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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
February 30, 2011 Issue #12


Biobanking in the News

Ethicists and medical researchers from the University of Washington and Group Health Research Institute are recommending a new approach that treats participants as stakeholders in research. Currently, researchers assume that participants either do not want feedback or find one-time consent acceptable. These presumptions may be contrary to participants’ actual preferences and more care must be taken in considering the participants’ viewpoints and values when sharing their data. Re-engaging research volunteers, when feasible and practical, can be a valuable investment in science.

Read the article.

A Decade with the Human Genome Sequence: Charting a Course for Genomic Medicine

On February 11, 2011, NHGRI hosted a daylong symposium to discuss how genomics impacts individuals, communities, and societies. Amy Harmon, a journalist from the New York Times, spoke on The Public Place in Personal Genomics and urged scientists to engage in more dialogue and communication with participants, patients, families, and communities. Sharon Terry, President and CEO of Genetic Alliance, led a panel discussion on Exploring your Genetic Blueprint that shared a variety of personal experiences with genome mapping and discussed the implications that genetics and data collection has on individuals.

Watch other lectures from the conference.

Registry Boot Camp – Last Chance to Register

Genetic Alliance Registry Boot Camp will be held on March 7, 2011, in New York. The interactive workshop will address best practices for working with advisors, questionnaire design, tools to assess registry vendors, a review of organizational operations and resources, strategies for good governance, and tips for recruitment and retention. Participation is limited to 20 attendees, and only a few spots remain.

View the agenda and register.

Genetic Alliance’s 25th Anniversary

Join Genetic Alliance in celebrating our 25th year of innovation in genetics and health. Throughout the year, we will host a variety of activities to share our story and engage the community. Join us for salons, webinars, innovator videos, or our annual conference. We invite you to reflect on your own personal experiences of innovation so that we can work together to create novel solutions.

Upcoming Meetings

The National Cancer Institute Office of Biorepositories and Biospecimen Research (OBBR) will convene the 4th Annual Biospecimen Research Network (BRN) Symposium: Advancing Cancer Research Through Biospecimen Science, on March 28-29, 2011. A broad range of stakeholders, including researchers, clinicians, industry representatives, and patient advocates, will discuss the current state of biospecimen collection and integrity and goals for the future.

The International Society for Biological and Environmental Repositories (ISBER) presents the 2011 Annual Meeting: Impact and Public Benefits of Biorepositories, May 15-18, 2011 in Arlington, VA. Session topics include the impact of biorepositories in clinical trials and prospective studies, innovative technologies, valuing the benefit of biorepositories to stakeholders, and biorepository governance models and returning research results to participants.


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

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