Obtaining blood samples (called bloodspots or NBS) from newborns is a longstanding practice in many countries. NBS are useful for diagnosing a number of diseases and congenital anomalies, as well as for paternity testing and even identification of the deceased, as was the recent case in Southeast Asia following the December 26 tsunami.
But their collection, storage and use also raises important ethical issues about consent, confidentiality, privacy and the possibility of discrimination, said Dr. Denise Avard, from the Université de Montréal, who was addressing an audience in the Department of Epidemiology and Community Medicine on March 1.
The data collected from provincial health ministries by Dr. Avard and her research team suggests that NBS practices vary widely from one part of the country to the next. Currently, only Quebec and Saskatchewan require explicit consent from the parent or child for use of bloodspots in research, she noted. Meanwhile, Canada seems to have a policy of blanket (or presumed) consent regarding the collection and storage of NBS specimens.
Dr. Avard believes that a clear national policy on the handling of NBS is needed. She strongly recommends that parents be informed that their offsprings’ bloodspots may be used anonymously for research. She also urges the creation of an ethics committee to approve the kinds of research permitted to use bloodspots.
