Privacy and Progress in Whole Genome Sequencing

Privacy and Progress in Whole Genome Sequencing, Presidential Commission for the Study of Bioethical Issues, 2012

154 Pages Posted: 29 Jun 2014

Date Written: October 11, 2012

Abstract

In this report, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) assessed how to reconcile expected societal benefit from advances in whole genome sequencing with privacy risks that fall to the individuals who share their genomic data.

The Bioethics Commission held four public meetings on this topic and heard from speakers addressing a wide range of issues related to this report. The Commission also queried 18 federal agencies about their current frameworks for safeguarding genetic and whole genome sequence data and information. In addition, the Commission solicited public comment and received numerous informative responses.

Whole genome sequencing promises to provide the means to better understand health and disease processes and to tailor personalized therapies that could bring about cures and otherwise enhance quality of life for individuals and society broadly. As the cost to sequence an entire human genome continues to fall, the potential exists for rapid advances in wellness and health care resulting from this new technology. Essential to achieving those advances is the need to share, compare, and pool data. However, as the ease with which the acquisition and sharing of whole genome sequencing information increases, so do questions and concerns about privacy and security. The Bioethics Commission offers 12 recommendations to improve current practices and to help ensure privacy and security as the field of genomics advances.

The Bioethics Commission recommends strong baseline protections for whole genome sequence data to protect individual privacy and data security while also leaving ample room for data sharing opportunities that propel scientific and medical progress. Other recommendations include that clinicians and researchers use robust and understandable informed consent procedures and engage in productive exchanges of those collections of genomic information that are based on such consent procedures. The Commission recommends that the federal government facilitate broad public access to the important clinical advances that result from whole genome sequencing. The Commission also urges federal and state governments to ensure a consistent floor of individual privacy protections covering whole genome sequence data across state lines, regardless of how the data were obtained.

Keywords: bioethics, genetics, genomics, whole genome sequencing, genetic privacy, biobanking, genetic research, genetic data, genetic information

Suggested Citation

for the Study of Bioethical Issues, Presidential Commission, Privacy and Progress in Whole Genome Sequencing (October 11, 2012). Privacy and Progress in Whole Genome Sequencing, Presidential Commission for the Study of Bioethical Issues, 2012, Available at SSRN: https://ssrn.com/abstract=2459932

Presidential Commission For the Study of Bioethical Issues (Contact Author)

Presidential Commission for the Study of Bioethical Issues ( email )

1425 New York Avenue, NW
Suite C-100
Washington, DC 20005
United States

HOME PAGE: http://www.bioethics.gov

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