Patients’ Attitudes to Informed Consent for Genomic Research With Donated Samples

REFERENCES

• Brand, A.M.; Probst-Hensch, N.M. Biobanking for epidemiological research and public health. Pathobiology 2007, 74(4), 227–238.
   Google Scholar
• Guttmacher, A.E.; Collins, F.S. Genomic medicine—a primer. N Engl J Med 2002, 347(19), 1512–1520.
   PubMed Web of Science ®Google Scholar
• Weir, R.F., Olick, R.S. The Stored Tissue Issue. Biomedical Research, Ethics and Law in the Era of Genomic Medicine. Oxford, UK: Oxford University Press, 2004.
   Google Scholar
• Cambon-Thomsen, A. The social and ethical issues of post-genomic human biobanks. Nat Rev Genet 2004, 5(11), 866–873.
   PubMed Web of Science ®Google Scholar
• van Veen, E. B. Obstacles to European research projects with data and tissue: solutions and further challenges. Eur J Cancer 2008, 44(10), 1438–1450.
   PubMed Web of Science ®Google Scholar
• Hofmann, B. Broadening consent—and diluting ethics? J Med Ethics 2009, 35(2), 125–129.
   PubMed Web of Science ®Google Scholar
• Cambon-Thomsen, A.; Rial-Sebbag, E.; Knoppers, B.M. Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J 2007, 30(2), 373–382.
   PubMed Web of Science ®Google Scholar
• Ashburn, T.T.; Wilson, S.K.; Eisenstein, B.I. Human tissue research in the genomic era of medicine: balancing individual and societal interests. Arch Intern Med 2000, 160(22), 3377–3384.
   PubMed Web of Science ®Google Scholar
• Hoedemaekers, R.; Gordijn, B.; Pijnenburg, M. Solidarity and justice as guiding principles in genomic research. Bioethics 2007, 21(6), 342–350.
   PubMed Web of Science ®Google Scholar
• Knoppers, B.M.; Chadwick, R. Human genetic research: emerging trends in ethics. Nat Rev Genet 2005, 6(1), 75–79.
   PubMed Web of Science ®Google Scholar
• Petrini, C. “Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Soc Sci Med 2010, 70(2), 217–220.
   PubMed Web of Science ®Google Scholar
• Wendler, D. One-time general consent for research on biological samples. BMJ 2006, 332 (7540), 544–547.
   PubMed Web of Science ®Google Scholar
• Hansson, M.G.; Dillner, J.; Bartram, C.R.; Carlson, J.A.; Helgesson, G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol 2006, 7(3), 266–269.
   PubMed Web of Science ®Google Scholar
• Hoeyer, K.; Olofsson, B.O.; Mjorndal, T.; Lynoe, N. Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 2004, 32(3), 224–229.
   PubMed Web of Science ®Google Scholar
• Kettis-Lindblad, A.; Ring, L.; Viberth, E.; Hansson, M.G. Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Eur J Public Health 2006, 16(4), 433–440.
   PubMed Web of Science ®Google Scholar
• Kettis-Lindblad, A.; Ring, L.; Viberth, E.; Hansson, M.G. Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study. Scand J Public Health 2007, 35(2), 148–156.
   PubMed Web of Science ®Google Scholar
• Goldman, R.E.; Kingdon, C.; Wasser, J.; Clark, M.A.; Goldberg, R.; Papandonatos, G.D.; Hawrot E.; Koren, G. Rhode Islanders’ attitudes towards the development of a statewide genetic biobank. Per Med 2008, 5(4), 339–359.
   Web of Science ®Google Scholar
• Wang, S.; Fridinger, F.; Sheedy, K.; Khoury, M. Public attitudes regarding the donation and storage of blood specimens for genetic research. Community Genet 2001, 4, 18–26.
   PubMedGoogle Scholar
• McQuillan, G.; Porter, K.; Agelli, M.; Kington, R. Consent for genetic research in a general population: the NHANES experience. Genet Med 2003, 5, 35–42.
   PubMed Web of Science ®Google Scholar
• Mezuk, B.; Eaton, W.W.; Zandi, P. Participant characteristics that influence consent for genetic research in a population-based survey: the Baltimore epidemiologic catchment area follow-up. Community Genet 2008, 11(3), 171–178.
   PubMedGoogle Scholar
• Pulley, J.M.; Brace, M.M.; Bernard, G.R.; Masys, D.R. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank 2008, 9(1), 55–65.
   PubMed Web of Science ®Google Scholar
• Hull, S.C.; Sharp, R.; Botkin, J.; Brown, M.; Hughes, M.; Sugarman, J.; Schwinn, D.; Sankar, P.; Bolcic-Jankovic, D.; Clarridge, B. Patients’ views on identifiability of samples and informed consent for genetic research. Am J Bioeth 2008, 8(10), 62–70.
   PubMed Web of Science ®Google Scholar
• Treweek, S.; Doney, A.; Leiman, D. Public attitudes to the storage of blood left over from routine general practice tests and its use in research J Health Serv Res Policy 2009, 14(1), 13–19.
   PubMed Web of Science ®Google Scholar
• Hoeyer, K. Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity? Public Health Genomics 2009, 1–8.
   Google Scholar
• Helft, P.R.; Champion, V.L.; Eckles, R.; Johnson, C.S.; Meslin, E.M. Cancer patients’ attitudes toward future research uses of stored human biological materials. J Empir Res Hum Res Ethics 2007, 2(3), 15–22.
   PubMed Web of Science ®Google Scholar
• Vermeulen, E.; Schmidt, M.K.; Aaronson, N.K.; Kuenen, M.; van Leeuwen, F.E. Obtaining “fresh” consent for genetic research with biological samples archived 10 years ago. Eur J Cancer 2009, 45(7), 1168–1174.
   PubMed Web of Science ®Google Scholar
• Cunningham, J.; Dunbar, T. Consent for long-term storage of blood samples by Indigenous Australian research participants: the DRUID study experience. Epidemiol Perspect Innov 2007, 4(1), 7.
   PubMedGoogle Scholar
• Nys, H.; Fobelets, G. The regulation of biobanks in Spain. Law Hum Genome Rev 2008, 29, 169–188.
   Google Scholar
• Elger, B.S.; Caplan, A.L. Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework. EMBO Rep 2006, 7(7), 661–666.
   PubMed Web of Science ®Google Scholar
• Gracia, D. The intellectual basis of bioethics in Southern European countries. Bioethics 1993, 7(2–3), 97–107.
   Google Scholar
• Ruiz-Canela, M.; Valle-Mansilla, J.I.; Sulmasy, D.P. Researchers’ preferences and attitudes on ethical aspects of genomics research: a comparative study between the US and Spain. J Med Ethics 2009, 35(4), 251–257.
   PubMed Web of Science ®Google Scholar
• Matsui, K.; Kita, Y.; Ueshima, H. Informed consent, participation in, and withdrawal from a population-based cohort study involving genetic analysis. J Med Ethics 2005, 31(7), 385–392.
   PubMed Web of Science ®Google Scholar
• Madsen, S.M.; Holm, S.; Riis, P. Attitudes toward clinical research among cancer trial participants and non-participants: an interview study using a grounded theory approach. J Med Ethics 2007, 33(4), 234–240.
   PubMed Web of Science ®Google Scholar
• Gray, S.W.; Hlubocky, F.J.; Ratain, M.J.; Daugherty, C.K. Attitudes toward research participation and investigator conflicts of vinterest among advanced cancer patients participating in early phase clinical trials J Clin Oncol. 2007, 25(23), 3488–3494.
   PubMed Web of Science ®Google Scholar
• Beskow, L.M.; Dean, E. Informed consent for biorepositories: assessing prospective participants’ understanding and opinions. Cancer Epidemiol Biomarkers Prev 2008, 17(6), 1440–1451.
   PubMed Web of Science ®Google Scholar
• D’Alessio, D.; Allen, M. Selective exposure and dissonance after decisions. Psychol Rep 2002, 91(2), 527–532.
   PubMed Web of Science ®Google Scholar
• Cooke, S.; Crawford, G.; Parker, M.; Lucassen, A.; Hallowell, N. Recall of participation in research projects in cancer genetics: some implications for research ethics. Clin Ethics 2008, 3(4), 180–184.
   Google Scholar
• Appelbaum, P.S.; Roth, L.H.; Lidz, C.W.; Benson, P.; Winslade, W. False hopes and best data: consent to research and the therapeutic misconception. Hastings Cent Rep 1987, 17(2), 20–24.
   PubMed Web of Science ®Google Scholar
• Catania, C.; De Pas, T.; Goldhirsch, A.; Radice, D.; Adamoli, L.; Medici, M.; Verri, E.; Marenghi, C.; de Braud, F.; Nolè, F. Participation in clinical trials as viewed by the patient: understanding cultural and emotional aspects which influence choice. Oncology 2008, 74(3–4), 177–187.
   Google Scholar
• Jefford, M.; Moore, R. Improvement of informed consent and the quality of consent documents. Lancet Oncol 2008, 9(5), 485–493.
   PubMed Web of Science ®Google Scholar
• Sun, V.C.; Borneman, T. The oncology nurse's role in the informed consent process. Oncology 2007, 21(8 Suppl), 11–14.
   PubMedGoogle Scholar
• Common consent. Nature 2009, 460(7258), 933.
   Google Scholar
• Willison, D.J.; Steeves, V.; Charles, C.; Schwartz, L.; Ranford, J.; Agarwal, G.; Cheng, J.; Thabane, L. Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions? BMC Med Ethics 2009, 10, 10.
   PubMed Web of Science ®Google Scholar
• Clayton, E.W. Why the use of anonymous samples for research matters. J Law Med Ethics. 1995, 23(4), 375–377.
   PubMed Web of Science ®Google Scholar