cancer: Qualitative Findings From a Multi-Institutional Study.
The American journal of hospice & palliative care
904: Agreement to secondary findings with exome sequencing in pre- and postnatal settings.
American journal of obstetrics and gynecology
FDA oversight of NSIGHT genomic research: the need for an integrated systems approach to regulation.
npj Genomic Medicine
Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.
Ethics & human research
Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium.
Personalized medicine
Hospital and Health System Policies Concerning the California End of Life Option Act.
Journal of palliative medicine
Hospital Responses to the End of Life Option Act: Implementation of Aid in Dying in California.
JAMA internal medicine
The Genomic Medicine Integrative Research Framework: A Conceptual Framework for Conducting Genomic Medicine Research.
American journal of human genetics
Consent insufficient for data release.
Science (New York, N.Y.)
Rethinking the "open future" argument against predictive genetic testing of children.
Genetics in medicine : official journal of the American College of Medical Genetics
Characterizing the Biomedical Data-Sharing Landscape.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
The Role of Participants in a Medical Information Commons.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.
AJOB empirical bioethics
The clinical imperative for inclusivity: Race, ethnicity, and ancestry (REA) in genomics.
Human mutation
The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations.
American journal of human genetics
Contending Worldviews in the Clinical Encounter: An Empirical Study of Complementary and Alternative Medicine Deliberations in Contemporary Medical Oncology.
Journal of alternative and complementary medicine (New York, N.Y.)
Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience.
Molecular genetics & genomic medicine
Natural history of lesions suspicious for basal cell carcinoma in older adults in Ikaria, Greece.
The British journal of dermatology
Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.
The Hastings Center report
"Why did I get that part of you?" Understanding addiction genetics through family history.
Public understanding of science (Bristol, England)
Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners.
Journal of empirical research on human research ethics : JERHRE
Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Looking Back, Looking Forward: The Ethical Framing of Complementary and Alternative Medicine in Oncology Over the Last 20 Years.
The oncologist
Physician Perception of Pay Fairness and its Association with Work Satisfaction, Intent to Leave Practice, and Personal Health.
Journal of general internal medicine
Understanding variations in secondary findings reporting practices across U.S. genome sequencing laboratories.
AJOB empirical bioethics
Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium.
Genetics in medicine : official journal of the American College of Medical Genetics
Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience.
The Milbank quarterly
How California Prepared for Implementation of Physician-Assisted Death: A Primer.
American journal of public health
Ten simple rules for responsible big data research.
PLoS computational biology
Returning Results in Biobank Research: Global Trends and Solutions.
Genetic testing and molecular biomarkers
The Experience of Hospital Death: Assessing the Quality of Care at an Academic Medical Center.
The American journal of hospice & palliative care
A taxonomy of medical uncertainties in clinical genome sequencing.
Genetics in medicine : official journal of the American College of Medical Genetics
If you build it, they will come: unintended future uses of organised health data collections.
BMC medical ethics
Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.
American journal of human genetics
Communication predictors and consequences of Complementary and Alternative Medicine (CAM) discussions in oncology visits.
Patient education and counseling
Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.
American journal of human genetics
Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice.
Pediatrics
National survey and community advisory board development for a bipolar disorder biobank.
Bipolar disorders
The media and behavioral genetics: Alternatives coexisting with addiction genetics.
Science, technology & human values
Unwarranted optimism in media portrayals of genetic research on addiction overshadows critical ethical and social concerns.
Journal of health communication
EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California.
Clinical and translational science
Dying in the Hospital: Perspectives of family members.
Journal of palliative care
Linking Broad Consent to Biobank Governance: Support From a Deliberative Public Engagement in California.
The American journal of bioethics : AJOB
Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Have we asked too much of consent?
The Hastings Center report
Ethical, legal, and social implications of incorporating genomic information into electronic health records.
Genetics in medicine : official journal of the American College of Medical Genetics
Stakeholder engagement: a key component of integrating genomic information into electronic health records.
Genetics in medicine : official journal of the American College of Medical Genetics
The Mayo Clinic Biobank: a building block for individualized medicine.
Mayo Clinic proceedings
Point-counterpoint. Ethics and genomic incidental findings.
Science (New York, N.Y.)
Fixing research subjects protection in the United States: moving beyond consent.
Mayo Clinic proceedings
Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?
Public health genomics
Addiction: Current Criticism of the Brain Disease Paradigm.
AJOB neuroscience
Addiction science, meet translational genomics.
Addiction (Abingdon, England)
The experience of addiction as told by the addicted: incorporating biological understandings into self-story.
Culture, medicine and psychiatry
Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
Genetics in medicine : official journal of the American College of Medical Genetics
Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network.
Genetics in medicine : official journal of the American College of Medical Genetics
Framing Nicotine Addiction as a "Disease of the Brain": Social and Ethical Consequences.
Social science quarterly
Impact of direct-to-consumer predictive genomic testing on risk perception and worry among patients receiving routine care in a preventive health clinic.
Mayo Clinic proceedings
"I felt like the angel of death": role conflicts and moral distress among allied professionals employed by the US cardiovascular implantable electronic device industry.
Journal of interventional cardiac electrophysiology : an international journal of arrhythmias and pacing
"Just Because We Can Doesn't Mean We Should": views of nurses on deactivation of pacemakers and implantable cardioverter-defibrillators.
Journal of interventional cardiac electrophysiology : an international journal of arrhythmias and pacing
Integrating genetic studies of nicotine addiction into public health practice: stakeholder views on challenges, barriers and opportunities.
Public health genomics
Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience.
Genome research
Vaccinating health care workers against influenza: the ethical and legal rationale for a mandate.
American journal of public health
Ironic technology: Old age and the implantable cardioverter defibrillator in US health care.
Social science & medicine (1982)
Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.
Genetics in medicine : official journal of the American College of Medical Genetics
Incidental findings in imaging research: evaluating incidence, benefit, and burden.
Archives of internal medicine
'To prove this is the industry's best hope': big tobacco's support of research on the genetics of nicotine addiction.
Addiction (Abingdon, England)
The ethics of characterizing difference: guiding principles on using racial categories in human genetics.
Genome Biology
Topics in transplant ethics.
Transplantation reviews (Orlando, Fla.)
Incidental findings in CT colonography: literature review and survey of current research practice.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Managing incidental findings in human subjects research: analysis and recommendations.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Assessing attitudes about genetic testing as a component of continuing medical education.
Academic psychiatry : the journal of the American Association of Directors of Psychiatric Residency Training and the Association for Academic Psychiatry
Ethical issues in stopping randomized trials early because of apparent benefit.
Annals of internal medicine
Family member involvement in hastened death.
Death studies
Systematic review of ethics consultation: a route to curriculum development in post-graduate medical education.
The American journal of bioethics : AJOB
Nicotine addiction through a neurogenomic prism: ethics, public health, and smoking.
Nicotine & tobacco research : official journal of the Society for Research on Nicotine and Tobacco
Motivations for physician-assisted suicide.
Journal of general internal medicine
Advertising, patient decision making, and self-referral for computed tomographic and magnetic resonance imaging.
Archives of internal medicine
Accounting for culture in a globalized bioethics.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Environmental and genetic determinants of tobacco use: methodology for a multidisciplinary, longitudinal family-based investigation.
Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology
Qualitative methods in end-of-life research: recommendations to enhance the protection of human subjects.
Journal of pain and symptom management
Planning the genome institute's future.
Science (New York, N.Y.)
Dead donors and the "shortage" of human organs: are we missing the point?
The American journal of bioethics : AJOB
"Choice" in end-of-life decision making: researching fact or fiction?
The Gerontologist
Strategies for culturally effective end-of-life care.
Annals of internal medicine
Brain science and social policy.
Cerebrum : the Dana forum on brain science
The meanings of "race" in the new genomics: implications for health disparities research.
Yale journal of health policy, law, and ethics
Why not grant primacy to the family?
The American journal of bioethics : AJOB
Collective fear, individualized risk: the social and cultural context of genetic testing for breast cancer.
Nursing ethics
Rethinking fundamental assumptions: SUPPORT's implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment.
Journal of the American Geriatrics Society
Participation in the cooperative family registry for breast cancer studies: issues of informed consent.
Journal of the National Cancer Institute
Acute profound thrombocytopenia following C7E3 Fab (Abciximab) therapy: case reports, review of the literature and implications for therapy.
American journal of hematology
Spatial and temporal trends of contaminants in Canadian Arctic freshwater and terrestrial ecosystems: a review.
The Science of the total environment
Genetic testing and Alzheimer disease: recommendations of the Stanford Program in Genomics, Ethics, and Society.
Genetic testing
Understanding probabilistic risk in predisposition genetic testing for Alzheimer disease.
Genetic testing
Multicultural considerations in the use of advance directives.
Oncology nursing forum
Informed consent in a multicultural cancer patient population: implications for nursing practice.
Nursing ethics
Genetic testing and Alzheimer disease: has the time come? Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics & Society.
Nature medicine
Genetic testing for BRCA1 and BRCA2: recommendations of the Stanford Program in Genomics, Ethics, and Society. Breast Cancer Working Group.
Journal of Women's Health
Ethical decision-making in critical care in Hong Kong.
Critical care medicine
The difference that culture can make in end-of-life decisionmaking.
Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees
Report of the Northern California Conference for Guidelines on Aid-in-Dying: definitions, differences, convergences, conclusions.
The Western journal of medicine
Understanding the practice of ethics consultation: results of an ethnographic multi-site study.
The Journal of clinical ethics
Reconfiguring nature and culture: intersections of medical anthropology and technoscience studies.
Medical anthropology quarterly
The power (and limits) of proximity.
The Hastings Center report
Organ transplantation (re)examined?
Medical anthropology quarterly
Understanding cultural difference in caring for dying patients.
The Western journal of medicine
Cultural aspects of nondisclosure.
Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees
When is a patient "dying"?
California nurse
Should anencephalic infants be used as organ donors?
California nurse
AIDS and ethics.
Issues in science and technology
Contending Worldviews in the Clinical Encounter: An Empirical Study of Complementary and Alternative Medicine Deliberations in Contemporary Medical Oncology
The Journal of Alternative and Complementary Medicine