Informed Consent Policies Research Articles

Developing an International Framework for Informed Consent in Plastic Surgery: A Focus on Cosmetic Breast Augmentation.

Informed consent is a fundamental pillar of patient rights and is an essential part of good clinical practice. In 2019, the International Confederation of Plastic Surgery Societies launched a survey to collect feedback on informed consent practices, with an aim to develop an international guideline for cosmetic surgery. A 15-question survey was sent to delegates of the International Confederation of Plastic Surgery Societies for dissemination to their national society members. The survey comprised a range of quantitative and qualitative questions. Descriptive and thematic analysis was performed. There were 364 respondents. Over half of the respondents reported no local informed consent policy, whereas others noted national society, specialist college, or government policies. The majority of respondents believed that the performing surgeon should be responsible for obtaining informed consent with at least two face-to-face consultations. Most respondents agreed with a cooling-off period (duration based on procedure type and use of high-risk devices). Regarding cosmetic breast augmentation, the majority of respondents felt that the performing surgeon should be responsible for postoperative management, including cases that occur as part of surgical tourism. Some respondents incorporate financial consent as part of their informed consent practice. Most supported the development of an international informed consent guideline. Informed consent should result from face-to-face consultations with the performing surgeon. There should be a minimum cooling-off period. Postoperative surveillance should be available in all settings. The findings of this survey will help inform an international standardized informed consent guideline for cosmetic surgery.

Analysing the effectiveness of the roundtable on sustainable palm oil's Free, Prior and Informed Consent policy to respect customary land rights

AbstractThis article assesses the effectiveness of the Roundtable on Sustainable Palm Oil's (RSPO) Free, Prior and Informed Consent (FPIC) policy in respecting customary land rights in Indonesia using a policy implementation framework. The questions addressed are what is the practice of FPIC by oil palm companies? What is the performance of the companies in implementing the FPIC? Data from companies' documents and a survey of oil palm companies in West and Central Kalimantan show that while RSPO members are practicing the FPIC policy, their FPIC performance is inadequate, because of the absence of external monitoring of land acquisition and company reliance on inadequate Indonesian environmental law.

The Role of Formal Policy to Promote Informed Consent of Psychotropic Medications for Youth in Child Welfare Custody: A National Examination

Active participation of youth and surrogate decision-makers in providing informed consent and assent for mental health treatment is critical. However, the procedural elements of an informed consent process, particularly for youth in child welfare custody, are not well defined. Given calls for psychotropic medication oversight for youth in child welfare custody, this study proposes a taxonomy for the procedural elements of informed consent policies based upon formal and informal child welfare policies and then examines whether enacted state formal policies across the United States endorsed these elements. A sequential multi-method study design included: (1) semi-structured interviews with key informants (n = 58) primarily from state child welfare agencies to identify a taxonomy of procedural elements for informed consent of psychotropic medications and then (2) a legislative review of the 50 states and D.C. to characterize whether formal policies endorsed each procedural element through February 2022. Key informants reported five procedural elements in policy, including how to: (1) gather social and medical history, (2) prescribe the medication, (3) authorize its use through consent and youth assent, (4) notify relevant stakeholders, and (5) routinely review the consenting decision. Twenty-three states endorsed relevant legislation; however, only two states specified all five procedural elements. Additionally, the content of a procedural element, when included, varied substantively across policies. Further research and expert consensus are needed to set best practices and guide policymakers in setting policies to advance transparency and accountability for informed consent of mental health treatment among youth in child welfare custody.

Medical Student Attitudes on Explicit Informed Consent for Pelvic Exams Under Anesthesia

To obtain an overview of medical student attitudes on the need for explicit consent for pelvic exams under anesthesia performed for educational purposes DESIGN: From February to October 2020, 201 medical students at a single medical school in the United States participated in a cross-sectional survey after completion of the obstetrics and gynecology clerkship. Outcome measures included endorsement of need for explicit informed consent for educational pelvic exams under anesthesia, and knowledge of informed consent processes for such exams. University of Pittsburgh School of Medicine PARTICIPANTS: Third- and fourth-year medical students RESULTS: Overall, 75% of medical students endorsed a need for explicit informed consent for educational pelvic exams under anesthesia, which extended to prostate, rectal, and breast exams under anesthesia. Additionally, 45% and 77% of these participants indicated that consent for educational pelvic exams under anesthesia should take the form of a separate signature line on the surgical consent form and/or a verbal form, respectively. Only 40% of students correctly identified institutional policy for obtaining informed consent for educational pelvic exams under anesthesia. Rotation with the oncologic surgical service (p = 0.02) and correct identification of institutional informed consent policies (p = 0.002) were associated with decreased perceptions of the importance of explicit informed consent for educational pelvic exams under anesthesia. Medical students at the institution studied largely support explicit informed consent for educational pelvic and other sensitive exams under anesthesia, but a knowledge gap on institutional informed consent policy exists. Medical students support increased transparency and bodily autonomy. Due to the agreement of patients and medical students and the ethical rationale for this position, it may be appropriate for physicians and institutions to consider new processes of obtaining explicit informed consent for pelvic exams under anesthesia by medical students.

Informed consent in cardiac surgery - current institutional practice and legislation

Background/Aim. Growing waiting lists for cardiac surgery have become a real problem in the Republic of Serbia, imposing serious difficulties in patient-surgeon communication. The aim of the study was to determine the current state of the institutional informed consent policy before elective cardiac surgical procedures in light of actual nation-al legislation. Methods. An anonymous, voluntary survey was conducted among 200 consecutive patients at the Clinic for Cardiac Surgery, University Clinical Centre of Serbia, from September to December 2019, after signing an official institutional consent form. A targeted questionnaire was created to determine the quantity and quality of patients? in-formation about general and the most important aspects of cardiac surgical care. Results. The mean age of respondents was 66.2 years, with male predominance (68.0%), homogenous ethnicity, and low-to-middle (84.0%) education levels. A significant percentage had no information on the type of surgery (16.0%), extracorporeal circulation (46.0%), anaesthesia (56.0%) and transfusion (51.5%). Of those having some information, 7.0?20.0% graded them sufficient. The worst situation was recorded concerning risks of disease and surgical treatment, where 88.0% of patients had no information and almost 90.0% had some information and graded them as non-sufficient. Surprisingly, 81.5% of patients signed the consent form without any prior discussion with the operating surgeon. For 56.0% of patients, the information in the actual consent form was clear and sufficient. While 85.5% of patients claimed the importance, the others (14.5%) were not interested to know the most relevant in-formation about their disease and surgery. Conclusion. The results unambiguously indicate an unacceptably low level of our patients? information about the cardiac surgical procedure, extracorporeal circulation, anesthesia, transfusion, and estimated risk. The majority of them (85.5%) comprehends the importance and expects timely and adequate information. An extremely high percentage (81.5%) of patients had no chance to discuss the procedure with the operating surgeon. Both surgical indifference and insufficient knowledge of professional, ethical, and legal importance are the most important reasons for the actual informed consent policy in cardiac surgery.

Breast Core Biopsy Information and Consent: Do we Prepare or do we Scare?

Informed consent has important ethical considerations for invasive procedures. Anecdotal evidence suggests an informed consent policy could heighten anxiety. We evaluated whether detailed information about breast biopsy prior to appointment negatively impacted patient experiences. Phase 1 surveyed patients receiving a standard appointment letter who underwent core biopsy (group A). Phase 2 surveyed two groups receiving standard letter plus biopsy leaflets: those who underwent core biopsy (group B) and those who did not (group C). The analysis included descriptive statistics and qualitative thematic analysis. Hundred percent of group A felt they were given enough information prior to biopsy and 72% felt it would not be helpful having information to read in the clinic beforehand. Hundred percent of group B and 94.1% of group C found it helpful to receive information with their letter. Common themes were good service, verbal explanation, and appreciation of written information. Despite concerns that too much information would heighten anxiety, this has not resulted in negative clinic experiences. Most patients found detailed information included with their appointment letter helpful, regardless of whether they had a biopsy or not.

Changes in Informed Consent Policy and Treatment Delays in Stroke Thrombolysis

ObjectivesThe efficacy of thrombolytic therapy with tissue plasminogen activator (tPA) is highly time dependent. Although clinical guidelines do not recommend written informed consent as it may cause treatment delays, local policy can supersede and require it. From 2014 to 2017, three out of five public hospitals in Singapore changed from written to verbal consent at different time points. We aimed to examine the association of hospital policy changes regarding informed consent on door-to-needle (DTN) times. Materials and MethodsUsing data from the Singapore Stroke Registry and surveys of local practice, we analyzed data of 915 acute ischemic stroke patients treated with tPA within 3 hours in all public hospitals between July 2014 to Dec 2017. Patient-level DTN times before and after policy changes were examined while adjusting for clinical characteristics, within-hospital clustering, and trends over time. ResultsPatient characteristics and stroke severity were similar before and after the policy changes. Overall, the median DTN times decreased from 68 to 53 minutes after the policy changes. After risk adjustment, changing from written to verbal informed consent was associated with a 5.6 minutes reduction (95% CI 1.1-10.0) in DTN times. After the policy changed, the percentage of patients with DTN ≤60 minutes and ≤45 minutes increased from 35.6% to 66.1% (adjusted OR 1.75; 95% CI 1.12-2.74) and 9.3% to 36.0% (adjusted OR 2.42; 95% CI 1.37-4.25), respectively. ConclusionChanging from written to verbal consent is associated with significant improvement in the timeliness of tPA administration in acute ischemic stroke.

Neuromodulation: The Science and New York City Neuromodulation Abstracts Accepted at the 2019 Conference

Neuromodulation: Technology at the Neural InterfaceVolume 23, Issue 5 p. e326-e368 Abstracts Neuromodulation: The Science and New York City Neuromodulation Abstracts Accepted at the 2019 Conference First published: 21 July 2020 https://doi.org/10.1111/ner.13152Citations: 1 For more information on author guidelines, an explanation of our peer review process, and conflict of interest informed consent policies, please go to http://www.wiley.com/WileyCDA/Section/id-301854.html Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinked InRedditWechat Volume23, Issue5July 2020Pages e326-e368 RelatedInformation

Informed consent procedures in patients with an acute inability to provide informed consent: Policy and practice in the CENTER-TBI study.

Enrolling traumatic brain injury (TBI) patients with an inability to provide informed consent in research is challenging. Alternatives to patient consent are not sufficiently embedded in European and national legislation, which allows procedural variation and bias. We aimed to quantify variations in informed consent policy and practice. Variation was explored in the CENTER-TBI study. Policies were reported by using a questionnaire and national legislation. Data on used informed consent procedures were available for 4498 patients from 57 centres across 17 European countries. Variation in the use of informed consent procedures was found between and within EU member states. Proxy informed consent (N = 1377;64%) was the most frequently used type of consent in the ICU, followed by patient informed consent (N = 426;20%) and deferred consent (N = 334;16%). Deferred consent was only actively used in 15 centres (26%), although it was considered valid in 47 centres (82%). Alternatives to patient consent are essential for TBI research. While there seems to be concordance amongst national legislations, there is regional variability in institutional practices with respect to the use of different informed consent procedures. Variation could be caused by several reasons, including inconsistencies in clear legislation or knowledge of such legislation amongst researchers.

The Magic Touch: A Case Report of How Smartphone Fingerprint Technology Was Utilized to Establish a Last Known Well Time for Recanalization Treatment in a Patient With Acute Ischemic Stroke

Tissue plasminogen activator (tPA) is currently a standard of care for acute stroke patients. One of the necessary criteria in determining eligibility for tPA is the last known well (LKW) time. The LKW time is unfortunately often difficult to obtain accurately if no witness is available, thus posing as an obstacle for acute recanalization therapy. We present the case of a patient who arrived unresponsive with an unwitnessed onset of symptoms concerning for an acute stroke. An LKW time was able to be successfully established by using her fingerprint to unlock her phone and discover a coherent text sent a few hours prior. Patient was able to receive intravenous (IV) tPA and demonstrated remarkable recovery. The use of fingerprint ID to unlock the patient’s phone raises the concern of breach of privacy and whether involuntary smartphone searches apply to the emergency code of conduct outlined by the FDA. Smartphone applications, such as Apple iOS “Medical ID” argues for maximal utilization of smartphone technology for emergent medical conditions. Utilization of smartphone technology can potentially serve a potential solution, but the question remains as to whether this practice would be deemed to be ethically appropriate under the policy of implied informed consent under emergent conditions. J Med Cases. 2020;11(2):44-45 doi: https://doi.org/10.14740/jmc3431

Successful Burst Spinal Cord Stimulation in Refractory Angina

Neuromodulation: Technology at the Neural InterfaceVolume 22, Issue 2 p. 229-230 Letter to the Editor Successful Burst Spinal Cord Stimulation in Refractory Angina Yousef Abusabha MD, Department of Functional Neurosurgery and Stereotaxy, Duesseldorf, GermanySearch for more papers by this authorPhilipp J. Slotty PhD, Corresponding Author slotty@hhu.de Department of Functional Neurosurgery and Stereotaxy, Duesseldorf, GermanyAddress correspondence to: Philipp J. Slotty, PhD, Department of Stereotactic and Functional Neurosurgery, Heinrich-Heine-University Düsseldorf, 40225 Düsseldorf, Germany. Email: slotty@hhu.deSearch for more papers by this author Yousef Abusabha MD, Department of Functional Neurosurgery and Stereotaxy, Duesseldorf, GermanySearch for more papers by this authorPhilipp J. Slotty PhD, Corresponding Author slotty@hhu.de Department of Functional Neurosurgery and Stereotaxy, Duesseldorf, GermanyAddress correspondence to: Philipp J. Slotty, PhD, Department of Stereotactic and Functional Neurosurgery, Heinrich-Heine-University Düsseldorf, 40225 Düsseldorf, Germany. Email: slotty@hhu.deSearch for more papers by this author First published: 17 December 2018 https://doi.org/10.1111/ner.12904 For more information on author guidelines, an explanation of our peer review process, and conflict of interest informed consent policies, please go to www.wiley.com/WileyCDA/Section/id-301854.html Source(s) of financial support: Nothing to declare Conflict of Interest: Philipp J. Slotty has received speaker honoraria and travel grants from Abbott. Yousef Abusabha has no conflicts of interest. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinked InRedditWechat No abstract is available for this article. Volume22, Issue2February 2019Pages 229-230 RelatedInformation

Opportunities to Improve Informed Consent with AHRQ Training Modules

Informed consent is a process of communication between clinician and patient that results in the patient's decision about whether to undergo a specific intervention. However, patients often do not understand the risks, benefits, and alternatives, even after signing a consent form. Mixed-methods pilot test of two Agency for Healthcare Research and Quality (AHRQ) informed consent training modules implemented in four hospitals. Methods included staff and patient surveys, interviews, site visits, and pre- and posttests of the modules. A low proportion of clinicians reported using teach-back (40.0%) or high-quality decision aids (55.0%). Patients reported limited use of best practices, including being asked to teach-back (58.4%), having other options described (54.9%), viewing decision aids (37.4%), and finding the form very easy to understand (66.8%). Content of the training modules aligned well with identified deficiencies. Barriers to completing the modules included staff turnover, competing demands, and lack of accountability. Facilitators included committed champions with available time, motivation, and release time for staff to take modules. Knowledge increased for leaders (p <0.05) and staff (p <0.001) who completed the training modules. Hospitals reported the effects of piloting the modules included fostering dialogue and identifying opportunities for improvements, identifying and rectifying policy ambiguity and noncompliance, reinforcing the use of interpreter services, and using modules' strategies and tools to improve informed consent. Many opportunities exist for hospitals to improve their informed consent practices. AHRQ's two training modules, have face validity, addressed demonstrated deficiencies in hospitals' informed consent policies and processes, and stimulated improvement activity in motivated hospitals.

Informed Consent Agreements: Standards of Care for Digital Social Work Practices

ABSTRACTThe inclusion of remote digital practices (e-mail, texting, blogging, social media) to deliver social work services raises unique ethical and legal challenges for client and practitioner. Competent care necessitates providing clients with information that would materially affect clients’ decisions whether to assume the risks, benefits, and conditions associated with e-practices. As standards of care for distance service provision have not been firmly established, social workers are duty bound to be well-informed about current laws, duties, and obligations including specific rules governing the practice of social work in the states where they deliver remote services. This article identifies distinct threats to privacy and confidentiality associated with e-practices and offers suggested content for a comprehensive informed consent policy.

A review of published guidance for video recording in medical education.

Medical educators have used resident-patient video recording to verify trainee competence in interpersonal and technical skills for 50 years. Although numerous authors acknowledge that video recording can compromise patient privacy and confidentiality, no summary of potential risks is available. A scoping review of the literature on resident-patient video recording in medical education from the 1960s to the present was conducted. The review examined publications that addressed ethical, policy, procedural, or legal issues affecting patients' rights when video recording. Potential risks to the rights of video recorded patients were organized into 6 categories: informed consent policies, informed consent procedures, recorded medical errors, secondary use of recordings, collateral patient information, and public trust issues. The review revealed contradictory opinions on informed consent policies, inadequate guidance for responding when medical errors are recorded, and conflicting opinions about when recordings become part of the medical record. Many reviewed publications are opinion-based, precede current confidentiality guidelines, or rely on survey results. This review organizes potential threats to patients' rights for those medical educators who use video recording technology. The review reveals a need for broader consensus about video recording guidelines and for research on video recording practices, especially given technological advances in video equipment and the expansion of video technology in health care settings. (PsycINFO Database Record

Open Availability of Patient Medical Photographs in Google Images Search Results: Cross-Sectional Study of Transgender Research.

BackgroundThis paper focuses on the collision of three factors: a growing emphasis on sharing research through open access publication, an increasing awareness of big data and its potential uses, and an engaged public interested in the privacy and confidentiality of their personal health information. One conceptual space where this collision is brought into sharp relief is with the open availability of patient medical photographs from peer-reviewed journal articles in the search results of online image databases such as Google Images.ObjectiveThe aim of this study was to assess the availability of patient medical photographs from published journal articles in Google Images search results and the factors impacting this availability.MethodsWe conducted a cross-sectional study using data from an evidence map of research with transgender, gender non-binary, and other gender diverse (trans) participants. For the original evidence map, a comprehensive search of 15 academic databases was developed in collaboration with a health sciences librarian. Initial search results produced 25,230 references after duplicates were removed. Eligibility criteria were established to include empirical research of any design that included trans participants or their personal information and that was published in English in peer-reviewed journals. We identified all articles published between 2008 and 2015 with medical photographs of trans participants. For each reference, images were individually numbered in order to track the total number of medical photographs. We used odds ratios (OR) to assess the association between availability of the clinical photograph on Google Images and the following factors: whether the article was openly available online (open access, Researchgate.net, or Academia.edu), whether the article included genital images, if the photographs were published in color, and whether the photographs were located on the journal article landing page.ResultsWe identified 94 articles with medical photographs of trans participants, including a total of 605 photographs. Of the 94 publications, 35 (37%) included at least one medical photograph that was found on Google Images. The ability to locate the article freely online contributes to the availability of at least one image from the article on Google Images (OR 2.99, 95% CI 1.20-7.45).ConclusionsThis is the first study to document the existence of medical photographs from peer-reviewed journals appearing in Google Images search results. Almost all of the images we searched for included sensitive photographs of patient genitals, chests, or breasts. Given that it is unlikely that patients consented to sharing their personal health information in these ways, this constitutes a risk to patient privacy. Based on the impact of current practices, revisions to informed consent policies and guidelines are required.

Knowledge and attitude toward organ donation among medical and nonmedical (Engineering) students in Bhopal, India

Background: India is facing a massive dearth of organs for transplantation. Nationally, with a population of 1.2 billion people, the organ donation rate (ODR) per million population (PMP) for India stands at 0.26 PMP. Although limited knowledge is considered as one of the major factors for low donation rates, studies also quote that knowledge may not have any impact on positive attitude and practice toward organ donation. Furthermore, countries with presumed consent policy like the one in Spain and Croatia have much higher ODRs (36 and 36.5 PMP) as compared to India, which has informed consent policy. Objectives: The objectives of this study is to understand correlation between knowledge and attitude toward organ donation among medical and nonmedical students and identify barriers to deceased organ donation; to look into participant's perception for adoption of presumed consent policy in Indian context; and understanding the acceptance of donor acknowledgment in the form of organ incentivization. Materials and Methods: An institution-based cross-sectional study was carried out among the students of medical and engineering colleges. A total of 100 students from each institute were interviewed randomly constituting a total sample of 600 students. A pre-designed, pre-tested, semi-structured questionnaire was used for collecting the data. The collected data were entered into Epi Info 7, and statistical tests were applied to find significant differences between two groups. Results: Of the total 600 students, 55.7% were male while 44.3% were female. The mean age of the study population was 19.73 ± 1.24 standard deviation years with majority of them (90.5%) under 21 years. Age and gender found to have a significant association with knowledge on organ donation. Study revealed a positive correlation between knowledge and attitude in both medical (r = 0.189) and nonmedical groups (r = 0.21). Almost 51.7% of students were in favor of adoption of Spain's “opt-out policy” policy, while 82.6% supported donor acknowledgment to increase the rates of organ donation in India. Most common source of information about organ donation identified in the study was television (71%), newspaper (38.5%), and doctor (33.7%). Conclusion: Positive correlation between knowledge and attitude suggests that a well-designed awareness campaign can improve attitude and practice toward organ donation, and successful examples from countries such as Spain and Singapore can be adopted in national context, to increase ODRs and saving millions of lives waiting for organs from deceased donors.

Cord Blood Banking for Potential Future Transplantation

This policy statement is intended to provide information to guide pediatricians, obstetricians, and other medical specialists and health care providers in responding to parents' questions about cord blood donation and banking as well as the types (public versus private) and quality of cord blood banks. Cord blood is an excellent source of stem cells for hematopoietic stem cell transplantation in children with some fatal diseases. Cord blood transplantation offers another method of definitive therapy for infants, children, and adults with certain hematologic malignancies, hemoglobinopathies, severe forms of T-lymphocyte and other immunodeficiencies, and metabolic diseases. The development of universal screening for severe immunodeficiency assay in a growing number of states is likely to increase the number of cord blood transplants. Both public and private cord blood banks worldwide hold hundreds of thousands of cord blood units designated for the treatment of fatal or debilitating illnesses. The procurement, characterization, and cryopreservation of cord blood is free for families who choose public banking. However, the family cost for private banking is significant and not covered by insurance, and the unit may never be used. Quality-assessment reviews by several national and international accrediting bodies show private cord blood banks to be underused for treatment, less regulated for quality control, and more expensive for the family than public cord blood banks. There is an unquestionable need to study the use of cord blood banking to make new and important alternative means of reconstituting the hematopoietic blood system in patients with malignancies and blood disorders and possibly regenerating tissue systems in the future. Recommendations regarding appropriate ethical and operational standards (including informed consent policies, financial disclosures, and conflict-of-interest policies) are provided for physicians, institutions, and organizations that operate or have a relationship with cord blood banking programs. The information on all aspects of cord blood banking gathered in this policy statement will facilitate parental choice for public or private cord blood banking.

P144 Think outside the ‘three’: A case of allo-sensitization from an alternate route

When we think about sensitization risk for transplant patients we tend to focus on the three main routes: pregnancy, transfusion, and transplant. However, there are other means of allo-immunization to consider. We present a case of a 27 year old male renal transplant candidate listed in March 2014. At the time of listing his cPRA was 29%. His serum initially showed non-specific bead reactivity on single antigen beads but did not suggest significant sensitization (Fig. 1a). In May 2015, the patient underwent a ligament replacement procedure for a knee injury during which he received a tendon and patella allograft from a deceased donor; the renal transplant program was not informed of this procedure at the time. In August 2015, a dramatic increase in HLA sensitization was detected during protocol waitlist testing resulting in a cPRA increase to 100%. The patient’s antibody levels and specificities have continued to increase (Fig. 1b). This patient’s HLA typing makes him more vulnerable to HLA class I and class II antibody development as he is homozygous for A2/DR15/DQ5. In order to increase the chance of finding a compatible donor, this recipient has been listed in our national Highly Sensitized Patient (HSP) registry but as of yet, no suitable donor has been offered. This occurrence has been investigated as an adverse event at our center and has led to process improvement initiatives to address the informed consent policy for procedures that may jeopardize a transplant candidate’s likelihood of finding a suitable donor. Allograft sensitization may be a concern for all transplant programs and should be investigated and discussed at the time of listing. For patients on a transplant waitlist, this type of surgery would seem unconnected to their transplant journey. However, our case clearly demonstrates that tendon replacement can lead to extensive HLA sensitization and perhaps additional patient and recipient coordinator education is required on the routes of sensitization and the risks involved with exposure to non-self HLA antigens. Download high-res image (515KB) Download full-size image

Value of Liberal Arts education in the Era of Precision Medicine

The Precision Medicine Initiative (PMI) aims to treat and prevent disease by accounting for individual variability in genes, environment, and lifestyle for each person. The initiative announced by President Obama aims to build the PMI Cohort Program that will compile a national research cohort of one million or more U.S. participants. Through technical advances in research capability for high throughput screening of genes/gene products, data sharing technology and informed consent policies that empowers patients, the PMI will usher in a new era of medicine in which researchers, providers and patients work together to develop individualized care. Paramount to successful delivery of this initiative will require trust and participation of the public and scientists being able to share data and protect the rights of the public. It is our contention that liberal arts colleges can fully participate in PMI by: 1. Taking advantage of open source and cloud platforms to access and analyze data obtained from both basic and clinical sciences; and 2. Providing an intellectually diverse student body to survey opinions and knowledge of modern genomic technologies in order to identify areas of public distrust and issues with informed consent arising from the implementation of these technologies. Furthermore, the curriculum at liberal arts colleges will enable deep discussion and exploration of moral, ethical, legal and scientific aspects of large scale initiatives such as PMI.

Decolonizing nursing ethics

Decolonizing nursing ethics