Amy McGuire | Baylor College of Medicine (original) (raw)

Papers by Amy McGuire

American Journal of Bioethics, 2009

Purpose: This study explores social networkers' interest in and attitudes toward personal genome ... more Purpose: This study explores social networkers' interest in and attitudes toward personal genome testing (PGT), focusing on expectations related to the clinical integration of PGT results. Methods: An online survey of 1,087 social networking users was conducted to assess 1) use and interest in PGT; 2) attitudes toward PGT companies and test results; and 3) expectations for the clinical integration of PGT. Descriptive statistics were calculated to summarize respondents' characteristics and responses. Results: Six percent of respondents have used PGT, 64% would consider using PGT, and 30% would not use PGT. Of those who would consider using PGT, 74% report they would use it to gain knowledge about disease in their family. 34% of all respondents consider the information obtained from PGT to be a medical diagnosis. 78% of those who would consider PGT would ask their physician for help interpreting test results, and 61% of all respondents believe physicians have a professional obligation to help individuals interpret PGT results. Conclusion: Respondents express interest in using PGT services, primarily for purposes related to their medical care and expect physicians to help interpret PGT results. Physicians should therefore be prepared for patient demands for information and counsel on the basis of PGT results.

American Journal of Bioethics, 2005

Medical Care, 2005

Physicians are encouraged to actively involve patients in clinical decision-making, but this expe... more Physicians are encouraged to actively involve patients in clinical decision-making, but this expectation has not been adequately examined from the physicians' perspective. Our objective was to identify and characterize physicians' attitudes toward patient participation in decision-making and to gain insight into how they consequently think about and structure the decision-making process. This was a qualitative cross-sectional study of physicians' reported attitudes and practices. The study took place in private practice and academic physicians' practices. A total of 53 academic and private practice physicians from primary care and surgical specialties, ranging from first year residents to recently retired, participated in the study. We performed a qualitative analysis of semistructured individual interviews. The physicians in this study expressed consistently positive attitudes toward patient participation in medical decision-making. They identified patient autonomy as an essential justification for patient participation but often went beyond an autonomy-based rationale. Several were motivated by the fundamental principle of beneficence as well as their own self-interest in avoiding legal liability. Many physicians saw their role as an expert who educates the patient but retains control over the decision-making process; others took a more collaborative approach, encouraging patients to assume decisional priority. The decision-making process often was modified by patient, physician, and environmental factors. The physicians in this study demonstrated a positive, flexible approach toward including patients in decision-making. A one-dimensional model of shared decision-making based solely on the principle of autonomy fails to account for variability in how physicians allocate decisional priority and is therefore ethically inadequate.

Cancer, 2008

BACKGROUND.Hope is important to patients, yet physicians are sometimes unsure how to promote hope... more BACKGROUND.Hope is important to patients, yet physicians are sometimes unsure how to promote hope in the face of life-threatening illness.Hope is important to patients, yet physicians are sometimes unsure how to promote hope in the face of life-threatening illness.ANALYSIS.Hope in medicine is of two kinds: specific (hope for specific outcomes) and generalized (a nonspecific sense of hopefulness). At the time of diagnosis of a life-ending condition, the specific goal of a long life is dashed, and there may be no medically plausible specific outcome that the patient feels is worth wishing for. Yet the physician may nonetheless maintain an open-ended hopefulness that is compatible with the physician's obligation to be truthful; this hopefulness can help sustain patient and family through the turbulent period of adaptation to the unwelcome reality of major illness. As this adaptation evolves, the physician can help patients and families adapt to suffering and loss of control by selecting and achieving specific goals such as improvement of the patient's environment in hospital or hospice, pain control, and relief of sleeplessness. Thus hope for specific (but far more modest) future events can again become a positive part of the patient s emotional landscape. The authors do not propose that physicians remain upbeat no matter the circumstance, for they must respect the constraints of reality and the patients' mortality. However, physicians can provide both cognitive and affective support as patients learn how to adapt. Hope and hopefulness are both important in this process.Hope in medicine is of two kinds: specific (hope for specific outcomes) and generalized (a nonspecific sense of hopefulness). At the time of diagnosis of a life-ending condition, the specific goal of a long life is dashed, and there may be no medically plausible specific outcome that the patient feels is worth wishing for. Yet the physician may nonetheless maintain an open-ended hopefulness that is compatible with the physician's obligation to be truthful; this hopefulness can help sustain patient and family through the turbulent period of adaptation to the unwelcome reality of major illness. As this adaptation evolves, the physician can help patients and families adapt to suffering and loss of control by selecting and achieving specific goals such as improvement of the patient's environment in hospital or hospice, pain control, and relief of sleeplessness. Thus hope for specific (but far more modest) future events can again become a positive part of the patient s emotional landscape. The authors do not propose that physicians remain upbeat no matter the circumstance, for they must respect the constraints of reality and the patients' mortality. However, physicians can provide both cognitive and affective support as patients learn how to adapt. Hope and hopefulness are both important in this process.SUMMARY.Hope is always important to patients. Physicians can and should promote hopefulness without endorsing unrealistic hope. Cancer 2008. © 2008 American Cancer Society.Hope is always important to patients. Physicians can and should promote hopefulness without endorsing unrealistic hope. Cancer 2008. © 2008 American Cancer Society.

Genetics in Medicine, 2008

American Journal of Bioethics, 2007

... Consent: Informed, Simple, Implied and Presumed. View full textDownload full text Full access... more ... Consent: Informed, Simple, Implied and Presumed. View full textDownload full text Full access. DOI: 10.1080/15265160701710329 Laurence B. McCullough a , Amy L. McGuire a & Simon N. Whitney a pages 49-50. ... 20042. Whitney, SN, McGuire, AL and McCullough, LB 2004. ...

Journal of Law Medicine & Ethics, 2006

Genome Medicine, 2009

The Genetic Information Nondiscrimination Act of 2008 (GINA) was recently enacted in the United S... more The Genetic Information Nondiscrimination Act of 2008 (GINA) was recently enacted in the United States. Its supporters have applauded the passage of GINA, and they hope that it will alleviate public fear about genetic discrimination and facilitate genetic testing and participation in genetic research. Critics worry that GINA does not provide adequate protection because it fails to address discrimination on the basis of non-genetic health-related information, and it only regulates the use of genetic information in health insurance and employment. Despite these limitations, GINA represents a major step forward in US policy. Additional research is needed to assess the impact of GINA on industry practice and public opinion. In the mean time, education about GINA and its limitations can help individuals make more informed decisions about genetic testing and participation in genetic research.

Journal of Law Medicine & Ethics, 2005

World Journal of Surgery, 2009

With recent advances in DNA sequencing technology, medicine is entering an era in which a persona... more With recent advances in DNA sequencing technology, medicine is entering an era in which a personalized genomic approach to diagnosis and treatment of disease is feasible. However, discovering the role of altered DNA sequences in various disease states will be a challenging task. The genomic approach offers great promise for diseases, such as pancreatic cancer, in which the effect of current diagnostic and treatment modalities is disappointing. To facilitate the characterization of the genome of pancreatic cancer, high-quality and well-annotated tissue repositories are needed. This article summarizes the basic principles that guide the creation of such a repository, including sample processing and preservation techniques, sample size and composition, and collection of clinical data elements.

Nature Reviews Genetics, 2010

American Journal of Bioethics, 2009

Purpose: This study explores social networkers' interest in and attitudes toward personal genome ... more Purpose: This study explores social networkers' interest in and attitudes toward personal genome testing (PGT), focusing on expectations related to the clinical integration of PGT results. Methods: An online survey of 1,087 social networking users was conducted to assess 1) use and interest in PGT; 2) attitudes toward PGT companies and test results; and 3) expectations for the clinical integration of PGT. Descriptive statistics were calculated to summarize respondents' characteristics and responses. Results: Six percent of respondents have used PGT, 64% would consider using PGT, and 30% would not use PGT. Of those who would consider using PGT, 74% report they would use it to gain knowledge about disease in their family. 34% of all respondents consider the information obtained from PGT to be a medical diagnosis. 78% of those who would consider PGT would ask their physician for help interpreting test results, and 61% of all respondents believe physicians have a professional obligation to help individuals interpret PGT results. Conclusion: Respondents express interest in using PGT services, primarily for purposes related to their medical care and expect physicians to help interpret PGT results. Physicians should therefore be prepared for patient demands for information and counsel on the basis of PGT results.

American Journal of Bioethics, 2005

Medical Care, 2005

Physicians are encouraged to actively involve patients in clinical decision-making, but this expe... more Physicians are encouraged to actively involve patients in clinical decision-making, but this expectation has not been adequately examined from the physicians' perspective. Our objective was to identify and characterize physicians' attitudes toward patient participation in decision-making and to gain insight into how they consequently think about and structure the decision-making process. This was a qualitative cross-sectional study of physicians' reported attitudes and practices. The study took place in private practice and academic physicians' practices. A total of 53 academic and private practice physicians from primary care and surgical specialties, ranging from first year residents to recently retired, participated in the study. We performed a qualitative analysis of semistructured individual interviews. The physicians in this study expressed consistently positive attitudes toward patient participation in medical decision-making. They identified patient autonomy as an essential justification for patient participation but often went beyond an autonomy-based rationale. Several were motivated by the fundamental principle of beneficence as well as their own self-interest in avoiding legal liability. Many physicians saw their role as an expert who educates the patient but retains control over the decision-making process; others took a more collaborative approach, encouraging patients to assume decisional priority. The decision-making process often was modified by patient, physician, and environmental factors. The physicians in this study demonstrated a positive, flexible approach toward including patients in decision-making. A one-dimensional model of shared decision-making based solely on the principle of autonomy fails to account for variability in how physicians allocate decisional priority and is therefore ethically inadequate.

Cancer, 2008

BACKGROUND.Hope is important to patients, yet physicians are sometimes unsure how to promote hope... more BACKGROUND.Hope is important to patients, yet physicians are sometimes unsure how to promote hope in the face of life-threatening illness.Hope is important to patients, yet physicians are sometimes unsure how to promote hope in the face of life-threatening illness.ANALYSIS.Hope in medicine is of two kinds: specific (hope for specific outcomes) and generalized (a nonspecific sense of hopefulness). At the time of diagnosis of a life-ending condition, the specific goal of a long life is dashed, and there may be no medically plausible specific outcome that the patient feels is worth wishing for. Yet the physician may nonetheless maintain an open-ended hopefulness that is compatible with the physician's obligation to be truthful; this hopefulness can help sustain patient and family through the turbulent period of adaptation to the unwelcome reality of major illness. As this adaptation evolves, the physician can help patients and families adapt to suffering and loss of control by selecting and achieving specific goals such as improvement of the patient's environment in hospital or hospice, pain control, and relief of sleeplessness. Thus hope for specific (but far more modest) future events can again become a positive part of the patient s emotional landscape. The authors do not propose that physicians remain upbeat no matter the circumstance, for they must respect the constraints of reality and the patients' mortality. However, physicians can provide both cognitive and affective support as patients learn how to adapt. Hope and hopefulness are both important in this process.Hope in medicine is of two kinds: specific (hope for specific outcomes) and generalized (a nonspecific sense of hopefulness). At the time of diagnosis of a life-ending condition, the specific goal of a long life is dashed, and there may be no medically plausible specific outcome that the patient feels is worth wishing for. Yet the physician may nonetheless maintain an open-ended hopefulness that is compatible with the physician's obligation to be truthful; this hopefulness can help sustain patient and family through the turbulent period of adaptation to the unwelcome reality of major illness. As this adaptation evolves, the physician can help patients and families adapt to suffering and loss of control by selecting and achieving specific goals such as improvement of the patient's environment in hospital or hospice, pain control, and relief of sleeplessness. Thus hope for specific (but far more modest) future events can again become a positive part of the patient s emotional landscape. The authors do not propose that physicians remain upbeat no matter the circumstance, for they must respect the constraints of reality and the patients' mortality. However, physicians can provide both cognitive and affective support as patients learn how to adapt. Hope and hopefulness are both important in this process.SUMMARY.Hope is always important to patients. Physicians can and should promote hopefulness without endorsing unrealistic hope. Cancer 2008. © 2008 American Cancer Society.Hope is always important to patients. Physicians can and should promote hopefulness without endorsing unrealistic hope. Cancer 2008. © 2008 American Cancer Society.

Genetics in Medicine, 2008

American Journal of Bioethics, 2007

... Consent: Informed, Simple, Implied and Presumed. View full textDownload full text Full access... more ... Consent: Informed, Simple, Implied and Presumed. View full textDownload full text Full access. DOI: 10.1080/15265160701710329 Laurence B. McCullough a , Amy L. McGuire a & Simon N. Whitney a pages 49-50. ... 20042. Whitney, SN, McGuire, AL and McCullough, LB 2004. ...

Journal of Law Medicine & Ethics, 2006

Genome Medicine, 2009

The Genetic Information Nondiscrimination Act of 2008 (GINA) was recently enacted in the United S... more The Genetic Information Nondiscrimination Act of 2008 (GINA) was recently enacted in the United States. Its supporters have applauded the passage of GINA, and they hope that it will alleviate public fear about genetic discrimination and facilitate genetic testing and participation in genetic research. Critics worry that GINA does not provide adequate protection because it fails to address discrimination on the basis of non-genetic health-related information, and it only regulates the use of genetic information in health insurance and employment. Despite these limitations, GINA represents a major step forward in US policy. Additional research is needed to assess the impact of GINA on industry practice and public opinion. In the mean time, education about GINA and its limitations can help individuals make more informed decisions about genetic testing and participation in genetic research.

Journal of Law Medicine & Ethics, 2005

World Journal of Surgery, 2009

With recent advances in DNA sequencing technology, medicine is entering an era in which a persona... more With recent advances in DNA sequencing technology, medicine is entering an era in which a personalized genomic approach to diagnosis and treatment of disease is feasible. However, discovering the role of altered DNA sequences in various disease states will be a challenging task. The genomic approach offers great promise for diseases, such as pancreatic cancer, in which the effect of current diagnostic and treatment modalities is disappointing. To facilitate the characterization of the genome of pancreatic cancer, high-quality and well-annotated tissue repositories are needed. This article summarizes the basic principles that guide the creation of such a repository, including sample processing and preservation techniques, sample size and composition, and collection of clinical data elements.

Nature Reviews Genetics, 2010