Harvard Personal Genome Project: lessons from participatory public research

MP Ball, JR Bobe, MF Chou, T Clegg, PW Estep… - Genome medicine, 2014 - Springer
Background Since its initiation in 2005, the Harvard Personal Genome Project has enrolled
thousands of volunteers interested in publicly sharing their genome, health and trait data …

Personal genome sequencing: current approaches and challenges

M Snyder, J Du, M Gerstein - Genes & development, 2010 - genesdev.cshlp.org
The revolution in DNA sequencing technologies has now made it feasible to determine the
genome sequences of many individuals; ie,“personal genomes.” Genome sequences of …

Motivators for participation in a whole-genome sequencing study: implications for translational genomics research

FM Facio, S Brooks, J Loewenstein, S Green… - European Journal of …, 2011 - nature.com
The promise of personalized medicine depends on the ability to integrate genetic
sequencing information into disease risk assessment for individuals. As genomic …

Ethical issues in human genome research

TH Murray - The FASEB journal, 1991 - Wiley Online Library
In addition to provocative questions about science policy, research on the human genome
will generate important ethical questions in at least three categories. First, the possibility of …

Ethical and legal implications of whole genome and whole exome sequencing in African populations

GEB Wright, PGJ Koornhof, AA Adeyemo, N Tiffin - BMC Medical Ethics, 2013 - Springer
Background Rapid advances in high throughput genomic technologies and next generation
sequencing are making medical genomic research more readily accessible and affordable …

A part of the human genome sequence

JC Venter - Science, 2003 - science.org
The sequencing and subsequent publication of the human genome (1, 2) captured the
public imagination and marked the beginning of a new era in biological research. An …

Disclosure of individual genetic data to research participants: the debate reconsidered

AL Bredenoord, HY Kroes, E Cuppen, M Parker… - Trends in Genetics, 2011 - cell.com
Despite extensive debate, there is no consensus on whether individual genetic data should
be disclosed to research participants. The emergence of whole-genome sequencing …

Opening Pandora's box?: ethical issues in prenatal whole genome and exome sequencing

R Horn, M Parker - Prenatal diagnosis, 2018 - Wiley Online Library
Objective The development of genomic approaches to prenatal testing such as whole
genome and exome sequencing offers the potential for a better understanding of prenatal …

Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time

JS Berg, MJ Khoury, JP Evans - Genetics in medicine, 2011 - nature.com
Technological advances often outpace our ability to effec-tively use them, a situation that
certainly could pertain to modern genomics. Breathtaking advances in genetic sequencing …

Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and process

C Ayuso, JM Millán, M Mancheno… - European Journal of …, 2013 - nature.com
The development of new massive sequencing techniques has now made it possible to
significantly reduce the time and costs of whole-genome sequencing (WGS). Although WGS …