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Biobank for Translational Medicine: Standard Operating Procedures for Optimal Sample Management

Biobank for Translational Medicine: Standard Operating Procedures for Optimal Sample Management

Published on: November 30, 2022

Public perspectives on informed consent for biobanking.

Juli Murphy¹, Joan Scott, David Kaufman

¹Genetics and Public Policy Center, Johns Hopkins University, 1717 Massachusetts Ave, NW, Suite 530, Washington, DC 20036, USA. jmurph46@jhu.edu

American Journal of Public Health

|October 17, 2009

Summary

Public input on a proposed national biobank shows that individuals desire ongoing control over their genetic information and biological samples. This research highlights the need for participant autonomy in genomic research initiatives.

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Creation and Maintenance of a Living Biobank - How We Do It

Creation and Maintenance of a Living Biobank - How We Do It

Published on: April 10, 2021

Area of Science:

Genomic Medicine
Public Health Policy
Bioethics

Background:

Federal agencies are considering a national biobank to investigate gene-environment interactions in health.
Understanding public attitudes is crucial for the ethical implementation of such initiatives.

Purpose of the Study:

To assess public attitudes toward a proposed national biobank.
To identify public preferences regarding informed consent for biobanking.

Main Methods:

Conducted 16 focus groups to explore public opinions.
Validated focus group themes through a large-scale survey of 4659 individuals.

Main Results:

Participants expressed a strong desire for continuous control over their samples and data.
Ongoing choice and control were key themes identified in public attitudes toward biobanking.

Conclusions:

Public engagement reveals a need for flexible and participant-centered consent models in genomic biobanks.
Future biobank development should prioritize individual autonomy and ongoing decision-making power for participants.