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 …

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 …

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 …

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 …

[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 …

Attitudes of parents toward the return of targeted and incidental genomic research findings in children

CV Fernandez, E Bouffet, D Malkin, N Jabado… - Genetics in …, 2014 - nature.com
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 …

Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era

D Chalmers, D Nicol, J Kaye, J Bell, AV Campbell… - BMC medical …, 2016 - Springer
Biobanks have been heralded as essential tools for translating biomedical research into
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 …

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 …

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 …