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The use of sequencing technologies has greatly expanded in both research and clinical settings. The generation of voluminous datasets has raised several issues regarding data sharing and access. Current regulations require clinical laboratories and some research laboratories to provide access to test data, including sequencing data, directly to patients upon request. There is some controversy over whether this access right may be somewhat broader, encompassing research data as well-a question beyond the scope of this article. It is clear that in the research setting, deposition of sequencing data into public or private databases often occurs, although little information exists about the return of data files to research participants (in contrast to the extensive deliberations regarding return of results). Thus, further consideration of the issue of access to data files is warranted as well as more effort to understand both patients' and research participants' use of the data.
This article was published in the following journal.
Name: Genetic testing and molecular biomarkers
Background: Advances in viral sequence analysis make it possible to track the spread of infectious pathogens, such as HIV, within a population. When used to study HIV, these analyses (i.e., molecular ...
This paper discusses the need to focus on the dignity of human participants as a legal and ethical basis for providing post-trial access to healthcare. Debate about post-trial benefits has mostly focu...
International guidelines for the conduct of research with human participants, such as those put forth by the Council for International Organizations of Medical Sciences (CIOMS, 2002), recommend that r...
The Taiwan Biobank (TWB) is a biomedical research database of biopsy data from 200,000 participants. Access to this database has been granted to research communities taking part in the development of ...
For research to be ethically acceptable, the potential benefits must justify any risks involved for participants. Dissemination of research findings through publication is one way of creating benefit,...
The objective of this proposed 18-month exploratory research study is to help pregnant women weigh risks and benefits in a childbirth decision using the Preferences-Assessment Computer Mod...
This pilot study will explore the usefulness of a series of questions asking about views of research from the perspective of minority and economically disadvantaged research participants. ...
The primary objective of the planned Nutrition Research Cohort (NRC) n250 study is to develop and evaluate the open access Nutrition Researcher Cohort for gathering personal health data f...
Background: Hyperthyroidism is a common disease. It is very common for women. It is usually treated with Radioiodine (I-131). Some people think that this might cause cancer, even many yea...
The overall goal of the proposed research is to evaluate the uptake of testing and longitudinal risks and benefits of multiplex testing for cancer susceptibility in BRCA1/2 negative patien...
Research that derives data from observation, interviews, or verbal interactions and focuses on the meanings and interpretations of the participants (From Holloway and Wheeler, "Ethical issues in qualitative nursing research," Nursing Ethics, 1995 Sep; 2(3): 223-232).
The condition in which reasonable knowledge regarding risks, benefits, or the future is not available.
Descriptions of specific amino acid, carbohydrate, or nucleotide sequences which have appeared in the published literature and/or are deposited in and maintained by databanks such as GENBANK, European Molecular Biology Laboratory (EMBL), National Biomedical Research Foundation (NBRF), or other sequence repositories.
Protective measures against unauthorized access to or interference with computer operating systems, telecommunications, or data structures, especially the modification, deletion, destruction, or release of data in computers. It includes methods of forestalling interference by computer viruses or so-called computer hackers aiming to compromise stored data.
Management activities required to maintain research data to ensure that they are fit for contemporary use and available for discovery and reuse.
DNA sequencing is the process of determining the precise order of nucleotides within a DNA molecule. During DNA sequencing, the bases of a small fragment of DNA are sequentially identified from signals emitted as each fragment is re-synthesized from a ...