Genomics, big data, and broad consent: a new ethics frontier for prevention science

CB Fisher, DM Layman - Prevention Science, 2018 - Springer
Emerging technologies for analyzing biospecimens have led to advances in understanding
the interacting role of genetics and environment on development and individual responsivity …

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 …

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 …

Human subjects protection and technology in prevention science: selected opportunities and challenges

AR Pisani, PA Wyman, DC Mohr, T Perrino, C Gallo… - Prevention …, 2016 - Springer
Internet-connected devices are changing the way people live, work, and relate to one
another. For prevention scientists, technological advances create opportunities to promote …

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 …

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 …

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 …

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 …

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 …

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 …