A Consumer Perspective on Forensic DNA Banking |
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| Authors: | Sharon F. Terry M.A. Ph. D. Patrick F. Terry |
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| Affiliation: | President &CEO of Genetic Alliance, a coalition of over 600 disease specific advocacy organizations. She holds a master's degree in Religious Studies from Assumption College in Worcester, Massachusetts. She was recently given an honorary doctorate from Iona College in New Rochelle, NY for leading a community engagement on the ethical issues that haplotype mapping raises;. President of PXE International, a rare disease advocacy group. He has a high school diploma. He has a passion for consumer advocacy and accelerating research through systems change. |
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| Abstract: | This article describes a model of DNA banking that incorporates appropriate consumer influence on the design and use of DNA data banks. This model values input of consumer stakeholders in key decisions, including contracts between donors, researchers and the bank. |
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