caa a22 4500 605544557 CHVBK 20210128100932.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s10897-014-9781-9 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9781-9 Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies [Elektronische Daten] [Alice Virani, Holly Longstaff] Biobanks, collections of biospecimens with or without linked medical data, have increased dramatically in number in the last two decades. Their potential power to identify the underlying mechanisms of both rare and common disease has catalyzed their proliferation in the academic, medical, and private sectors. Despite demonstrated public support of biobanks, some within the academic, governmental, and public realms have also expressed cautions associated with the ethical, legal, and social (ELSI) implications of biobanks. These issues include concerns related to the privacy and confidentiality of data; return of results and incidental findings to participants; data sharing and secondary use of samples; informed consent mechanisms; ownership of specimens; and benefit sharing (i.e., the distribution of financial or other assets that result from the research). Such apprehensions become amplified as more researchers seek to pursue national and cross-border collaborations between biobanks. This paper provides an overview of two of the most contentious topics in biobank literature -informed consent and return of individual research results or incidental findings - and explores how a public health ethics lens may help to shed new light on how these issues may be best approached and managed. Doing so also demonstrates the important role that genetic counselors can play in the ongoing discussion of ethically appropriate biobank recruitment and management strategies, as well as identifies important areas of ongoing empirical research on these unresolved topics. National Society of Genetic Counselors, Inc., 2014 Biobanks nationallicence Bioethics nationallicence Incidental findings nationallicence Consent nationallicence Virani Alice Department of Medical Genetics, University of British Columbia, V6T 1Z2, Vancouver, BC, Canada aut Longstaff Holly Office of Research Ethics, Simon Fraser University, V5A1S6, Vancouver, BC, Canada aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 428-432 1059-7700 24:3<428 2015 24 10897 https://doi.org/10.1007/s10897-014-9781-9 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9781-9 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Virani Alice Department of Medical Genetics, University of British Columbia, V6T 1Z2, Vancouver, BC, Canada aut NATIONALLICENCE 700 1- Longstaff Holly Office of Research Ethics, Simon Fraser University, V5A1S6, Vancouver, BC, Canada aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 428-432 1059-7700 24:3<428 2015 24 10897