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As climate change progresses, we humans might have to inhabit a world for which we are increasingly maladapted. If we were able to identify genes that directly influence our ability to thrive in a changing climate, would it be ethically justifiable to edit the human genome to enhance our ability to adapt to this new environment? Should we use gene editing not only to prevent significant disease but also to enhance our ability to function in the world? Here I suggest a "4-S framework" for analyzing the justifiability of gene editing that includes these considerations: (1) safety, (2) significance of harm to be averted, (3) succeeding generations, and (4) social consequences. [ABSTRACT FROM AUTHOR]

Background: Financial ties between physicians and the pharmaceutical and medical device industry are common, but little is known about how patient trust is affected by these ties.Objective: The purpose of this study was to evaluate how viewing online public disclosure of industry payments affects patients' trust ratings for physicians, the medical profession, and the pharmaceutical and medical device industry.Design: This was a randomized experimental evaluation.Participants: There were 278 English-speaking participants over age 18 who had seen a healthcare provider in the previous 12 months who took part in the study.Interventions: Participants searched for physicians on an online disclosure database, viewed payments from industry to the physicians, and assigned trust ratings. Participants were randomized to view physicians who received no payment ($0), low payment ($250-300), or high payment (>$13,000) from industry, or to a control arm in which they did not view the disclosure website. They also were asked to search for and then rate trust in their own physician.Main Measures: Primary outcomes were trust in individual physician, medical profession, and industry. These scales measure trust as a composite of honesty, fidelity, competence, and global trust.Key Results: Compared to physicians who received no payments, physicians who received payments over $13,000 received lower ratings for honesty [mean (SD): 3.36 (0.86) vs. 2.75 (0.95), p < 0.001] and fidelity [3.19 (0.65) vs. 2.89 (0.68), p = 0.01]. Among the 7.9% of participants who found their own physician on the website, ratings for honesty and fidelity decreased as the industry payment to the physician increased (honesty: Spearman's ρ = -0.52, p = 0.02; fidelity: Spearman's ρ = -0.55, p = 0.01). Viewing the disclosure website did not affect trust ratings for the medical profession or industry.Conclusions: Disclosure of industry payments to physicians affected perceptions of individual physician honesty and fidelity, but not perceptions of competence. Disclosure did not affect trust ratings for the medical profession or the pharmaceutical and medical device industry. ClinicalTrials.gov identifier: NCT02179632 ( https://clinicaltrials.gov/ct2/show/NCT02179632 ). [ABSTRACT FROM AUTHOR]

This American College of Physicians position paper aims to inform ethical decision making for the integration of precision medicine and genetic testing into clinical care. Although the positions are primarily intended for practicing physicians, they may apply to other health care professionals and can also inform how health care systems, professional schools, and residency programs integrate genomics into educational and clinical settings. Addressing the challenges of precision medicine and genetic testing will guide ethical and responsible implementation to improve health outcomes. [ABSTRACT FROM AUTHOR]

Objective: There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney.Method: A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion.Results: Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place.Significance Of Results: Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill. [ABSTRACT FROM AUTHOR]

Aim: To evaluate patients' expectations regarding the perceived utility of whole-genome sequencing (WGS). Materials & methods: We used latent class analysis to characterize individuals enrolled in the MedSeq Project based on their perceived utility of WGS. Multinomial logistic regression was used to evaluate associations between participant characteristics and latent classes. Results: Findings characterized participants into one of three perceived utility groups: enthusiasts, who had a high probability of agreement with all utility items (23%); health conscious, who perceived utility in medically related areas (60%) or skeptics, who had a low probability of agreement with utility items (17%). Trust significantly predicted latent class. Conclusion: Understanding differences in perceived utility of WGS may inform strategies for uptake of this technology. [ABSTRACT FROM AUTHOR]

Purpose: National reports on end-of-life symptom management reveal a gap in the evidence regarding symptoms other than pain and studies of diseases other than cancer. This study examines the frequency and severity of symptoms and quality of life (QOL) in persons with advanced cancer, amyotrophic lateral sclerosis (ALS), and congestive heart failure (CHF). Methods: The present study is a cross-sectional examination of symptoms and QOL measured using the McGill QOL Questionnaire, among 147 participants. Results: Forty one percent of participants had advanced cancer, 22% had ALS, and 37% had advanced CHF. A total of 266 symptoms were reported, with the common symptom categories being discomfort/pain, weakness/fatigue/sleep, and respiratory. Participants with CHF had the highest mean symptom severity and the lowest QOL. Conclusion: Clinicians should be aware and attentive for symptoms other than pain in patients with advanced illness. Studies on diseases other than cancer, such as CHF and ALS, are important to improve symptom management in all disease groups. [ABSTRACT FROM AUTHOR]

One might have thought that medical education would equip physicians with the knowledge to treat disease as well as training in the art of comforting the dying. In Final exam: [...]

Background: Whole genome sequencing (WGS) is already being used in certain clinical and research settings, but its impact on patient well-being, health-care utilization, and clinical decision-making remains largely unstudied. It is also unknown how best to communicate sequencing results to physicians and patients to improve health. We describe the design of the MedSeq Project: the first randomized trials of WGS in clinical care. Methods/Design: This pair of randomized controlled trials compares WGS to standard of care in two clinical contexts: (a) disease-specific genomic medicine in a cardiomyopathy clinic and (b) general genomic medicine in primary care. We are recruiting 8 to 12 cardiologists, 8 to 12 primary care physicians, and approximately 200 of their patients. Patient participants in both the cardiology and primary care trials are randomly assigned to receive a family history assessment with or without WGS. Our laboratory delivers a genome report to physician participants that balances the needs to enhance understandability of genomic information and to convey its complexity. We provide an educational curriculum for physician participants and offer them a hotline to genetics professionals for guidance in interpreting and managing their patients' genome reports. Using varied data sources, including surveys, semi-structured interviews, and review of clinical data, we measure the attitudes, behaviors and outcomes of physician and patient participants at multiple time points before and after the disclosure of these results. Discussion: The impact of emerging sequencing technologies on patient care is unclear. We have designed a process of interpreting WGS results and delivering them to physicians in a way that anticipates how we envision genomic medicine will evolve in the near future. That is, our WGS report provides clinically relevant information while communicating the complexity and uncertainty of WGS results to physicians and, through physicians, to their patients. This project will not only illuminate the impact of integrating genomic medicine into the clinical care of patients but also inform the design of future studies. [ABSTRACT FROM AUTHOR]

The article presents speeches by Lisa Lehmann, Katherine Swartz, Michael Chin and Marcia Angell, delivered at the Harvard Medical School Public Forum on May 17, 2007, in which they discussed and critically examined the Massachusetts healthcare legislation, whether the reform should be comprehensive or incremental and should priority be given to reforming the financing system or improving the organization and delivery of healthcare.

A letter to the editor is presented in response to the article "Redefining physicians' role in assisted dying," by J. J. Z. Prokopetz and L. S. Lehmann in the 2012 issue.

Women physicians are paid less than their male peers across medical specialties and geographies. While the medical literature to date has focused on documenting the existence of a wage gap, less attention has been paid to fixing this gap. We focus on interventions around auditing, salary transparency, family leave, and childcare that can be implemented to advance gender wage parity.

Background: Financial ties between physicians and the pharmaceutical and medical device industry are common, but little is known about how patient trust is affected by these ties., Objective: The purpose of this study was to evaluate how viewing online public disclosure of industry payments affects patients' trust ratings for physicians, the medical profession, and the pharmaceutical and medical device industry., Design: This was a randomized experimental evaluation., Participants: There were 278 English-speaking participants over age 18 who had seen a healthcare provider in the previous 12 months who took part in the study., Interventions: Participants searched for physicians on an online disclosure database, viewed payments from industry to the physicians, and assigned trust ratings. Participants were randomized to view physicians who received no payment ($0), low payment ($250-300), or high payment (>$13,000) from industry, or to a control arm in which they did not view the disclosure website. They also were asked to search for and then rate trust in their own physician., Main Measures: Primary outcomes were trust in individual physician, medical profession, and industry. These scales measure trust as a composite of honesty, fidelity, competence, and global trust., Key Results: Compared to physicians who received no payments, physicians who received payments over $13,000 received lower ratings for honesty [mean (SD): 3.36 (0.86) vs. 2.75 (0.95), p < 0.001] and fidelity [3.19 (0.65) vs. 2.89 (0.68), p = 0.01]. Among the 7.9% of participants who found their own physician on the website, ratings for honesty and fidelity decreased as the industry payment to the physician increased (honesty: Spearman's ρ = -0.52, p = 0.02; fidelity: Spearman's ρ = -0.55, p = 0.01). Viewing the disclosure website did not affect trust ratings for the medical profession or industry., Conclusions: Disclosure of industry payments to physicians affected perceptions of individual physician honesty and fidelity, but not perceptions of competence. Disclosure did not affect trust ratings for the medical profession or the pharmaceutical and medical device industry. ClinicalTrials.gov identifier: NCT02179632 ( https://clinicaltrials.gov/ct2/show/NCT02179632 ).

Background: The Physician Payments Sunshine Act, part of the Affordable Care Act, requires pharmaceutical and medical device firms to report payments they make to physicians and, through its Open Payments program, makes this information publicly available., Objective: To establish estimates of the exposure of the American patient population to physicians who accept industry payments, to compare these population-based estimates to physician-based estimates of industry contact, and to investigate Americans' awareness of industry payments., Design: Cross-sectional survey conducted in late September and early October 2014, with data linkage of respondents' physicians to Open Payments data., Participants: A total of 3542 adults drawn from a large, nationally representative household panel., Main Measures: Respondents' contact with physicians reported in Open Payments to have received industry payments; respondents' awareness that physicians receive payments from industry and that payment information is publicly available; respondents' knowledge of whether their own physician received industry payments., Key Results: Among the 1987 respondents who could be matched to a specific physician, 65% saw a physician who had received an industry payment during the previous 12 months. This population-based estimate of exposure to industry contact is much higher than physician-based estimates from the same period, which indicate that 41% of physicians received an industry payment. Across the six most frequently visited specialties, patient contact with physicians who had received an industry payment ranged from 60 to 85%; the percentage of physicians with industry contact in these specialties was much lower (35-56%). Only 12% of survey respondents knew that payment information was publicly available, and only 5% knew whether their own doctor had received payments., Conclusions: Patients' contact with physicians who receive industry payments is more prevalent than physician-based measures of industry contact would suggest. Very few Americans know whether their own doctor has received industry payments or are aware that payment information is publicly available.

Background: Prior studies have demonstrated how price transparency lowers the test-ordering rates of trainees in hospitals, and physician-targeted price transparency efforts have been viewed as a promising cost-controlling strategy., Objective: To examine the effect of displaying paid-price information on test-ordering rates for common imaging studies and procedures within an accountable care organization (ACO)., Design: Block randomized controlled trial for 1 year., Subjects: A total of 1205 fully licensed clinicians (728 primary care, 477 specialists)., Intervention: Starting January 2014, clinicians in the Control arm received no price display; those in the intervention arms received Single or Paired Internal/External Median Prices in the test-ordering screen of their electronic health record. Internal prices were the amounts paid by insurers for the ACO's services; external paid prices were the amounts paid by insurers for the same services when delivered by unaffiliated providers., Main Measures: Ordering rates (orders per 100 face-to-face encounters with adult patients): overall, designated to be completed internally within the ACO, considered "inappropriate" (e.g., MRI for simple headache), and thought to be "appropriate" (e.g., screening colonoscopy)., Key Results: We found no significant difference in overall ordering rates across the Control, Single Median Price, or Paired Internal/External Median Prices study arms. For every 100 encounters, clinicians in the Control arm ordered 15.0 (SD 31.1) tests, those in the Single Median Price arm ordered 15.0 (SD 16.2) tests, and those in the Paired Prices arms ordered 15.7 (SD 20.5) tests (one-way ANOVA p-value 0.88). There was no difference in ordering rates for tests designated to be completed internally or considered to be inappropriate or appropriate., Conclusions: Displaying paid-price information did not alter how frequently primary care and specialist clinicians ordered imaging studies and procedures within an ACO. Those with a particular interest in removing waste from the health care system may want to consider a variety of contextual factors that can affect physician-targeted price transparency.

Background: Conferences, processes, and/or meetings in which adverse events and near misses are reviewed within clinical programs at a single academic medical center were identified., Methods: Leaders of conferences, processes, or meetings-"process leaders"-in which adverse events and near misses were reviewed were surveyed., Results: On the basis of responses from all 45 process leaders, processes were classified into (1) Morbidity and Mortality Conferences (MMCs), (2) Quality Assurance (QA) Meetings, and (3) Educational Conferences. Some 22% of the clinical programs used more than one of these three processes to identify and review adverse events and near misses, while 10% had no consistent participation in any of them. Explicit criteria for identifying and selecting cases to be reviewed were used by 58% of MMCs and 69% of QA Meetings. The explicit criteria used by MMCs and QA Meetings varied widely. Many MMCs (54%, 13/24), QA Meetings (54%, 7/13), and Educational Conferences (70%, 7/10) did not review all the adverse events or near misses that were identified, and several MMCs (46%, 6/13), QA Meetings (29%, 2/7), and Educational Conferences (57%, 4/7) had no other process within their clinical program by which to review these remaining cases., Conclusions: There was wide variation regarding how clinical programs identify and review adverse events and near misses within the MMCs, QA Meetings, and Educational Conferences, and some programs had no such processes. A well-designed, coordinated process across all clinical areas that incorporates accepted approaches for event analysis may improve the quality and safety of patient care., (Copyright © 2016 The Joint Commission. All rights reserved.)

Background: Little is known about how primary care physicians (PCPs) in routine outpatient practice use paid price information (i.e., the amount that insurers finally pay providers) in daily clinical practice., Objective: To describe the experiences of PCPs who have had paid price information on tests and procedures for at least 1 year., Design: Cross-sectional study using semi-structured interviews and the constant comparative method of qualitative analysis., Participants: Forty-six PCPs within an accountable care organization., Intervention: Via the ordering screen of their electronic health record, PCPs were presented with the median paid price for commonly ordered tests and procedures (e.g., blood tests, x-rays, CTs, MRIs)., Approach: We asked PCPs for (a) their "gut reaction" to having paid price information, (b) the situations in which they used price information in clinical decision-making separate from or jointly with patients, (c) their thoughts on who bore the chief responsibility for discussing price information with patients, and (d) suggestions for improving physician-targeted price information interventions., Key Results: Among "gut reactions" that ranged from positive to negative, all PCPs were more interested in having patient-specific price information than paid prices from the practice perspective. PCPs described that when patients' out-of-pocket spending concerns were revealed, price information helped them engage patients in conversations about how to alter treatment plans to make them more affordable. PCPs stated that having price information only slightly altered their test-ordering patterns and that they avoided mentioning prices when advising patients against unnecessary testing. Most PCPs asserted that physicians bear the chief responsibility for discussing prices with patients because of their clinical knowledge and relationships with patients. They wished for help from patients, practices, health plans, and society in order to support price transparency in healthcare., Conclusions: Physician-targeted price transparency efforts may provide PCPs with the information they need to respond to patients' concerns regarding out-of-pocket affordability rather than that needed to change test-ordering habits., Competing Interests: Compliance with Ethical Standards Funders This work was financially supported by the Robert Wood Johnson Foundation Health Care Financing Organization. The sponsor had no role in the design or conduct of the study; the collection, analysis, or interpretation of the data; or the preparation, review, or approval of the manuscript or the decision to submit. Prior Presentations 2015 Society of General Internal Medicine Annual Meeting. Financial Disclosure The authors have no financial relationships relevant to this article to disclose. Conflict of Interest Dr. Thomas D. Sequist is a member of Aetna’s Racial and Ethnic Equality Committee. All other authors declare that they have no conflict of interest.

Background: Current lung transplant allocation guidelines recommend considering psychological function when assessing candidacy despite limited data on whether patients with conditions, such as anxiety and depression, have reduced benefit from transplant because of decreased survival after transplant., Objective: The aim of this article was to determine whether pretransplant depression and anxiety are associated with worse posttransplant survival., Methods: We searched Medline, Journal Storage, and Embase for original articles that assessed the effect of pretransplant depression and anxiety on survival following lung transplant published up to November 2015. We calculated a summary estimate of hazard ratios for death using a random effects model., Results: In total, 6 prospective longitudinal cohort studies were included in the meta-analysis, 4 of which used continuous scores on validated instruments to measure anxiety and depression. There were 711 patients of whom 345 (48.5%) died during the available follow-up time (mean = 7.8 years). Pretransplant anxiety and depression were not associated with posttransplant survival (hazard ratio = 1.009; 95% CI: 0.998-1.019). Heterogeneity was not detected (I(2) = 0.00%, Q = 5.87, p = 0.66) and the results did not differ whether anxiety or depression was treated as the exposure of interest., Conclusions: There is sufficient evidence to conclude that scores on indices of depression and anxiety pretransplant are not associated with worse survival following lung transplant., (Copyright © 2016 The Academy of Psychosomatic Medicine. Published by Elsevier Inc. All rights reserved.)

The care of Very Important Patients (VIPs) is different from other patients because they may receive greater access, attention, and resources from health care staff. Although the term VIP is used regularly in the medical literature and is implicitly understood, in practice it constitutes a wide and heterogeneous group of patients that have a strong effect on health care providers. We define a VIP as a very influential patient whose individual attributes and characteristics (eg, social status, occupation, position), coupled with their behavior, have the potential to significantly influence a clinician's judgment or behavior. Physicians, celebrities, the politically powerful, and philanthropists, may all become VIPs in the appropriate context. The quality of care may be inferior because health care professionals may deviate from standard practices when caring for them. Understanding the common features among what may otherwise be very different groups of patients can help health care providers manage ethical concerns when they arise. We use a series of vignettes to demonstrate how VIPs behavior and status can influence a clinician's judgment or actions. Appreciating the ethical principles in these varied circumstances provides health care professionals with the tools to manage ethical conflicts that arise in the care of VIPs. We conclude each vignette with guidance for how health care providers and administrators can manage the ethical concern., (Published by Elsevier Inc.)

We conducted a survey to assess the perspectives of principal investigators and Institutional Review Board (IRB) members on the impact of the IRB structure on the conduct of research and innovative therapy, defined as a nonstandard treatment intended to enhance the well-being of an individual patient. Although investigators and IRB members agreed that the IRB provides adequate protection to study subjects (97% vs. 100%) and an ethically insightful review (88% vs. 100%), a third of clinical investigators felt that the IRB review process limits clinical innovation, in comparison with only 4% of IRB representatives. Limitations of the current IRB review process were explored. We propose several measures to improve the IRB review process while maintaining the protection of human research subjects, including the use of centralized IRBs, the opening of IRB meetings to investigators, the development of metrics and outcome measures for the IRB, and the promotion of guidelines that distinguish research and innovative therapy., (© The Author(s) 2015.)

Purpose: National reports on end-of-life symptom management reveal a gap in the evidence regarding symptoms other than pain and studies of diseases other than cancer. This study examines the frequency and severity of symptoms and quality of life (QOL) in persons with advanced cancer, amyotrophic lateral sclerosis (ALS), and congestive heart failure (CHF)., Methods: The present study is a cross-sectional examination of symptoms and QOL measured using the McGill QOL Questionnaire, among 147 participants., Results: Forty one percent of participants had advanced cancer, 22% had ALS, and 37% had advanced CHF. A total of 266 symptoms were reported, with the common symptom categories being discomfort/pain, weakness/fatigue/sleep, and respiratory. Participants with CHF had the highest mean symptom severity and the lowest QOL., Conclusion: Clinicians should be aware and attentive for symptoms other than pain in patients with advanced illness. Studies on diseases other than cancer, such as CHF and ALS, are important to improve symptom management in all disease groups., (Copyright © 2015 Elsevier Inc. All rights reserved.)

The use of psychopharmaceuticals as an enhancement technology has been the focus of attention in the bioethics literature. However, there has been little examination of the challenges that this practice creates for religious traditions that place importance on questions of being, authenticity, and identity. We asked expert commentators from six major world religions to consider the issues raised by psychopharmaceuticals as an enhancement technology. These commentaries reveal that in assessing the appropriate place of medical therapies, religious traditions, like secular perspectives, rely upon ideas about health and disease and about normal human behavior. But unlike secular perspectives, faith traditions explicitly concern themselves with ways in which medicine should or should not be used to live a "good life".

Background: In recent years there have been significant advances in the process of oocyte cryopreservation. Advanced techniques including vitrification have seen increasing success rates of fertilization. These successes warrant renewed public consideration and debate on several issues: In what circumstances? Who should pay? How should the process be regulated?, Study Question: Our goals were to examine the approach to oocyte cryopreservation amongst attending in-vitro fertilization (IVF) physicians and amongst researchers in the field of bioethics and health regulation., Methods: Questionnaires regarding egg freezing were given to physicians heading IVF departments in Israel, and to bioethics researchers / health care administrators., Results: Among the two groups questioned, there is strong support (80%) for the freezing of oocytes for personal circumstances, which may not be purely medical. Despite this support, there appears to be a difference in reasoning for this support. While most physicians see no reason to inhibit using the technology, bioethicists attend to the conflict between personal liberties and potentially troubling ethical consequences on society when utilizing these technologies. There is an additional discrepancy between the groups concerning regulation. Physicians prefer regulation by administrative means, while bioethicists would prefer regulation by Laws., Conclusions: Despite widespread support of oocyte cryopreservation for personal reasons among the two groups questioned, their views arise from different rationales. implementation of egg freezing technologies requires careful interdisciplinary discussion in order to consider the various medical, ethical, and sociological factors that these technologies will incur.

Purpose: To assess the format, content, method, and placement of medical ethics education in medical schools; the faculty and curricular resources and institutional structure and support of medical ethics; and the perceptions of ethics education among deans of medical education and medical ethics course directors at U.S. and Canadian medical schools., Method: Two questionnaires were mailed to 125 U.S. medical schools and 16 Canadian schools: one to be completed by the deans of medical education and one to be completed by the medical ethics course director. Descriptive statistics were used to compare responses., Results: In all, 123 (87%) deans and 91 (64%) course directors responded, providing information about 91 schools (six Canadian). All responding institutions offered some formal instruction in medical ethics, and among these, 71 (78%) incorporated ethics into required preclinical courses. The primary pedagogic course structure was small-group discussion and the primary pedagogic method was case discussions. One-fifth of schools provided no funding for ethics teaching, and 47 (52%) did not fund curricular development in ethics. Institutions with a dedicated ethics faculty member were twice as likely to have a mandatory introductory ethics course (64% versus 32%, p <.05). The primary obstacles to ethics education were thought to be a lack of time in the curriculum, a lack of qualified teachers, and a lack of time in faculty schedules., Conclusions: Within a few decades the number of U.S. and Canadian medical schools requiring medical ethics has increased. Nevertheless, significant variation in the content, method, and timing of ethics education suggests consensus about curricular content and pedagogic methods remains lacking. Further progress in ethics education may depend on institutions' willingness to devote more curricular time and funding to medical ethics.