Journal of Continuing Education in the Health Professions



HOME \| SITE MAP \| CONTACT US
Your Location: Home > Volume 21, Issue 4

CURRENT ISSUE BACK ISSUES SUBSCRIBE ADVERTISE ABOUT JCEHP FOR AUTHORS JCEHP AWARD SEARCH		Volume 21 (4) Volume 21, Issue 4, Fall 2001 J Contin Educ Health Prof 2001; 21(4):256-264 ISSUES IN RESEARCH A consumer perspective on informed consent and third-party issues Terry SF Terry PF A b s t r a c t Our two children were diagnosed with a rare genetic disorder, which led us to establish a research foundation. This led to in-depth consideration of issues surrounding informed consent from a consumer perspective. Third-party issues arose as central to the formulation of ethical policy in the establishment of a blood and tissue bank and an epidemiologic study. We suggest that a number of myths--privacy is possible, samples can be stripped of identifiers, humans are subjects, voluntary informed consent is attainable, genetics is about the individual only, genetic information is different than other medical information, research is altruistic, the public will learn truths about genetic research via media, and research is culturally competent--make it difficult to resolve the issues intrinsic to informed consent. A number of important elements could make policy decisions less complicated. These include conducting culturally competent research; conveying noncoercive hope, not hype; contacting the voluntary informant only; asking the informant to extend contact to other family members; requiring a comprehensive informed consent process for all contacted; and engaging in state-of-the-art data protections. There is a need for a "Genomic Hippocratic Oath", creating an ethical basis for research similar to the one vowed by health care professionals. Establishing ethical policies as a result of the collaboration of policy makers, researchers, and consumers will allow research to progress ethically at a rapid rate. If regulations are oppressive, they will thwart research; if they are too lenient, participants will not receive protections needed to participate safely. Lessons for Practice Understanding myths about research and addressing their underlying misconceptions will make it easier to discern ethical solutions to questions involving third parties and guidelines for informed consent. In the course of establishing guidelines, if regulations on research are oppressive, they will thwart research; if they are too lenient, participants will not receive the protections needed to participate safely. It is critical that society formulates ethical boundaries and frameworks, enforcing them with appropriate policies, before damage is done to individuals who, in some sense, give up a part of themselves for others. Research may benefit from researchers taking a "Genomic Hippocratic Oath", promising to do no harm in the same manner as clinicians. MeSH Terms: Child; Confidentiality; DNA Ethics; Genetic Privacy; Human Experimentation; Informed Consent; Patient Advocacy; Policy Making; Research
HOME \| SITE MAP \| CONTACT US Copyright © 1996-2010 JCEHP.com & The Journal of Continuing Education in the Health Professions All rights reserved Disclaimer · About This Site · Web Editor · Make JCEHP Your Homepage Information on this site was last updated: 3 September 2010