SymposiumEthical Challenges in Community-Based Research
Section snippets
Assumptions Underlying Informed Consent
In biomedical research, the ethical principle of respect for persons refers to the expression of self-determination and freedom of choice by individuals. In Western industrialized nations such as the United States, the importance of personal autonomy is emphasized. Requirements for informed consent in human subject research appeal to this principle. Informed consent is an interactive process between investigators and potential subjects to insure voluntary research participation based on a clear
Respect for Communities in Biomedical Research
In population-based research, demonstrating respect for individuals through informed consent and showing respect for the broader community are important for investigators. When scientists move from the individual to the community level, different issues come into play. The potential exists for research results to be misapplied in the development of health policy or misinterpreted by the public media, thus resulting in the promotion of racist or discriminatory practices. Population-based studies
Strategies for Safeguarding Community Interests
Investigators conducting population-based research may facilitate effective working relationships with the community, if mechanisms that build and sustain trust are well established during the development and implementation of research protocols. The four strategies are: (1) community participation in research development; (2) informing the community about the study; (3) hiring community members on the study team; and (4) providing feedback to the community regarding study results.
Hiring Community Members on Study Teams
Whenever possible, population-based researchers should include community members on the study team. Members of the ethnic population being studied should be involved in the design and implementation of the research and the analysis and interpretation of results, particularly in ethnically diverse communities that have experienced discrimination or stigmatization. Again, this instills trust and collaboration, instead of fostering an image of researchers as biomedical “colonialists” who extract
Providing Feedback to the Community
Communities deserve full disclosure of research findings. Ideally, feedback to individuals and communities is ongoing. Depending upon the nature of the study and the types of data being collected, participants and communities involved may be provided with feedback that occurs immediately, at an intermediate stage, and at a later stage, when a more comprehensive understanding of the study findings is available. For example, individuals participating in a community study of hypertension might be
Conclusion
Community-based research contributes significantly to our understanding of the physiological and environmental factors that affect the incidence and prevalence of diseases within populations. Technological advances, particularly in genomics, will facilitate the development of health-related initiatives that benefit individuals and communities. Although the future of population-based research holds great promise, investigators will continue to face ethical challenges as they interact with
References (40)
- et al.
Ethical issues of genetic testing and their implications in epidemiologic studies
Ann Epidemiol
(1997) Ethics are local: engaging cross-cultural variation in the ethics for clinical research
Soc Sci Med
(1992)- et al.
Determinism and mass-media portrayals of genetics
Am J Hum Genet
(1998) Ethics, epidemiology and the thrifty gene: biological determinism as a health hazard
Soc Sci Med
(1998)The Belmont Report: ethical principles and guidelines for the protection of human subjects of research
(1978)International ethical guidelines for biomedical research involving human subjects
(1993)- et al.
A history and theory of informed consent
(1986) The patient as partner: a theory of human-experimentation ethics
(1987)
The ethics of biomedical research: an international perspective
Research on human subjects: ethics, law and social policy
Obligations and responsibilities of epidemiologists to research subjects
J Clin Epidemiol
Issues in preparing ethical guidelines for epidemiological studies
Law Med Health Care
Anthropology and bioethics: perspectives on culture, medicine and morality
Ethical issues in immigrant health care and clinical research
Trust the fragile foundation of contemporary biomedical research
Hastings Cent Rep
It just ain’t fair: the ethics of health care for African Americans
The challenge of minority recruitment for clinical trials
JAMA
Are research participants truly informed? Readability of informed consent forms used in research
Ethics Behav
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Ethical Considerations When Preparing a Clinical Research Protocol
2020, Ethical Considerations When Preparing a Clinical Research ProtocolOn using ethical principles of community-engaged research in translational science
2016, Translational ResearchCitation Excerpt :Two of 5 principles that apply to community at large and 3 of 4 principles that apply to research team members were deemed important by both panels and the combined sample. Participants agreed that ethical translational research projects may be those where relevant stakeholders are engaged in the process of conducting research, and especially in the interpretation and dissemination of study findings21,26; where trust among research team members is being built on an ongoing basis11,28; where culturally consonant17,18 and scientifically valid30 projects are prioritized; and where community at large is informed about study risks and benefits.24,25 The expansion of the ethical focus of research is consistent with the growing importance of stakeholder engagement in the conduct of research and illustrates a systematic approach to incorporating community and patient perspectives into scientific practice, such as the one endorsed by PCORI.48
Approaching the community about screening children for a multicentre malaria vaccine trial
2012, International HealthPartnerships in pandemics: tracing power relations in community engaged scholarship in food systems during COVID-19
2023, Agriculture and Human Values
This work was supported by the National Institutes of Health, National Human Genome Research Institute study, “Informed Consent and Concepts of Race in Genetic Research“ (Grant RO1-HG02207-01).