Publications by authors named "Patricia A Marshall"

31 Publications

The role of causal knowledge in stigma considerations in African genomics research: Views of South African Xhosa people.

Soc Sci Med 2021 05 7;277:113902. Epub 2021 Apr 7.

Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. Electronic address:

Introduction: Advances in genomics research have raised several ethical concerns. One concern is the potential impact of genomics research on stigma experienced by people affected by a disease. Studies have found that the type of illness as well as disease causal beliefs impact on the relation between genetic attribution and stigma. This study explored the potential impact of genetic attribution of disease on stigma among Xhosa people with Rheumatic Heart Disease (RHD).

Methods: Study participants were 46 Xhosa people with RHD living in the Western Cape Province of South Africa. Using video vignettes in 7 focus group discussions we explored whether and how genetic attribution may impact on disease-stigma. Vignettes introduced participants to non-genetic and genetic causal explanations and were followed-up with a series of open-ended questions eliciting their perceptions of non-genetic disease causes as well as genetic causation and its impact on internalised stigma.

Results: This study found that Xhosa people with RHD have a general understanding of genetics and genetic attribution for disease. Additionally, and not withstanding their genetic knowledge, these participants hold multiple disease causal beliefs including genetic, infectious disease, psychosocial, behavioural and cultural explanations. While there was evidence of internalised stigma experiences among participants, these appeared not to be related to a genetic attribution to the disease.

Discussion: The findings of this study provide clues as to why it is unlikely that a genetic conceptualisation of disease impacts internalised stigma experiences of Xhosa people. The causal explanations provided by participants reflect their cultural understandings and their context, namely, living in low-income and poverty-stricken environments. Divergence in these findings from much of the evidence from high-income countries emphasises that context matters when considering the impact of genetic attribution on stigma and caution against generalising findings from one part of the globe to another.
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http://dx.doi.org/10.1016/j.socscimed.2021.113902DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8450780PMC
May 2021

Exploring how a genetic attribution to disease relates to stigma experiences of Xhosa patients with schizophrenia in South Africa.

Soc Psychiatry Psychiatr Epidemiol 2020 Dec 14;55(12):1679-1686. Epub 2020 May 14.

Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.

Background: Over the past three decades, a range of international stakeholders have highlighted the possibility that genomic research may impact stigma associated with psychiatric disorders. Limited research has been conducted in Africa to investigate this relation.

Method: In the present study, using focus group discussions, we explored the relation between genetic attribution and stigma among 36 Xhosa people with schizophrenia. We addressed three main questions: (1) What causal beliefs do Xhosa people with schizophrenia use to explain their illness and to what extent do genetic explanations play a role in these beliefs? (2) What are the internalised stigma experiences of Xhosa people with schizophrenia? (3) How do genetic explanations relate to stigma experiences, if at all?

Results: Most participants were able to define genetics and some linked genetics to disease causation. Despite adequate knowledge of genetics and an emphasis on genetic explanations of schizophrenia in the study, most participants held a multitude of causal explanations including: psychosocial, environmental, and cultural. Moreover, participants rarely mentioned disease cause when describing their stigma experiences.

Discussion: For this population group, there was no straight-forward relation between a genetic attribution and stigma. Therefore, we did not find evidence that genetic attribution may significantly increase stigma. Although North American and European literature provides conflicting evidence regarding this relation, there is increased consensus that biomedical explanations for psychiatric disorders may reduce blame. This study found evidence supporting that consensus. This study provides an empirical foundation to inform ongoing work on the psychosocial implications of psychiatric genomics research in non-Western contexts.
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http://dx.doi.org/10.1007/s00127-020-01875-zDOI Listing
December 2020

Photo-documentation in the community: reflections on genetics, health and health disparities.

Int J Epidemiol 2017 04;46(2):385-389

Department of Bioethics, Centre for Genetic Research Ethics and Law (CGREAL), Case Western Reserve University, Cleveland, OH, USA.

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http://dx.doi.org/10.1093/ije/dyw334DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6075582PMC
April 2017

"A rising tide lifts all boats": establishing a multidisciplinary genomic tumor board for breast cancer patients with advanced disease.

BMC Med Genomics 2016 11 21;9(1):71. Epub 2016 Nov 21.

Case Western Reserve University School of Medicine, Cleveland, USA.

Background: Research suggests that multidisciplinary genomic tumor boards (MGTB) can inform cancer patient care, though little is known about factors influencing how MGTBs interpret genomic test results, make recommendations, and perceive the utility of this approach. This study's objective was to observe, describe, and assess the establishment of the Breast Multidisciplinary Genomic Tumor Board, the first MGTB focused on interpreting genomic test results for breast cancer patients with advanced disease.

Methods: We conducted a qualitative case study involving participant observation at monthly MGTB meetings from October 2013 through November 2014 and interviews with 12 MGTB members. We analyzed social dynamics and interactions within the MGTB regarding interpretation of genomic findings and participants' views on effectiveness of the MGTB in using genomics to inform patient care.

Results: Twenty-two physicians, physician-scientists, basic scientists, bioethicists, and allied care professionals comprised the MGTB. The MGTB reviewed FoundationOne™ results for 40 metastatic breast cancer patients. Based on findings, the board mostly recommended referring patients to clinical trials (34) and medical genetics (15), and Food and Drug Administration-approved (FDA) breast cancer therapies (13). Though multidisciplinary, recommendations were driven by medical oncologists. Interviewees described providing more precise care recommendations and professional development as advantages and the limited actionability of genomic test results as a challenge for the MGTB.

Conclusions: Findings suggest both feasibility and desirability of pooling professional expertise in genomically-guided breast cancer care and challenges to institutionalizing a Breast MGTB, specifically in promoting interdisciplinary contributions and managing limited actionability of genomic test results for patients with advanced disease.
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http://dx.doi.org/10.1186/s12920-016-0234-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117517PMC
November 2016

Is there a space for place in family history assessment? Underserved community views on the impact of neighborhood factors on health and prevention.

J Prim Prev 2015 Apr;36(2):119-30

Department of Bioethics, School of Medicine, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH, 44106, USA.

Family health history tools rarely incorporate environmental and neighborhood factors, although the social and physical environments in which people live are recognized as major contributors to chronic diseases. This paper discusses beliefs about neighborhood influences on chronic disease risk among racially and ethnically diverse individuals in low-income communities in Cleveland, Ohio. We report findings from a qualitative study consisting of 121 interviews with White, African American, and Hispanic participants. Results are organized into four major themes: (1) social and economic environment, (2) physical environment, (3) barriers to healthy behaviors, and (4) participants' views on integrating genetic and non-genetic determinants of health to understand and address disease prevention and management. Findings suggest that integrating environmental factors into family health history assessments would better reflect lay perceptions of disease causation. Results have implications for improving patient-clinician communication and the development of strategies to prevent and manage chronic diseases.
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http://dx.doi.org/10.1007/s10935-015-0384-5DOI Listing
April 2015

Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria.

BMC Med Ethics 2014 May 13;15:38. Epub 2014 May 13.

Department of Bioethics, School of Medicine, Room TA 227Case Western Reserve University10900 Euclid Avenue Cleveland, Ohio 44106-4976 Cleveland, USA.

Background: Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study on breast cancer in an urban setting of Nigeria comparing women in the case and control groups.

Methods: Surveys were administered in face-to-face interviews with 215 participants following their enrollment in the genetic study (106 patients, 109 controls). Audio-taped in-depth interviews were conducted with a sub-sample of 17 (8%) women who completed the survey.

Results: The majority of all participants reported being told that participation in the genetic study was voluntary (97%), that they did not feel pressured to participate in the study (99%), and that they could withdraw from the study (81%). The majority of the breast cancer patients (83%) compared to 58% of women in the control group reported that the study purpose was to learn about the genetic inheritance of breast cancer (OR 3.44; 95% CI =1.66, 7.14, p value = 0.001). Most participants reported being told about study procedures (95%) and study benefits (98%). Sixty-eight percent of the patients, compared to 47% of the control group reported being told about study risks (p-value <0.001). Of the 165 married women, 19% reported asking permission from their husbands to enroll in the breast cancer study; no one sought permission from local elders. In-depth interviews highlight the use of persuasion and negotiation between a wife and her husband regarding study participation.

Conclusions: The global expansion of genetic and genomic research highlights our need to understand informed consent practices for studies in ethnically diverse cultural environments such as Africa. Quantitative and qualitative empirical investigations of the informed consent process for genetic and genomic research will further our knowledge of complex issues associated with communication of information, comprehension, decisional authority and voluntary participation. In the future, the development and testing of innovative strategies to promote voluntary participation and comprehension of the goals of genomic research will contribute to our understanding of strategies that enhance the consent process.
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http://dx.doi.org/10.1186/1472-6939-15-38DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4032563PMC
May 2014

Next-generation disadvantages: identifying potential barriers to integrating genomics into underserved medical settings.

Per Med 2013 Sep;10(7):623-625

Biomedical Ethics Program, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA.

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http://dx.doi.org/10.2217/pme.13.75DOI Listing
September 2013

Gene-environment interactions and health inequalities: views of underserved communities.

J Community Genet 2013 Oct 15;4(4):425-34. Epub 2013 Mar 15.

Department of Bioethics, Center for Genetic Research Ethics and Law (CGREAL), Case Western Reserve University, Cleveland, OH, USA,

This article examines the beliefs and experiences of individuals living in underserved ethnically diverse communities in Cleveland, Ohio, regarding the influence of genetic, social, and environmental factors on health and health inequalities. Using a community-engaged methodological approach, 13 focus groups were conducted with African American, Hispanic, and White individuals residing in the Cleveland area to explore attitudes and beliefs about genetics, genetic research, and health disparities and inequalities. Results of this study highlight the range of meanings that individuals attach to genetic variation, genomic research, and gene-environment interactions, and their implications for addressing health inequalities. The majority of participants in all focus groups reported that social and environmental factors were more important than genetics in contributing to health inequalities. Most participants were unfamiliar with genetic research. These data have implications for how genetic information and research might be applied in conjunction with addressing social determinants of health to improve prevention strategies in underserved communities and ultimately reduce health inequalities.
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http://dx.doi.org/10.1007/s12687-013-0143-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3773320PMC
October 2013

Negotiating decisions during informed consent for pediatric Phase I oncology trials.

J Empir Res Hum Res Ethics 2012 Apr;7(2):51-9

Center for Genetic Research Ethics and Law, Department of Bioethics, School of Medicine, Case Western Reserve University, Cleveland, Ohio, USA.

During informed consent conferences (ICCs) for Phase I trials, oncologists must present complex information while addressing concerns. Research on communication that evolves during ICCs remains largely unexplored. We examined communication during ICCs for pediatric Phase I cancer trials using a stratified random sample from six pediatric cancer centers. A grounded theory approach identified key communication steps and factors influencing the negotiation of decisions for trial participation. Analysis suggests that during ICCs, families, patients, and clinicians exercise choice and control by negotiating micro-decisions in two broad domains: drug logic and logistics, and administration/scheduling. Micro-decisions unfold in a four-step communication process: (1) introduction of an issue; (2) response; (3) negotiation of the issue; and (4) resolution and decision. Negotiation over smaller micro-decisions is prominent in ICCs and merits further study.
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http://dx.doi.org/10.1525/jer.2012.7.2.51DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3472642PMC
April 2012

Integrating common and rare genetic variation in diverse human populations.

Nature 2010 Sep;467(7311):52-8

Broad Institute, 7 Cambridge Center, Cambridge, Massachusetts 02138, USA.

Despite great progress in identifying genetic variants that influence human disease, most inherited risk remains unexplained. A more complete understanding requires genome-wide studies that fully examine less common alleles in populations with a wide range of ancestry. To inform the design and interpretation of such studies, we genotyped 1.6 million common single nucleotide polymorphisms (SNPs) in 1,184 reference individuals from 11 global populations, and sequenced ten 100-kilobase regions in 692 of these individuals. This integrated data set of common and rare alleles, called 'HapMap 3', includes both SNPs and copy number polymorphisms (CNPs). We characterized population-specific differences among low-frequency variants, measured the improvement in imputation accuracy afforded by the larger reference panel, especially in imputing SNPs with a minor allele frequency of
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http://dx.doi.org/10.1038/nature09298DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3173859PMC
September 2010

Tailoring the process of informed consent in genetic and genomic research.

Genome Med 2010 Mar 24;2(3):20. Epub 2010 Mar 24.

Inherited Disease Research Branch, Center for Research on Genomics and Global Health, National Human Genome Research Institute, National Institutes of Health, 12 South Drive, Bethesda, MD 20892-5635, USA.

Genomic science and associated technologies are facilitating an unprecedented rate of discovery of novel insights into the relationship between human genetic variation and health. The willingness of large numbers of individuals from different ethnic and cultural backgrounds to donate biological samples is one of the major factors behind the success of the ongoing genomic revolution. Although current informed consent documents and processes demonstrate a commitment to ensuring that study participants are well informed of the risks and benefits of participating in genomic studies, there continues to be a need to develop effective new approaches for adequately informing participants of the changing complexities of the scientific and ethical issues that arise in the conduct of genomics research. Examples of these complexities in genomic research include more widespread use of whole-genome sequencing technologies, broad sharing of individual-level data, evolving information technology, the growing demand for the return of genetic results to participants, and changing attitudes about privacy and the expansion of genomics studies to global populations representing diverse cultural, linguistic and socio-economic backgrounds. We highlight and briefly discuss the importance of ten core scientific, cultural and social factors that are particularly relevant to tailoring informed consent in genomic research, and we draw attention to the need for the informed consent document and process to be responsive to the evolving nature of genomic research.
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http://dx.doi.org/10.1186/gm141DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2873798PMC
March 2010

Getting the message straight: effects of a brief hepatitis prevention intervention among injection drug users.

Harm Reduct J 2009 Dec 15;6:36. Epub 2009 Dec 15.

Department of Epidemiology and Public Health, Yale University School of Medicine, New Haven, CT, USA.

To redress gaps in injection drug users' (IDUs) knowledge about hepatitis risk and prevention, we developed a brief intervention to be delivered to IDUs at syringe exchange programs (SEPs) in three US cities. Following a month-long campaign in which intervention packets containing novel injection hygiene supplies and written materials were distributed to every client at each visit, intervention effectiveness was evaluated by comparing exposed and unexposed participants' self-reported injection practices. Over one-quarter of the exposed group began using the novel hygiene supplies which included an absorbent pad ("Safety Square") to stanch blood flow post-injection. Compared to those unexposed to the intervention, a smaller but still substantial number of exposed participants continued to inappropriately use alcohol pads post-injection despite exposure to written messages to the contrary (22.8% vs. 30.0%). It should also be noted that for those exposed to the intervention, 8% may have misused Safety Squares as part of pre-injection preparation of their injection site; attention should be paid to providing explicit and accurate instruction on the use of any health promotion materials being distributed. While this study indicates that passive introduction of risk reduction materials in injection drug users through syringe exchange programs can be an economical and relatively simple method of changing behaviors, discussions with SEP clients regarding explicit instructions about injection hygiene and appropriate use of novel risk reduction materials is also needed in order to optimize the potential for adoption of health promotion behaviors. The study results suggest that SEP staff should provide their clients with brief, frequent verbal reminders about the appropriate use when distributing risk reduction materials. Issues related to format and language of written materials are discussed.
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http://dx.doi.org/10.1186/1477-7517-6-36DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2804675PMC
December 2009

Economic evaluation of delivering hepatitis B vaccine to injection drug users.

Am J Prev Med 2008 Jul;35(1):25-32

Department of Epidemiology and Public Health, Yale University School of Medicine, New Haven, Connecticut 06520-8034, USA.

Background: Injection drug users (IDUs) are at high risk of hepatitis B (HBV) infection, and hepatitis B vaccination coverage in IDUs is low. Recent studies demonstrate that syringe exchange programs are effective venues to reach and immunize IDUs. The purpose of this paper was to determine if targeting IDUs for HBV vaccination through syringe exchange programs is economically desirable for the healthcare system and to assess the relative effectiveness of several different vaccination strategies.

Methods: Active IDUs in Chicago IL and Hartford and Bridgeport CT (N=1964) were recruited and screened through local syringe exchange programs, randomized to a standard (0, 1, 6 months) or accelerated (0, 1, 2 months) vaccination schedule, and followed from May 2003 to March 2006. Analyses were conducted in 2007. The vaccination program's costs were balanced against future HBV-associated medical costs. Benefits in terms of prevented acute HBV infections and quality-adjusted life years were estimated based on a Markov model.

Results: HBV vaccination campaigns targeting IDUs through syringe exchange programs are cost-saving. The most cost-saving strategies include giving the first dose to everyone at screening, administering the vaccination under the accelerated schedule (0, 1, 2 months), and obtaining highly discounted vaccine from local health departments.

Conclusions: It is economically inappropriate to offer HBV screening in the absence of vaccination. Existing syringe exchange programs in the U.S. should include HBV vaccination.
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http://dx.doi.org/10.1016/j.amepre.2008.03.028DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2483306PMC
July 2008

Informed consent practices in Nigeria.

Dev World Bioeth 2009 Dec 29;9(3):138-48. Epub 2008 Apr 29.

Department of Surgery, University of Nigeria Teaching Hospital, Enugu, Nigeria.

Most writing on informed consent in Africa highlights different cultural and social attributes that influence informed consent practices, especially in research settings. This review presents a composite picture of informed consent in Nigeria using empirical studies and legal and regulatory prescriptions, as well as clinical experience. It shows that Nigeria, like most other nations in Africa, is a mixture of sociocultural entities, and, notwithstanding the multitude of factors affecting it, informed consent is evolving along a purely Western model. Empirical studies show that 70-95% of Nigerian patients report giving consent for their surgical treatments. Regulatory prescriptions and adjudicated cases in Nigeria follow the Western model of informed consent. However, adversarial legal proceedings, for a multiplicity of reasons, do not play significant roles in enforcing good medical practice in Nigeria. Gender prejudices are evident, but not a norm. Individual autonomy is recognized even when decisions are made within the family. Consent practices are influenced by the level of education, extended family system, urbanization, religious practices, and health care financing options available. All limitations notwithstanding, consent discussions improved with increasing level of education of the patients, suggesting that improved physician's knowledge and increasing awareness and education of patients can override other influences. Nigerian medical schools should restructure their teaching of medical ethics to improve the knowledge and practices of physicians. More research is needed on the preferences of the Nigerian people regarding informed consent so as to adequately train physicians and positively influence physicians' behaviors.
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http://dx.doi.org/10.1111/j.1471-8847.2008.00234.xDOI Listing
December 2009

"Cultural competence" and informed consent in international health research.

Camb Q Healthc Ethics 2008 ;17(2):206-15

Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.

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http://dx.doi.org/10.1017/S0963180108080237DOI Listing
July 2008

Genome-wide detection and characterization of positive selection in human populations.

Nature 2007 Oct;449(7164):913-8

Broad Institute of MIT and Harvard, Cambridge, Massachusetts 02139, USA.

With the advent of dense maps of human genetic variation, it is now possible to detect positive natural selection across the human genome. Here we report an analysis of over 3 million polymorphisms from the International HapMap Project Phase 2 (HapMap2). We used 'long-range haplotype' methods, which were developed to identify alleles segregating in a population that have undergone recent selection, and we also developed new methods that are based on cross-population comparisons to discover alleles that have swept to near-fixation within a population. The analysis reveals more than 300 strong candidate regions. Focusing on the strongest 22 regions, we develop a heuristic for scrutinizing these regions to identify candidate targets of selection. In a complementary analysis, we identify 26 non-synonymous, coding, single nucleotide polymorphisms showing regional evidence of positive selection. Examination of these candidates highlights three cases in which two genes in a common biological process have apparently undergone positive selection in the same population:LARGE and DMD, both related to infection by the Lassa virus, in West Africa;SLC24A5 and SLC45A2, both involved in skin pigmentation, in Europe; and EDAR and EDA2R, both involved in development of hair follicles, in Asia.
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http://dx.doi.org/10.1038/nature06250DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687721PMC
October 2007

A second generation human haplotype map of over 3.1 million SNPs.

Nature 2007 Oct;449(7164):851-61

The Scripps Research Institute, 10550 North Torrey Pines Road MEM275, La Jolla, California 92037, USA.

We describe the Phase II HapMap, which characterizes over 3.1 million human single nucleotide polymorphisms (SNPs) genotyped in 270 individuals from four geographically diverse populations and includes 25-35% of common SNP variation in the populations surveyed. The map is estimated to capture untyped common variation with an average maximum r2 of between 0.9 and 0.96 depending on population. We demonstrate that the current generation of commercial genome-wide genotyping products captures common Phase II SNPs with an average maximum r2 of up to 0.8 in African and up to 0.95 in non-African populations, and that potential gains in power in association studies can be obtained through imputation. These data also reveal novel aspects of the structure of linkage disequilibrium. We show that 10-30% of pairs of individuals within a population share at least one region of extended genetic identity arising from recent ancestry and that up to 1% of all common variants are untaggable, primarily because they lie within recombination hotspots. We show that recombination rates vary systematically around genes and between genes of different function. Finally, we demonstrate increased differentiation at non-synonymous, compared to synonymous, SNPs, resulting from systematic differences in the strength or efficacy of natural selection between populations.
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http://dx.doi.org/10.1038/nature06258DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2689609PMC
October 2007

Voluntary participation and informed consent to international genetic research.

Am J Public Health 2006 Nov 3;96(11):1989-95. Epub 2006 Oct 3.

Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio 44106-4976, USA.

Objectives: We compared voluntary participation and comprehension of informed consent among individuals of African ancestry enrolled in similarly designed genetic studies of hypertension in the United States and Nigeria.

Methods: Survey questionnaires were used to evaluate factors associated with voluntariness (the number of people volunteering) and understanding of the study's genetic purpose. A total of 655 individuals (United States: 348; Nigeria: 307) were interviewed after participation in the genetic studies.

Results: Most US respondents (99%), compared with 72% of Nigerian respondents, reported being told the study purpose. Fewer than half of the respondents at both sites reported that the study purpose was to learn about genetic inheritance of hypertension. Most respondents indicated that their participation was voluntary. In the United States, 97% reported that they could withdraw, compared with 67% in Nigeria. In Nigeria, nearly half the married women reported asking permission from husbands to enroll in the hypertension study; no respondents sought permission from local elders to participate in the study.

Conclusions: Our findings highlight the need for more effective approaches and interventions to improve comprehension of consent for genetic research among ethnically and linguistically diverse populations in all settings.
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http://dx.doi.org/10.2105/AJPH.2005.076232DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1751828PMC
November 2006

Protecting communities in biomedical research.

Am J Bioeth 2006 May-Jun;6(3):28-30; discussion W46-8

School of Medicine, Case Western Reserve University.

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http://dx.doi.org/10.1080/15265160600685770DOI Listing
July 2006

Informed consent in international health research.

J Empir Res Hum Res Ethics 2006 Mar;1(1):25-42

Department of Bioethics, School of Medicine, Case Western Reserve University.

Informed consent is universally recognized as a central component of ethical conduct in scientific research. Investigators working with diverse populations throughout the world face myriad challenges. The application of standards for informed consent can be daunting for researchers when they face the pragmatic constraints of the field and the reality of cultural beliefs about consent that may be in direct conflict with regulatory requirements. This paper explores cultural and social factors underlying informed consent for health research with diverse populations in international settings. Sociocultural influences on comprehension of information, perceptions of risk, and beliefs regarding decisional authority are reviewed. The implications of power inequities between study sponsors, researchers and participants are also considered. Issues associated with the development and preparation of consent forms, including translation and documentation are highlighted. Recommendations for good practices are outlined and future directions for research are explored.
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http://dx.doi.org/10.1525/jer.2006.1.1.25DOI Listing
March 2006

Human rights, cultural pluralism, and international health research.

Theor Med Bioeth 2005 ;26(6):529-57

Department of Bioethics, School of Medicine, Case Western Reserve University, Cleveland, OH, 44106, USA.

In the field of bioethics, scholars have begun to consider carefully the impact of structural issues on global population health, including socioeconomic and political factors influencing the disproportionate burden of disease throughout the world. Human rights and social justice are key considerations for both population health and biomedical research. In this paper, I will briefly explore approaches to human rights in bioethics and review guidelines for ethical conduct in international health research, focusing specifically on health research conducted in resource-poor settings. I will demonstrate the potential for addressing human rights considerations in international health research with special attention to the importance of collaborative partnerships, capacity building, and respect for cultural traditions. Strengthening professional knowledge about international research ethics increases awareness of ethical concerns associated with study design and informed consent among researchers working in resource-poor settings. But this is not enough. Technological and financial resources are also necessary to build capacity for local communities to ensure that research results are integrated into existing health systems. Problematic issues surrounding the application of ethical guidelines in resource-poor settings are embedded in social history, cultural context, and the global political economy. Resolving the moral complexities requires a commitment to engaged dialogue and action among investigators, funding agencies, policy makers, governmental institutions, and private industry.
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http://dx.doi.org/10.1007/s11017-005-2199-5DOI Listing
March 2006

The individual and the community in international genetic research.

J Clin Ethics 2004 ;15(1):76-86

Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.

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September 2004

Hepatitis-associated knowledge is low and risks are high among HIV-aware injection drug users in three US cities.

Addiction 2002 Oct;97(10):1277-87

Department of Epidemiology and Public Health, Yale University School of Medicine, New Haven, CT.

Aims: Injection drug use is a major risk factor for HIV and hepatitis infections. Whereas programs to prevent new infections have focused on HIV, they have generally neglected hepatitis B and C. This study was designed to examine the interrelationships among HIV and hepatitis knowledge, risky drug preparation and injection practices, and participation in syringe exchange programs (SEPs).

Design: Surveys of injection drug users (IDUs) collected data on socio-demographics, medical history, drug use and injection practices, and HIV- and hepatitis-related knowledge.

Setting: Inner-city US neighborhoods in Chicago, IL, Hartford, CT and Oakland, CA.

Participants: The study population was a convenience sample of 493 IDUs recruited using street outreach and snowball sampling strategies.

Measurements: HIV and hepatitis knowledge, injection-related risks for virus transmission, associations between the two, and with SEP use.

Findings: HIV knowledge was significantly higher than hepatitis knowledge among SEP customers and non-customers alike. Elevated hepatitis knowledge was associated with a history of substance abuse treatment, hepatitis infection, hepatitis B vaccination and injection practices that reduced contact with contaminated blood or water but not with SEP use. SEP customers were consistently less likely to engage in risk behaviors, with the notable exception of safely staunching blood postinjection.

Conclusion: Increased hepatitis awareness among IDUs is necessary for reducing hepatitis transmissions. Although SEPs continue to effectively disseminate HIV prevention messages-as evidenced by lowered risk behaviors among their customers-they must do more to prevent hepatitis transmissions.
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http://dx.doi.org/10.1046/j.1360-0443.2002.t01-1-00211.xDOI Listing
October 2002

Strategies for culturally effective end-of-life care.

Ann Intern Med 2002 May;136(9):673-9

Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, CA 94304, USA.

As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.
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http://dx.doi.org/10.7326/0003-4819-136-9-200205070-00010DOI Listing
May 2002

Introduction: organ transplantation -- defining the boundaries of personhood, equity and community.

Theor Med 1996 Mar;17(1):v-

The contributors to this issue address a range of moral problems associated with organ transplantation. Although each paper takes on a different challenge, they share an underlying concern with the reconfiguration of personhood and community brought about by organ transplant therapies. Taken together, these six essays provide a robust critique of the medical, social, political and economic factors that drive the practice of human organ replacement. In the first essay, Marshall, Thomasma, and Daar examine marketing strategies that have been proposed for increasing the number of organs available for transplantation.... Sharon Systma explores the use of anencephalic infants as organ donors.... Lawrence Schneiderman and Nancy Jecker consider social justice issues associated with selection criteria for organ transplantation.... Rachel Majeske examines another dimension of transplantation selection criteria. Majeske calls attention to the values and norms that influence the selection process in both explicit and more subtle ways.... Erich Loewy explores the notion that organ transplantation is an appropriate use of communal medical resources.... The final essay by Tom Koch examines normative criteria to insure efficient and equitable allocation of organs to potential recipients.
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http://dx.doi.org/10.1007/BF00489736DOI Listing
March 1996

Research ethics in applied anthropology.

IRB 1992 Nov-Dec;14(6):1-5

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May 1993

Anthropology and bioethics.

Med Anthropol Q 1992 Mar;6(1):49-73

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http://dx.doi.org/10.1525/maq.1992.6.1.02a00040DOI Listing
March 1992

Ethics in human reproduction research in the Muslim world.

IRB 1992 Mar-Apr;14(2)

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October 1992
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