Seminar/Event Detail

Bio specimens Interest Group (BIG) Presentation: Informed Consent for Pediatric Biobanking

Date/Time: 27 March 2012, 1pm - 3pm EST
Speaker: David Wendler, Sara C. Hull, Carol J. Weil
Speaker Affiliation: NIH
Venue: Building 10 / Lipsett Amphitheatre, NIH & webcast
For more info: Helen Moore 301-496-0206

Description: There is considerable controversy in the research community about using stored pediatric biospecimens from grown donors, and specifically whether it is ethically appropriate to seek or waive consent for studies when pediatric donors reach the age of majority. Confusion about ethical and legal obligations and the complicated logistics of re-contacting pediatric donors and/or their families have plagued pediatric investigators despite the potential for advancing scientific knowledge, diagnostic capability, and therapeutic practice. We explore these issues in today’s presentation.

The speakers and their presentation titles are as follows:

Risks and the need for consent/permission. David Wendler, Ph.D., Head, Unit on Vulnerable Populations, Department of Bioethics, NIH Clinical Center.

Pediatric Biospecimens and Informed Consent when Children Reach Adulthood: Preferences and Practices. Sara C. Hull, Ph.D., Head, Unit on Ethics and Genetics, Department of Bioethics, NIH Clinical Center; Director, Bioethics Core, National Human Genome Research Institute, NIH.

Consent from Pediatric Biospecimen Donors at the Age of Majority: A Framework for Decision-Making. Carol J. Weil, J.D., Regulatory Affairs Advisor, Office of Biorepositories and Biospecimen Research, National Cancer Institute, NIH.

The presentation will be broadcast live at

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Supported by a grant from the National Institute on Minority Health and Health Disparities (U54MD007584), National Institutes of Health.