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Articles 1 - 16 of 16
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Finding Fault?: Exploring Legal Duties To Return Incidental Findings In Genomic Research, Elizabeth R. Pike, Karen H. Rothenberg, Benjamin E. Berkman
Finding Fault?: Exploring Legal Duties To Return Incidental Findings In Genomic Research, Elizabeth R. Pike, Karen H. Rothenberg, Benjamin E. Berkman
Faculty Scholarship
The use of whole genome sequencing in biomedical research is expected to produce dramatic advances in human health. The increasing use of this powerful, data-rich new technology in research, however, will inevitably give rise to incidental findings (IFs), findings with individual health or reproductive significance that are beyond the aims of the particular research, and the related questions of whether and to what extent researchers have an ethical obligation to return IFs. Many have concluded that researchers have an ethical obligation to return some findings in some circumstances, but have provided vague or context-dependent approaches to determining which IFs must …
Dialogues, Dilemmas, And Disclosures: Genomic Research And Incidental Findings, Lynn W. Bush, Karen H. Rothenberg
Dialogues, Dilemmas, And Disclosures: Genomic Research And Incidental Findings, Lynn W. Bush, Karen H. Rothenberg
Faculty Scholarship
No abstract provided.
Genes And Plays: Bringing Elsi Issues To Life, Karen H. Rothenberg, Lynn W. Bush
Genes And Plays: Bringing Elsi Issues To Life, Karen H. Rothenberg, Lynn W. Bush
Faculty Scholarship
Ethical complexities surround the promise of genomic technology and the power of genetic information as they alter conceptions of identity and dynamics within personal and professional relationships. Creative approaches such as dramatic vignettes offer a unique analytical stage for imagining the bioethical past and future. Dramatic narratives can bring to life images of differing perspectives and values when experiencing innovations in medicine. Although the scientific landscape shifts, concerns expressed in theatre from 50 years ago parallel many contemporary ELSI (ethical, legal and social implications) issues, highlighting the ongoing struggle to appreciate the impact of emerging genetic technologies on relationships. To …
Manipulating Fate: Medical Innovations, Ethical Implications, Theatrical Illuminations, Karen H. Rothenberg, Lynn W. Bush
Manipulating Fate: Medical Innovations, Ethical Implications, Theatrical Illuminations, Karen H. Rothenberg, Lynn W. Bush
Faculty Scholarship
Transformative innovations in medicine and their ethical complexities create frequent confusion and misinterpretation that color the imagination. Placed in historical context, theatre provides a framework to reflect upon how the ethical, legal, and social implications of emerging technologies evolve over time and how attempts to control fate through medical science have shaped -- and been shaped by -- personal and professional relationships. The drama of these human interactions is powerful and has the potential to generate fear, create hope, transform identity, and inspire empathy -- a vivid source to observe the complex implications of translating research into clinical practice through …
From Eugenics To The "New" Genetics: "The Play's The Thing", Karen H. Rothenberg
From Eugenics To The "New" Genetics: "The Play's The Thing", Karen H. Rothenberg
Faculty Scholarship
Genetics occupies a place in the public imagination with which few areas of science can compete. It is popularly understood to be the “science of life,” concerned with the essence of humanity: a subject that generates both awe and fear. These divergent emotions are encapsulated in the “promise versus peril” debate: the promise of an end to human disease is countered by the peril embodied in the discriminatory capacity of genetic essentialism. This debate has become ingrained in popular culture, and its dramatic potential has been effectively realized in theatre.
Plays have always been written and performed as expressions of …
The Scarlet Gene: Behavioral Genetics, Criminal Law, And Racial And Ethnic Stigma, Karen H. Rothenberg, Alice Wang
The Scarlet Gene: Behavioral Genetics, Criminal Law, And Racial And Ethnic Stigma, Karen H. Rothenberg, Alice Wang
Faculty Scholarship
Imagine that a scientist from the state university asks you and your family to participate in a study on a particular gene variant associated with alcoholism. The project focuses on your ethnic group, the Tracy Islanders, who have a higher incidence of alcoholism, as well as a higher incidence of the gene variant, than the general population. You will not be informed whether you have the gene variant, but your participation in the study might help scientists develop drugs to help individuals control their addiction to alcohol. You have a family history of alcoholism, and you are concerned that your …
Undesirable Implications Of Disclosing Individual Genetic Results To Research Participants, Leslie Meltzer Henry
Undesirable Implications Of Disclosing Individual Genetic Results To Research Participants, Leslie Meltzer Henry
Faculty Scholarship
The bioethics and legal community are divided over whether investigators who conduct biomedical research are ethically and/or legally obligated to disclose incidental genetic findings to research participants. This paper argues that the justification for disclosure rests on the mistaken view that principles of beneficence, respect, reciprocity, and/or justice require researchers to offer participants individual genetic results. Whereas these principles and others obligate physicians to share individually relevant results with patients with whom they share a fiduciary relationship in the clinical care setting, they do not similarly obligate investigators to share such information with participants in the research setting. Furthermore, proposals …
When Should Judges Admit Or Compel Genetic Tests?, Diane E. Hoffmann, Karen H. Rothenberg
When Should Judges Admit Or Compel Genetic Tests?, Diane E. Hoffmann, Karen H. Rothenberg
Faculty Scholarship
No abstract provided.
Navigating Uncharted Waters: Intellectual Property Rights Surrounding Genomics Research & Development Information, Lawrence M. Sung
Navigating Uncharted Waters: Intellectual Property Rights Surrounding Genomics Research & Development Information, Lawrence M. Sung
Faculty Scholarship
No abstract provided.
What Makes Genetic Discrimination Exceptional?, Deborah Hellman
What Makes Genetic Discrimination Exceptional?, Deborah Hellman
Faculty Scholarship
No abstract provided.
The Unblazed Trail: Bioinformatics And The Protection Of Genetic Knowledge, Lawrence M. Sung
The Unblazed Trail: Bioinformatics And The Protection Of Genetic Knowledge, Lawrence M. Sung
Faculty Scholarship
No abstract provided.
Consent To The Use Of Stored Dna For Genetics Research: A Survey Of Attitudes In The Jewish Population, Marc D. Schwartz, Karen H. Rothenberg, Linda Joseph, Judith Benkendorf, Caryn Lerman
Consent To The Use Of Stored Dna For Genetics Research: A Survey Of Attitudes In The Jewish Population, Marc D. Schwartz, Karen H. Rothenberg, Linda Joseph, Judith Benkendorf, Caryn Lerman
Faculty Scholarship
No abstract provided.
Privacy In Genetics Research, Barbara Fuller, Mary Jo Ellis Kahn, P. A. Barr, L. Biesecker, E. Crowley, J. Garber, M. K. Mansoura, Patricia Murphy, J. Murray, J. Phillips, Karen H. Rothenberg, Mark Rothstein, J. Stopfer, Gary Swergold, B. Weber, Francis Collins, Kathy Hudson
Privacy In Genetics Research, Barbara Fuller, Mary Jo Ellis Kahn, P. A. Barr, L. Biesecker, E. Crowley, J. Garber, M. K. Mansoura, Patricia Murphy, J. Murray, J. Phillips, Karen H. Rothenberg, Mark Rothstein, J. Stopfer, Gary Swergold, B. Weber, Francis Collins, Kathy Hudson
Faculty Scholarship
No abstract provided.
Cancer Genetic Susceptibility Testing: Ethical And Policy Implications For Future Research And Clinical Practice, Benjamin S. Wilfond, Karen H. Rothenberg, Elizabeth J. Thomson, Caryn Lerman
Cancer Genetic Susceptibility Testing: Ethical And Policy Implications For Future Research And Clinical Practice, Benjamin S. Wilfond, Karen H. Rothenberg, Elizabeth J. Thomson, Caryn Lerman
Faculty Scholarship
No abstract provided.
Genetic Information And The Workplace: Legislative Approaches And Policy Challenges, Karen H. Rothenberg, Barbara Fuller, Mark Rothstein, Troy Duster, Mary Jo Ellis Kahn, Rita Cunningham, Beth Fine, Kathy Hudson, Mary-Claire King, Patricia Murphy, Gary Swergold, Francis Collins
Genetic Information And The Workplace: Legislative Approaches And Policy Challenges, Karen H. Rothenberg, Barbara Fuller, Mark Rothstein, Troy Duster, Mary Jo Ellis Kahn, Rita Cunningham, Beth Fine, Kathy Hudson, Mary-Claire King, Patricia Murphy, Gary Swergold, Francis Collins
Faculty Scholarship
No abstract provided.
Genetic Information And Health Insurance: State Legislative Approaches, Karen H. Rothenberg
Genetic Information And Health Insurance: State Legislative Approaches, Karen H. Rothenberg
Faculty Scholarship
No abstract provided.