Differentiating and evaluating common good and public good: Making implicit assumptions explicit in the contexts of consent and duty to participate

Public Health Genomics

Volumn 15, Issue 5, 2012, Pages 285-292

  Bialobrzeski, A ^a   Ried, J ^a   Dabrock, P ^a  

^a UNIVERSITY OF ERLANGEN NUREMBERG   (Germany)

Author keywords

Biobank; Common good; Communitarianism; Consent; Public good; Public trust

Indexed keywords

ARTICLE; BIOBANK; COMMON GOOD; CONCEPTUAL FRAMEWORK; FUNDING; GOVERNMENT; HEALTH CARE FACILITY; HUMAN; INFORMED CONSENT; MEDICAL ETHICS; MEDICAL RESEARCH; NOMENCLATURE; PERSONAL AUTONOMY; PRIORITY JOURNAL; PUBLIC GOOD; PUBLIC HEALTH; SOCIETY; THINKING;

BIOLOGICAL SPECIMEN BANKS; BIOMEDICAL RESEARCH; CONFIDENTIALITY; HUMANS; INFORMED CONSENT; PATIENT PARTICIPATION; PUBLIC HEALTH; SOCIAL JUSTICE; TRUST;

EID: 84862840462     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000336861     Document Type: Article

References (35)

1. Knoppers BM: Of genomics and public health: building public 'goods'? CMAJ 2005; 173: 1185-1186. (Pubitemid 41637818)
2. HUGO Ethics Committee: Statement on Human Genomic Databases 2002. http://www.hugo-international.org/img/genomic-2002.pdf (accessed December 29, 2011).
3. Weale A: Public interest; in Craig E (ed): Routledge Encyclopedia of Philosophy. London, Routledge, 1998. http://www.rep.routledge. com/article/S050SECT3Cf (accessed December 29, 2011).
4. Ritter J (ed): Historisches Wörterbuch der Philosophie, Art. 'Gemeinwohl'. Darmstadt, Wissenschaftliche Buchgesellschaft, 1974, vol 3, pp 248-258.
5. Kaul I, Grunberg I, Stern MA (eds): Global Public Goods - International Cooperation in the 21st Century. Oxford, Oxford University Press, 1999.
6. Knoppers BM, Fecteau C: Human genomic databases: A global public good? Eur J Health Law 2003; 10: 27-41. (Pubitemid 36576222)
7. Cornes R, Sandler T: The Theory of Externalities, Public Goods, and Club Goods. Cambridge, Cambridge University Press, 1996.
8. Chadwick R, Wilson S: Genomic databases as global public goods? Res Publica 2004; 10: 123-134.
9. Britannica Academic Edition: Http://www.britannica.com/EBchecked/topic/ 1366457/communitarianism (accessed December 31, 2011).
10. Chadwick R, Berg K: Solidarity and equity: New ethical frameworks for genetic databases. Nat Rev Genet 2001; 2: 318-321. (Pubitemid 33674780)
11. Knoppers BM, Chadwick R: Human genetic research: Emerging trends in ethics. Nat Rev Genet 2005; 6: 75-79. (Pubitemid 39657899)
12. Lunshof JE, Chadwick R, Church GM: Hippocrates revisited? Old ideals and new realities. Genomic Med 2008; 2: 1-3.
13. Lunshof JE, Chadwick R, Vorhaus DB, Church GM: From genetic privacy to open consent. Nat Rev Genet 2008; 9: 406-411. (Pubitemid 351556065)
14. Chadwick R: The communitarian turn: Myth or reality? Camb Q Healthc Ethics 2011; 20: 546-553.
15. Hallmans G, Vaught JB: Best practices for establishing a biobank; in Dillner J (ed): Methods in Biobanking. New York, Humana Press, 2011, pp 241-260.
16. WMA Declaration of Helsinki. http://www.wma.net/en/30publications/ 10policies/b3/(accessed December 31, 2011).
17. Otlowski M: Developing an appropriate consent model for biobanks: In defence of 'broad' consent; in Kaye J (ed): Principles and Practice in Biobank Governance. Farnham, Ashgate, 2009, pp 79-92.
18. Hansson MG: The need to downregulate: A minimal ethical framework for biobank research; in Dillner J (ed): New York, Humana Press, 2011, pp 39-59.
19. Sass HM: A 'contract model' for genetic research and health care for individuals and families. Eubios J Asian and Intern Bioethics 2001; 11: 130-132.
20. Hofmann B: Broadening consent and diluting ethics? J Med Ethics 2009; 35: 125-129.
21. Chalmers D: Genetic research and biobanks; in Dillner J (ed): Methods in Biobanking. New York, Humana Press, 2011, pp 241-260.
22. Nomper A: Open Consent - A new form of informed consent for population genetic databases; thesis Tartu, 2005. http://dspace. utlib.ee/dspace/bitstream/ handle/10062/818/nomper.pdf?sequence=5 (accessed December 29, 2011).
23. Van der Graaf R, Van Delden JJM: Exploring an alternative to informed consent in biobank research; in Lenk C, Hoppe N, Beier K, Wiesemann C (eds): Human Tissue Research. A European Perspective on the Ethical and Legal Challenges. Oxford, Oxford University Press, 2011, pp 15-23.
24. Caulfield T, Upshur RE, Daar A: DNA databanks and consent: A suggested policy option involving an authorization model. BMC Med Ethics 2003; 4:E1.
25. Gordijn B, Pijnenburg M: Does an appeal to the common good justify individual sacrifices for genomic research? Theor Med Bioeth 2006; 27: 415-431. (Pubitemid 44725404)
26. Knoppers BM, Fortier I, Legault D, Burton P: The public population project in genomics (P3G): A proof of concept? Eur J Hum Genet 2008; 16: 664-665. (Pubitemid 351753361)
27. Beyleveld D: Data protection and genetics: Medical research and the public good. King's Law J 2007; 18: 275-289.
28. Chan S, Harris J: Free riders and pious sons - why science research remains obligatory. Bioethics 2009; 23: 161-171.
29. Forsberg JS, Hansson MG, Eriksson S: Changing perspectives in biobank research: From individual rights to concerns about public health regarding the return of results. Eur J Hum Genet 2009; 17: 1544-1549.
30. Caulfield T, Kaye J: Broad consent in biobanking. Reflections on seemingly insurmountable dilemmas. Med Law Inter 2009; 10: 85-100.
31. World Health Organization Human Genetics Programme: Proposed international guidelines on ethical issues in medical genetics and genetic services. Report of a WHO meeting on ethical issues in medical genetics. 1998. http://www.who.int/genomics/publications/en/ethicalguidelines1998.pdf (accessed March 22, 2012).
32. Deschênes C, Cardinal G, Knoppers BM, Glass K: Human genetic research, DNA banking and consent: A question of 'form'? Clin Genet 2001; 59: 221-239. (Pubitemid 32318388)
33. Arnason V: Coding and consent: Moral challenges of the database project in Iceland. Bioethics 2004; 18: 27-49. (Pubitemid 38453590)
34. Caulfield T: Biobanks and blanket consent: the proper place of the public good and public perception rationales. King's Law J 2007; 18: 209-226
35. European Commission (ed): Europeans and biotechnology in 2010. Winds of change? Eurobarometer 24537. Luxembourg, 2010. ht tp://ec.europa.eu/publ ic-opinion/archives/ebs/ebs-341-winds-en.pdf (accessed March 22, 2012).