Returning Genetic Research Results: Considerations for Existing No-Return and Future Biobanks
نویسنده
چکیده
A pressing issue for the genetic research enterprise—and an issue that has important implications for biobanks—is whether researchers should share, or “return,” the genetic research results with the individuals whose DNA they studied.1 With some exceptions, researchers typically have not returned genetic research results to the biospecimen donors.2 One reason for a no-return policy is that researchers typically study DNA samples that have been stripped of personal identifiers, making it difficult or impossible to link information about specific samples to their donors.3 Even if individuals can be re-identified, most genetic research results have uncertain clinical significance.4 Nonetheless, some commentators—including prospec-
منابع مشابه
Navigating social and ethical challenges of biobanking for human microbiome research
BACKGROUND Biobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications (ELSI). While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate. DISCUSSION We draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our...
متن کاملReturning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.
Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, ...
متن کاملIllustrative case studies in the return of exome and genome sequencing results
Whole genome and exome sequencing tests are increasingly being ordered in clinical practice, creating a need for research exploring the return of results from these tests. A goal of the Clinical Sequencing and Exploratory Research (CSER) consortium is to gain experience with this process to develop best practice recommendations for offering exome and genome testing and returning results. Geneti...
متن کاملFuture of biobanks – bigger, longer, and more dimensional
Collections and repositories of biological samples that are used for research and medicinal purposes are referred to as biobanks. Biobanks focused on genetic epidemiology are currently dominating the field of biomedical research. This is clearly seen in the research priorities across Europe, where numerous biobanks have been developed and supported (1,2). Even the most superficial overview of t...
متن کاملConsiderations for Returning Research Results to Culturally Diverse Participants and Families of Decedents.
There has been considerable debate on which genomic research results to return to participants and when those results should be returned, but little attention to how those results should be returned, especially to minority and culturally diverse participants. This paper explores the cultural and ethical considerations around returning research results to participants and families of culturally ...
متن کامل