Journal of Continuing Education in the Health Professions



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CURRENT ISSUE BACK ISSUES SUBSCRIBE ADVERTISE ABOUT JCEHP FOR AUTHORS JCEHP AWARD SEARCH (Members only) FULL-TEXT		Volume 21 (4) Volume 21, Issue 4, Fall 2001 J Contin Educ Health Prof 2001; 21(4):265-270 ISSUES IN RESEARCH Family consent and the pursuit of better medicines through genetic research Renegar G Rieser P Manasco P A b s t r a c t Rapid changes in the science and technology related to genetic research are challenging scientists, health care providers, ethicists, regulators, patient groups, and the pharmaceutical industry to keep pace with ethically grounded, workable guidelines for both the research and clinical applications of human genetics. We describe the genetic research being conducted by one pharmaceutical company (GlaxoSmithKline) and how the company is addressing the ethical, legal, and social issues surrounding this research; discuss an industry working group's attempt to advance pharmacogenetic research by openly addressing and disseminating information on related ethical, legal, and regulatory issues; identify scientific and ethical differences among various types of genetic research; discuss potential implications of family consent on subject privacy and autonomy, data collection, and study conduct; and suggest points to consider when study sponsors, investigators, and ethics committees evaluate research proposals. Public and expert opinion regarding informed consent in genetic research is evolving as a result of increased education, discussion, and understanding of the relevant issues. Five years ago, there was strong support for anonymity in genetic research as a privacy safeguard. Now, an increasingly popular school of thought advocates against anonymity to preserve an individual's ability to withdraw and, if desired, access research results. It is important to recognize this evolution and address consent issues in a reasoned, practical, and consistent way, including input from patients and their families, health care providers, ethicists, scientists, regulatory bodies, research sponsors, and the lay community. Responsibility for assessing issues related to family consent for research should remain with local investigators, ethics boards, and study sponsors. A "one-size-fits-all" perspective in the form of new regulations, for example, would likely be a disservice to all. Lessons for Practice Different types of "genetic testing" entail consideration of different ethical, legal, and social implications. For example, pharmacogenetic testing is similar to other laboratory tests used to monitor patient responses to medicines and is very different from testing for the presence of genes associated with the occurrence or risk of disease. Evaluating the issue of family consent requires an assessment of competing interests, with the interests of the research participant and family members and the logistics of the research as relevant factors. Scientific rationale, justification of the degree of detail, and safeguards to protect privacy should be considered when collection of family history data is proposed. Public and expert opinion regarding informed consent in genetic research is evolving as a result of increased education and discussion of the relevant issues. It is important to recognize the evolution of public and expert opinion regarding informed consent in genetic research and address issues related to informed consent in a reasoned, practical, and consistent way, including input from patients and their families, health care providers, ethicists, scientists, regulatory bodies, research sponsors, and the lay public. MeSH Terms: Access to Information; Drug Industry; Ethics; Family; Genetic Predisposition to Disease; Genetic Privacy; Genetics, Medical; Informed Consent; Pharmacogenetics; Research
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