[HTML][HTML] Genomics, big data, and broad consent: a new ethics frontier for prevention science
Emerging technologies for analyzing biospecimens have led to advances in understanding
the interacting role of genetics and environment on development and individual responsivity …
the interacting role of genetics and environment on development and individual responsivity …
Informed consent in genome-scale research: what do prospective participants think?
SB Trinidad, SM Fullerton, JM Bares… - AJOB primary …, 2012 - Taylor & Francis
Background: To promote effective genome-scale research, genomic and clinical data for
large population samples must be collected, stored, and shared. Methods: We conducted …
large population samples must be collected, stored, and shared. Methods: We conducted …
[HTML][HTML] Revisiting respect for persons in genomic research
DJH Mathews, L Jamal - Genes, 2014 - mdpi.com
The risks and benefits of research using large databases of personal information are
evolving in an era of ubiquitous, internet-based data exchange. In addition, information …
evolving in an era of ubiquitous, internet-based data exchange. In addition, information …
[HTML][HTML] Human subjects protection and technology in prevention science: selected opportunities and challenges
Internet-connected devices are changing the way people live, work, and relate to one
another. For prevention scientists, technological advances create opportunities to promote …
another. For prevention scientists, technological advances create opportunities to promote …
Informed consent, big data, and the oxymoron of research that is not research
JPA Ioannidis - The American Journal of Bioethics, 2013 - Taylor & Francis
Informed consent has been the cornerstone of conducting ethical research involving
humans. However, it is increasingly argued that consent bias distorts results; that consent is …
humans. However, it is increasingly argued that consent bias distorts results; that consent is …
[HTML][HTML] Tailoring the process of informed consent in genetic and genomic research
CN Rotimi, PA Marshall - Genome Medicine, 2010 - Springer
Genomic science and associated technologies are facilitating an unprecedented rate of
discovery of novel insights into the relationship between human genetic variation and …
discovery of novel insights into the relationship between human genetic variation and …
[HTML][HTML] Thought leader perspectives on benefits and harms in precision medicine research
LM Beskow, CM Hammack, KM Brelsford - PLoS One, 2018 - journals.plos.org
Precision medicine research is underway to identify targeted approaches to improving
health and preventing disease. However, such endeavors raise significant privacy and …
health and preventing disease. However, such endeavors raise significant privacy and …
Thought leader perspectives on participant protections in precision medicine research
CM Hammack, KM Brelsford… - Journal of Law, Medicine & …, 2019 - cambridge.org
Precision medicine research is rapidly taking a lead role in the pursuit of new ways to
improve health and prevent disease, but also presents new challenges for protecting human …
improve health and prevent disease, but also presents new challenges for protecting human …
Adjusting the focus: a public health ethics approach to data research
A Ballantyne - Bioethics, 2019 - Wiley Online Library
This paper contends that a research ethics approach to the regulation of health data
research is unhelpful in the era of population‐level research and big data because it results …
research is unhelpful in the era of population‐level research and big data because it results …
Ethics in prevention science involving genetic testing
CB Fisher, EL Harrington McCarthy - Prevention science, 2013 - Springer
Abstract The Human Genome Project and rapid technological advances in genomics have
begun to enrich prevention science's contributions to understanding the role of genetic …
begun to enrich prevention science's contributions to understanding the role of genetic …