Informed Consent in Direct-to-Consumer Personal Genome Testing: The Outline of A Model between Specific and Generic Consent
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Bioethics 27 (3):343-351 (2013)
Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings
|Keywords||direct‐to‐consumer generic consent specific consent personal genome testing informed consent genetic testing autonomy|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Eline Bunnik, Maartje Schermer & A. Cecile Janssens (2011). Personal Genome Testing: Test Characteristics to Clarify the Discourse on Ethical, Legal and Societal Issues. [REVIEW] BMC Medical Ethics 12 (1):11-.
Sheila McLean (2010). Autonomy, Consent and the Law. Routledge-Cavendish.
Martin Gunderson, David J. Mayo & Frank S. Rhame (1996). Routine HIV Testing of Hospital Patients and Pregnant Women: Informed Consent in the Real World. Kennedy Institute of Ethics Journal 6 (2):161-182.
O. O'Neill (2001). Informed Consent and Genetic Information. Studies in History and Philosophy of Science Part C 32 (4):689-704.
Rebecca Bennett (2001). Antenatal Genetic Testing and the Right to Remain in Ignorance. Theoretical Medicine and Bioethics 22 (5):461-471.
Deborah Bowman (2011). Informed Consent: A Primer for Clinical Practice. Cambridge University Press.
M. Sheehan (2011). Can Broad Consent Be Informed Consent? Public Health Ethics 4 (3):226-235.
Jukka Varelius (2010). On Taylor's Justification of Medical Informed Consent. Bioethics 26 (4):207-214.
Cheryl Berg & Kelly Fryer-Edwards (2008). The Ethical Challenges of Direct-to-Consumer Genetic Testing. Journal of Business Ethics 77 (1):17 - 31.
Katherine Gehringer (2003). Informed Consent: Hospitals Must Obtain Informed Consent Prior to Drug Testing Pregnant Patients. Journal of Law, Medicine and Ethics 31 (3):455-457.
John A. Robertson (2003). The $1000 Genome: Ethical and Legal Issues in Whole Genome Sequencing of Individuals. [REVIEW] American Journal of Bioethics 3 (3):35-42.
David Shaw (2009). Prescribing Placebos Ethically: The Appeal of Negatively Informed Consent. Journal of Medical Ethics 35 (2):97-99.
Holly Tabor & Maureen Kelley (2009). Challenges in the Use of Direct-to-Consumer Personal Genome Testing in Children. American Journal of Bioethics 9 (6):32-34.
Shaun D. Pattinson (2009). Consent and Informational Responsibility. Journal of Medical Ethics 35 (3):176-179.
Neil C. Manson (2007). Rethinking Informed Consent in Bioethics. Cambridge University Press.
Added to index2012-11-10
Total downloads12 ( #150,141 of 1,692,642 )
Recent downloads (6 months)4 ( #57,655 of 1,692,642 )
How can I increase my downloads?