U.S. Public Health Service STD Experiments in Guatemala (1946–1948) and Their Aftermath

Kayte Spector-Bagdady, Paul A. Lombardo

Ethics and Human Research

Abstract

The U.S. Public Health Service’s sexually transmitted disease (STD) experiments in Guatemala are an important case study not only in human subjects research transgressions but also in the response to serious lapses in research ethics. This case study describes how individuals in the STD experiments were tested, exposed to STDs, and exploited as the source of biological specimens—all without informed consent and often with active deceit. It also explores and evaluates governmental and professional responses that followed the public revelation of these experiments, including by academic institutions, professional organizations, and the U.S. federal government, pushing us to reconsider both how we prevent such lapses in the future and how we respond when they are first revealed.


SpectorBagdady K, Lombardo PA. U.S. Public Health Service STD Experiments in Guatemala (1946–1948) and Their Aftermath. Ethics & Human Research. 2019 Apr; 41(2): 29-34.

Divisions, New and Old — Conscience and Religious Freedom at HHS

Lisa H. Harris

NEJM

January, the U.S. Department of Health and Human Services (HHS) announced the creation of its Conscience and Religious Freedom Division, explaining that it will allow HHS’s Office of Civil Rights to “more vigorously and effectively enforce existing laws protecting the rights of conscience and religious freedom” and will ensure that “no one is coerced into participating in activities that would violate their consciences, such as abortion, sterilization or assisted suicide.”1 Responses were as expected: religious conservatives hailed the new division as a needed intervention; public health and clinical leaders and advocates decried it, worrying about its impact on access to care and harm to patients.

HHS leaders’ comments to date suggest that they are uninterested in discrimination against health care providers whose consciences compel them to provide care, and uninterested in injuries to patients caused by care refusals. This framing makes conscience yet another issue dividing Americans, largely along partisan lines.


Harris LH.  Divisions, New and Old — Conscience and Religious Freedom at HHS. N Eng J Med 2018 Apr 12;378(15):1369-1371. doi: 10.1056/NEJMp1801154. Epub 2018 Mar 14

Temporal Trends in Gender-Affirming Surgery Among Transgender Patients in the United States

Joseph K. Canner, Omar Harfouch, Lisa M. Kodadek, et al

Journal of the American Medical Association

Abstract|Importance:Little is known about the incidence of gender-affirming surgical procedures for transgender patients in the United States.

Objectives:To investigate the incidence and trends over time of gender-affirming surgical procedures and to analyze characteristics and payer status of transgender patients seeking these operations.

Design, Setting, and Participants: In this descriptive observational study from 2000 to 2014, data were analyzed from the National Inpatient Sample, a representative pool of inpatient visits across the United States. The initial analyses were done from June to August 2015. Patients of interest were identified by International Classification of Diseases, Ninth Revision, diagnosis codes for transsexualism or gender identity disorder. Subanalysis focused on patients with procedure codes for surgery related to gender affirmation.

Main Outcomes and Measures: Demographics, health insurance plan, and type of surgery for patients who sought gender-affirming surgery were compared between 2000-2005 and 2006-2011, as well as annually from 2012 to 2014.

Results; This study included 37 827 encounters (median [interquartile range] patient age, 38 [26-49] years) identified by a diagnosis code of transsexualism or gender identity disorder. Of all encounters, 4118 (10.9%) involved gender-affirming surgery. The incidence of genital surgery increased over time: in 2000-2005, 72.0% of patients who underwent gender-affirming procedures had genital surgery; in 2006-2011, 83.9% of patients who underwent gender-affirming procedures had genital surgery. Most patients (2319 of 4118 [56.3%]) undergoing these procedures were not covered by any health insurance plan. The number of patients seeking these procedures who were covered by Medicare or Medicaid increased by 3-fold in 2014 (to 70) compared with 2012-2013 (from 25). No patients who underwent inpatient gender-affirming surgery died in the hospital.

Conclusions and Relevance: Most transgender patients in this national sample undergoing inpatient gender-affirming surgery were classified as self-pay; however, an increasing number of transgender patients are being covered by private insurance, Medicare, or Medicaid. As coverage for these procedures increases, likely so will demand for qualified surgeons to perform them.


Canner JK, Harfouch O, Kodadek LM, Pelaez D, Coon D, Offodile AC, Haider AH, Lau BD. Temporal Trends in Gender-Affirming Surgery Among Transgender Patients in the United States. JAMA Surg. Published online February 28, 2018. doi:10.1001/jamasurg.2017.6231

US primary care physicians’ opinions about conscientious refusal: a national vignette experiment

Farr Curlin, JD Yoon, SG Brauer

Journal of Medical Ethics

Abstract:

Objective: Previous research has found that physicians are divided on whether they are obligated to provide a treatment to which they object and whether they should refer patients in such cases. The present study compares several possible scenarios in which a physician objects to a treatment that a patient requests, in order to better characterise physicians’ beliefs about what responses are appropriate.

Design: We surveyed a nationally representative sample of 1504 US primary care physicians using an experimentally manipulated vignette in which a patient requests a clinical intervention to which the patient’s physician objects. We used multivariate logistic regression models to determine how vignette and respondent characteristics affected respondent’s judgements.

Results:
Among eligible respondents, the response rate was 63% (896/1427). When faced with an objection to providing treatment, referring the patient was the action judged most appropriate (57% indicated it was appropriate), while few physicians thought it appropriate to provide treatment despite one’s objection (15%). The most religious physicians were more likely than the least religious physicians to support refusing to accommodate the patient’s request (38% vs 22%, OR=1.75; 95% CI 1.06 to 2.86).

Conclusions:
This study indicates that US physicians believe it is inappropriate to provide an intervention that violates one’s personal or professional standards. Referring seems to be physicians’ preferred way of responding to requests for interventions to which physicians object.

Brauer SG, Yoon JD, Curlin FA  US primary care physicians’ opinions about conscientious refusal: a national vignette experiment.  J Med Ethics. 2016 Feb;42(2):80-4. doi: 10.1136/medethics-2015-102782. Epub 2015 Jul 1.

Dignity, death, and dilemmas: A study of Washington hospices and physician-assisted death

Courtney S. Campbell, Margaret A. Black

Journal of Paint and Sympton Management

Abstract:

The legalization of physician-assisted death in states such as Washington and Oregon has presented defining ethical issues for hospice programs because up to 90% of terminally ill patients who use the state-regulated procedure to end their lives are enrolled in hospice care. The authors recently partnered with the Washington State Hospice and Palliative Care Organization to examine the policies developed by individual hospice programs on program and staff participation in the Washington Death with Dignity Act. This article sets a national and local context for the discussion of hospice involvement in physician-assisted death, summarizes the content of hospice policies in Washington State, and presents an analysis of these findings. The study reveals meaningful differences among hospice programs about the integrity and identity of hospice and hospice care, leading to different policies, values, understandings of the medical procedure, and caregiving practices. In particular, the authors found differences 1) in the language used by hospices to refer to the Washington statute that reflect differences among national organizations, 2) the values that hospice programs draw on to support their policies, 3) dilemmas created by requests by patients for hospice staff to be present at a patient’s death, and 4) five primary levels of noninvolvement and participation by hospice programs in requests from patients for physician-assisted death. This analysis concludes with a framework of questions for developing a comprehensive hospice policy on involvement in physician-assisted death and to assist national, state, local, and personal reflection.


Campbell CS, Black MA. Dignity, death, and dilemmas: A study of Washington hospices and physician-assisted death. J Pain Symptom Manage. 2013 Jul 3. pii: S0885-3924(13)00270-4. doi: 10.1016/j.jpainsymman.2013.02.024. [Epub ahead of print]

Freedom of conscience and health care in the United States of America

Conflict Between Public Health and Religious Liberty in the Patient Protection and Affordable Care Act

Peter West-Oram

Health Care Analysis

Abstract

The recent confirmation of the constitutionality of the Obama administration’s Patient Protection and Affordable Care Act (PPACA) by the US Supreme Court has brought to the fore long-standing debates over individual liberty and religious freedom. Advocates of personal liberty are often critical, particularly in the USA, of public health measures which they deem to be overly restrictive of personal choice. In addition to the alleged restrictions of individual freedom of choice when it comes to the question of whether or not to purchase health insurance, opponents to the PPACA also argue that certain requirements of the Act violate the right to freedom of conscience by mandating support for services deemed immoral by religious groups. These issues continue the long running debate surrounding the demands of religious groups for special consideration in the realm of health care provision. In this paper I examine the requirements of the PPACA, and the impacts that religious, and other ideological, exemptions can have on public health, and argue that the exemptions provided for by the PPACA do not in fact impose unreasonable restrictions on religious freedom, but rather concede too much and in so doing endanger public health and some important individual liberties.


West-Oram P. Freedom of conscience and health care in the United States of America: Conflict Between Public Health and Religious Liberty in the Patient Protection and Affordable Care Act. Health Care Anal. 2013 Mar 29. [Epub  ahead of print] PubMed PMID: 23539432.

Religion and conscientious objection: a survey of pharmacists’ willingness to dispense medications

Laura A.Davidson, Clare T.Pettis, Amber J.Joiner, Daniel M.Cook, Craig M.Klugmand

Social Science & Medicine

Abstract: Some US states allow pharmacists to refuse to dispense medications to which they have moral objections, and federal rules for all health care providers are in development. This study examines whether demographics such as age, religion, gender influence 668 Nevada pharmacists’ willingness to dispense or transfer five potentially controversial medications to patients 18 years and older: emergency contraception, medical abortifacients, erectile dysfunction medications, oral contraceptives, and infertility medications. Almost 6% of pharmacists indicated that they would refuse to dispense and refuse to transfer at least one of these medications.  Religious affiliation significantly predicted pharmacists’ willingness to dispense emergency contraception and medical abortifacients, while age significantly predicted pharmacists’ willingness to distribute infertility medications.  Evangelical Protestants, Catholics and other-religious pharmacists were significantly more likely to refuse to dispense at least one medication in comparison to non-religious pharmacists in multinomial logistic regression analyses.  Awareness of the influence of religion in the provision of pharmacy services should inform health care policies that appropriately balance the rights of patients, physicians, and pharmacists alike.  The results from Nevada pharmacists may suggest similar tendencies among other health care workers, who may be given latitude to consider morality and value systems when making clinical decisions about care.


Davidson LA, Pettis CT, Joiner AJ, Cook DM, Klugman CM. Religion and conscientious objection: a survey of pharmacists’ willingness to dispense medications. Soc Sci Med. 2010 Jul;71(1):161-5. Epub 2010 Apr 13. PubMed PMID: 20447746

Conscientious objection to assigned work tasks: A comment on relations of law and culture

Roger Cotterrell

Comparative Labor Law & Policy Journal

This paper considers how far a legal-cultural perspective may help to explain contrasts in approaches, in different jurisdictions, to a particular legal issue addressed by five national reports on which the paper comments. The issue is: how should law respond to employees’ objections, on grounds of conscience, to being required to perform particular work tasks assigned by their employers, or to being required to perform them in particular ways? The national reports discussed relate to Japan, the United States, Germany, Israel and Spain. The paper argues that cultural factors can influence not only law’s response but also the ways in which the issue of conscience is understood, contextualised and legally presented.


Cotterrell R. Conscientious objection to assigned work tasks: A comment on relations of law and culture. Queen Mary University of London, School of Law Legal Studies Research Paper No. 104/2012.  Comparative Labor Law & Policy Journal, volume 31 (2010), 511-22