Genetic research with stored biological materials: ethics and practice.
Year: 2010
Type: article
Abstract: any biomedical advances?particularly I / advances involving genetics?have only JL JL been achieved through research with human biological materials.1 Such research has been critical in identifying genes and gene changes associated with disease or disease susceptibility,2 determining causes of mortality and morbidity,3 deriving cell lines for further research,4 and developing new approaches to therapy such as pharmacogenetics.5 Complete mapping of the human genome and improved ability to conduct genetic and genomic analyses expand enormously the potential value of biological materials for medicine and science.6 Although scientifically rewarding, genetic research with stored biological materials raises several ethi cal concerns. DNA obtained from stored biological material is stable and specific to an individual; further more, genetic/genomic test results have become easier to link to specific individuals, even among pooled DNA.7 Genetic testing may reveal information about individuals'?and, in some cases, their family mem bers'?present and future susceptibility to illness.8 Moreover, individuals may not even be aware that their biological materials were collected and stored for future research.9 Even when individuals gave explicit consent for research with their biological materials, concerns have been raised about the validity of such consent for use of the materials in future, unspecified studies.10 Finally, whether and under what conditions research results should be disclosed to research participants raises concerns about potential psychological harm to individuals, as well as to groups, if findings create or reinforce negative stereotypes about socially identifiable groups, and about the clinical validity and utility of genetic information obtained in the research context.11
Source: PubMed
Institution: Georgia State University
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
Funder: National Institutes of Health
OpenAlex ID: W71361974