Archived specimens: a platform for discussion

DC Wertz - Public Health Genomics, 2000 - karger.com
To facilitate discussion, this paper describes various types of collections of specimens, their
uses in research, types of identifiers, requirements for informed consent, third-party access …

NCI think tank concerning the identifiability of biospecimens and “omic” data

CJ Weil, LE Mechanic, T Green, C Kinsinger… - Genetics in …, 2013 - nature.com
Purpose: On 11 and 12 June 2012, the National Cancer Institute hosted a think tank
concerning the identifiability of biospecimens and “omic” data in order to explore challenges …

Ethical issues in molecular pathology: Paradigms in flux

ME Sobel - Archives of pathology & laboratory medicine, 1999 - meridian.allenpress.com
Recent advances in molecular pathology and molecular genetics have created new
concerns about the use of human biologic materials in research. Since researchers now …

[PDF][PDF] Native Hawaiian preferences for informed consent and disclosure of results from research using stored biological specimens

M Fong, KL Braun, RM Chang - Pac Health Dialog, 2004 - pacifichealthdialog.org.fj
Increasingly, genetic and biomedical researchers are developing protocols to reexamine
human tissue specimens that were obtained and stored during clinical care or previous …

[HTML][HTML] Returning individual research results to vulnerable individuals

CL Kolarcik, MJ Bledsoe, TJ O'Leary - The American Journal of Pathology, 2022 - Elsevier
Although issues associated with returning individual research results to study participants
have been well explored, these issues have been less thoroughly investigated in vulnerable …

Secondary uses and the governance of de-identified data: lessons from the human genome diversity panel

SM Fullerton, SSJ Lee - BMC medical ethics, 2011 - Springer
Background Recent changes to regulatory guidance in the US and Europe have
complicated oversight of secondary research by rendering most uses of de-identified data …

Views of cohort study participants about returning research results in the context of precision medicine

T Hyams, DJ Bowen, C Condit, J Grossman… - Public health …, 2016 - karger.com
Background: The practice of biorepository-based genetics research raises questions related
to what ethical obligations researchers have to their participants. It is important to explore …

[HTML][HTML] Informed consent for the collection of biological samples in household surveys

JR Botkin - Cells and Surveys: Should Biological Measures Be …, 2001 - ncbi.nlm.nih.gov
The National Bioethics Advisory Commission (NBAC) estimates that there are over 282
million human biologic specimens being stored in the United States, and that this number is …

Public perspectives on returning genetics and genomics research results

J O'daniel, SB Haga - Public health genomics, 2011 - karger.com
Background: The debate about returning research results has revealed different
perspectives among researchers, participants and advisory groups with participants …

[PDF][PDF] A model agreement for genetic research in socially identifiable populations

MW Foster, D Bernsten, TH Carter - The American Journal of Human …, 1998 - cell.com
Genetic research increasingly focuses on population-specific human genetic diversity.
However, the naming of a human population in public databases and scientific publications …