Research Use of Leftover Newborn Bloodspots: Attitudes of Canadian Geneticists Regarding Storage and Informed Consent Requirements
Ghebremichael, Musie S
Chudley, Albert E
Robinson, Walter M
Wilfond, Benjamin S
Solomon, Mildred Z
Genetics in medicine : official journal of the American College of Medical Genetics 2011 Apr; 13(4): 305-13
Leftover newborn spots can provide a powerful research tool as a population-wide DNA bank. Some provinces/states store them for more than 20 years; however, parents are usually not informed of the retention of leftover newborn spots. To examine the opinions of Canadian geneticists regarding permission for leftover newborn spots storage for research purposes and the associated risks, a web-based survey was distributed to all members of the Canadian College of Medical Geneticists with a valid e-mail address (n = 209) and completed by 78 respondents (37%).
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Hull, Sara Chandros; Sharp, Richard R.; Botkin, Jeffrey R.; Brown, Mark; Hughes, Mark; Sugarman, Jeremy; Schwinn, Debra; Sankar, Pamela; Bolcic-Jankovic, Dragana; Clarridge, Brian R.; Wilfond, Benjamin S. (2008-10)It is unclear whether the regulatory distinction between non-identifiable and identifiable information--information used to determine informed consent practices for the use of clinically derived samples for genetic ...