Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

On the Intersection of Privacy, Consent, Commerce
and Genetics Research

Jon F. Merz

Assistant Professor of Bioethics. Department of Medical Ethics and Center for Bioethics, University of Pennsylvania


US Regulations Relevant to Human Genetics Research

The use of human tissues in research has become a hot topic of debate in the biomedical research community since the mid-1990s. The primary issues raised concern the genetic information contained in stored tissues. Exploding genetic technology has expanded our ability to “read” and understand this information. Nonetheless, this information is not value neutral – it can be important to some people, it can be totally unwanted by others, and it can be harmful and injurious if disclosed or misused. The debate revolved around both issues of access to and use of tissues previously stored as well as informed consent to tissues collected from people for clinical and research purposes (and storage) in the future.1-3

Tissue repositories take many forms, from formal repositories to the informal storage of excess blood or tissue specimens in a clinicianresearcher’s freezer. Researchers have been collecting blood, tumors, and other human tissue samples from people for decades. One need only walk through any laboratories in a hospital or medical school complex to find collections of tissues. Further, archived pathology samples at the University of Pennsylvania and other institutions date back more than 100 years. A survey performed for the US National Bioethics Advisory Commission estimated that there are over 350 million human biosamples in storage throughout the United States.4 For example, numerous states have developed forensic DNA banks,5 and have stored millions of Guthrie cards from newborn screening programs developed over the last 4 decades.6 The U.S. military is banking blood from all soldiers for identification purposes with the

Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.

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