Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement …
A Beaton, M Hudson, M Milne, RV Port, K Russell… - Genetics in …, 2017 - nature.com
Purpose: He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate
best practice in addressing Māori ethical concerns by guiding culturally informed policy and …
best practice in addressing Māori ethical concerns by guiding culturally informed policy and …
Researchers' views on return of incidental genomic research results: qualitative and quantitative findings
R Klitzman, PS Appelbaum, A Fyer, J Martinez… - Genetics in …, 2013 - nature.com
Purpose: Comprehensive genomic analysis including exome and genome sequencing is
increasingly being utilized in research studies, leading to the generation of incidental …
increasingly being utilized in research studies, leading to the generation of incidental …
Ethical legal and social issues of biobanking: past, present, and future
MJ Bledsoe - Biopreservation and biobanking, 2017 - liebertpub.com
The past 15 years has seen considerable changes in the research environment. These
changes include the development of new sophisticated genetic and genomic technologies …
changes include the development of new sophisticated genetic and genomic technologies …
Biobanks and personalized medicine
JE Olson, SJ Bielinski, E Ryu, EM Winkler… - Clinical …, 2014 - Wiley Online Library
We provide a mini‐review of how biobanks can support clinical genetics in the era of
personalized medicine. We discuss types of biobanks, including disease specific and …
personalized medicine. We discuss types of biobanks, including disease specific and …
[HTML][HTML] The legal risks of returning results of genomics research
EW Clayton, AL McGuire - Genetics in medicine, 2012 - Elsevier
Published guidelines suggest that research results and incidental findings should be offered
to study participants under some circumstances. Although some have argued against the …
to study participants under some circumstances. Although some have argued against the …
Attitudes of parents toward the return of targeted and incidental genomic research findings in children
Purpose: We describe parental attitudes toward the return of targeted and incidental
genomic research results in the setting of high-risk pediatric cancer and inherited childhood …
genomic research results in the setting of high-risk pediatric cancer and inherited childhood …
Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era
Biobanks have been heralded as essential tools for translating biomedical research into
practice, driving precision medicine to improve pathways for global healthcare treatment and …
practice, driving precision medicine to improve pathways for global healthcare treatment and …
Models of consent to return of incidental findings in genomic research
PS Appelbaum, E Parens, CR Waldman… - Hastings Center …, 2014 - Wiley Online Library
Genomic research—including whole genome sequencing and whole exome sequencing—
has a growing presence in contemporary biomedical investigation. The capacity of …
has a growing presence in contemporary biomedical investigation. The capacity of …
Managing the ethical challenges of next-generation sequencing in genomic medicine
AJ Clarke - British Medical Bulletin, 2014 - academic.oup.com
Introduction Next-generation sequencing (NGS) is transforming the conduct of genetic
research and diagnostic investigation. This creates new challenges as it generates …
research and diagnostic investigation. This creates new challenges as it generates …
Dealing with the unexpected: consumer responses to direct-access BRCA mutation testing
U Francke, C Dijamco, AK Kiefer, N Eriksson, B Moiseff… - PeerJ, 2013 - peerj.com
Background. Inherited BRCA gene mutations convey a high risk for breast and ovarian
cancer, but current guidelines limit BRCA mutation testing to women with early-onset cancer …
cancer, but current guidelines limit BRCA mutation testing to women with early-onset cancer …