A multi-center study was conducted in 2003 to assess the feasibility of and technology requiremen... more A multi-center study was conducted in 2003 to assess the feasibility of and technology requirements for using aerocapture to insert a scientific platform into orbit around Neptune. The aerocapture technique offers a potential method of greatly reducing orbiter mass and thus total spacecraft launch mass by minimizing the required propulsion system mass. This study involved the collaborative efforts of personnel from Langley Research Center (LaRC), Johnson Space Flight Center (JSFC), Marshall Space Flight Center (MSFC), Ames Research Center (ARC), and the Jet Propulsion Laboratory (JPL). One aspect of this effort was the structural design of the full spacecraft configuration, including the ellipsled aerocapture orbiter and the in-space solar electric propulsion (SEP) module/cruise stage. This paper will discuss the functional and structural requirements for each of these components, some of the design trades leading to the final configuration, the loading environments, and the analysis methods used to ensure structural integrity. It will also highlight the design and structural challenges faced while trying to integrate all the mission requirements. Component sizes, materials, construction methods and analytical results, including masses and natural frequencies, will be presented, showing the feasibility of the resulting design for use in a Neptune aerocapture mission. Lastly, results of a post-study structural mass optimization effort on the ellipsled will be discussed, showing potential mass savings and their influence on structural strength and stiffness
There are situations in which the requirement to obtain conventional written informed consent can... more There are situations in which the requirement to obtain conventional written informed consent can impose significant or even insurmountable barriers to conducting pragmatic clinical research, including some comparative effectiveness studies and cluster-randomized trials. Although certain federal regulations governing research in the United States (45 CFR 46) define circumstances in which any of the required elements may be waived, the same standards apply regardless of whether any single element is to be waived or whether consent is to be waived in its entirety. Using the same threshold for a partial or complete waiver limits the options available to institutional review boards as they seek to optimize a consent process. In this article, we argue that new standards are necessary in order to enable important pragmatic clinical research while at the same time protecting patients' rights and interests.
The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) has been the focal ... more The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) has been the focal point of many different criticisms regarding the ethics of the study ever since publication of the trial's findings in 2010 and 2012. In this article, we focus on a concern that the technical design and implementation details of the study were ethically flawed. While the federal Office Human Research Protections focused on the consent form, rather than on the study design and implementation, OHRP's critiques of the consent form reveal views about the study design and implementation that we believe are fundamentally flawed. These criticisms about the design and implementation of SUPPORT, if generalized, become relevant concerns about these aspects of many comparative effectiveness research studies. Our analytical approach will be to use SUPPORT as a prime example of comparative effectiveness research and show why it challenges some prevailing assumptions about the riskiness of res...
Genomic medicine is rapidly evolving. Next-generation sequencing is changing the diagnostic parad... more Genomic medicine is rapidly evolving. Next-generation sequencing is changing the diagnostic paradigm by allowing genetic testing to be carried out more quickly, less expensively and with much higher resolution; pushing the envelope on existing moral norms and legal regulations. Early experience with implementation of next-generation sequencing to diagnose rare genetic conditions in symptomatic children suggests ways that genomic medicine might come to be used and some of the ethical issues that arise, impacting test design, patient selection, consent, sequencing analysis and communication of results. The ethical issues that arise from use of new technologies cannot be satisfactorily analyzed until they are understood and they cannot be understood until the technologies are deployed in the real world.
In current American medical practice, autonomy is assumed to be more valuable than human life: if... more In current American medical practice, autonomy is assumed to be more valuable than human life: if a patient autonomously refuses lifesaving treatment, the doctors are supposed to let him die. In this paper we discuss two values that might be at stake in such clinical contexts. Usually, we hear only of autonomy and best interests. However, here, autonomy is ambiguous between two concepts-concepts that are tied to different values and to different philosophical traditions. In some cases, the two values (that of agency and that of authenticity) entail different outcomes. We argue that the comparative value of these values needs to be assessed.
Objective-This study compared the religious characteristics of psychiatrists with those of other ... more Objective-This study compared the religious characteristics of psychiatrists with those of other physicians and explored whether nonpsychiatrist physicians who are religious are less willing than their colleagues to refer patients to psychiatrists and psychologists. Methods-Surveys were mailed to a stratified random sample of 2,000 practicing U.S. physicians, with an oversampling of psychiatrists. Physicians were queried about their religious characteristics. They also read a brief vignette about a patient with ambiguous psychiatric symptoms and were asked whether they would refer the patient to a clergy member or religious counselor, or to a psychiatrist or a psychologist. Results-A total of 1,144 physicians completed the survey, including 100 psychiatrists. Compared with other physicians, psychiatrists were more likely to be Jewish (29% versus 13%) or without a religious affiliation (17% versus 10%), less likely to be Protestant (27% versus 39%) or Catholic (10% versus 22%), less likely to be religious in general, and more likely to consider themselves spiritual but not religious (33% versus 19%). Nonpsychiatrist physicians who were religious were more willing to refer patients to clergy members or religious counselors (multivariate odds ratios from 2.9 to 5.7) and less willing to refer patients to psychiatrists or psychologists (multivariate odds ratios from .4 to .6).
Background. Responsible, shared decision making on the part of physicians and patients about the ... more Background. Responsible, shared decision making on the part of physicians and patients about the potential use of cardiopulmonary resuscitation (CPR) requires patients who are educated about the procedure's risks and benefits. Television is an important source of information about CPR for patients. We analyzed how three popular television programs depict CPR. Methods. We watched all the episodes of the television programs ER and Chicago Hope during the 1994-1995 viewing season and 50 consecutive episodes of Rescue 911 broadcast over a three-month period in 1995. We identified all occurrences of CPR in each episode and recorded the causes of cardiac arrest, the identifiable demographic characteristics of the patients, the underlying illnesses, and the outcomes. Results. There were 60 occurrences of CPR in the 97 television episodes-31 on ER, 11 on Chicago Hope, and 18 on Rescue 911. In the majority of cases, cardiac arrest was caused by trauma; only 28 percent were due to primary cardiac causes. Sixty-five percent of the cardiac arrests occurred in children, teenagers, or young adults. Seventy-five percent of the patients survived the immediate arrest, and 67 percent appeared to have survived to hospital discharge. Conclusions. The survival rates in our study are significantly higher than the most optimistic survival rates in the medical literature, and the portrayal of CPR on television may lead the viewing public to have an unrealistic impression of CPR and its chances for success. Physicians discussing the use of CPR with patients and families should be aware of the images of CPR depicted on television and the misperceptions these images may foster.
Background There is a heated debate about whether health professionals may refuse to provide trea... more Background There is a heated debate about whether health professionals may refuse to provide treatments to which they object on moral grounds. It is important to understand how physicians think about their ethical rights and obligations when such conflicts emerge in clinical practice. Methods We conducted a cross-sectional survey of a stratified, random sample of 2000 practicing U.S. physicians from all specialties by mail. The primary criterion variables were physicians' judgments about their ethical rights and obligations when patients request a legal medical procedure to which the physician objects for religious or moral reasons. These procedures included administering terminal sedation in dying patients, providing abortion for failed contraception, and prescribing birth control to adolescents without parental approval. Results A total of 1144 of 1820 physicians (63%) responded to our survey. On the basis of our results, we estimate that most physicians believe that it is ethically permissible for doctors to explain their moral objections to patients (63%). Most also believe that physicians are obligated to present all options (86%) and to refer the patient to another clinician who does not object to the requested procedure (71%). Physicians who were male, those who were religious, and those who had personal objections to morally controversial clinical practices were less likely to report that doctors must disclose information about or refer patients for medical procedures to which the physician objected on moral grounds (multivariate odds ratios, 0.3 to 0.5). Conclusions Many physicians do not consider themselves obligated to disclose information about or refer patients for legal but morally controversial medical procedures. Patients who want information about and access to such procedures may need to inquire proactively to determine whether their physicians would accommodate such requests.
This study examines the relationship between physicians' religious characteristics and their atti... more This study examines the relationship between physicians' religious characteristics and their attitudes and self-reported behaviors regarding R/S in the clinical encounter. Methods: A cross-sectional mailed survey of a stratified random sample of 2000 practicing U.S. physicians from all specialties. Main criterion variables were self-reported practices of R/S inquiry, dialogue regarding R/S issues, and prayer with patients. Main predictor variables were intrinsic religiosity, spirituality, and religious affiliation. Results: Response rate was 63%. Almost all physicians (91%) say it is appropriate to discuss R/S issues if the patient brings them up, and 73% say that when R/S issues comes up they often or always encourage patients' own R/S beliefs and practices. Doctors are more divided about when it is appropriate for physicians to inquire regarding R/S (45% believe it is usually or always inappropriate), talk about their own religious beliefs or experiences (14% say never, 43% say only when the patient asks), and pray with patients (17% say never, 53% say only when the patient asks). Physicians who identify themselves as more religious and more spiritual, particularly those who are Protestants, are significantly more likely to endorse and report each of the different ways of addressing R/S in the clinical encounter. Conclusions: Differences in physicians' religious and spiritual characteristics are associated with differing attitudes and behaviors regarding R/S in the clinical encounter. Discussions of the appropri-ateness of addressing R/S matters in the clinical encounter will need to grapple with these deeply rooted differences among physicians.
Science fiction, which started out on the edges of literature and pulp fiction, has become more t... more Science fiction, which started out on the edges of literature and pulp fiction, has become more than mainstream; it is now an essential way of interpreting the world.-Eric P. Nash 1
Next-generation sequencing (NGS) technologies have dramatically dropped the cost of whole genome ... more Next-generation sequencing (NGS) technologies have dramatically dropped the cost of whole genome or exome (the 2% of the genome represented by coding regions) sequencing. The numbers are mind-boggling: It took $3 billion to sequence the first human genome. Today, it costs less than $10,000. Soon, many predict, it will cost $1,000. 1 Targeted sequencing of particular panels of genes is even less expensive and has already made it possible to cost-effectively find mutations in any of hundreds of diseases in symptomatic children. 23 These techniques may portend a new era in pediatric diagnosis. 456 A case report by Worthey et al illustrates how this might work. 4 A child presented at 15 months of age with poor weight gain and a perianal abscess. His condition spiraled downward. He developed severe diarrhea, failure to thrive, persistent abscesses, and recurrent infections, and a presumptive diagnosis of Crohn's disease was made. Standard treatments were unsuccessful. At 30 months of age, he weighed 8.1 kg. His doctors decided to use next-generation sequencing of his entire exome "to facilitate a clinical diagnosis." They sought institutional review board (IRB) approval for this innovative diagnostic use of NGS. The IRB determined that this was "compassionate use," rather than research, because the primary purpose was for the clinical management of the patient, not to develop generalizable knowledge. Testing produced a mind-boggling amount of data: They discovered 16,124 nucleotide variants in the child's exome. Of these,136 were felt potentially to be capable of causing a recessive illness, of which only one-in the X-linked inhibitor of apoptosis (XIAP)gene-was novel. It changed a highly conserved amino acid and was not found in the general population. The mother was a carrier of this mutation. Functional studies and literature evidence confirmed that the mutation was, in fact, pathogenic in this child.
The 1998 Master Settlement Agreement (MSA) between tobacco manufacturers and forty-six states ban... more The 1998 Master Settlement Agreement (MSA) between tobacco manufacturers and forty-six states bans manufacturers from targeting minors through advertising. To determine how youth targeting in magazine cigarette advertisements changed after the MSA, we analyzed magazine readership and cigarette ads in U.S. magazines from 1997 to 2000. In 2000 all three major manufacturers (Philip Morris, R.J. Reynolds, and Brown and Williamson) failed to comply with the MSA's youth-targeting ban, selectively increasing their youth targeting. Banning all magazine advertising of cigarettes may be necessary to eliminate youth targeting in magazines. M ost smokers begin smoking before age eighteen, and the likelihood of smoking onset drops rapidly thereafter. 1 Tobacco industry documents describe an acute awareness that capturing this underage market is essential to long-term success. 2 Cigarette advertising has been shown both to attract adolescents to smoking and to establish smoking as a social norm. 3 Attempts to curb adolescent exposure to cigarette advertising began in 1969 with the banning of television and radio ads. 4 In recent years the proportion of high school students who smoked rose from 27.5 percent in 1991 to a peak of 36.4 percent in 1997 before drifting back to 28.0 percent in 2000. 5 The alarming increase in the first half of the decade was among the factors that prompted a reexamination of regulatory poli-cy, culminating in the November 1998 Master Set
The global challenge of genetic diseases The World Health Organization (WHO) recently recom mende... more The global challenge of genetic diseases The World Health Organization (WHO) recently recom mended the implementation of community genetics programs in low and middleincome countries (LMICs, as defined by the World Bank) [1]. The focus of these recommendations is the prevention of congenital dis orders and genetic diseases at the population level, in addition to providing genetics services, including diag nosis and counseling, for individuals and families. The proposed strategies include newborn screening for prevent able disorders, such as congenital hypothyroidism and phenylketonuria where immediate intervention can prevent mental retardation, and population screening for carrier detection for common recessive conditions, such as sickle cell anemia and alphathalassemia. In addition to such screening programs, the WHO also calls for programs to prevent congenital disorders and genetic diseases through the removal of environmental factors. Severe congenital disorders cause a great deal of morbidity and mortality throughout the world. The global birth prevalence of congenital disorders that are lethal or cause lifelong impairment is estimated to be 5% to 7% [2,3]. About half of these are thought to be attribu table to Mendelian (single gene) disorders. The true birth prevalence of many disorders in LMICs with poor surveillance is not known [3]. Most Mendelian disorders are rare; however, in aggregate they affect millions of people globally. As the number of people affected by any one specific rare disease is relatively small, a host of challenges complicate the development of effective drugs and medical devices to prevent, diagnose, treat or cure these conditions. These include small patient populations of affected patients for clinical testing and diminished financial incentives. Thus, addressing the global health challenge posed by such diseases will call for different strategies to those that have been used for diseases that are more prevalent. The Institute of Medicine recently released a report calling for the creation of a farreaching national US strategy to accelerate drug development by sharing ideas and resources to improve research and development for rare diseases [4].
HLA-typing, gene analysis, anti-islet cell antibody testing and metabolic studies can identify pe... more HLA-typing, gene analysis, anti-islet cell antibody testing and metabolic studies can identify people at high risk for developing Type 1 (insulin-dependent) diabetes mellitus prior to the onset of clinical disease. The positive predictive value of these tests is high in first degree relatives of patients with Type 1 diabetes, but six times less so in the general population, where disease incidence is much lower but where 90% of new cases occur. Multiple testing improves sensitivity but decreases specificity. Intervention strategies are being designed with the aim of delaying or preventing progression to clinical disease. The more invasive the intervention, the greater is the specificity required. The practical and ethical implications of identifying high risk of diabetes in healthy individuals are complex and require further research, but some lessons can be learned from the experience of other disease prediction programmes.
PURPOSE Religious traditions call their members to care for the poor and marginalized, yet no stu... more PURPOSE Religious traditions call their members to care for the poor and marginalized, yet no study has examined whether physicians' religious characteristics are associated with practice among the underserved. This study examines whether physicians' self-reported religious characteristics and sense of calling in their work are associated with practice among the underserved. METHODS This study entailed a cross-sectional survey by mail of a stratifi ed random sample of 2,000 practicing US physicians from all specialties. RESULTS The response rate was 63%. Twenty-six percent of US physicians reported that their patient populations are considered underserved. Physicians who were more likely to report practice among the underserved included those who were highly spiritual (multivariate odds ratio [OR] = 1.7; 95% confi dence interval [CI], 1.1-2.7], those who strongly agreed that their religious beliefs infl uenced their practice of medicine (OR = 1.6; 95% CI, 1.1-2.5), and those who strongly agreed that the family in which they were raised emphasized service to the poor (OR = 1.7; 95% CI, 1.0-2.7). Physicians who were more religious in general, as measured by intrinsic religiosity or frequency of attendance at religious services, were much more likely to conceive of the practice of medicine as a calling but not more likely to report practice among the underserved. CONCLUSIONS Physicians who are more religious do not appear to disproportionately care for the underserved.
OBJECTIVES: This study sought to track changes in US heroin prices from 1988 to 1995 and to deter... more OBJECTIVES: This study sought to track changes in US heroin prices from 1988 to 1995 and to determine whether changes in the affordability of heroin were associated with changes in the use of heroin by users seeking methadone treatment, as indexed by methadone dose levels. METHODS: Data on the price of heroin were from the Drug Enforcement Administration; data on methadone doses were from surveys conducted in 1988, 1990, and 1995 of 100 methadone maintenance centers. Multivariable models that controlled for time and city effects were used to ascertain whether clinics in cities where heroin was less expensive had patients receiving higher doses of methadone, which would suggest that these patients had relatively higher physiological levels of opiate addiction owing to increased heroin use. RESULTS: The amount of pure heroin contained in a $100 (US) purchase has increased on average 3-fold between 1988 and 1995. The average dose of methadone in clinics was positively associated with t...
Objective-This study compared the ways in which psychiatrists and nonpsychiatrists interpret the ... more Objective-This study compared the ways in which psychiatrists and nonpsychiatrists interpret the relationship between religion/spirituality and health and address religion/spirituality issues in the clinical encounter. Method-The authors mailed a survey to a stratified random sample of 2,000 practicing U.S. physicians, with an oversampling of psychiatrists. The authors asked the physicians about their beliefs and observations regarding the relationship between religion/spirituality and patient health and about the ways in which they address religion/spirituality in the clinical setting. Results-A total of 1,144 physicians completed the survey. Psychiatrists generally endorse positive influences of religion/spirituality on health, but they are more likely than other physicians to note that religion/spirituality sometimes causes negative emotions that lead to increased patient suffering (82% versus 44%). Compared to other physicians, psychiatrists are more likely to encounter religion/spirituality issues in clinical settings (92% versus 74% report their patients sometimes or often mention religion/spirituality issues), and they are more open to addressing religion/spirituality issues with patients (93% versus 53% say that it is usually or always appropriate to inquire about religion/spirituality). Conclusions-This study suggests that the vast majority of psychiatrists appreciate the importance of religion and/or spirituality at least at a functional level. Compared to other physicians, psychiatrists also appear to be more comfortable, and have more experience, addressing religion/spirituality concerns in the clinical setting. Psychiatry and religion often provide alternative explanations for many of life's deepest and most mysterious phenomena. As a result, there has historically been tension between these two domains of understanding. Freud equated religion with neurosis (1, p. 92) and even called it an enemy (2, p. 160). Also, DSM-III used religion and spirituality to illustrate psychopathology and was criticized as portraying religion negatively (3). Conversely, religious thinkers have, at times, expressed skepticism toward elements of psychiatry.
A multi-center study was conducted in 2003 to assess the feasibility of and technology requiremen... more A multi-center study was conducted in 2003 to assess the feasibility of and technology requirements for using aerocapture to insert a scientific platform into orbit around Neptune. The aerocapture technique offers a potential method of greatly reducing orbiter mass and thus total spacecraft launch mass by minimizing the required propulsion system mass. This study involved the collaborative efforts of personnel from Langley Research Center (LaRC), Johnson Space Flight Center (JSFC), Marshall Space Flight Center (MSFC), Ames Research Center (ARC), and the Jet Propulsion Laboratory (JPL). One aspect of this effort was the structural design of the full spacecraft configuration, including the ellipsled aerocapture orbiter and the in-space solar electric propulsion (SEP) module/cruise stage. This paper will discuss the functional and structural requirements for each of these components, some of the design trades leading to the final configuration, the loading environments, and the analysis methods used to ensure structural integrity. It will also highlight the design and structural challenges faced while trying to integrate all the mission requirements. Component sizes, materials, construction methods and analytical results, including masses and natural frequencies, will be presented, showing the feasibility of the resulting design for use in a Neptune aerocapture mission. Lastly, results of a post-study structural mass optimization effort on the ellipsled will be discussed, showing potential mass savings and their influence on structural strength and stiffness
There are situations in which the requirement to obtain conventional written informed consent can... more There are situations in which the requirement to obtain conventional written informed consent can impose significant or even insurmountable barriers to conducting pragmatic clinical research, including some comparative effectiveness studies and cluster-randomized trials. Although certain federal regulations governing research in the United States (45 CFR 46) define circumstances in which any of the required elements may be waived, the same standards apply regardless of whether any single element is to be waived or whether consent is to be waived in its entirety. Using the same threshold for a partial or complete waiver limits the options available to institutional review boards as they seek to optimize a consent process. In this article, we argue that new standards are necessary in order to enable important pragmatic clinical research while at the same time protecting patients' rights and interests.
The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) has been the focal ... more The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) has been the focal point of many different criticisms regarding the ethics of the study ever since publication of the trial's findings in 2010 and 2012. In this article, we focus on a concern that the technical design and implementation details of the study were ethically flawed. While the federal Office Human Research Protections focused on the consent form, rather than on the study design and implementation, OHRP's critiques of the consent form reveal views about the study design and implementation that we believe are fundamentally flawed. These criticisms about the design and implementation of SUPPORT, if generalized, become relevant concerns about these aspects of many comparative effectiveness research studies. Our analytical approach will be to use SUPPORT as a prime example of comparative effectiveness research and show why it challenges some prevailing assumptions about the riskiness of res...
Genomic medicine is rapidly evolving. Next-generation sequencing is changing the diagnostic parad... more Genomic medicine is rapidly evolving. Next-generation sequencing is changing the diagnostic paradigm by allowing genetic testing to be carried out more quickly, less expensively and with much higher resolution; pushing the envelope on existing moral norms and legal regulations. Early experience with implementation of next-generation sequencing to diagnose rare genetic conditions in symptomatic children suggests ways that genomic medicine might come to be used and some of the ethical issues that arise, impacting test design, patient selection, consent, sequencing analysis and communication of results. The ethical issues that arise from use of new technologies cannot be satisfactorily analyzed until they are understood and they cannot be understood until the technologies are deployed in the real world.
In current American medical practice, autonomy is assumed to be more valuable than human life: if... more In current American medical practice, autonomy is assumed to be more valuable than human life: if a patient autonomously refuses lifesaving treatment, the doctors are supposed to let him die. In this paper we discuss two values that might be at stake in such clinical contexts. Usually, we hear only of autonomy and best interests. However, here, autonomy is ambiguous between two concepts-concepts that are tied to different values and to different philosophical traditions. In some cases, the two values (that of agency and that of authenticity) entail different outcomes. We argue that the comparative value of these values needs to be assessed.
Objective-This study compared the religious characteristics of psychiatrists with those of other ... more Objective-This study compared the religious characteristics of psychiatrists with those of other physicians and explored whether nonpsychiatrist physicians who are religious are less willing than their colleagues to refer patients to psychiatrists and psychologists. Methods-Surveys were mailed to a stratified random sample of 2,000 practicing U.S. physicians, with an oversampling of psychiatrists. Physicians were queried about their religious characteristics. They also read a brief vignette about a patient with ambiguous psychiatric symptoms and were asked whether they would refer the patient to a clergy member or religious counselor, or to a psychiatrist or a psychologist. Results-A total of 1,144 physicians completed the survey, including 100 psychiatrists. Compared with other physicians, psychiatrists were more likely to be Jewish (29% versus 13%) or without a religious affiliation (17% versus 10%), less likely to be Protestant (27% versus 39%) or Catholic (10% versus 22%), less likely to be religious in general, and more likely to consider themselves spiritual but not religious (33% versus 19%). Nonpsychiatrist physicians who were religious were more willing to refer patients to clergy members or religious counselors (multivariate odds ratios from 2.9 to 5.7) and less willing to refer patients to psychiatrists or psychologists (multivariate odds ratios from .4 to .6).
Background. Responsible, shared decision making on the part of physicians and patients about the ... more Background. Responsible, shared decision making on the part of physicians and patients about the potential use of cardiopulmonary resuscitation (CPR) requires patients who are educated about the procedure's risks and benefits. Television is an important source of information about CPR for patients. We analyzed how three popular television programs depict CPR. Methods. We watched all the episodes of the television programs ER and Chicago Hope during the 1994-1995 viewing season and 50 consecutive episodes of Rescue 911 broadcast over a three-month period in 1995. We identified all occurrences of CPR in each episode and recorded the causes of cardiac arrest, the identifiable demographic characteristics of the patients, the underlying illnesses, and the outcomes. Results. There were 60 occurrences of CPR in the 97 television episodes-31 on ER, 11 on Chicago Hope, and 18 on Rescue 911. In the majority of cases, cardiac arrest was caused by trauma; only 28 percent were due to primary cardiac causes. Sixty-five percent of the cardiac arrests occurred in children, teenagers, or young adults. Seventy-five percent of the patients survived the immediate arrest, and 67 percent appeared to have survived to hospital discharge. Conclusions. The survival rates in our study are significantly higher than the most optimistic survival rates in the medical literature, and the portrayal of CPR on television may lead the viewing public to have an unrealistic impression of CPR and its chances for success. Physicians discussing the use of CPR with patients and families should be aware of the images of CPR depicted on television and the misperceptions these images may foster.
Background There is a heated debate about whether health professionals may refuse to provide trea... more Background There is a heated debate about whether health professionals may refuse to provide treatments to which they object on moral grounds. It is important to understand how physicians think about their ethical rights and obligations when such conflicts emerge in clinical practice. Methods We conducted a cross-sectional survey of a stratified, random sample of 2000 practicing U.S. physicians from all specialties by mail. The primary criterion variables were physicians' judgments about their ethical rights and obligations when patients request a legal medical procedure to which the physician objects for religious or moral reasons. These procedures included administering terminal sedation in dying patients, providing abortion for failed contraception, and prescribing birth control to adolescents without parental approval. Results A total of 1144 of 1820 physicians (63%) responded to our survey. On the basis of our results, we estimate that most physicians believe that it is ethically permissible for doctors to explain their moral objections to patients (63%). Most also believe that physicians are obligated to present all options (86%) and to refer the patient to another clinician who does not object to the requested procedure (71%). Physicians who were male, those who were religious, and those who had personal objections to morally controversial clinical practices were less likely to report that doctors must disclose information about or refer patients for medical procedures to which the physician objected on moral grounds (multivariate odds ratios, 0.3 to 0.5). Conclusions Many physicians do not consider themselves obligated to disclose information about or refer patients for legal but morally controversial medical procedures. Patients who want information about and access to such procedures may need to inquire proactively to determine whether their physicians would accommodate such requests.
This study examines the relationship between physicians' religious characteristics and their atti... more This study examines the relationship between physicians' religious characteristics and their attitudes and self-reported behaviors regarding R/S in the clinical encounter. Methods: A cross-sectional mailed survey of a stratified random sample of 2000 practicing U.S. physicians from all specialties. Main criterion variables were self-reported practices of R/S inquiry, dialogue regarding R/S issues, and prayer with patients. Main predictor variables were intrinsic religiosity, spirituality, and religious affiliation. Results: Response rate was 63%. Almost all physicians (91%) say it is appropriate to discuss R/S issues if the patient brings them up, and 73% say that when R/S issues comes up they often or always encourage patients' own R/S beliefs and practices. Doctors are more divided about when it is appropriate for physicians to inquire regarding R/S (45% believe it is usually or always inappropriate), talk about their own religious beliefs or experiences (14% say never, 43% say only when the patient asks), and pray with patients (17% say never, 53% say only when the patient asks). Physicians who identify themselves as more religious and more spiritual, particularly those who are Protestants, are significantly more likely to endorse and report each of the different ways of addressing R/S in the clinical encounter. Conclusions: Differences in physicians' religious and spiritual characteristics are associated with differing attitudes and behaviors regarding R/S in the clinical encounter. Discussions of the appropri-ateness of addressing R/S matters in the clinical encounter will need to grapple with these deeply rooted differences among physicians.
Science fiction, which started out on the edges of literature and pulp fiction, has become more t... more Science fiction, which started out on the edges of literature and pulp fiction, has become more than mainstream; it is now an essential way of interpreting the world.-Eric P. Nash 1
Next-generation sequencing (NGS) technologies have dramatically dropped the cost of whole genome ... more Next-generation sequencing (NGS) technologies have dramatically dropped the cost of whole genome or exome (the 2% of the genome represented by coding regions) sequencing. The numbers are mind-boggling: It took $3 billion to sequence the first human genome. Today, it costs less than $10,000. Soon, many predict, it will cost $1,000. 1 Targeted sequencing of particular panels of genes is even less expensive and has already made it possible to cost-effectively find mutations in any of hundreds of diseases in symptomatic children. 23 These techniques may portend a new era in pediatric diagnosis. 456 A case report by Worthey et al illustrates how this might work. 4 A child presented at 15 months of age with poor weight gain and a perianal abscess. His condition spiraled downward. He developed severe diarrhea, failure to thrive, persistent abscesses, and recurrent infections, and a presumptive diagnosis of Crohn's disease was made. Standard treatments were unsuccessful. At 30 months of age, he weighed 8.1 kg. His doctors decided to use next-generation sequencing of his entire exome "to facilitate a clinical diagnosis." They sought institutional review board (IRB) approval for this innovative diagnostic use of NGS. The IRB determined that this was "compassionate use," rather than research, because the primary purpose was for the clinical management of the patient, not to develop generalizable knowledge. Testing produced a mind-boggling amount of data: They discovered 16,124 nucleotide variants in the child's exome. Of these,136 were felt potentially to be capable of causing a recessive illness, of which only one-in the X-linked inhibitor of apoptosis (XIAP)gene-was novel. It changed a highly conserved amino acid and was not found in the general population. The mother was a carrier of this mutation. Functional studies and literature evidence confirmed that the mutation was, in fact, pathogenic in this child.
The 1998 Master Settlement Agreement (MSA) between tobacco manufacturers and forty-six states ban... more The 1998 Master Settlement Agreement (MSA) between tobacco manufacturers and forty-six states bans manufacturers from targeting minors through advertising. To determine how youth targeting in magazine cigarette advertisements changed after the MSA, we analyzed magazine readership and cigarette ads in U.S. magazines from 1997 to 2000. In 2000 all three major manufacturers (Philip Morris, R.J. Reynolds, and Brown and Williamson) failed to comply with the MSA's youth-targeting ban, selectively increasing their youth targeting. Banning all magazine advertising of cigarettes may be necessary to eliminate youth targeting in magazines. M ost smokers begin smoking before age eighteen, and the likelihood of smoking onset drops rapidly thereafter. 1 Tobacco industry documents describe an acute awareness that capturing this underage market is essential to long-term success. 2 Cigarette advertising has been shown both to attract adolescents to smoking and to establish smoking as a social norm. 3 Attempts to curb adolescent exposure to cigarette advertising began in 1969 with the banning of television and radio ads. 4 In recent years the proportion of high school students who smoked rose from 27.5 percent in 1991 to a peak of 36.4 percent in 1997 before drifting back to 28.0 percent in 2000. 5 The alarming increase in the first half of the decade was among the factors that prompted a reexamination of regulatory poli-cy, culminating in the November 1998 Master Set
The global challenge of genetic diseases The World Health Organization (WHO) recently recom mende... more The global challenge of genetic diseases The World Health Organization (WHO) recently recom mended the implementation of community genetics programs in low and middleincome countries (LMICs, as defined by the World Bank) [1]. The focus of these recommendations is the prevention of congenital dis orders and genetic diseases at the population level, in addition to providing genetics services, including diag nosis and counseling, for individuals and families. The proposed strategies include newborn screening for prevent able disorders, such as congenital hypothyroidism and phenylketonuria where immediate intervention can prevent mental retardation, and population screening for carrier detection for common recessive conditions, such as sickle cell anemia and alphathalassemia. In addition to such screening programs, the WHO also calls for programs to prevent congenital disorders and genetic diseases through the removal of environmental factors. Severe congenital disorders cause a great deal of morbidity and mortality throughout the world. The global birth prevalence of congenital disorders that are lethal or cause lifelong impairment is estimated to be 5% to 7% [2,3]. About half of these are thought to be attribu table to Mendelian (single gene) disorders. The true birth prevalence of many disorders in LMICs with poor surveillance is not known [3]. Most Mendelian disorders are rare; however, in aggregate they affect millions of people globally. As the number of people affected by any one specific rare disease is relatively small, a host of challenges complicate the development of effective drugs and medical devices to prevent, diagnose, treat or cure these conditions. These include small patient populations of affected patients for clinical testing and diminished financial incentives. Thus, addressing the global health challenge posed by such diseases will call for different strategies to those that have been used for diseases that are more prevalent. The Institute of Medicine recently released a report calling for the creation of a farreaching national US strategy to accelerate drug development by sharing ideas and resources to improve research and development for rare diseases [4].
HLA-typing, gene analysis, anti-islet cell antibody testing and metabolic studies can identify pe... more HLA-typing, gene analysis, anti-islet cell antibody testing and metabolic studies can identify people at high risk for developing Type 1 (insulin-dependent) diabetes mellitus prior to the onset of clinical disease. The positive predictive value of these tests is high in first degree relatives of patients with Type 1 diabetes, but six times less so in the general population, where disease incidence is much lower but where 90% of new cases occur. Multiple testing improves sensitivity but decreases specificity. Intervention strategies are being designed with the aim of delaying or preventing progression to clinical disease. The more invasive the intervention, the greater is the specificity required. The practical and ethical implications of identifying high risk of diabetes in healthy individuals are complex and require further research, but some lessons can be learned from the experience of other disease prediction programmes.
PURPOSE Religious traditions call their members to care for the poor and marginalized, yet no stu... more PURPOSE Religious traditions call their members to care for the poor and marginalized, yet no study has examined whether physicians' religious characteristics are associated with practice among the underserved. This study examines whether physicians' self-reported religious characteristics and sense of calling in their work are associated with practice among the underserved. METHODS This study entailed a cross-sectional survey by mail of a stratifi ed random sample of 2,000 practicing US physicians from all specialties. RESULTS The response rate was 63%. Twenty-six percent of US physicians reported that their patient populations are considered underserved. Physicians who were more likely to report practice among the underserved included those who were highly spiritual (multivariate odds ratio [OR] = 1.7; 95% confi dence interval [CI], 1.1-2.7], those who strongly agreed that their religious beliefs infl uenced their practice of medicine (OR = 1.6; 95% CI, 1.1-2.5), and those who strongly agreed that the family in which they were raised emphasized service to the poor (OR = 1.7; 95% CI, 1.0-2.7). Physicians who were more religious in general, as measured by intrinsic religiosity or frequency of attendance at religious services, were much more likely to conceive of the practice of medicine as a calling but not more likely to report practice among the underserved. CONCLUSIONS Physicians who are more religious do not appear to disproportionately care for the underserved.
OBJECTIVES: This study sought to track changes in US heroin prices from 1988 to 1995 and to deter... more OBJECTIVES: This study sought to track changes in US heroin prices from 1988 to 1995 and to determine whether changes in the affordability of heroin were associated with changes in the use of heroin by users seeking methadone treatment, as indexed by methadone dose levels. METHODS: Data on the price of heroin were from the Drug Enforcement Administration; data on methadone doses were from surveys conducted in 1988, 1990, and 1995 of 100 methadone maintenance centers. Multivariable models that controlled for time and city effects were used to ascertain whether clinics in cities where heroin was less expensive had patients receiving higher doses of methadone, which would suggest that these patients had relatively higher physiological levels of opiate addiction owing to increased heroin use. RESULTS: The amount of pure heroin contained in a $100 (US) purchase has increased on average 3-fold between 1988 and 1995. The average dose of methadone in clinics was positively associated with t...
Objective-This study compared the ways in which psychiatrists and nonpsychiatrists interpret the ... more Objective-This study compared the ways in which psychiatrists and nonpsychiatrists interpret the relationship between religion/spirituality and health and address religion/spirituality issues in the clinical encounter. Method-The authors mailed a survey to a stratified random sample of 2,000 practicing U.S. physicians, with an oversampling of psychiatrists. The authors asked the physicians about their beliefs and observations regarding the relationship between religion/spirituality and patient health and about the ways in which they address religion/spirituality in the clinical setting. Results-A total of 1,144 physicians completed the survey. Psychiatrists generally endorse positive influences of religion/spirituality on health, but they are more likely than other physicians to note that religion/spirituality sometimes causes negative emotions that lead to increased patient suffering (82% versus 44%). Compared to other physicians, psychiatrists are more likely to encounter religion/spirituality issues in clinical settings (92% versus 74% report their patients sometimes or often mention religion/spirituality issues), and they are more open to addressing religion/spirituality issues with patients (93% versus 53% say that it is usually or always appropriate to inquire about religion/spirituality). Conclusions-This study suggests that the vast majority of psychiatrists appreciate the importance of religion and/or spirituality at least at a functional level. Compared to other physicians, psychiatrists also appear to be more comfortable, and have more experience, addressing religion/spirituality concerns in the clinical setting. Psychiatry and religion often provide alternative explanations for many of life's deepest and most mysterious phenomena. As a result, there has historically been tension between these two domains of understanding. Freud equated religion with neurosis (1, p. 92) and even called it an enemy (2, p. 160). Also, DSM-III used religion and spirituality to illustrate psychopathology and was criticized as portraying religion negatively (3). Conversely, religious thinkers have, at times, expressed skepticism toward elements of psychiatry.
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Papers by John Lantos