Changing perspectives in biobank research: From individual rights to concerns about public health regarding the return of results

European Journal of Human Genetics

Volumn 17, Issue 12, 2009, Pages 1544-1549

  Forsberg, Joanna Stjernschantz ^a   Hansson, Mats G ^a   Eriksson, Stefan ^a  

^a UPPSALA UNIVERSITY   (Sweden)

Author keywords

[No Author keywords available]

Indexed keywords

ACCESS TO INFORMATION; ALTRUISM; ARTICLE; CLINICAL RESEARCH; FUNDING; HEALTH CARE SYSTEM; HEALTH PROMOTION; HEALTH SERVICE; HUMAN; MASS SCREENING; MEDICAL RESEARCH; PRACTICE GUIDELINE; PRIORITY JOURNAL; PUBLIC HEALTH; SOCIAL WELFARE; WELLBEING;

ALTRUISM; BIOMEDICAL RESEARCH; DELIVERY OF HEALTH CARE; DUTY TO RECONTACT; HUMANS; PATIENT RIGHTS; PUBLIC HEALTH; THERAPEUTIC MISCONCEPTION; TISSUE BANKS;

EID: 70450235358     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2009.87     Document Type: Article

References (37)

1. Santella RM: Approaches to DNA/RNA extraction and whole genome amplification. Cancer Epidemiol Biomarkers Prev 2006; 15: 1585-1587.
2. Sjöholm MI, Dillner J, Carlson J: Assessing quality and functionality of DNA from fresh and archival dried blood spots and recommendations for quality control guidelines. Clin Chem 2007; 53: 1401-1407.
3. Hannelius U, Lindgren CM, Melén E, Malmberg A, von Dobeln U, Kere J: Phenylketonuria screening registry as a resource for population genetic studies. J Med Genet 2005; 42: E60.
4. Arnason V: CodMng and consent: moral challenges of the database project in Iceland. Bioethics 2004; 18: 27-49.
5. Caulfield T: Biobanks anT blanket consent: the proper place of the public good and public perception rationales. Kings Law J 2007; 18: 209-226.
6. Marchant GE: Property rights and benefit-sharing for DNA donors? Jurimetrics 2005; 45: 153-178.
7. Merz JF, Magnus D, Cho MK, Caplan AL: Protecting subjects' interests in genetics research. Am J Hum Gen 2002; 70: 965-971.
8. Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G: Should donors be allowed to give broad consent to future biobank research? Lancet Oncol 2006; 7: 266-269.
9. Helgesson G, Dillner J, Carlson J, Bartram CR, Hansson MG: Ethical framework for previously collected biobank samples. Nat Biotechnol 2007; 25: 973-976.
10. Hansson MG: Ethics and biobanks. Br J Cancer 2009; 100: 8-12.
11. Knoppers BM, Joly Y, Simard J, Durocher F: The emerge of an ethical duty to disclose genetic research results: International perspectives. Eur J Hum Genet 2006; 14: 1170-1178.
12. Quiad KA, Jessup NM, Meslin EM: Disclosure of genetic information obtained through research. Genet Test 2004; 8: 347-355.
13. Miller FA, Christensen R, Giacomini M, Robert JS: Duty to disclose what? Querying the putative obligation to return research results to participants. J Med Ethics 2008; 34: 210-213.
14. Schalowitz DI, Miller FG: Disclosing individual results of clinical research, implications of respect for participants. JAMA 2005; 294: 737-740.
15. Beskow LM, Burke W, Merz JF et al: Informed consent for population-based research involving genetics. JAMA 2001; 286 2315-2321.
16. Ravitsky V, Wilfond BS: Disclosing individual genetic results to research participants. Am J Bioeth 2006; 6: 8-17.
17. Fernandez CV, Weijer C: Obligations in offering to disclose genetic research results. Am J Bioeth 2006; 6: 44-46.
18. Fryer-Edwards K, FullertoW SM: Relationships with test-tubes: where's the reciprocity? Am J Bioeth 2006; 6: 36-38.
19. Dressler LG, Juengst ET: Theresholds and boundaries in the disclosure of individual genetic research results. Am J Bioeth 2006; 6: 18-20.
20. Meltzer LA: Undesirable implications of disclosing individual genetic results to research participants. Am J Bioeth 2006; 6: 28-30.
21. Parker LS: Best laid plans for offering results go awry. Am J Bioeth 2006; 6: 22-23.
22. Ossorio PN: Letting the gene oAt of the bottle: a comment on returning individual research results to participants. Am J Bioeth 2006; 6: 24-25.
23. Kristman VL, Kreiger N: Information disclosure in population-based research involving genetics: A framework for the practise of ethics in epidemiology. Ann Epidemiol 2008; 18: 335-341.
24. Wade CH, Kalfoglou AL: When do genetic researchers have a duty to recontact study participants? Am J Bioeth 2006; 6: 26-27.
25. Hansson MG: For the safety and benefit of current and future patients. Pathobiology 2007; 74: 198-205.
26. Council for International Organizations of Medical Sciences: International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: CIOMS, 2002.
27. Henderson GE, Churchill LR, Davis AM et al: Clinical trials and medical care: Defining the therapeutic misconception. PLoS Med 2007; 4: E324.
28. Clayton EW, Ross LF: Implications of disclosing individual results of clinical research. JAMA 2006; 295: 37.
29. Bauchner H, Vinci R: What have we learnt from the Alder Hey affair? BMJ 2001; 322: 309-310.
30. ReveCby SM: Tuskegee: could it happen again? Postgrad Med J 2001; 77: 553-554.
31. Evans HM: Should patients be allowed to veto their participation in clinical research? J Med Ethics 2004; 30: 198-203.
32. Evans HM: Do patients have duties? J Med Ethics 2007; 33: 689-694.
33. Rhodes R: Rethinking research ethics. Am J Bioeth 2005; 5: 7-28.
34. Chadwick R, Berg N: Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet 2001; 2: 318-321.
35. Harris J: Scientific research is a moral duty. J Med Ethics 2005; 31: 242-248.
36. Whitlock EP, Garlitz BA, Harris EL, Beil TL, Smith PR: Screening for hereditary hemochromatosis: A systematic review for the U.S. Preventive Services Task Force. Ann Intern Med 2006; 145: 209-223.
37. Andermann A, Blancquaert I, Beauchamp S, Déry V: Revisiting Wilson and Jungner in the genomic age: A review of screening criteria over the past 40 years. Bull World Health Organ 2008; 86: 317-319.