Henry T. (Hank) Greely
Deane F. and Kate Edelman Johnson Professor of Law and, Professor, by courtesy, of Genetics
Stanford Law School
Bio
Henry T. "Hank" Greely is the Deane F. and Kate Edelman Johnson Professor of Law and Professor, by courtesy, of Genetics at Stanford University. He specializes in ethical, legal, and social issues arising from advances in the biosciences, particularly from genetics, neuroscience, and human stem cell research. He chairs the California Advisory Committee on Human Stem Cell Research and the steering committee of the Stanford University Center for Biomedical Ethics, and directs the Stanford Center for Law and the Biosciences and the Stanford Program in Neuroscience and Society. He serves as a member of the NAS Committee on Science, Technology, and Law; the NIGMS Advisory Council, the Institute of Medicine’s Neuroscience Forum, and the NIH Multi-Center Working Group on the BRAIN Initiative. Professor Greely graduated from Stanford in 1974 and from Yale Law School in 1977. He served as a law clerk for Judge John Minor Wisdom on the United States Court of Appeals for the Fifth Circuit and for Justice Potter Stewart of the United States Supreme Court. He began teaching at Stanford in 1985.
Academic Appointments
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Professor, Stanford Law School
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Professor (By courtesy), Genetics
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Member, Bio-X
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Faculty Affiliate, Institute for Human-Centered Artificial Intelligence (HAI)
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Member, Stanford Cancer Institute
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Member, Wu Tsai Neurosciences Institute
Administrative Appointments
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Director, Stanford Program in Neuroscience and Society (2014 - Present)
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Member, Executive Committee, Stanford Center for Computational, Evolutionary, and Human Genomics (2013 - Present)
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Member, IRB 3 (2009 - 2013)
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Member, Advisory Committee, Stanford Program in Genetic Counseling (2008 - Present)
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Member, Advisory Committee, Program in Science, Technology, and Society (2007 - Present)
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Member, Stanford Stem Cell Research Oversight Committee (2006 - 2013)
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Member, Bio-X Faculty Leadership Council (2005 - Present)
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Member, Advisory Committee, Program in Regenerative Medicine (2005 - 2010)
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Director, Center for Law and the Biosciences (2004 - Present)
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Chair, Stanford Faculty Senate (2002 - 2003)
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Chair, Steering Committee, Stanford Center for Biomedical Ethics (1997 - Present)
Honors & Awards
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Fellow, American Association for the Advancement of Science (2007)
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Richard M. Lyman Award, Stanford University (2013)
Boards, Advisory Committees, Professional Organizations
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President, International Neuroethics Society (2017 - Present)
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Board of Directors, International Neuroethics Society (2006 - Present)
Program Affiliations
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Public Policy
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Science, Technology and Society
Professional Education
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JD, Yale University, Law (1977)
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AB, Stanford University, Political Science (1974)
Community and International Work
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Neuroscience Forum, Institute of Medicine, Washington, D.C.
Location
US
Ongoing Project
Yes
Opportunities for Student Involvement
No
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Multi-Council Working Group, NIH BRAIN Initiative, Bethesda, MD
Location
US
Ongoing Project
No
Opportunities for Student Involvement
No
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National Academy of Sciences Commitee on Science, Technology, and Law, Washington, D.C.
Location
US
Ongoing Project
Yes
Opportunities for Student Involvement
No
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National Advisory Committee, National Institute for General Medical Sciences, Bethesda, MD
Location
US
Ongoing Project
Yes
Opportunities for Student Involvement
No
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California Advisory Committee on Human Stem Cell Research
Location
California
Ongoing Project
Yes
Opportunities for Student Involvement
No
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Neuroethics Society
Ongoing Project
Yes
Opportunities for Student Involvement
No
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HGDP/CEPH World Cell Collection
Ongoing Project
Yes
Opportunities for Student Involvement
No
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Law and Neuroscience Project
Ongoing Project
No
Opportunities for Student Involvement
No
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Human Genome Diversity Project
Ongoing Project
No
Opportunities for Student Involvement
No
Current Research and Scholarly Interests
My current interests in neuroscience involve the consequences of advances in neurosciences for 1) predicting future diseases or traits; 2) reading minds to allow detection of subjective mental states such as pain, recognition, bias, or memory; 3) "treating" non-disease traits; 4) cognitive enhancement; 5) detecting consciousness and handling issues around disorders of consciousness; and 6) issues of responsibility.
My current interests in human genetics focus on 1) prenatal genetic diagnosis, 2) the effects of widespread adoption of clinical whole genome sequencing, and 3) ethical, legal, and social issues in genomic biobanks.
In stem cell research, I am currently interested in 1) legal challenges to stem cell research and 2) issues around human/non-human chimeras.
My interests in human research protections, biological enhancement, and the future of reproduction draw on, and involve, all three of the substantive fields described above.
2024-25 Courses
- Discussion (1L): Human Reproduction in the 21st Century: Legal and Ethical Issues
LAW 240Q (Aut) - Introduction to American Law
LAW 8021 (Aut) - Introduction to Law and the Biosciences
LAW 3012 (Spr) - Law and Biosciences Workshop
LAW 3005 (Aut, Spr) - Law and the Biosciences
GENE 104Q (Aut) - The Future of Global Human Reproduction: Ethics, Law, Science, and Society
OSPMADRD 87M (Win) -
Independent Studies (7)
- Directed Reading in Genetics
GENE 299 (Aut, Win, Spr, Sum) - Directed Research
LAW 400 (Win) - Graduate Research
GENE 399 (Aut, Win, Spr, Sum) - Medical Scholars Research
GENE 370 (Aut, Win, Spr, Sum) - Senior Honors Tutorial
SYMSYS 190 (Win) - Supervised Study
GENE 260 (Aut, Win, Spr, Sum) - Undergraduate Research
GENE 199 (Aut, Win, Spr, Sum)
- Directed Reading in Genetics
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Prior Year Courses
2023-24 Courses
- Discussion (1L): Human Reproduction in the 21st Century: Legal and Ethical Issues
LAW 240Q (Aut) - Introduction to American Law
LAW 8021 (Aut) - Law and Biosciences Workshop
LAW 3005 (Win, Spr) - Law and Biosciences: Neuroscience
HRP 211 (Win) - Law and Biosciences: Neuroscience
LAW 3006 (Win) - Law and the Biosciences
GENE 104Q (Aut)
2022-23 Courses
- Biology and Applications of CRISPR/Cas9: Genome Editing and Epigenome Modifications
BIOS 268, GENE 268 (Spr) - Discussion (1L): Human Reproduction in the 21st Century: Legal and Ethical Issues
LAW 240Q (Aut) - Health Law: The FDA
HRP 209 (Spr) - Health Law: The FDA
LAW 3003 (Spr) - Introduction to American Law
LAW 8021 (Aut) - Introduction to Law and the Biosciences
HRP 276 (Win) - Introduction to Law and the Biosciences
LAW 3012 (Win) - Law and Biosciences Workshop
LAW 3005 (Win, Spr) - Law and the Biosciences
GENE 104Q (Spr)
2021-22 Courses
- Biology and Applications of CRISPR/Cas9: Genome Editing and Epigenome Modifications
BIOS 268, GENE 268 (Spr) - Discussion (1L): Human Reproduction in the 21st Century: Legal and Ethical Issues
LAW 240Q (Aut) - Introduction to American Law
LAW 8021 (Aut) - Law and Biosciences Workshop
LAW 3005 (Win, Spr) - Law and Biosciences: Genetics
LAW 3004 (Win) - Law and the Biosciences
GENE 104Q (Aut) - Law and the Biosciences: Genetics
HRP 221 (Win)
- Discussion (1L): Human Reproduction in the 21st Century: Legal and Ethical Issues
All Publications
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Neuroscience and the Criminal Justice System
ANNUAL REVIEW OF CRIMINOLOGY, VOL 2
2019; 2: 451–71
View details for DOI 10.1146/annurev-criminol-011518-024433
View details for Web of Science ID 000456392800020
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Neuroethics Guiding Principles for the NIH BRAIN Initiative.
The Journal of neuroscience : the official journal of the Society for Neuroscience
2018; 38 (50): 10586–88
View details for DOI 10.1523/JNEUROSCI.2077-18.2018
View details for PubMedID 30541767
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The ethics of experimenting with human brain tissue.
Nature
2018; 556 (7702): 429–32
View details for DOI 10.1038/d41586-018-04813-x
View details for PubMedID 29691509
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HUMAN REPRODUCTION IN THE TWENTY-FIRST CENTURY
JOURNAL OF POSTHUMAN STUDIES-PHILOSOPHY TECHNOLOGY MEDIA
2017; 1 (2): 205–23
View details for Web of Science ID 000450281800007
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Stem cells and interspecies chimaeras
NATURE
2016; 540 (7631): 51-59
Abstract
Chimaeras are both monsters of the ancient imagination and a long-established research tool. Recent advances, particularly those dealing with the identification and generation of various kinds of stem cells, have broadened the repertoire and utility of mammalian interspecies chimaeras and carved out new paths towards understanding fundamental biology as well as potential clinical applications.
View details for DOI 10.1038/nature20573
View details for Web of Science ID 000388916600047
View details for PubMedID 27905428
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CRISPR Critters and CRISPR Cracks
AMERICAN JOURNAL OF BIOETHICS
2015; 15 (12): 11-17
Abstract
This essay focuses on possible nonhuman applications of CRISPR/Cas9 that are likely to be widely overlooked because they are unexpected and, in some cases, perhaps even "frivolous." We look at five uses for "CRISPR Critters": wild de-extinction, domestic de-extinction, personal whim, art, and novel forms of disease prevention. We then discuss the current regulatory framework and its possible limitations in those contexts. We end with questions about some deeper issues raised by the increased human control over life on earth offered by genome editing.
View details for DOI 10.1080/15265161.2015.1104138
View details for Web of Science ID 000365709900003
View details for PubMedID 26632355
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Broad Consent for Research With Biological Samples: Workshop Conclusions
AMERICAN JOURNAL OF BIOETHICS
2015; 15 (9): 34-42
Abstract
Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.
View details for DOI 10.1080/15265161.2015.1062162
View details for Web of Science ID 000360555700011
View details for PubMedCentralID PMC4791589
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Biotechnology. A prudent path forward for genomic engineering and germline gene modification.
Science
2015; 348 (6230): 36-38
View details for DOI 10.1126/science.aab1028
View details for PubMedID 25791083
View details for PubMedCentralID PMC4394183
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The History of Patenting Genetic Material
ANNUAL REVIEW OF GENETICS, VOL 49
2015; 49: 161-182
View details for DOI 10.1146/annurev-genet-112414-054731
View details for Web of Science ID 000367291000008
- Ethical Issues in Clinical Genetics and Genomics GENOMIC APPLICATIONS IN PATHOLOGY Springer. 2014
- Human/Nonhuman Chimeras: Assessing the Issues OXFORD HANDBOOK OF ANIMAL ETHICS (ed. Tom Beauchamp and R.G. Frey, Oxford Univ. Press) 2011
- Reference Guide on Neuroscience REFERENCE MANUAL ON SCIENTIFIC EVIDENCE (Federal Judicial Center and National Academies Press) 2011
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Challenges in the clinical application of whole-genome sequencing
LANCET
2010; 375 (9727): 1749-1751
View details for DOI 10.1016/S0140-6736(10)60599-5
View details for Web of Science ID 000277890200036
View details for PubMedID 20434765
- Law and the Revolution in Neuroscience: An Early Look at the Field AKRON L. REV. 42:687-715 2009
- Remarks on Human Biological Enhancement U. KAN. L. REV. 56:1139-1157 2008
- Towards Responsible Use of Cognitive-Enhancing Drugs by the Healthy, NATURE 456:702-05 2008
- Within You, Without You in IMAGINING SCIENCE: ART, SCIENCE, AND SOCIAL CHANGE (ed. T. Caulfield and S. Caulfield, University of Alberta Press 2008
- Genetic Genealogy: Genetics Meets the Marketplace in REVISITING RACE IN A GENOMIC AGE 271-299 (eds. Barbara A. Koenig, Sandra Soo-Jin Lee, and Sarah Richardson; Rutgers University Press) 2008
- Neuroscience and Criminal Justice: Not Responsibility but Treatment U. KAN. L. REV. 56:1103-1138 2008
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Thinking about the human neuron mouse
AMERICAN JOURNAL OF BIOETHICS
2007; 7 (5): 27-40
View details for DOI 10.1080/15265160701290371
View details for Web of Science ID 000246830100009
View details for PubMedID 17497502
View details for PubMedCentralID PMC2220020
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Neuroscience-based lie detection: The urgent need for regulation
AMERICAN JOURNAL OF LAW & MEDICINE
2007; 33 (2-3): 377-431
View details for Web of Science ID 000249145500011
View details for PubMedID 17910165
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Family ties: The use of DNA offender databases to catch offenders' kin
Workshop on DNA Fingerprinting and Civil Liberties
WILEY-BLACKWELL. 2006: 248-?
View details for Web of Science ID 000237405100011
View details for PubMedID 16789947
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Toward a framework for risk mitigation of potential misuse of artificial intelligence in biomedical research
NATURE MACHINE INTELLIGENCE
2024
View details for DOI 10.1038/s42256-024-00926-3
View details for Web of Science ID 001363449700001
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The NIH BRAIN Initiative: Integrating Neuroethics and Neuroscience.
Neuron
2019; 101 (3): 394–98
Abstract
The NIH Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative is focused on developing new tools and neurotechnologies to transform our understanding of the brain, and neuroethics is an essential component of this research effort. Coordination with other brain projects around the world will help maximize success.
View details for DOI 10.1016/j.neuron.2019.01.024
View details for PubMedID 30731065
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Data mining for health: staking out the ethical territory of digital phenotyping
NPJ DIGITAL MEDICINE
2018; 1
View details for DOI 10.1038/s41746-018-0075-8
View details for Web of Science ID 000453910600001
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Neuroethics and the NIH BRAIN Initiative
JOURNAL OF RESPONSIBLE INNOVATION
2018; 5 (1): 122–30
View details for DOI 10.1080/23299460.2017.1319035
View details for Web of Science ID 000434460500010
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Challenges and recommendations for epigenomics in precision health
NATURE BIOTECHNOLOGY
2017; 35 (12): 1128–32
View details for PubMedID 29220033
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Creating a data resource: what will it take to build a medical information commons?
GENOME MEDICINE
2017; 9: 84
Abstract
National and international public-private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.
View details for PubMedID 28938910
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Neuroethics in the Age of Brain Projects.
Neuron
2016; 92 (3): 637-641
Abstract
Neuroscience advances have brought important ethical questions. The recent launch of two large brain projects, the United States BRAIN Initiative and the European Union Human Brain Project, should accelerate progress in understanding the brain. This article examines neuroethics in those two projects, as well as its exploration by other efforts.
View details for DOI 10.1016/j.neuron.2016.10.048
View details for PubMedID 27810008
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Accelerating stem cell trials for Alzheimer's disease
LANCET NEUROLOGY
2016; 15 (2): 219-230
View details for DOI 10.1016/S1474-4422(15)00332-4
View details for Web of Science ID 000368116000019
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Accelerating stem cell trials for Alzheimer's disease.
The Lancet. Neurology
2015
Abstract
At present, no effective cure or prophylaxis exists for Alzheimer's disease. Symptomatic treatments are modestly effective and offer only temporary benefit. Advances in induced pluripotent stem cell (iPSC) technology have the potential to enable development of so-called disease-in-a-dish personalised models to study disease mechanisms and reveal new therapeutic approaches, and large panels of iPSCs enable rapid screening of potential drug candidates. Different cell types can also be produced for therapeutic use. In 2015, the US Food and Drug Administration granted investigational new drug approval for the first phase 2A clinical trial of ischaemia-tolerant mesenchymal stem cells to treat Alzheimer's disease in the USA. Similar trials are either underway or being planned in Europe and Asia. Although safety and ethical concerns remain, we call for the acceleration of human stem cell-based translational research into the causes and potential treatments of Alzheimer's disease.
View details for DOI 10.1016/S1474-4422(15)00332-4
View details for PubMedID 26704439
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Marginally scientific? Genetic testing of children and adolescents for lifestyle and health promotion.
Journal of law and the biosciences
2015; 2 (3): 627-644
View details for PubMedID 27774215
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CRISPR germline engineering-the community speaks
NATURE BIOTECHNOLOGY
2015; 33 (5): 478-486
View details for DOI 10.1038/nbt.3227
View details for Web of Science ID 000354314500025
View details for PubMedID 25965754
- Neuroscience, Mindreading, and the Courts: The Example of Pain J. HEALTH CARE L. & POL. 2015; 18: 171-205
- 23andMe, the Food and Drug Administration, and the Future of Genetic Testing JAMA Internal Medicine 2014; 174: 403-04
- The Strange Allure of Right to Try Laws JAMA Internal Medicine 2014; 174: 1885-86
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Law and Neuroscience
JOURNAL OF NEUROSCIENCE
2013; 33 (45): 17624-17630
View details for DOI 10.1523/JNEUROSCI.3254-13.2013
View details for Web of Science ID 000327019100011
View details for PubMedID 24198354
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Best ethical practices for clinicians and laboratories in the provision of noninvasive prenatal testing.
Prenatal diagnosis
2013; 33 (7): 656-661
Abstract
OBJECTIVE: The goal of this study is to provide an ethical framework for clinicians and companies providing noninvasive prenatal testing using cell-free fetal DNA or whole fetal cells. METHOD: In collaboration with a National Institutes of Health-supported research ethics consultation committee together with feedback from an interdisciplinary group of clinicians, members of industry, legal experts, and genetic counselors, we developed a set of best practices for the provision of noninvasive prenatal genetic testing. RESULTS: Principal recommendations include the amendment of current informed consent procedures to include attention to the noninvasive nature of new testing and the potential for a broader range of results earlier in the pregnancy. We strongly recommend that tests should only be provided through licensed medical providers and not directly to consumers. CONCLUSION: Prenatal tests, including new methods using cell-free fetal DNA, are not currently regulated by government agencies, and limited professional guidance is available. In the absence of regulation, companies and clinicians should cooperate to adopt responsible best ethical practices in the provision of these tests. © 2013 John Wiley & Sons, Ltd.
View details for DOI 10.1002/pd.4144
View details for PubMedID 23613322
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Some first steps toward responsible use of cognitive-enhancing drugs by the healthy.
American journal of bioethics
2013; 13 (7): 39-41
View details for DOI 10.1080/15265161.2013.795823
View details for PubMedID 23767438
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What If Extinction Is Not Forever?
SCIENCE
2013; 340 (6128): 32-33
View details for DOI 10.1126/science.1236965
View details for Web of Science ID 000317061100031
View details for PubMedID 23559235
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Assessing ESCROs: Yesterday and Tomorrow
AMERICAN JOURNAL OF BIOETHICS
2013; 13 (1): 44-52
View details for DOI 10.1080/15265161.2013.747340
View details for Web of Science ID 000315983000018
View details for PubMedID 23311845
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NEUROSCIENCE, RESPONSIBILITY, AND THE LAW
MIT PRESS. 2013: 29
View details for Web of Science ID 000317030500041
- Mindreading, Neuroscience, and the Law A Primer on Law and Neuroscience Oxford University PressH. 2013
- The Future of Gene Patents and the Implications for Medicine JAMA Internal Medicine 2013; 173: 1569-70
- The Henrietta Lacks legacy grows EMBO Reports 2013; 14: 849
- Human Germ Cell Induction Research Cell Stem Cell 2013; 13 (2): 145-48
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What If? The Farther Shores of Neuroethics Commentary on "Neuroscience May Supersede Ethics and Law"
SCIENCE AND ENGINEERING ETHICS
2012; 18 (3): 439-446
Abstract
Neuroscience is clearly making enormous progress toward understanding how human brains work. The implications of this progress for ethics, law, society, and culture are much less clear. Some have argued that neuroscience will lead to vast changes, superseding much of law and ethics. The likely limits to the explanatory power of neuroscience argue against that position, as do the limits to the social relevance of what neuroscience will be able to explain. At the same time neuroscience is likely to change societies through increasing their abilities to predict future behavior, to infer subjective mental states by observing physical brain states ("read minds"), to provide evidence in some cases relevant to criminal responsibility, to provide new ways to intervene to "treat antisocial brains," and to enhance healthy brains. Neuroscience should make important cultural changes in our special, and specially negative, views of "mental" versus "physical" illness by showing that mental illness is a dysfunction of a physical organ. It will not likely change our beliefs, implicit or explicit, in free will, or spark a new conflict between science and religion akin to the creationism controversy.
View details for DOI 10.1007/s11948-012-9391-6
View details for Web of Science ID 000310471900003
View details for PubMedID 22926427
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Informational risk, institutional review, and autonomy in the proposed changes to the common rule.
IRB
2012; 34 (3): 17-19
View details for PubMedID 22830179
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Direct Brain Interventions to "Treat" Disfavored Human Behaviors: Ethical and Social Issues
CLINICAL PHARMACOLOGY & THERAPEUTICS
2012; 91 (2): 163-165
Abstract
As neuroscience learns more about the causes of human behaviors, it will give us new ways to change those behaviors. When behaviors are caused by "brain diseases," effective actions that intervene directly in the brain will be readily accepted, but what about direct brain interventions that treat brain-based causes of socially disfavored behaviors that are not generally viewed as diseases?
View details for DOI 10.1038/clpt.2011.292
View details for Web of Science ID 000299654000011
View details for PubMedID 22261682
- The P300 Event-Related Potential (ERP) in Detection of Deception: Review and Legal Issues ENCYCLOPEDIA OF FORENSIC SCIENCE 2012
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Noninvasive prenatal diagnosis: pregnant women's interest and expected uptake
PRENATAL DIAGNOSIS
2011; 31 (13): 1292-1299
Abstract
To investigate pregnant women's level of future interest in noninvasive prenatal diagnosis (NIPD) and what factors might affect expected uptake of this testing.Written questionnaires were administered to women in their third trimester.One hundred fourteen women returned the questionnaire (80.9% response rate). Of these, 71.9% reported interest in NIPD, 22.7% were ambivalent, and 5.4% were uninterested. Safety of the fetus was the single most important factor in 75% of women's decisions. Factors associated with increased interest in NIPD included: older age (p = 0.036), higher education (p = 0.013), Caucasian or Asian ethnicity (p = 0.011), and higher likelihood to terminate an affected pregnancy (p = 0.002). Nearly 20% of women reported that they would do whatever their doctor recommended regarding NIPD, and 94.4% of women wished to meet with a genetic counselor at some point to discuss NIPD.The majority of pregnant women report hypothetical interest in NIPD, primarily because of increased safety for the fetus, although a significant minority are uninterested or ambivalent. Discussions with healthcare providers regarding NIPD, and their recommendations, are likely to be an important factor in women's decisions about this testing. As such, adequate discussion of the implications of prenatal diagnostic testing will be critical.
View details for DOI 10.1002/pd.2888
View details for Web of Science ID 000298566900013
View details for PubMedID 22028097
View details for PubMedCentralID PMC3225485
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Reading minds with neuroscience - Possibilities for the law
CORTEX
2011; 47 (10): 1254-1255
View details for DOI 10.1016/j.cortex.2011.04.018
View details for Web of Science ID 000296930600015
View details for PubMedID 21676386
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The future of direct-to-consumer clinical genetic tests
NATURE REVIEWS GENETICS
2011; 12 (7): 511-515
Abstract
In light of the meeting of the US Food and Drug Administration (FDA) in March 2011 to discuss the regulation of clinical direct-to-consumer (DTC) genetic tests, we have invited five experts to consider the best means of overseeing the ordering and interpretation of these tests. Should these tests be regulated? If so, who, if anyone, should communicate results to consumers?
View details for DOI 10.1038/nrg3026
View details for Web of Science ID 000292814500013
View details for PubMedID 21629275
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Medical and graduate students' attitudes toward personal genomics
GENETICS IN MEDICINE
2011; 13 (5): 400-408
Abstract
Medical schools are being approached by direct-to-consumer genotyping companies about genotyping faculty or trainees as a method to "teach" them about the potential implications of genotyping. In thinking about the future incorporation of genotyping into a graduate level genetics course, the purpose of this study was 2-fold: first, to assess knowledge, attitudes, and beliefs of students toward personal genomics as it related to themselves as both as customers and future physicians and as it related to consumers at large, and second, to determine the impact of the course (as taught without genotyping) on knowledge, attitudes, and beliefs.We surveyed first-year medical students and graduate students before and after a core genetics course.After the course, students were less likely to believe that genotyping information would be useful to physicians, patients, or consumers; genotyping would provide information to improve their own personal health; or personal genomic testing services are diagnostic of medical conditions. They were more likely to answer knowledge questions accurately after the course but still had difficulty with clinical interpretation. Despite these changes, a slight majority of students were, and remained, interested in undergoing genotyping themselves. Of note, the number who believed genotyping "would help them understand genetic concepts better than someone else's data" decreased. General curiosity was the most commonly chosen reason for interest in undergoing genotyping, and approximately 50% of respondents expressed concern about confidentiality of results.In conclusion, even without the genotyping process, an educational program about genotyping increased knowledge, particularly about the clinical limitations of genotyping, but student interest in genotyping did not significantly change. Institutions thinking about offering genotyping to their students as part of a learning experience should consider the pros and cons of doing so.
View details for DOI 10.1097/GIM.0b013e31820562f6
View details for Web of Science ID 000290435700005
View details for PubMedID 21270640
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Get ready for the flood of fetal gene screening
NATURE
2011; 469 (7330): 289-291
View details for Web of Science ID 000286385600018
View details for PubMedID 21248817
- What Will Be The Limits of Neuroscience-Based Mindreading in the Law? THE OXFORD HANDBOOK OF NEUROETHICS (ed. Judy Illes and Barbara Sahakian, Oxford Univ. Press) 2011
- Neuroscience and Criminal Responsibility: Proving ?Can?t Help Himself? as a Narrow Bar to Criminal Liability LAW AND NEUROSCIENCE, CURRENT LEGAL ISSUES 2010, VOL. 13 (ed. Michael Freeman, Oxford University Press) 2011
- Of Nails and Hammers: Human Biological Enhancement and American Policy Tools ENHANCING HUMAN CAPACITIES (ed. Ruud ter Meulen, Julian Savulescu, Guy Kahane, Wiley Blackwell) 2011
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To Tell the Truth
SCIENTIFIC AMERICAN
2010; 303 (6): 18
View details for PubMedID 21141350
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Detecting individual memories through the neural decoding of memory states and past experience
PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA
2010; 107 (21): 9849-9854
Abstract
A wealth of neuroscientific evidence indicates that our brains respond differently to previously encountered than to novel stimuli. There has been an upswell of interest in the prospect that functional MRI (fMRI), when coupled with multivariate data analysis techniques, might allow the presence or absence of individual memories to be detected from brain activity patterns. This could have profound implications for forensic investigations and legal proceedings, and thus the merits and limitations of such an approach are in critical need of empirical evaluation. We conducted two experiments to investigate whether neural signatures of recognition memory can be reliably decoded from fMRI data. In Exp. 1, participants were scanned while making explicit recognition judgments for studied and novel faces. Multivoxel pattern analysis (MVPA) revealed a robust ability to classify whether a given face was subjectively experienced as old or new, as well as whether recognition was accompanied by recollection, strong familiarity, or weak familiarity. Moreover, a participant's subjective mnemonic experiences could be reliably decoded even when the classifier was trained on the brain data from other individuals. In contrast, the ability to classify a face's objective old/new status, when holding subjective status constant, was severely limited. This important boundary condition was further evidenced in Exp. 2, which demonstrated that mnemonic decoding is poor when memory is indirectly (implicitly) probed. Thus, although subjective memory states can be decoded quite accurately under controlled experimental conditions, fMRI has uncertain utility for objectively detecting an individual's past experiences.
View details for DOI 10.1073/pnas.1001028107
View details for Web of Science ID 000278054700067
View details for PubMedID 20457911
View details for PubMedCentralID PMC2906873
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Clinical assessment incorporating a personal genome
LANCET
2010; 375 (9725): 1525-1535
Abstract
The cost of genomic information has fallen steeply, but the clinical translation of genetic risk estimates remains unclear. We aimed to undertake an integrated analysis of a complete human genome in a clinical context.We assessed a patient with a family history of vascular disease and early sudden death. Clinical assessment included analysis of this patient's full genome sequence, risk prediction for coronary artery disease, screening for causes of sudden cardiac death, and genetic counselling. Genetic analysis included the development of novel methods for the integration of whole genome and clinical risk. Disease and risk analysis focused on prediction of genetic risk of variants associated with mendelian disease, recognised drug responses, and pathogenicity for novel variants. We queried disease-specific mutation databases and pharmacogenomics databases to identify genes and mutations with known associations with disease and drug response. We estimated post-test probabilities of disease by applying likelihood ratios derived from integration of multiple common variants to age-appropriate and sex-appropriate pre-test probabilities. We also accounted for gene-environment interactions and conditionally dependent risks.Analysis of 2.6 million single nucleotide polymorphisms and 752 copy number variations showed increased genetic risk for myocardial infarction, type 2 diabetes, and some cancers. We discovered rare variants in three genes that are clinically associated with sudden cardiac death-TMEM43, DSP, and MYBPC3. A variant in LPA was consistent with a family history of coronary artery disease. The patient had a heterozygous null mutation in CYP2C19 suggesting probable clopidogrel resistance, several variants associated with a positive response to lipid-lowering therapy, and variants in CYP4F2 and VKORC1 that suggest he might have a low initial dosing requirement for warfarin. Many variants of uncertain importance were reported.Although challenges remain, our results suggest that whole-genome sequencing can yield useful and clinically relevant information for individual patients.National Institute of General Medical Sciences; National Heart, Lung And Blood Institute; National Human Genome Research Institute; Howard Hughes Medical Institute; National Library of Medicine, Lucile Packard Foundation for Children's Health; Hewlett Packard Foundation; Breetwor Family Foundation.
View details for Web of Science ID 000277655100025
View details for PubMedID 20435227
- Technology Law: What Is It? ? And What Should It Be ), JOURNAL OF TECHNOLOGY LAW AND POLICY 15:1-8 2010
- , CONDUCTING BIOSOCIAL SURVEYS: COLLECTING, STORING, ACCESSING AND PROTECTING BIOSPECIMENS AND BIODATA (eds. Robert M. Hauser, Maxine Weinstein, Robert Pool, and Barney Cohen; National Academies Press, Washington, D.C. ) 2010
- From Nuremberg to the Human Genome: The Rights of Human Research Participants MEDICINE AFTER THE HOLOCAUST: FROM THE MASTER RACE TO THE HUMAN GENOME AND BEYOND 185-200 (ed. Sheldon Rubenfeld, Palgrave, New York) 2010
- The Coming Revolution in Prenatal Genetic Testing PROFESSIONAL ETHICS REPORT, 23(2):1-3 (Spring 2010). 2010
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To the Barricades!
AMERICAN JOURNAL OF BIOETHICS
2010; 10 (9): 1-2
View details for DOI 10.1080/15265161.2010.494229
View details for Web of Science ID 000281606800002
View details for PubMedID 20818543
- Enhancing Brains: What Are We Worried About? Cerebrum (July 2010), at http://dana.org/news/cerebrum/detail.aspx?id=28786 2010
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Unintended Changes in Cognition, Mood, and Behavior Arising from Cell-Based Interventions for Neurological Conditions: Ethical Challenges
AMERICAN JOURNAL OF BIOETHICS
2009; 9 (5): 31-36
Abstract
The prospect of using cell-based interventions (CBIs) to treat neurological conditions raises several important ethical and policy questions. In this target article, we focus on issues related to the unique constellation of traits that characterize CBIs targeted at the central nervous system. In particular, there is at least a theoretical prospect that these cells will alter the recipients' cognition, mood, and behavior-brain functions that are central to our concept of the self. The potential for such changes, although perhaps remote, is cause for concern and careful ethical analysis. Both to enable better informed consent in the future and as an end in itself, we argue that early human trials of CBIs for neurological conditions must monitor subjects for changes in cognition, mood, and behavior; further, we recommend concrete steps for that monitoring. Such steps will help better characterize the potential risks and benefits of CBIs as they are tested and potentially used for treatment.
View details for DOI 10.1080/15265160902788645
View details for Web of Science ID 000266144900012
View details for PubMedID 19396681
- Unintended Changes in Cognition, Mood, and Behavior Arising from Cell-Based Interventions for Neurological Conditions: Ethical Challenges AJOB: NEUROSCIENCE 9(5):31-36 2009
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The role of animal models in evaluating reasonable safety and efficacy for human trials of cell-based interventions for neurologic conditions
JOURNAL OF CEREBRAL BLOOD FLOW AND METABOLISM
2009; 29 (1): 1-9
Abstract
Progress in regenerative medicine seems likely to produce new treatments for neurologic conditions that use human cells as therapeutic agents; at least one trial for such an intervention is already under way. The development of cell-based interventions for neurologic conditions (CBI-NCs) will likely include preclinical studies using animals as models for humans with conditions of interest. This paper explores predictive validity challenges and the proper role for animal models in developing CBI-NCs. In spite of limitations, animal models are and will remain an essential tool for gathering data in advance of first-in-human clinical trials. The goal of this paper is to provide a realistic lens for viewing the role of animal models in the context of CBI-NCs and to provide recommendations for moving forward through this challenging terrain.
View details for DOI 10.1038/jcbfm.2008.98
View details for Web of Science ID 000262110200001
View details for PubMedID 18728679
View details for PubMedCentralID PMC2682696
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Collecting Biomeasures in the Panel Study of Income Dynamics: Ethical and Legal Concerns
Conference on the Scientific Assessment of the Value of Biomeasures in the Panel Study of Income Dynamics
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD. 2009: 270–88
Abstract
As social surveys like the Panel Study of Income Dynamics (PSID) consider adding biomeasures to their data collections, they will face complicated ethical, legal, and practical issues. Both fairly and not, research participants are likely to be more concerned about their biomeasures than about their social data. This heightened concern will force investigators to pay more attention to difficult issues such as the research participant's control over subsequent uses of the samples or data, the participant's right to withdraw from the project, protection of the research participant's privacy, return to the participant of important risk information gained through the research, some special issues involving children and families, and the process of informed consent. Investigators can navigate these issues successfully, but the effort will demand time, careful thought, and attention.
View details for DOI 10.1080/19485560903382452
View details for Web of Science ID 000273798800010
View details for PubMedID 20183909
- Neuroscience-Based Lie Detection: The Need for Regulation , in USING IMAGING TO IDENTIFY DECEIT: SCIENTIFIC AND ETHICAL QUESTIONS 46-55 (American Academy of Arts and Sciences, Cambridge, Mass.) 2009
- ?Who Knows What Evil Lurks in the Hearts of Men??: Behavioral Genomics, Neuroscience, Criminal Law, and the Search for Hidden Knowledge THE IMPACT OF BEHAVIORAL SCIENCES ON THE CRIMINAL LAW 161-79 (ed. Nita Farahany, Oxford Univ. Press) 2009
- The Ethics of Characterizing Difference: Principles on Using Racial Categories in Human Genetics GENOME BIOLOGY 2009; 9 (7): 404
- The Role of Animal Models in Evaluating Reasonable Safety and Efficacy for Human Trials of Cell-Based Interventions for Neurological Conditions J Cereb Blood Flow Metab 2009; 29 (1): 1-9
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Research ethics consultation: the Stanford experience.
IRB
2008; 30 (6): 1-6
View details for PubMedID 19119757
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Ethical and Practical Issues Associated with Aggregating Databases
PLOS MEDICINE
2008; 5 (9): 1333-1337
View details for DOI 10.1371/journal.pmed.0050190
View details for Web of Science ID 000260442300008
View details for PubMedID 18816162
View details for PubMedCentralID PMC2553818
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Cell-based interventions for neurologic conditions - Ethical challenges for early human trials
NEUROLOGY
2008; 71 (4): 288-293
Abstract
Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions.An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions.While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding.Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.
View details for Web of Science ID 000257798900013
View details for PubMedID 18463365
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Strangers at the Benchside: Research ethics consultation
AMERICAN JOURNAL OF BIOETHICS
2008; 8 (3): 4-13
Abstract
Institutional ethics consultation services for biomedical scientists have begun to proliferate, especially for clinical researchers. We discuss several models of ethics consultation and describe a team-based approach used at Stanford University in the context of these models. As research ethics consultation services expand, there are many unresolved questions that need to be addressed, including what the scope, composition, and purpose of such services should be, whether core competencies for consultants can and should be defined, and how conflicts of interest should be mitigated. We make preliminary recommendations for the structure and process of research ethics consultation, based on our initial experiences in a pilot program.
View details for DOI 10.1080/15265160802109322
View details for Web of Science ID 000257030400004
View details for PubMedID 18570086
View details for PubMedCentralID PMC2585006
- Cell-Based Interventions for Neurologic Conditions: Ethical Challenges for Early Human Trials Neurology 2008; 71: 288-293
- Ethical and Practical Problems Associated with Aggregating Databases Pub. Lib. Of Science:Med doi:10.1371/journal.pmed.0050190 2008; 5 (9): e 190
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The ethics of characterizing difference: guiding principles on using racial categories in human genetics
GENOME BIOLOGY
2008; 9 (7)
Abstract
We are a multidisciplinary group of Stanford faculty who propose ten principles to guide the use of racial and ethnic categories when characterizing group differences in research into human genetic variation.
View details for DOI 10.1186/gb-2008-9-7-404
View details for Web of Science ID 000258773600005
View details for PubMedID 18638359
View details for PubMedCentralID PMC2530857
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Proposition 71 and CIRM - assessing the return on investment
NATURE BIOTECHNOLOGY
2007; 25 (5): 513-521
Abstract
Given that Californian voters authorized state coffers to sell $3 billion in bonds to fund the California Institute for Regenerative Medicine (CIRM) with the expectation of health and financial benefits, what benchmarks should be used to measure the initiative's success?
View details for Web of Science ID 000246369400014
View details for PubMedID 17483831
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Response to open peer commentaries on "Thinking about the human neuron mouse''
AMERICAN JOURNAL OF BIOETHICS
2007; 7 (5): W4-W6
View details for DOI 10.1080/15265160701372674
View details for Web of Science ID 000246830100020
View details for PubMedID 17497495
- Neuroethics and National Security AMERICAN JOURNAL OF BIOETHICS: NEUROSCIENCE 2007; 7 (5): 3-13
- Response to Peer Commentaries AMERICAN JOURNAL OF BIOETHICS: NEUROSCIENCE 2007; 7 (5): W1-3
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The uneasy ethical and legal underpinnings of large-scale genomic biobanks
ANNUAL REVIEW OF GENOMICS AND HUMAN GENETICS
2007; 8: 343-364
Abstract
Abstract Large-scale genomic databases are becoming increasingly common. These databases, and the underlying biobanks, pose several substantial legal and ethical problems. Neither the usual methods for protecting subject confidentiality, nor even anonymity, are likely to protect subjects' identities in richly detailed databases. Indeed, in these settings, anonymity is itself ethically suspect. New methods of consent will need to be created to replace the blanket consent common to such endeavors, with a consent procedure that gives subjects some real control over what they might consider inappropriate use of their information and biological material. Through their use, these biobanks are also likely to yield information that will be of some clinical significance to the subjects, information that they should have access to. Failure to adjust to these new challenges is not only legally and ethically inappropriate, but puts at risk the political support on which biomedical research depends.
View details for DOI 10.1146/annurev.genom.7.080505.115721
View details for Web of Science ID 000250233200016
View details for PubMedID 17550341
- Law and Neuroscience ENCYCLOPEDIA OF LAW AND SOCIETY (ed. David S. Clark, Sage Publications: Thousand Oaks) 2007
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Man and superman
NEW SCIENTIST
2006; 191 (2563): 19-19
View details for Web of Science ID 000239670700015
View details for PubMedID 17115502
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Knowing sin: making sure good science doesn't go bad.
Cerebrum : the Dana forum on brain science
2006: 1-8
View details for PubMedID 17120373
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An introduction-and some conclusions
FERTILITY AND STERILITY
2006; 85 (6): 1631-1632
View details for DOI 10.1016/j.fertnstert.2006.02.071
View details for Web of Science ID 000238427700005
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Moving human embryonic stem cells from legislature to lab: Remaining legal and ethical questions
PLOS MEDICINE
2006; 3 (5): 571-575
View details for DOI 10.1371/journal.pmed.0030143
View details for Web of Science ID 000238623900002
View details for PubMedID 16492089
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The paths around stem cell intellectual property
NATURE BIOTECHNOLOGY
2006; 24 (4): 411-414
Abstract
Can new approaches for deriving human stem cells circumnavigate existing patents that dominate embryonic stem cell intellectual property?
View details for DOI 10.1038/nbt0406-411
View details for Web of Science ID 000236766300019
View details for PubMedID 16601720
- Some Thoughts on Academic Health Law WAKE FOR. L. REV. 2006; 41: 409
- Electronic Transfer of Medical Records in Clinical Care and Research: An Irresistible Force Meets a Moveable Object in BIOLOGICAL MATERIAL AND ELECTRONIC DATA: MUCH ADO ABOUT NOTHING? (ed. Bartha M. Knoppers and Christian Hervé, Bordeaux: Les Études Hospitalières) 2006
- Neuroethics and ELSI: Similarities and Differences MINN. J. L. SCI. & TECH. 2006; 7: 599-637
- The Social Consequences of Advances in Neuroscience: Legal Problems; Legal Perspectives In: NEUROETHICS: DEFINING THE ISSUES IN THEORY, PRACTICE AND POLICY (Judy Illes, ed., Oxford University Press) 2006
- Fifteen Years Later: Another Look at Health Care in America STAN. L. & POL. REV. 2006; 15: 1
- Stanford Symposium on Preimplantation Genetic Diagnosis: An Introduction ? and Some Conclusions FERTILITY & STERILITY 2006; 85: 1631-32
- Regulating Human Biological Enhancements: Questionable Justifications and International Complications THE MIND, THE BODY, AND THE LAW: SANTA CLARA JOURNAL OF INTERNATIONAL LAW 4:87-110 (2006) (joint issue) 2006; 4: 87-110
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Banning genetic discrimination
NEW ENGLAND JOURNAL OF MEDICINE
2005; 353 (9): 865-867
View details for Web of Science ID 000231551100001
View details for PubMedID 16135828
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Premarket approval regulation for lie detections: An idea whose time may be coming
AMERICAN JOURNAL OF BIOETHICS
2005; 5 (2): 50-52
View details for DOI 10.1080/15265160590960988
View details for Web of Science ID 000230580800016
View details for PubMedID 16036701
- Regulating Human Biological Enhancements: Questionable Justifications and International Complications THE MIND, THE BODY, AND THE LAW: UNIVERSITY OF TECHNOLOGY, SYDNEY, LAW REVIEW (joint issue) 2005; 7: 87-110
- , Moral Issues of Human?Non-human Primate Neural Grafting Science 2005; 309: 385-86
- Population Participation and Other Factors that Impact the Compilation and the Utility of Resulting Databases Louisiana L. Rev. 2005; 66: 79-90
- Disabilities, Enhancements, and the Meanings of Sport STAN. L. & POL. REV. 2004; 15: 99-132
- INTENTIONAL HUMAN DOSING STUDIES FOR EPA REGULATORY PURPOSES: SCIENTIFIC AND ETHICAL ISSUES (National Academies Press, Washington, D.C.) 2004
- , Prediction, Litigation, Privacy, and Property: Some Possible Legal and Social Implications of Advances in Neuroscience In: NEUROSCIENCE AND THE LAW: BRAIN, MIND, AND THE SCALES OF JUSTICE 114-156 (Brent Garland, ed., The Dana Press) 2004
- Seeking More Goodly Creatures Cerebrum 2004; 6 (4): 49-58
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Defining chimeras ... and chimeric concerns
AMERICAN JOURNAL OF BIOETHICS
2003; 3 (3): 17-20
View details for Web of Science ID 000221120200005
View details for PubMedID 14594472
- Genome Research and Minorities in PHARMACOGENOMICS: SOCIAL, ETHICAL, AND CLINICAL DIMENSIONS (Mark A. Rothstein, ed., John Wiley & Sons) 2003
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Cloning and government regulation
HASTINGS LAW JOURNAL
2002; 53 (5): 1085-1096
View details for Web of Science ID 000177650400009
View details for PubMedID 15508218
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Brain science and social policy.
Cerebrum : the Dana forum on brain science
2002; 4 (3): 59-62
View details for PubMedID 16619414
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Principles, organization, and operation of a DNA bank for clinical trials: a Department of Veterans Affairs cooperative study
CONTROLLED CLINICAL TRIALS
2002; 23 (3): 222-239
Abstract
The mapping and sequencing of the human genome promises rapid growth in understanding the genetically influenced mechanisms that underlie human disease. To realize this promise fully, it is necessary to relate genetic information to clinical phenotypes. Genetic tissue banking in clinical studies provides opportunities to analyze the genetic contribution to variation in response to treatments. The challenges to progress are likely to come from the complex organizational, social, political, and ethical issues that must be resolved in order to put clinical and DNA bank information together. Concerns about subjects' rights, informed consent, privacy, and ownership of genetic material require attention in the development of DNA banks. In this paper we describe one approach to the solution of these problems that was adopted by one clinical trials group, the Department of Veterans Affairs Cooperative Studies Program.
View details for Web of Science ID 000175963200001
View details for PubMedID 12057876
- CLONING CALIFORNIANS?: REPORT OF THE CALIFORNIA ADVISORY COMMITTEE ON HUMAN CLONING Hastings L. J. 2002; 53: 1143-1203
- Neuroethics and ELSI: Some Comparisons and Considerations, in NEUROETHICS: MAPPING THE FIELD (ed. Steven J. Markus, The Dana Press) 2002
- CLONING CALIFORNIANS? (Sacramento, CA.) 2002
- Cloning and Government Regulation HASTINGS L. J. 2002; 53: 1085-96
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Genotype discrimination: The complex case for some legislative protection
UNIVERSITY OF PENNSYLVANIA LAW REVIEW
2001; 149 (5): 1483-1505
View details for Web of Science ID 000170030500009
View details for PubMedID 15732207
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Views of United States physicians and members of the American Medical Association House of Delegates on physician-assisted suicide
JOURNAL OF GENERAL INTERNAL MEDICINE
2001; 16 (5): 290-296
Abstract
To ascertain the views of physicians and physician leaders toward the legalization of physician-assisted suicide.Confidential mail questionnaire.A nationwide random sample of physicians of all ages and specialties, and all members of the American Medical Association (AMA) House of Delegates as of April 1996.Demographic and practice characteristics and attitude toward legalization of physician-assisted suicide.Usable questionnaires were returned by 658 of 930 eligible physicians in the nationwide random sample (71%) and 315 of 390 eligible physicians in the House of Delegates (81%). In the nationwide random sample, 44.5% favored legalization (16.4% definitely and 28.1% probably), 33.9% opposed legalization (20.4% definitely and 13.5% probably), and 22% were unsure. Opposition to legalization was strongly associated with self-defined politically conservative beliefs, religious affiliation, and the importance of religion to the respondent (P <.001). Among members of the AMA House of Delegates, 23.5% favored legalization (7.3% definitely and 16.2% probably), 61.6% opposed legalization (43.5% definitely and 18.1% probably), and 15% were unsure; their views differed significantly from those of the nationwide random sample (P <.001). Given the choice, a majority of both groups would prefer no law at all, with physician-assisted suicide being neither legal nor illegal.Members of the AMA House of Delegates strongly oppose physician-assisted suicide, but rank-and-file physicians show no consensus either for or against its legalization. Although the debate is sometimes adversarial, most physicians in the United States are uncertain or endorse moderate views on assisted suicide.
View details for Web of Science ID 000168978000002
View details for PubMedID 11359546
View details for PubMedCentralID PMC1495216
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Human genomics research - new challenges for research ethics
Asilomar Symposium on Science, Ethics and Society
JOHNS HOPKINS UNIV PRESS. 2001: 221–29
View details for Web of Science ID 000168491200009
View details for PubMedID 11370156
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Human genome diversity: What about the other human genome project?
NATURE REVIEWS GENETICS
2001; 2 (3): 222-227
Abstract
Although the Human Genome Project has been successful, the Human Genome Diversity Project, proposed in 1991, has so far failed to thrive. One of the main values in studying the human genome, however, will come from examining its variations and their effects. To do that in a systematic way, an active Human Genome Diversity Project, or something very similar, will ultimately prove vital. Such an effort will confront difficult ethical and political issues; this article reviews those issues and tries to show how they might be overcome.
View details for Web of Science ID 000167289400016
View details for PubMedID 11256074
- Genes and Liberty: Commentary on Dr. Jacobs Pharos 2001; 64: 22
- Views of United States Physicians and Members of the American Medical Association House of Delegates Toward Physician-Assisted Suicide, J. GEN. INT. MED. 2001; 16 (5): 290-296
- Ethical Issues in "the New Genetics? THE INTERNATIONAL ENCYCLOPEDIA OF SOCIAL AND BEHAVIORAL SCIENCES 7:4762-70 (3rd ed.) 2001
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The revolution in human genetics: implications for human societies.
South Carolina law review
2001; 52 (2): 377-381
View details for PubMedID 17333583
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Informed consent and other ethical issues in human population genetics
ANNUAL REVIEW OF GENETICS
2001; 35: 785-800
Abstract
Human population genetics has entered a new era of public interest, of controversy, and of ethical problems. Population genetics raises novel ethical problems because both the individuals and the populations being studied are, in effect, "subjects" of the research. Those populations are collectively subject to possible benefits and harms from the research and have interests, somewhat different from those of the individuals, that must be considered from both ethical and practical standpoints. The chapter first describes the new setting for research in human population genetics. It then examines the most controversial ethical issue in population genetics-whether researchers must obtain the informed consent of both the individual subjects and the group as a collectivity. Other vexing issues, including special problems caused by researchers' commercial interests, confidentiality, control over research uses and materials, and return of information to the population are also considered.
View details for Web of Science ID 000172991500025
View details for PubMedID 11700299
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Trusted systems and medical records: Lowering expectations
Conference on Cyberspace and Privacy - A New Legal Paradigm
STANFORD UNIV, STANFORD LAW SCHOOL. 2000: 1585–93
View details for Web of Science ID 000089374800017
View details for PubMedID 11503654
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Iceland's plan for genomics research: facts and implications.
Jurimetrics
2000; 40: 153-191
Abstract
The government of Iceland has authorized a private, for-profit firm, deCODE Genetics, to construct a database of the population's medical records as part of a larger plan by deCODE for human genetics research. This article presents the background for genetics research in Iceland, the history of deCODE, and the terms of the law authorizing the database. It then examines five objections to the law, based on commercialization, lack of informed consent, risks to privacy, the effects of other research, and financial unfairness. It concludes that the Icelandic model is not a good precedent for similar research elsewhere.
View details for PubMedID 16295921
- Individualizing Medicine Through PharmacoGenomics ? Are There Ethical Concerns? THE BUSINESS CASE FOR PHARMACOGENOMICS 229-243 (ed. N.S. Rudolph, Woburn, Mass.) 2000
- Ethical Issues in the Human Genome Diversity Project THE ENCYCLOPEDIA OF ETHICAL, LEGAL, AND POLICY ISSUES IN BIOTECHNOLOGY 2000
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The overlooked ethics of the Human Genome Diversity Project
POLITICS AND THE LIFE SCIENCES
1999; 18 (2): 297-299
View details for Web of Science ID 000167070100035
View details for PubMedID 12557893
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Do physicians have a duty to disclose mistakes?
Western journal of medicine
1999; 171 (2): 82-83
View details for PubMedID 10510653
View details for PubMedCentralID PMC1305761
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Genetic testings for cancer: the surgeon's critical role. Ethical and legal issues associated with genetic testing.
Journal of the American College of Surgeons
1999; 188 (1): 86-89
View details for PubMedID 9915249
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Ethical and legal issues associated with genetic testing
26th Annual Spring Meeting of the American-College-of-Surgeons
ELSEVIER SCIENCE INC. 1999: 86–89
View details for Web of Science ID 000077927100017
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Special issues in genetic testing for Alzheimer disease
49th Annual Meeting of the American-Society-of-Human-Genetics
MARY ANN LIEBERT INC. 1999: 115–19
Abstract
Genetic testing for Alzheimer disease (AD) raises two issues that are, thus far, unusual. First, genetic testing of dementia patients for diagnostic purposes necessarily leads to information of some predictive significance for the patient's family members. What information about the test results should be disclosed to whom needs careful consideration. Testing for a patient's apolipoprotein E (APOE) allele status was used, both in research and clinically, as a predictor of cardiovascular risk long before it was known to be associated with AD risk. Whether and how information about the newly understood AD implications of the test should be provided to those who were tested for cardiovascular risk needs attention, as does the general problem of new, and possibly less benign, meanings for old genetic test results.
View details for Web of Science ID 000087218200015
View details for PubMedID 10464585
- Breaking the Stalemate: A Prospective Regulatory Framework for Unforeseen Research Uses of Human Tissue Samples and Health Information WAKE FOREST L. REV. 1999; 34: 737-766
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Genetic testing and Alzheimer disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society
49th Annual Meeting of the American-Society-of-Human-Genetics
MARY ANN LIEBERT INC. 1999: 3–12
Abstract
Several genes associated with Alzheimer disease (AD) have been localized and cloned; two genetic tests are already commercially available, and new tests are being developed. Genetic testing for AD--either for disease prediction or for diagnosis--raises critical ethical concerns. The multidisciplinary Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics, and Society (PGES) presents comprehensive recommendations on genetic testing for AD. The Group concludes that under current conditions, genetic testing for AD prediction or diagnosis is only rarely appropriate. Criteria for judging the readiness of a test for introduction into routine clinical practice typically rely heavily on evaluation of technical efficacy. PGES recommends a broader and more comprehensive approach, considering: 1) the unique social and historical meanings of AD; 2) the availability of procedures to promote good surrogate decision making for incompetent patients and to safeguard confidentiality; 3) access to sophisticated genetic counselors able to communicate complex risk information and effectively convey the social costs and psychological burdens of testing, such as unintentional disclosure of predictive genetic information to family members; 4) protection from inappropriate advertising and marketing of genetic tests; and 5) recognition of the need for public education about the meaning and usefulness of predictive and diagnostic tests for AD. In this special issue of Genetic Testing, the PGES recommendations are published along with comprehensive background papers authored by Working Group members.
View details for Web of Science ID 000087218200002
View details for PubMedID 10464572
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Genetic testing and Alzheimer disease: Has the time come?
NATURE MEDICINE
1998; 4 (7): 757-759
View details for Web of Science ID 000074543900018
View details for PubMedID 9662356
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Genetic testing for BRCA1 and BRCA2: Recommendations of the Stanford Program in Genomics, Ethics, and Society
JOURNAL OF WOMENS HEALTH
1998; 7 (5): 531-545
View details for Web of Science ID 000074445500014
View details for PubMedID 9650154
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Legal, ethical, and social issues in human genome research
ANNUAL REVIEW OF ANTHROPOLOGY
1998; 27: 473-502
Abstract
In the past several decades, biological sciences have been revolutionized by their increased understanding of how life works at the molecular level. In what ways, and to what extent, will this scientific revolution affect the human societies within which the science is situated? The legal, ethical, and social implications of research in human genetics have been discussed in depth, particularly in the context of the Human Genome Project and, to a lesser extent, the proposed Human Genome Diversity Project. Both projects could have significant effects on society, the former largely at the level of individuals or families and the latter primarily at the level of ethnic groups or nations. These effects can be grouped in six broad categories: identity, prediction, history, manipulation, ownership and control, and destiny.
View details for Web of Science ID 000076758100022
View details for PubMedID 15977340
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Richard Epstein's Mortal Peril: Ebenezer Scrooge meets the American health care system
UNIVERSITY OF ILLINOIS LAW REVIEW
1998: 727-756
View details for Web of Science ID 000078910100003
- Informed Consent, Stored Tissue Samples, and the Human Genome Diversity Project: Protecting the Rights of Research Participants ETHICAL ISSUES IN STORED TISSUE SAMPLES 89-110 (ed. R. Weir, Univ. Iowa Press) 1998
- Richard Epstein's MORTAL PERIL: Ebenezer Scrooge Meets the American Health Care System U. ILLINOIS L. REV. 1998; 1998: 727-756
- The Human Genome Diversity Project: Ethical, Legal, and Social Issues GENETICS: ISSUES OF SOCIAL JUSTICE 71-81 (ed. T. Peters, Pilgrim Press) 1998
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Banning "human cloning": a study in the difficulties of defining science.
Southern California interdisciplinary law journal
1998; 8 (1): 131-152
View details for PubMedID 15085839
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Genetic testing for cancer susceptibility: challenges for creators of practice guidelines.
Oncology (Williston Park, N.Y.)
1997; 11 (11A): 171-176
Abstract
The science of cancer is being revolutionized by the collaboration of cancer-afflicted families and determined scientists. The result has been an explosion of knowledge about inherited susceptibilities to particular types of cancer and the possibilities of testing for those susceptibilities. Susceptibility tests are becoming available for breast cancer, ovarian cancer, prostate cancer, colon cancer, retinoblastoma, and hereditary medullary thyroid cancer--cancers both common and rare. Now, cancer patients, cancer families, and cancer physicians face the challenge of determining how--and whether--such tests can be put to good use.
View details for PubMedID 9430188
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Direct financial incentives in managed care: unanswered questions.
Health matrix (Cleveland, Ohio : 1991)
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Policy issues in health alliances: of efficiency, monopsony, and equity.
Health matrix (Cleveland, Ohio : 1991)
1995; 5 (1): 37-82
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Conflicts in the biotechnology industry
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AIDS AND THE AMERICAN HEALTH-CARE FINANCING SYSTEM
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1989; 51 (1): 73-166
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View details for PubMedID 11652563
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THE ETHICAL USE OF HUMAN-FETAL TISSUE IN MEDICINE
NEW ENGLAND JOURNAL OF MEDICINE
1989; 320 (16): 1093-1096
View details for Web of Science ID A1989U160700031
View details for PubMedID 2535632
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CONTRACTS AS COMMODITIES - THE INFLUENCE OF SECONDARY PURCHASERS ON THE FORM OF CONTRACTS
VANDERBILT LAW REVIEW
1989; 42 (1): 133-170
View details for Web of Science ID A1989T019500004