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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
27 January 2012 Issue #23


Occupy Science?

A recent blog post from The Scientist suggests that biomedical research can learn from citizen science, which is grounded in relationships with study participants. Advocacy-driven biobanks and organizations that leverage crowdsourcing to create repositories of genomic and health data are key contributors to the citizen scientist movement. One of the great advantages of citizen science is the “two-way connection” between participants and research. The authors suggest that citizen science projects may offer a new social contract that is an appropriate alternative to traditional informed consent. This new contract must be one that is open, participatory, and dependent on the collective energy of the community. The authors suggest that citizens and scientists should not occupy separate worlds, and “by strengthening the role of citizens in science, science too will be strengthened.”

Presidential Commission Releases Ethics Report

The Presidential Commission for the Study of Bioethical Issues recently released a report, Moral Science: Protecting Participants in Human Subjects Research, on federally sponsored research involving people (human subjects). The commission concluded that current rules and regulations provide adequate safeguards to mitigate risk. Additionally, the protections in place today would prevent the research conducted in Guatemala from 1946-1948, where thousands were intentionally exposed to sexually transmitted disease without their consent. The Commission also recommended fourteen changes to current practices that aim to better protect research participants.

Offering Aggregate Results to Participants

A recent article by Laura Beskow, MPH, PhD, and colleagues explores returning aggregate results to participants. Distributing aggregate results is not a common practice, although recent surveys suggest that participants would like to receive aggregate results. In addition, there has been little ethical analysis of the practice. The authors explore the opportunities and challenges of returning aggregate results. Opportunities include affirming the value of research participation, informing participants about research being conducted, educated participants and the public about the research process, and building trust in research. Challenges include the complex intersection between individual and aggregate results, and logistical hurdles to implementation. The authors conclude by offering recommendations for releasing aggregate results to participants.

UK Biobank Prepares to Release Samples

For the past five years, the UK Biobank has collected medical, lifestyle and genetic data on 500,000 individuals, age 40-69. The goal of this large, comprehensive collection is to improve the health of future generations. The UK Biobank expects to begin releasing samples in March, and has made its sample and data access protocols available. Approved scientists from around the world will be able to request samples for health-related research that is in the public good. The resource is open access, scientists must register to use it, and scientists using the resource will be required to share their results.

Upcoming Meetings

5th Annual Biospecimen Research Network (BRN) Symposium 2012 meeting will be held February 22-23, in Bethesda, MD. Registration closes January 30, 2012.

ISBER (International Society for Biological and Environmental Repositories) 2012 Annual Meeting will be held May 15-18, in Vancouver, BC.


Edited by Liz Horn, Catherine Dokurno, and Sharon Terry.

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