Minority Health and Health Equity Archive

Permanent URI for this collectionhttp://hdl.handle.net/1903/21769

Welcome to the Minority Health and Health Equity Archive (MHHEA), an electronic archive for digital resource materials in the fields of minority health and health disparities research and policy. It is offered as a no-charge resource to the public, academic scholars and health science researchers interested in the elimination of racial and ethnic health disparities.

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Now showing 1 - 6 of 6
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    Compensation for Injured Research Subjects
    (New England Journal of Medicine, 2006) Steinbrook, Robert
    The article discusses compensation options for research subjects who incur injury during medical trials. The author notes two views: those that view compensation to injured participants as an obligation and those that view compensation as not obligatory because volunteers were made aware of possible risks and consented to the study on their own. Also mentioned as topics of debate are the extent and duration of potential coverage of participants that may have been injured as well as determining if an injury is in fact a complication of the study or not.
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    Recovering from Research: A No-Fault Proposal to Compensate Injured Research Participants
    (American Journal of Law & Medicine, 2012-03) Pike, Elizabeth
    National advisory committees have considered the obligations owed to research participants in the event of research-related injuries. These committees have repeatedly concluded that injured research participants are entitled to compensation for their injuries, that the tort system provides inadequate remedies, and that the United States should adopt no-fault compensation. But because the advisory comm ittees have made no concrete proposals and have taken no steps toward implementing no-fault compensation, the United States continues to rely on the tort system to compensate injured research participants. This Article argues that recent legal developments and a transformation in the global research landscape make maintaining the status quo morally indefensible and practically unsustainable. Recent legal developments exacerbate the longstanding difficulties associated with the tort system as a method of compensation; nearly every injured research participant will have difficulty recovering damages, and certain classes of injured research participants-those in federal research and those abroad-are prevented from recovering altogether, resulting in substantial unfairness. In the past ten years, many of the countries substantially involved in research have mandated systematic compensation. By not mandating compensation, the United States has become a moral outlier and risks having its noncompliant research embargoed by foreign ethics committees, thereby delaying important biomedical advances. This Article examines alternative compensation mechanisms and offers a concrete no-fault compensation proposal built on systems already in place. The proposed system can be implemented in the United States and countries around the world to help harmonize various national compensation systems and to more equitably and effectively make those injured by research whole. [ABSTRACT FROM AUTHOR]
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    PART III: The Bioethics Sins of a Nation Being Rectified
    (2010) Bowen, Elaine Hegwood
    “All I knew was that they just kept saying I had the bad blood—they never mentioned syphilis to me, not even once,” said Tuskegee Syphilis Study participant Charles Pollard. Mr. Pollard was referring to the early 1930’s, when he was a participant in the Tuskegee Study. He was also one of the last eight living participants when Pres. Bill Clinton apologized to the men at the White House in 1997, saying “they were denied help, and they were lied to by their Government.” Unfortunately, in 2010 another medical injustice has been uncovered—the case of a Baltimore woman who died in 1951 nearly at the half-point mark of the noted Tuskegee Study. Bioethics is basically the study of the ethical issues brought about by advances in medicine. As we explore these two bioethics episodes, it involves the lack of respect for persons and the absence of informed consent guidelines during research, we can learn much about their influence on the Black community and contemporary medical research.
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    Racial Differences in Parents' Distrust of Medicine and Research
    (2009) Rajakumar, Kumaravel; Thomas, Stephen B.; Musa, Donald; Almario, Donna; Garza, Mary A.
    Objective To assess and compare the attitudes and trust that African American and white parents have toward their children participating in research. Design Self-administered, cross-sectional survey of a convenience sample of parents. Setting Primary Care Center at Children's Hospital of Pittsburgh from August 2004 through April 2005. Participants One hundred ninety parents (140 African American and 50 white parents). Outcome Measure Parental distrust of medical research as measured by a summative score of distrusting responses to 8 questions assessing trust in research. Results African American parents had significantly greater distrust than white parents (67% vs 50%, P = .04). Education was also associated with having significantly greater distrust (74% of those with
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    Race and Trust in the Health Care System
    (2003) Boulware, L. Ebony; Cooper, Lisa A.; Ratner, Lloyd E.; LaVeist, Thomas A.; Powe, Neil R.
    Objective. A legacy of racial discrimination in medical research and the health care system has been linked to a low level of trust in medical research and medical care among African Americans. While racial differences in trust in physicians have been demonstrated, little is known about racial variation in trust of health insurance plans and hospitals. For the present study, the authors analyzed responses to a cross sectional telephone survey to assess the independent relationship of self-reported race (non-Hispanic black or non-Hispanic white) with trust in physicians, hospitals, and health insurance plans. Methods. Respondents ages 18–75 years were asked to rate their level of trust in physicians, health insurance plans, and hospitals. Items from the Medical Mistrust Index were used to assess fear and suspicion of hospitals. Results. Responses were analyzed for 49 (42%) non-Hispanic black and 69 (58%) non-Hispanic white respondents (N=118; 94% of total survey population). A majority of respondents trusted physicians (71%) and hospitals (70%), but fewer trusted their health insurance plans (28%). After adjustment for potential confounders, non-Hispanic black respondents were less likely to trust their physicians than non-Hispanic white respondents (adjusted absolute difference 37%; p=0.01) and more likely to trust their health insurance plans (adjusted absolute difference 28%; p=0.04). The difference in trust of hospitals (adjusted absolute difference 13%) was not statistically significant. Non-Hispanic black respondents were more likely than non-Hispanic white respondents to be concerned about personal privacy and the potential for harmful experimentation in hospitals. Conclusions. Patterns of trust in components of our health care system differ by race. Differences in trust may reflect divergent cultural experiences of blacks and whites as well as differences in expectations for care. Improved understanding of these factors is needed if efforts to enhance patient access to and satisfaction with care are to be effective.
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    Race, Medical Researcher Distrust, Perceived Harm, and Willingness to Participate in Cardiovascular Prevention Trials
    (2008) Braunstein, Joel B.; Sherber, Noelle S.; Schulman, Steven P.; Ding, Eric L.; Powe, Neil R.
    Abstract: Minority underrepresentation exists in medical research including cardiovascular clinical trials, but the hypothesis that this relates to distrust in medical researchers is unproven. Therefore, we examined whether African American persons differ from white persons in perceptions of the risks/benefits of trial participation and distrust toward medical researchers, and whether these factors influence willingness to participate (WTP) in a clinical drug trial. Participants were self-administered a survey regarding WTP in a cardiovascular drug trial given to 1440 randomly selected patients from 13 Maryland outpatient cardiology and general medicine clinics. Patients reported their WTP, rated their perceived chances of experiencing health benefit and harm, and rated their distrust toward researchers. Of eligible participants, 70% responded, and 717 individuals were included: 36% African American and 64% white. African American participants possessed lower WTP than white participants (27% vs. 39%, p = 0.001) and had higher mean distrust scores than whites (p < 0.0001). African American participants more frequently reported that doctors would less fully explain research participation to them (24% vs. 13%, p < 0.001), use them as guinea pigs without their consent (72% vs. 49%, p < 0.001), prescribe medication as a way of experimenting on people without their knowledge (35% vs. 16%, p < 0.001), and ask them to participate in research even if it could harm them (24% vs. 15%, p = 0.002). African American participants also more often believed they could less freely ask their doctor questions (8% vs. 2%, p < 0.001) and that doctors had previously experimented on them without their consent (58% vs. 25%, p < 0.001). African American participants expressed lesser WTP than white participants after controlling for racial differences in age, sex, socioeconomic status and cardiovascular disease risk profiles (multivariable odds ratio [OR], 0.57; 95% confidence interval [CI], 0.39–0.85). The impact of race was attenuated and nonsignificant after adjustment for potential mediating factors of racial differences in medical researcher distrust and perceived risk of harm (explanatory model OR, 0.84; 95% CI 0.54–1.30). In summary, African American participants expressed markedly greater concerns about experiencing harm from participation in clinical trials and distrust toward medical researchers than white participants. These factors, in turn, appear to explain much of the resistance among African American persons to participate in clinical trials compared to white persons.