caa a22 4500 445860804 CHVBK 20180317145442.0 cr unu---uuuuu 170323e20110901xx s 000 0 eng 10.1007/s00439-011-1021-x doi (NATIONALLICENCE)springer-10.1007/s00439-011-1021-x Population biobanks and returning individual research results: mission impossible or new directions? [Elektronische Daten] [Susan Wallace, Alastair Kent] Historically, large-scale longitudinal genomic research studies have not returned individual research results to their participants, as these studies are not intended to find clinically significant information for individuals, but to produce ‘generalisable' knowledge for future research. However, this stance is now changing. Commentators now argue that there is an ethical imperative to return clinically significant results and individuals are now expressing a desire to have them. This shift reflects societal changes, such as the rise of social networking and an increased desire to participate in medical decision-making, as well as a greater awareness of genetic information and the increasing ability of clinicians to use this information in health care treatment. This paper will discuss the changes that have prompted genomic research studies to reconsider their position and presents examples of projects that are actively engaged in returning individual research results. Springer-Verlag, 2011 Wallace Susan Department of Health Sciences, University of Leicester, 212a Adrian Building, University Road, LE1 7RH, Leicester, UK aut Kent Alastair Genetic Alliance UK, Unit 4D, Leroy House, 436 Essex Road, N1 3QP, London, UK aut Human Genetics Springer-Verlag 130/3(2011-09-01), 393-401 0340-6717 130:3<393 2011 130 439 https://doi.org/10.1007/s00439-011-1021-x text/html Onlinezugriff via DOI 1 review-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00439-011-1021-x text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Wallace Susan Department of Health Sciences, University of Leicester, 212a Adrian Building, University Road, LE1 7RH, Leicester, UK aut NATIONALLICENCE 700 1- Kent Alastair Genetic Alliance UK, Unit 4D, Leroy House, 436 Essex Road, N1 3QP, London, UK aut NATIONALLICENCE 773 0- Human Genetics Springer-Verlag 130/3(2011-09-01), 393-401 0340-6717 130:3<393 2011 130 439 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer