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  • A Survey of Rural Ethics Teaching in North American Allopathic and Osteopathic Medical Schools

    C.M. Klugman; W.A. Nelson; L.L. Anderson-Shaw; J.A. Gelfond (Columbia University Libraries, 2020-05-01)
    In 2010, the World Health Organization (WHO) released Increasing Access to Health Workers in Remote and Rural Areas Through Improved Retention: Global Policy Recommendations, a report on strategies for increasing and retaining health care workers in rural regions. The report states that while 50 percent of the world’s population lives in rural areas, only 38% of the nursing and less than 25% of the physician workforce serves these regions. For the United States, the WHO states that 20% of the population lives in rural regions and only 9% of registered physicians practice in such areas. Among the solutions the WHO offers is contextualizing medical education. In other words, medical students should be drawn from rural populations, trained through rural community experiences, and taught using rural health specific situations: “Revise undergraduate and postgraduate curricula to include rural health topics so as to enhance the competencies of health professionals working in rural areas, thereby increase their job satisfaction and retention” (WHO 2010, 3; Barrett, Lipsky, and Lutfiyya 2011). This, strategy suggests physician success and satisfaction in rural practice requires training using rural-specific cases, knowledge, and experience. 
 In parallel to the need to increase rural clinical experience, there is a need to better understand the unique ethical issues that arise in the rural environment. A growing rural ethics literature points to an emerging awareness of the special ethical considerations inherent to clinical practice in these closely-knit, tightly interdependent small communities, as well as the need to develop ethical resources for these providers. According to Nelson, et. al. the “rural context significantly impacts the common health care ethical conflicts including confidentiality, boundary issues, shared decision-making, professional-patient relationship, and allocation of resources for a significant portion of our population” (Nelson et al. 2006, 45). For example, there may be unique challenges to patient privacy when patients are also the physician’s neighbors, friends, children’s teachers, and relatives (Klugman and Dalinis 2008; Nelson 2010; Nelson 2010; Nelson, Greene, and West 2010; Nelson and Schmidek 2008). 
 In the Encyclopedia of Bioethics, Dan Callahan wrote that bioethics has evolved into four areas of general inquiry including what he calls cultural bioethics, which, “refers to the effort systematically to relate bioethics to the historical, ideological, culture and social context in which it is expressed” (Callahan 2004). John Hardwig has also asserted that mainstream bioethics is focused on urban issues (Hardwig 2006). In the last decade, a cultural bioethics subfield of “urban bioethics” has emerged that proposes “life-density, diversity, and disparity” create unique ethical challenges (Fleischman, Levin, and Meekin 2001),(Blustein and Fleischman 2004).  In recognizing that there exists an urban bioethics that focuses on problems of population density, then there must also exist a correlative cultural bioethics of rurality that reflects a low-density population, agricultural culture, and a lack of needed health care resources. “To date, there exists a limited focus on rural healthcare ethics shown by the scarcity of rural healthcare ethics literature, rural ethics committees, rural focused ethics training and research on rural ethics issues” (Nelson et al. 2007). For instance, a national study noted that 40% of critical access hospitals do not have ethics committees to assist rural clinicians with ethics conflicts compared to almost 100% of hospitals with over 400 beds (Fox, Myers, and Pearlman 2007; Nelson et al. 2010). 
 While Nelson et. al. have made a call for increased training in ethical issues in rural contexts, there is no information available regarding whether physician education programs currently teach in this area (Nelson et al. 2007). To empirically assess the prevalence of rural medical and ethics education for medical and osteopathic students, the researchers constructed a comprehensive survey. 
 Methods 
 The Rural Medical Ethics Information Survey employed yes/no, multiple choice, and fill-in-the-blank questions drawn from the literature and from recommendations by the Rural Health Care Ethics Working Group – a group of rural medical educators and ethicists. The University of Texas Health Science Center San Antonio Institutional Review Board determined the survey to be exempt in June 2010. In Fall 2010, the researchers sent a recruitment email to all 133 U.S. member schools of the Association of American Medical Colleges (AAMC), and all 26 members of the American Association of Colleges of Osteopathic Medicine (AACOM). The emails were directed to the senior medical/osteopathic education official at each institution, asking them to either complete a survey on SurveyMonkey or to forward the survey link to someone within the organization who could appropriately respond (SurveyMonkey 2011). For schools that did not complete the survey, an email reminder was sent 3 weeks later. For schools that still did not complete the survey, a third email reminder was sent 4 weeks after that. 
 The researchers asked whether the school had a required or elective rural experience and the form of that experience. The officials were also queried as to whether they offered training specifically in rural health care ethics. Other information collected included demographics such as number of students in the student body, percentage of students originally from rural areas, the zip code of the school, and its self-identified distance from an urban center (i.e. the “rurality” of the location). 
 The mainly descriptive statistical analysis was performed with exploratory tests of association. Binary responses (yes/no items) were summarized by proportions, and their 95% confidence intervals (CIs) were constructed with the exact binomial method. These CIs can be constructed when there is no variation in the response (All yes or all no) and are conservative for small sample sizes especially in the finite population setting. The CIs for differences in proportion were based upon asymptotic assumptions. Non-responses were considered to be “no.” Associations between binary and unordered categorical responses were tested using Fisher’s exact method. Associations with ordered categorical responses (Distance to Urban) were tested using a permutation-based method (H. and C. 1999). Associations between binary outcomes and continuous variables (% Rural Residency) were tested using logistic regression. Correlations between continuous variables were tested with the Spearman Rank correlation test. The level of significance was chosen to be P = .05 with 2-sided alternatives. We conducted the analysis with the R statistical software(R Development Core Team 2006) and the “coin” R package (Hothorn et al. 2008). The authors created the summary tables with SAS software (SAS Institute Inc 2008). 
 Results 
 Of the 159 schools surveyed, 124 completed the questionnaire (70.4% response rate). Of those, 16 identified as osteopathic schools (DO), 62 as allopathic (MD) and 46 did not offer a disciplinary identity. The researchers asked schools to classify their geographic location. Fifty-nine (47.6 %) indicated an urban location (0-5 miles from urban core), 3 (2.4 %) as suburban (6-20 miles from urban core), 3 (2.4 %) as exurban (21-50 miles from urban core), 8 (6.5 %) as rural (51 or more miles from urban core) and 51 (41.0 %) did not respond to this question. Since 73 schools also reported their zip code, this information was used to identify the schools Rural Urban Commuting Area Code (RUCA) classification (United States Department of Agriculture Economic Research Service 2005). Of these 73 schools, the mean RUCA code was 1.1 with a standard deviation of 0.5, meaning high-density development. 
 As Table 1 demonstrates, the researchers asked schools if they require a rural experience of all students. Thirty-two schools (29.4%) indicated that they had such a requirement. Additionally, many schools offer rural education tracks that may be required only of a specific subset of students. Some of these specialty tracks only accept students from rural areas while other tracks are intended for students who plan to practice in rural regions. Six schools (12.5%) require a rural experience only for students in these specialty programs. Sixty-two schools (61.4%) offer some form of an elective rural experience for their students. Schools that had required a rural educational experience for all or some of their students often also offer a rural elective experience, thus the categories are not mutually exclusive. 
 Only 7 (21.9%) of the 32 schools that require a rural experience for all students also teach rural health care ethics. Table 2 indicates that only 25 of the 32 schools with required rural experience answered this question. In the 6 schools with a rural specialty track, 4 (66.7%) teach rural health care ethics. In regards to the 64 schools with a rural elective, only 24 responded to the question, “Does your elective program in rural medicine include rural-focused ethical issues?” Eleven of those 24 (45.8%) indicated that they teach rural health care ethics. 
 Discussion 
 Less than 1/3 of schools require a rural experience of all students. Of those, only 1 in 5 offer a rural ethics curriculum. Of the 61.4% of schools that offer a rural elective, 17.7% of those offer training in rural ethics issues. However, in schools where a rural experience was required of a subset of students, 61.4% of those schools required rural health care ethics. Thus, schools that require ethics experiences of a subset of students may be more likely to have rural ethics training because of their focused mission. Or since these schools have a larger draw from rural areas, those students may demand the rural ethics focus in their training. 
 In looking at the effect of geographic location on rural ethics teaching, the authors initially planned to rely on RUCA codes, which are created by the federal government to map areas of urbanity and rurality. However, although 8 schools self-identified as rural (defined on the survey as more than 50 miles from an urban center), the median 1.1 RUCA code for all schools shows that the self-report and the RUCA codes did not always match. For example, The Geisel Medical School at Dartmouth is located 125 miles from Boston in a pastoral area of New Hampshire. The population density for the town of Hanover, NH is 1,792 people per square mile meaning that the RUCA code is 1, or urban, while the average density for New Hampshire is 146.8 (RUCA codes 7 to 10). The presence of a medical school requires a certain density of people that may give the area an urban RUCA code even though the setting is rural. Therefore, RUCA codes were not useful in looking at geographic location of a medical school and the researchers relied more on self-reports, a less objective measure. 
 The authors note several limitations and insights regarding this study. Many schools skipped large sections of the survey. For instance, nearly 41% of all respondents did not indicate their zip code. The survey may have been too detailed, requiring too much time for a senior education officer to complete. Additionally, few schools answered questions about hours of instruction, percent of students hailing from rural areas, and percent of graduates who go to residency in rural regions. Those that did answer often indicated they were making guesses, raising questions of the validity of those responses and thus they were excluded from analysis. 
 Conclusion 
 The survey results provide an enhanced understanding of the limited rural focused medical training programs in the United States. The survey results also indicate how rural ethics issues do not receive a great deal of attention in medical education. Both of these may contribute to the minority of graduating students choosing to practice in rural settings. The authors believe that following the World Health Organization’s goal of increasing rural health care workforce requires medical training experiences in rural settings including attending to the ethical challenges faced by physicians practicing in such geographic locations and cultural spaces. Drawing on Callahan’s perception of the importance of cultural bioethics, rural bioethics should be part of rural practice experience and medical school curricula, to give students the information and skills needed in rural settings. 
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 References: 
 Barrett, F. A., M. S. Lipsky, and M. N. Lutfiyya. 2011. The impact of rural training experiences on medical students: a critical review. Academic medicine : journal of the Association of American Medical Colleges 86 (2):259-63. 
 Blustein, J., and A. R. Fleischman. 2004. Urban bioethics: adapting bioethics to the urban context. Academic medicine : journal of the Association of American Medical Colleges 79 (12):1198-202. 
 Callaghan, Daniel. 2004. Bioethics. In Encyclopedia of Bioethics, edited by S. G. Post. New York: Macmillan Reference. 
 Fleischman, A. R., B. W. Levin, and S. A. Meekin. 2001. Bioethics in the urban context. Journal of urban health : bulletin of the New York Academy of Medicine 78 (1):2-6. 
 Fox, E., S. Myers, and R. A. Pearlman. 2007. Ethics consultation in United States hospitals: a national survey. The American journal of bioethics : AJOB 7 (2):13-25. 
 H., Strasser, and Weber C. 1999. On the Asymptotic Theory of Permutation Statistics. Mathematical Methods of Statistics 8:220-250. 
 Hardwig, J. 2006. Rural health care ethics: what assumptions and attitudes should drive the research? The American journal of bioethics : AJOB 6 (2):53-4. 
 Hothorn, Torsten, Kurt Hornik, Mark A. van de Wiel, and Achim Zeileis. 2008. Implementing a Class of Permutation Tests: The coin Package. Journal of Statistical Software 28 (8):1-23. 
 Klugman, Craig M., and Pamela M. Dalinis, eds. 2008. Ethical Issues in Rural Health Care. Baltimore: The Johns Hopkins University Press. 
 Nelson, W. A. 2010. Health care ethics and rural life. Stigma, privacy, boundary conflicts raise concerns. Health progress 91 (5):50-4. 
 Nelson, W. A., M. A. Greene, and A. West. 2010. Rural Health Care Ethics: No Longer the Forgotten Quarter of Medical Ethics. Cambridge Quarterly for Healthcare Ethics 19 (4):510-517. 
 Nelson, W. A., M. C. Rosenberg, T. Mackenzie, and W. B. Weeks. 2010. The presence of ethics programs in critical access hospitals. Health Care Ethics Committee Forum 22 (4):267-74. 
 Nelson, W. A., and J. M. Schmidek. 2008. 'Rural Health Care Ethics. In The Cambridge Textbook of Bioethics, edited by P. A. Singer. Cambridge, UK: Cambridge University Press. 
 Nelson, W., G. Lushkov, A. Pomerantz, and W. B. Weeks. 2006. Rural health care ethics: is there a literature? The American journal of bioethics : AJOB 6 (2):44-50. 
 Nelson, W., A. Pomerantz, K. Howard, and A. Bushy. 2007. A proposed rural healthcare ethics agenda. Journal of medical ethics 33 (3):136-9. 
 Nelson, William A., ed. 2010. Handbook for Rural Health Care Ethics: a Practical Guide for Professional. Hanover, NH: Dartmouth College Press. 
 R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. 
 SAS for Windows 9.2. SAS Institute Inc, Cary, NC 
 http://www.surveymonkey.com. SurveyMonkey, Palo Alto, CA. 
 United States Department of Agriculture Economic Research Service. 2011. Measuring Rurality: Rural-Urban Commuting Area Codes. U.S. Department of Agriculture 2005 [cited December 7 2011]. Available from http://www.ers.usda.gov/briefing/rurality/ruralurbancommutingareas/. 
 WHO. 2010. Increasing access to health workers in remote and rural areas through improved retention: Global policy recommendations. Geneva, Switzerland: World Health Organization.
  • Should the United States Sign Off on Presumed Consent?

    Sebastian Agredo (Columbia University Libraries, 2014-09-01)
  • Hacking Disease

    Ishaan Kumar (Columbia University Libraries, 2020-02-01)
    Imagine a life of strict diets, no cake and champagne on your birthday, lest you suffer incapacitating pain, jaundice, and diabetes, with the threat of pancreatic failure always looming overhead. This was the inevitable life of a patient with lipoprotein lipase deficiency (LPLD), a rare genetic disease, until Glybera burst onto the scene. Glybera was a veritable scientific breakthrough – the world’s first gene therapy to be approved for use in the European Union, and a one-time cure.[1] However, Glybera came with a caveat – a price tag of $1 million. It was developed at University of British Columbia (UBC) and marketed by uniQure, and while it was on the market, only one insurer covered the drug, and only one patient received the drug outside of clinical trials. This resulted in Glybera being a commercial failure, haemorrhaging $2 million a year. [2]  uniQure tried to save the drug by entering the American market, but the burden of further post-market evaluations and risk-benefit analyses proved to be too much for uniQure.[3]  It failed to receive FDA approval and was pulled from the European market in 2017. This was going to be the end of what was then the world’s most expensive drug, until a group of biohackers based across the United States and Europe announced that they would reverse engineer the drug and release it to any patient who needed it for free. The biohacked “Slybera” is to be, we’re told, the same drug, synthesized using published literature to be an inexpensive gene therapy. While we await evidence that this can be done, the biohackers claim that Slybera is in development, and that it will be delivered soon, pending further testing.[4] 
 It’s easy to assess this situation and immediately level accusations of unethicality towards the biohackers, for a multitude of reasons. For one thing, their actions violate the intellectual property of uniQure, and for another, it is difficult to validate if biohackers can synthesize Slybera in a safe and effective form. However, I believe that the biohackers are carrying out their ethical duty, by trying to release this drug to patients who need it. While there have been instances when pharmaceutical companies and the FDA have acted heroically, against their own financial interests to save patients’ lives, in this specific instance, the FDA and uniQure are acting unethically by decreasing access to medicine through financial and regulatory means.  
 Underlying this controversy is the question of access, and the role of social justice in medicine. The biohackers present themselves as the answer to this situation, in which a slighted patient population has had its only chance at a cure stripped of them through overregulation by the FDA and pharmaceutical mismanagement of Glybera by uniQure. Biohackers purposefully exist outside of established research systems, to sidestep the regulatory and ethical barriers that slow scientific research down. This ‘outside-the system’ experience gives biohackers a great opportunity, not only to help a struggling patient population, but also to disrupt and reform the current drug regulation system in the United States. The aim of expediency for a suffering patient population is a morally admirable one, but we must be critical of the biohackers, and demand rigour and safety from them, if they want to be viewed as a legitimate force for change.  
 To make decisions about the moral acceptability of the invested parties’ actions, we have to consider these principles. First, are they trying to alleviate suffering? Second, are they respecting all people? Finally, are they exploiting vulnerable populations? Moreover, we must also consider the actions of the FDA and uniQure, as they are instrumental to understanding the systemic backdrop surrounding Slybera. 
 The FDA has taken a hard-line stance against such biohacking initiatives, with recent directives warning that the “sale of these products is against the law.”[5] Biohackers have circumnavigated this law by promising to release Slybera for free. It is no secret that there is disdain towards the extensive drug approval process (which can take up to ten years), which has been criticized for depriving patients of life-saving treatments.[6],[7]  In cases such as Glybera, where there is no alternative treatment, an inefficient drug approval system causes harm to all the patients who can’t access the medications they need. The delayed release of drugs not only has a social, physiological, and economic cost, it harms patients and has an ethical cost associated.  
 However, the FDA is not the only ethically compromised body – uniQure, the pharmaceutical company that developed Glybera also holds significant blame. UBC’s Michael Hayden led the original Glybera research team, noting that when Glybera was first formulated and shown to be effective in mice, uniQure was formed in order to market the drug, which is when the mismanagement began. “As the clinician scientists, we lost control of the project completely [...] [uniQure executives] decided that they were going to charge a million dollars a shot.”4  uniQure tried and failed to uphold its fiduciary responsibility to its investors and in the process hurt both its own revenue as well as LPLD patients. Since withdrawing Glybera, uniQure has reinvested the money into a promising haemophilia B gene therapy which is in Phase III studies right now. 2 However, this doesn’t mitigate the fact that they slighted the members of the LPLD community through the financial mismanagement of Glybera.  
 Now, we can turn our attention to the biohackers themselves. In the case of injury, they would be legally culpable, but this doesn’t equate with moral responsibility. Unlike uniQure and the FDA, they are upholding the No Harm principle—alleviating suffering through the drug that they are trying to develop. However, it is not clear whether they are respecting people’s right to autonomy, and whether they are exploiting vulnerable populations. In previous years, biohacking has comprised of self-experimentation in order to determine toxicity, efficacy and other relevant clinical factors.[8] If Slybera were in this stage of development when it was released, they would not be able to supply an exhaustive evidence-based list of risks and benefits of the treatment to the patient, violating the patient’s right to informed consent. Moreover, patients with LPLD are members of a vulnerable class, as there are no other treatment options for them; hence, presenting a glorified research project as a treatment option can easily be seen as abusive, self-serving, and exploiting a vulnerable patient population. 
 Thus, biohackers and other open-science enthusiasts who insist on operating outside of the purview of the regulatory system must self-regulate in a manner that both encourages research expediency, as well as respecting the rights of the patients. Crucially, this involves acknowledging the intellectual and physical limitations that being outside the pre-established system of research places on them. Encouragingly, the issue of standards and self-regulation have been raised at biohacking conventions, with Gabriel Licina, one of the lead scientists on the Slybera project, warning the community that preliminary data doesn’t license them to run straight to patients with their DIY treatments. In Licina’s words “This is the time for us to stop playing around with our petty self-centred little projects and actually do something that matters.”[9]  Since then, Licina has started a peer-review system of independent biologists, and said he will begin a dialogue with the FDA and traditional biological science researchers in order to ensure that patients have access to the best drug possible.[10] Given the lack of action from the pharmaceutical side, the biohackers should work with institutions in order to test efficacy and safety, and share their science with those with the funding to deliver it to regulatory bodies to manufacture the drug safely. However, they can no longer hide behind the thin shroud of anti-establishment rhetoric – if they would like to make a difference to patients, they need to engage in a mature conversation with the current systems at play. 
  The biohacking movement is currently at a crossroads, straddling the line between ethical and unethical practise, and their choices will define the movement and its legitimacy in years to come. It’s no secret that the FDA and pharmaceutical companies need reform in order to return to their supposed primary aim – serving the patient population. Open science has, on occasion, shown itself to be immature and overzealous, however, it has successfully resisted some of the regulatory issues that plague our current system. History has taught us in graphic terms that bioethics needs to be central to clinical practise, and the Slybera researchers should consider ethics as important, if not more important, as the science they are doing.  
 Bibliography: 
 1.     Warner, Evelyn. “Goodbye Glybera! The World's First Gene Therapy Will Be Withdrawn.” Labiotech.eu, September 2, 2019. https://www.labiotech.eu/medical/uniqure-glybera-marketing-withdrawn/. 
 2.     “UniQure Announces It Will Not Seek Marketing Authorization ...” uniQure.com, April 20, 2017. http://www.uniqure.com/GL_PR_Glybera withdrawal_FINAL_PDF.pdf. 
 3.     Sagonowsky, Eric. “With Its Launch Fizzling out, UniQure Gives up on $1M Gene Therapy Glybera.” FiercePharma, April 20, 2017. https://www.fiercepharma.com/pharma/uniqure-gives-up-1m-gene-therapy-glybera. 
 4.     Pearlman, Alex. “Biohackers Are Pirating a Cheap Version of a Million-Dollar Gene Therapy.” MIT Technology Review. MIT Technology Review, September 3, 2019. https://www.technologyreview.com/s/614245/biohackers-are-pirating-a-cheap-version-of-a-million-dollar-gene-therapy/. 
 5.     “Information about Self-Administration of Gene Therapy.” U.S. Food and Drug Administration. FDA: Center for Biologics Evaluation and Research, November 21, 2017. https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products/information-about-self-administration-gene-therapy. 
 6.     “How Long Does the FDA Take to Approve a Drug?” HIV. US Department of Veteran Affairs, April 5, 2007. https://www.hiv.va.gov/patient/clinical-trials/drug-approval-process.asp. 
 7.     Kenneth A. Young, "Of Poops and Parasites: Unethical FDA Overregulation," Food and Drug Law Journal 69, no. 4 (2014): 555-574 
 8.     Brown, Kristen V. “What Does an Infamous Biohacker's Death Mean for the Future of DIY Science?” The Atlantic. Atlantic Media Company, May 7, 2018. https://www.theatlantic.com/science/archive/2018/05/aaron-traywick-death-ascendance-biomedical/559745/. 
 9.     Carlough, Nicholas. “Scihouse Goes to BioHack The Planet 2019.” SCIHOUSE INC. 501(c)(3), September 4, 2019. https://www.scihouse.space/scihouse-goes-to-biohack-the-planet-2019/. 
 10.  “'I Propose We Grow Up a Little Bit': Biohackers Grapple with When to Reject Mainstream Science–And When to Embrace It.” Bioethics.com, September 3, 2019. https://bioethics.com/archives/48006. 
   
   
 [1] Warner, Evelyn. “Goodbye Glybera! The World's First Gene Therapy Will Be Withdrawn.” Labiotech.eu, September 2, 2019. https://www.labiotech.eu/medical/uniqure-glybera-marketing-withdrawn/. 
 [2] “UniQure Announces It Will Not Seek Marketing Authorization ...” uniQure.com, April 20, 2017. http://www.uniqure.com/GL_PR_Glybera withdrawal_FINAL_PDF.pdf. 
 [3] Sagonowsky, Eric. “With Its Launch Fizzling out, UniQure Gives up on $1M Gene Therapy Glybera.” FiercePharma, April 20, 2017. https://www.fiercepharma.com/pharma/uniqure-gives-up-1m-gene-therapy-glybera. 
 [4] Pearlman, Alex. “Biohackers Are Pirating a Cheap Version of a Million-Dollar Gene Therapy.” MIT Technology Review. MIT Technology Review, September 3, 2019. https://www.technologyreview.com/s/614245/biohackers-are-pirating-a-cheap-version-of-a-million-dollar-gene-therapy/. 
 [5] “Information about Self-Administration of Gene Therapy.” U.S. Food and Drug Administration. FDA: Center for Biologics Evaluation and Research, November 21, 2017. https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products/information-about-self-administration-gene-therapy. 
 [6] “How Long Does the FDA Take to Approve a Drug?” HIV. US Department of Veteran Affairs, April 5, 2007. https://www.hiv.va.gov/patient/clinical-trials/drug-approval-process.asp. 
 [7] Kenneth A. Young, "Of Poops and Parasites: Unethical FDA Overregulation," Food and Drug Law Journal 69, no. 4 (2014): 555-574 
 [8] Brown, Kristen V. “What Does an Infamous Biohacker's Death Mean for the Future of DIY Science?” The Atlantic. Atlantic Media Company, May 7, 2018. https://www.theatlantic.com/science/archive/2018/05/aaron-traywick-death-ascendance-biomedical/559745/. 
 [9] Carlough, Nicholas. “Scihouse Goes to BioHack The Planet 2019.” SCIHOUSE INC. 501(c)(3), September 4, 2019. https://www.scihouse.space/scihouse-goes-to-biohack-the-planet-2019/. 
 [10] “'I Propose We Grow Up a Little Bit': Biohackers Grapple with When to Reject Mainstream Science–And When to Embrace It.” Bioethics.com, September 3, 2019. https://bioethics.com/archives/48006.
  • Get Uncomfortable

    Priya Misra (Columbia University Libraries, 2016-03-01)
    During my first year of medical school we were required to go to an open Alcoholics Anonymous (AA) meeting, about which I was excited but also a bit scared and nervous. It was an open session, so those attending knew that people who weren’t actually in AA would be there to listen. The meeting took place at an undergraduate university so it consisted mainly of students; I was completely unprepared to see so many men and women my own age suffering from a disease that remained largely unfamiliar to me. The meeting took place in a small room in the student union with comfy chairs and couches. There were random books and old club signs scattered around the room, which gave it a welcoming feel, a place where you could relax and be yourself. 
 Since it was Friday, there were only three students who showed up: the leader of the meeting, a regular, and a third who was questioning whether or not she wanted to be there. The leader of the meeting spent a lot of time explaining what AA is, how it works, his own story of what he went through to finally realize that he needed to be in AA, and what his progress has been since starting the program. Afterwards, the other members shared parts of their stories, and they asked me and the other medical students if we had any questions for them. They were incredibly honest with all of us, and you could tell that they had truly accepted their past and their disease. They were extremely committed to the program and their own sobriety. 
 Although I can’t share details of anyone’s story, I can say that it was heart-wrenching to hear their deeply rooted involvement with drugs and alcohol, which caused them to face death, rape, and loss before they “hit rock bottom” and realized they needed help. Some did not even come to that realization themselves, but were instead forced to attend AA by family members. They came to appreciate its saving grace and decided to pursue the program independently. 
 I was immediately surprised by the overarching religious tone of the meeting and was curious whether it turned a lot of people away. As the meeting progressed, however, I realized that the “higher power” they spoke of did not necessarily have to be God; it could be music, poetry, or anything that would get you through tough times. I learned that AA is based on the belief that you must submit yourself to a higher power in order to truly believe that alcoholism is a disease; unless these patients believed in something more powerful they would never stop blaming themselves for an illness that was not their fault. 
 The main reason for the AA visit was to objectively assess the quality of these community resources and decide whether we, as future physicians, would recommend them to our patients. I was surprised, and disappointed, by the responses I had heard from my classmates. So many of them were “uncomfortable” with what they had heard and experienced, especially by the mention of “God.” They kept talking about how they felt out of place at this meeting, and felt “uncomfortable” around people who were sharing their life stories and struggles, as if they were not supposed to hear them or be there. 
 That was when I realized that I hate the word “uncomfortable.” It truly angered me when I heard that. Listening to these stories can indeed make someone uncomfortable, but fixating on our own feelings and never learning how to put such feelings aside is unacceptable, especially as a future physician. Our place was to listen to these individuals and hear what they have been through, admiring their strength and human spirit. The stories I heard were beyond anything I could have ever imagined and it made me feel so sad and helpless that I could not do anything to help them. But I was amazed by the will inside of them that forced them to take action and ask for help. These people truly had been to hell and back: One AA member recalled blacking out and waking up to an unknown man on top of her stripping her clothing without her permission; another had once ingested such a toxic cocktail of alcohol and drugs that an EMT barely saved his life. Compared to everything they had been through, I’m sure that sharing their stories with a medical student is far from the hardest thing they have had to do. Personally, I felt it was disrespectful to say that listening to what they had to say was “uncomfortable.” 
 I think what medical students should realize is that as future doctors we are not only going to be helping our patients with their health and well-being, but we will also be seen as a source of support: someone that a patient can turn to in times of need, whatever need that may be. Throughout our careers we will be counseling adolescent patients on sexual education or condom use. We may talk to patients’ families about placing their parents on a “Do Not Resuscitate” list or starting Hospice Care. It is never comfortable to notify a new mother that her urine tested positive for drugs and that you are now forced to call Child Protective Services. All of these situations are uncomfortable for us as physicians, but it is still our responsibility to deal with them; at some point we have to move past how it makes us feel and learn to deal with our feelings appropriately so we can provide effective patient care. We too often forget that this profession is not about us; it is about our patients and that may require us to do things that are outside of our comfort zone. 
 When we learned about interpersonal violence, how to screen for it, and the appropriate courses of action, it really hit me that as a future doctor these tasks will be my responsibility. Patients are going to look to me as a source of help and protection, even if I am unfamiliar with what they are experiencing. I guess I had never seen my doctor that way because I am fortunate enough to have never been in a situation in which I needed that type of help; most of the visits I have with my primary care physician are just annual physicals and I usually have nothing to report. But what is so easy to forget is that the majority of patients will not be like me. It may be unfamiliar or “uncomfortable” to hear stories from patients about abusive partners, or substance abuse, but that is just something that comes with the job. If we are too scared to face what makes us uncomfortable, then how will we ever help our patients? 
 When I was in high school, during my first week of freshman year the whole class was called into the auditorium for a lecture from the principal. We were 400 confused, eager, and anxious freshmen too focused on how to get to their next class on time to understand the significance of any wisdom this man would tell them. Most of us were expecting a “Welcome to high school, the next four years will be hard but awesome” speech; instead, my principal said something to me that never made sense until now. He said, “Get uncomfortable.” I always thought that he should have told us to get comfortable, especially since we would be there for four years and should have a sense of community. But I realize now the value of these words, especially for a medical student. Get uncomfortable now because this is the time to learn how to handle such situations, make mistakes, and develop appropriate communication and coping skills. Learn to appreciate what you are unfamiliar with because this is the field that will throw discomfort at you every day, and it is your responsibility to handle those situations with grace and tact. You cannot choose your patients, or your experiences; all you can do is learn from the present in order to make the future successful. 
 Soon after that small group meeting, we had another in which we talked about spirituality and how it plays into medicine. Our professor asked us, “If a patient asked you to pray with them, would you?” The majority of my classmates said they probably would not because it would make them “uncomfortable” due to their personal religious views. It reminded me of this moment in a Scrubs episode, where the main character, JD, had just experienced the loss of his first patient. And I still remember the most amazing thing he said: “As I stood there and looked at his body, all I could think of was how selfish I was; thinking of how difficult this must be for me.” 
 If you are not a religious person or a patient’s ideology seriously conflicts with your own, I can understand feeling uncomfortable and declining to pray with that patient. But is it the worst thing in the world to just bow your head and stand silently and respectfully if it means that it will build rapport with your patient and their family, or if it means that your patient will heal faster? Too often we are quick to say no to something that is out of our normal routine and don’t think about how positively it will impact our patients. Religion is often a charged, sensitive topic; nevertheless, medicine is a selfless field and we have to be willing to try new things, to put ourselves in uncomfortable or new situations, and to put our patients’ wellbeing ahead of our own. 
 This summer I read a book by Dr. Danielle Ofri called What Doctors Feel: How Emotions Affect the Practice of Medicine, and she starts her book with a pertinent anecdote: she recalls how she had volunteered to be a rape crisis counselor and had received her first call to come help a young woman who had just been admitted to the hospital. She explained how she had waited for this moment, and how anxious she was to help this young woman. Then, when she finally saw her, she was completely taken aback: the woman was homeless, battered, unclean, and there were cockroaches crawling out of her hair. Dr. Ofri recoiled and pretended to be busy with paperwork, unable to approach her patient because she had gotten scared and felt “uncomfortable” being near the cockroaches. She admitted, “This was my patient, after all. This was a human being who had just been violated in the most horrible manner. It was my job to go there and help her. This was what it meant to be a doctor. Yet all I could do was cringe behind the desk.” Finally, a nurse’s aide noticed the patient and gently approached her, helping her to the showers, supporting her and making her feel warm and safe. The entire time, Dr. Ofri just hid and watched someone else do her job for her because she was too scared and uncomfortable to do so. She recalls, “I sat hidden behind the desk, awed and humbled…I sank back in my chair, realizing how much I needed to learn about medicine.” 
 In order to avoid repeating Dr. Ofri’s experience, we must learn now how to handle these situations, so that when we are real doctors with patients’ lives in our hands, we can face discomfort with confidence and knowledge. Medical school is not just about learning facts—it is also about learning how to talk to difficult patients and handle awkward situations. We go to AA and face uncomfortable truths now so that we can learn the necessary skills to do so in the future, when it truly counts. 
 Dr. Ofri is right: there is still so much that we all must learn about medicine and now is the time to do so. So please, I urge you all to do one thing: 
 Get uncomfortable.
  • The Ethics of Using De-Identified Medical Data for Research without Informed Consent

    Art Caplan; Prag Batra (Columbia University Libraries, 2019-11-01)

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