Barbara A Koenig
Dados Biográficos
| ID | 105361 |
|---|---|
| NOME | Barbara A Koenig |
| PRENOMES | Barbara A |
| SOBRENOME | Koenig |
| ASSINATURA | KOENIG B A |
| AFILIAÇÕES | University of California, San Francisco |
| ORCID | 0000-0003-3227-6768 |
| VERIFICADO | Sim |
| TOTAL DE OBRAS | 22 |
| TOTAL DE CITAÇÕES | 52 |
| TOTAL COMO AUTOR | 22 |
| TOTAL COMO EDITOR | 0 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 1995 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2024 |
| ÍNDICE H | 4 |
“Mammograms are kind of my pacifier”
Population genetic testing and risk-based screening have the potential to shift how we determine risk and screen for breast cancer. While much attention has been paid to the experiences of individuals who may be at elevated risk for breast cancer, less is known about how those at average risk make decisions about their health. Through qualitative interviews with 30 participants, we explore how those enrolled in a risk-based screening trial who ar…
Moving toward Equity through Embedded Elsi Ethnography
This paper describes the unique values of, challenges within, and opportunities presented by embedded ELSI ethnography. Drawing from our six‐year embedded ELSI study of the WISDOM (Women Informed to Screen Depending on Measures of Risk) trial, we present three examples of the variable ways we engaged with the WISDOM trial's scientific team. WISDOM is a preference‐sensitive, pragmatic, randomized controlled trial of risk‐based breast cancer screen…
The challenge of recruiting diverse populations into health research
Addressing health disparities has become a central remit for conducting health research. In the following paper, we explore the conceptual and methodological challenges posed by the call to recruit medically underserved populations. This exploration of challenges is undertaken from the perspective of social science researchers embedded in a large within a clinical genomics research study. We suggest that these challenges are found in respect to t…
Public involvement in the governance of population-level biomedical research
Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 exper…
If relatives inherited the gene, they should inherit the data.” Bringing the family into the room where bioethics happens
Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics …
“Why did I get that part of you?” Understanding addiction genetics through family history
Scientists have sought to uncover the genetic bases of many diseases and disorders. In response, scholars defined “geneticization” to describe genetic infiltration of understandings of health and illness. In our research, we interviewed 63 individuals in addiction treatment programs to identify what form of geneticization best fits individuals’ description of their own addiction. Individuals’ narratives of their lives, which include family histor…
Sequencing Newborns
Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that u…
Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death
Genetic research generates results with implications for relatives. Recommendations addressing relatives' access to a participant's genetic research findings include eliciting participant preferences about access and choosing a representative to make decisions about access upon participant incapacity/death. Representatives are likely to be blood relatives or spouse/partners (who may share genetically related children). This raises the question of…
Ten simple rules for responsible big data research
The use of big data research methods has grown tremendously over the past five years in both academia and industry. As the size and complexity of available datasets has grown, so too have the ethical questions raised by big data research. These questions become increasingly urgent as data and research agendas move well beyond those typical of the computational and natural sciences, to more directly address sensitive aspects of human behavior, int…
I don’t have to know why it snows, I just have to shovel it!”
How California Prepared for Implementation of Physician-Assisted Death
Physician-assisted death is now legal in California, and similar laws are being considered in many other states. The California law includes safeguards, yet health care providers will face practical and ethical issues while implementing physician-assisted death that are not addressed by the law. To help providers and health care facilities in California prepare to provide optimal care to patients who inquire about physician-assisted death, we bro…
The Media and Behavioral Genetics
To understand public discourse in the United States on genetic causation of behavioral disorders, we analyzed media representations of genetic research on addiction published between 1990 and 2010. We conclude first that the media simplistically represent biological bases of addiction and willpower as being mutually exclusive: behaviors are either genetically determined, or they are a choice. Second, most articles provide only cursory or no treat…
Have We Asked Too Much of Consent
The Experience of Addiction as Told by the Addicted
Vaccinating Health Care Workers Against Influenza
Despite improvements in clinician education, symptom awareness, and respiratory precautions, influenza vaccination rates for health care workers have remained unacceptably low for more than three decades, adversely affecting patient safety. When public health is jeopardized, and a safe, low-cost, and effective method to achieve patient safety exists, health care organizations and public health authorities have a responsibility to take action and …
Framing Nicotine Addiction as a “Disease of the Brain”
OBJECTIVES: influences on substance use and abuse (e.g., peer and family influence, socioeconomic status) are well documented, biomedical intervention is becoming increasingly technoscientific in nature. We wish to elucidate how emphasizing biological influences on substance use may lead to a vision of addiction as a phenomenon isolated within our bodies and neurochemistry, not lived daily within a complex social web of relationships and a partic…
Ironic technology
Family Member Involvement in Hastened Death
When patients pursue a hastened death, how is the labor of family care-giving affected? The authors examined this question in a qualitative study of 35 families. Four cases reveal the main themes: "taking care" included mutual protection between patients and family members; "midwifing the death" without professional support left families unprepared for adverse events; "tying up loose ends" included dealing with family members' fear of legal conse…
What Can Anthropology Contribute to the Terri Schiavo Debate
The Power (And Limits) of Proximity
to very general-what sort Does of life is worth having? This second question, however general, Clini c al is also every bit as practical, as concerned with practice, with Ethics living a moral life, as first question. Distort With no embarrassment, I count myself in that second Discipline? camp. To do that well requires attentiveness to stories in all their particularity. But it also acknowledges ineluctable human tendency to generalize, to move …
Reconfiguring Nature and Culture
Organ Transplantation (Re)Examined
Reconfiguring Nature and Culture
Ironic technology
Family Member Involvement in Hastened Death
When patients pursue a hastened death, how is the labor of family care-giving affected? The authors examined this question in a qualitative study of 35 families. Four cases reveal the main themes: "taking care" included mutual protection between patients and family members; "midwifing the death" without professional support left families unprepared for adverse events; "tying up loose ends" included dealing with family members' fear of legal conse…
Framing Nicotine Addiction as a “Disease of the Brain”
OBJECTIVES: influences on substance use and abuse (e.g., peer and family influence, socioeconomic status) are well documented, biomedical intervention is becoming increasingly technoscientific in nature. We wish to elucidate how emphasizing biological influences on substance use may lead to a vision of addiction as a phenomenon isolated within our bodies and neurochemistry, not lived daily within a complex social web of relationships and a partic…
Organ Transplantation (Re)Examined
How California Prepared for Implementation of Physician-Assisted Death
Physician-assisted death is now legal in California, and similar laws are being considered in many other states. The California law includes safeguards, yet health care providers will face practical and ethical issues while implementing physician-assisted death that are not addressed by the law. To help providers and health care facilities in California prepare to provide optimal care to patients who inquire about physician-assisted death, we bro…
Vaccinating Health Care Workers Against Influenza
Despite improvements in clinician education, symptom awareness, and respiratory precautions, influenza vaccination rates for health care workers have remained unacceptably low for more than three decades, adversely affecting patient safety. When public health is jeopardized, and a safe, low-cost, and effective method to achieve patient safety exists, health care organizations and public health authorities have a responsibility to take action and …
What Can Anthropology Contribute to the Terri Schiavo Debate
Organ Transplantation (Re)Examined
The Power (And Limits) of Proximity
to very general-what sort Does of life is worth having? This second question, however general, Clini c al is also every bit as practical, as concerned with practice, with Ethics living a moral life, as first question. Distort With no embarrassment, I count myself in that second Discipline? camp. To do that well requires attentiveness to stories in all their particularity. But it also acknowledges ineluctable human tendency to generalize, to move …
Reconfiguring Nature and Culture
What Can Anthropology Contribute to the Terri Schiavo Debate
Family Member Involvement in Hastened Death
When patients pursue a hastened death, how is the labor of family care-giving affected? The authors examined this question in a qualitative study of 35 families. Four cases reveal the main themes: "taking care" included mutual protection between patients and family members; "midwifing the death" without professional support left families unprepared for adverse events; "tying up loose ends" included dealing with family members' fear of legal conse…
Vaccinating Health Care Workers Against Influenza
Despite improvements in clinician education, symptom awareness, and respiratory precautions, influenza vaccination rates for health care workers have remained unacceptably low for more than three decades, adversely affecting patient safety. When public health is jeopardized, and a safe, low-cost, and effective method to achieve patient safety exists, health care organizations and public health authorities have a responsibility to take action and …
Framing Nicotine Addiction as a “Disease of the Brain”
OBJECTIVES: influences on substance use and abuse (e.g., peer and family influence, socioeconomic status) are well documented, biomedical intervention is becoming increasingly technoscientific in nature. We wish to elucidate how emphasizing biological influences on substance use may lead to a vision of addiction as a phenomenon isolated within our bodies and neurochemistry, not lived daily within a complex social web of relationships and a partic…
Ironic technology
The Experience of Addiction as Told by the Addicted
Have We Asked Too Much of Consent
The Media and Behavioral Genetics
To understand public discourse in the United States on genetic causation of behavioral disorders, we analyzed media representations of genetic research on addiction published between 1990 and 2010. We conclude first that the media simplistically represent biological bases of addiction and willpower as being mutually exclusive: behaviors are either genetically determined, or they are a choice. Second, most articles provide only cursory or no treat…
Ten simple rules for responsible big data research
The use of big data research methods has grown tremendously over the past five years in both academia and industry. As the size and complexity of available datasets has grown, so too have the ethical questions raised by big data research. These questions become increasingly urgent as data and research agendas move well beyond those typical of the computational and natural sciences, to more directly address sensitive aspects of human behavior, int…
I don’t have to know why it snows, I just have to shovel it!”
How California Prepared for Implementation of Physician-Assisted Death
Physician-assisted death is now legal in California, and similar laws are being considered in many other states. The California law includes safeguards, yet health care providers will face practical and ethical issues while implementing physician-assisted death that are not addressed by the law. To help providers and health care facilities in California prepare to provide optimal care to patients who inquire about physician-assisted death, we bro…
Sequencing Newborns
Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that u…
Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death
Genetic research generates results with implications for relatives. Recommendations addressing relatives' access to a participant's genetic research findings include eliciting participant preferences about access and choosing a representative to make decisions about access upon participant incapacity/death. Representatives are likely to be blood relatives or spouse/partners (who may share genetically related children). This raises the question of…
“Why did I get that part of you?” Understanding addiction genetics through family history
Scientists have sought to uncover the genetic bases of many diseases and disorders. In response, scholars defined “geneticization” to describe genetic infiltration of understandings of health and illness. In our research, we interviewed 63 individuals in addiction treatment programs to identify what form of geneticization best fits individuals’ description of their own addiction. Individuals’ narratives of their lives, which include family histor…
Public involvement in the governance of population-level biomedical research
Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 exper…
If relatives inherited the gene, they should inherit the data.” Bringing the family into the room where bioethics happens
Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics …
The challenge of recruiting diverse populations into health research
Addressing health disparities has become a central remit for conducting health research. In the following paper, we explore the conceptual and methodological challenges posed by the call to recruit medically underserved populations. This exploration of challenges is undertaken from the perspective of social science researchers embedded in a large within a clinical genomics research study. We suggest that these challenges are found in respect to t…
“Mammograms are kind of my pacifier”
Population genetic testing and risk-based screening have the potential to shift how we determine risk and screen for breast cancer. While much attention has been paid to the experiences of individuals who may be at elevated risk for breast cancer, less is known about how those at average risk make decisions about their health. Through qualitative interviews with 30 participants, we explore how those enrolled in a risk-based screening trial who ar…
Moving toward Equity through Embedded Elsi Ethnography
This paper describes the unique values of, challenges within, and opportunities presented by embedded ELSI ethnography. Drawing from our six‐year embedded ELSI study of the WISDOM (Women Informed to Screen Depending on Measures of Risk) trial, we present three examples of the variable ways we engaged with the WISDOM trial's scientific team. WISDOM is a preference‐sensitive, pragmatic, randomized controlled trial of risk‐based breast cancer screen…
Medicine (14 obras) · Psychology (11 obras) · Political science (10 obras) · Sociology (9 obras) · BRCA gene mutations in cancer (6 obras) · Computer Science (6 obras) · Ethics in Clinical Research (6 obras) · Psychiatry (6 obras) · Social Psychology (6 obras) · Biology (5 obras)